NR Times issue 20

ISSUE 20 QUARTERLY

STEMMING THE RECRUITMENT CRISIS

WHAT’S NEXT FOR NEURO TECH?

As the staffing shortfall grows further, what can be done?

We look at the rise of technology into 2022 and beyond

How Fourier Intelligence is sharing its knowledge and technology through key strategic partnerships around the world

Expanding excellence in rehab

robotics

RRP £9.99

ADVERTISEMENT

NRT-2021

S E E N R T I M E S . C O . U K F O R T H E V E R Y L AT E S T N E U R O - R E H A B N E W S A N D O P I N I O N

INTERVIEW

EDITOR'S NOTE What lies ahead for 2022?

As we round off another year in which COVID-19 was an ever-present feature - often lurking in the background as we attempted to resume something like our prepandemic lives, yet never far away - we enter 2022 with the unwelcome addition of Omicron.

At the time of writing, Omicron looks like it may loom large over Christmas and into the new year, and many fear may put paid to long-awaited social plans and a festive season to remember with loved ones. We can only hope this is not the case, but the situation is developing rapidly.

While a new strain of COVID is hardly how we wanted to start 2022, there is still much to look forward to - the recent excellent news about the Government granting the development of an ABI strategy being one big positive to take into the new year.

The announcement follows years of campaigning by a host of charities and campaigners, including MP Chris Bryant, who proposed his ABI Bill to ensure brain injury survivors received more joined-up and accessible support by way of a strategy. The day before its second reading in Parliament, the Government announced it would oversee its development.

Our congratulations and thanks must go to Mr Bryant

and the many other campaigners and charities including UKABIF, Headway, The Children’s Trust and the Child Brain Injury Trust whose dedication to this cause will effect real change for survivors and families across the country.

Furthermore, this issue of NR Times shines a light on the innovation happening across the globe to improve the lives of those with neurological conditions.

From Fourier Intelligence, transferring its knowledge and expertise across the globe from the Far East; to Neurovine, whose ability to chart concussion on a screen is set to spread globally from its native Canada; through to the work of the World Federation for Neurorehabilitation, which has improved lives over the past 25 years.

The work to improve lives and futures is ongoing, and we remain committed to giving a voice and recognition to those dedicated to this effort.

From all at NR Times, we wish you a happy festive season and our very best wishes to you and your family for a healthy and prosperous 2022.

D E B O RA H JO HN S O N EDITOR, NR TIMES Deborah@aspectpublishing.co.uk

ANDREW MER N I N FOUNDER / MD andrew@aspectpublishing.co.uk

CH LO E H AYWA RD SALES chloe@aspectpublishing.co.uk

PA U L N E W TO N OPERATIONS MANAGER paul@aspectpublishing.co.uk

DEB ORAH J O H N SO N EDITOR deborah@aspectpublishing.co.uk

R O BER T DA LE DIGITAL robert@aspectpublishing.co.uk

GARY WIL DI N G HEAD OF SALES gary@aspectpublishing.co.uk

SO P H I E D IN S DA LE DESIGN

P U B LI S HE D B Y ASPECT PUBLISHING LTD 11 Lansdowne Terrace, Newcastle Upon Tyne, NE3 1HN. Registered company in England and Wales (no. 10109188).

Collaborative content

Sponsored features are created in partnership with our sector partners whose support ensures we can continue serving our readership.

03

NRTIMES

CONTENTS 0 6 E XPAND ING EXCEL L ENCE I N R EH AB TECH How Fourier is growing its global presence through international partnerships

18 G OVE RNM E NT G RANTS A B I S T RATE GY Longstanding efforts to secure more support for survivors finally acknowledged

2 4 C RISIS IN CA R E R ECR UI TM ENT What can be done to ensure the sector can continue to support those who need it?

NRTIMES

30 CONTINUING TO ADVANCE NEURO-REHAB GLOBALLY How the WFNR helped to redefine what the specialism means and how it its is regarded

04

CONTENTS

VIRTUALLY SUCCESSFUL 5 8 VIRTUALLY S U CC ESSF U L H OW D IGITAL IS C H ANGING RE HAB

6 6 M A K ING T HE INVIS IB L E VIS IB L E

First-of-its-kind conference looks at how therapy can combine hands-on with virtual

How concussion can now be articulated via tech, empowering patients as never before

8 8 WH AT’S NEXT FOR REH AB TECH?

96 I’ D S E E N A N AWAK E C RA NIOTO M Y O N G RE Y ’ S A NATO M Y

Expert analyst Andrew Elder tells NR Times what lies ahead in 2022 and beyond

One patient discusses how surgery for a brain tumour was never a role she imagined would happen to her

05

NRTIMES

COVER STORY

Left: Alex Gu, Right: Zen Koh

NRTIMES

06

COVER STORY

Sponsored feature

Sharing technology and knowledge with the world With the expansion of Fourier Intelligence continuing at pace globally, and its rehabilitation robotics being used increasingly around the world, its international presence has never been stronger.

Professor Denny Oetomo

But the true international nature of its business goes much further than the fact its technology is used around the globe.

Through partnering with key locations and teams around the world, tech unicorn Fourier is showing what is possible by working alongside and developing the expertise and resources beyond its bases in Shanghai, Malaysia and recently-acquired headquarters in Zhangjiang Science City, known as the ‘Silicon Valley of the East’.

07

And through such knowledge transfer between experts equally committed to delivering the means to improve people’s lives, Fourier’s mission to change what is possible in rehab robotics only increases.

Its partnership with the University of Melbourne, finalised in 2019, is a key component in its international expansion. Through the creation of the Robotics Laboratory, a joint initiative between the University and Fourier, the opportunities for innovation and with it, opportunities for aspiring talent from across the continent - are being channelled into increasing rehab provision on an international scale.

Led by Professor Denny Oetomo, a world-renowned figure in robotics, it played a leading role in the development and launch of the ArmMotus™ EMU - Fourier’s latest and next-gen robot, hailed as having the potential to redefine neuro-rehab.

Working closely with Fourier experts in Singapore and Shanghai, the partnership enabled the EMU project, which had been in development for two years, to come to fruition and act as a beacon of what could be achieved through close co-operation on an international basis.

And with a growing portfolio of robots - more than 20 are already commercially available, accruing over 10 million usage hours so far, with a further 100 in development - and more recently-established global partnerships including with the Shirley Ryan AbilityLab in Chicago propelling its presence in the United States, Fourier’s success in Melbourne is clearly a winning formula.

“I have always believed in a collaborative approach, there are no barriers or boundaries with technology, we are all humans on the same planet,” says Zen Koh, co-founder of Fourier Intelligence.

“It is vital that we work with universities and hospitals to develop our technology further, for the benefit of patients and their rehabilitation.

NRTIMES

COVER STORY

NRTIMES

08

COVER STORY

Left: Alex Gu, Right: Zen Koh

“The partnerships with Melbourne and Shirley Ryan AbilityLab are our first success stories and this is just the beginning. There will be more collaboration and hopefully, by working together, humankind can push the boundaries further.

“With Melbourne, this success sends a strong signal of how well we can work collaboratively, we can offer a very attractive arrangement - IP, technology, the strength of the Fourier supply chain, high-quality manufacturing at a low price.

“We have that capability already in place - for others it would take years to develop, it may be successful, it may not. Fourier is sending a very strong signal to the world that we welcome such collaboration and can, through technology and knowledge transfer, bring ideas into reality.”

For Prof Oetomo, the formation of the partnership works very well on a practical level.

“This agreement has enabled us to work together on something much more than just a project, more than a Memorandum of Understanding. In this case, we signed an umbrella agreement which built a working relationship and a commitment to work together,” says Prof Oetomo, who studied as a postgraduate with Zen.

09

“This included an IP agreement, the ability to design code, to collaborate on design. We ensured we eliminated a lot of the proprietary red tape from the very beginning. We’re all in this for the same reason - to help people’s lives - so we want to make doing that as simple as possible.

“So now, if we are working together on design and we need a part modifying, we can ask for the code for that. Or if they’re working on something and it’s easier to modify that in Shanghai, we can send the code.

“We have built an open relationship, where we know and understand each other on both sides. Fourier are not so much a startup anymore, they’re a strong and successful partner who support us at the University.”

And through its close collaboration across the miles, its first project, the ArmMotus™ EMU, has become a key new addition to the global neurorehab market.

As the world’s first 3D back-drivable upper limb rehabilitation robot - equipped with clinical intelligence and providing personalised therapy, technology-based solutions, coaching capabilities and remote monitoring - industry figures believe this has set a new benchmark for intelligent rehabilitation devices.

NRTIMES

COVER STORY

The partnerships with Melbourne and Shirley Ryan AbilityLab are our first success stories and this is just the beginning.

“Current neurorehabilitation models primarily rely on extended hospital stays or regular therapy sessions which require close physical interactions between rehab professionals and patients,” says Zen. “The ongoing COVID-19 pandemic situation has challenged this model and as a result, many neurological patients are not receiving sufficient therapy. There is an urgent need to rethink conventional neurorehabilitation therapy.

“The new ArmMotus™ EMU provides that solution.”

The project, led by Prof Oetomo, saw close collaboration between teams in Singapore and Melbourne.

“What we do is so niche, it’s not well catered for, and we saw the opportunity here. The potential for what we can do has not yet been fully realised,” he says.

“This is 3D movement which can accentuate vertical motion, and the facility now exists to collect the information to support that. Combined with the appropriate gravity compensation of the weight of the arm, patients with weak or little arm function can able to carry out therapy without exertion.

“We did our research on this and have created something that addresses the points clinicians raise, such as they don’t have the time to work inaccessible equipment, or it’s too heavy to manage physically. If they don’t use it, then rehab for their patients is not going to happen.

“Something else we will be working on collaboratively is a training programme in how best to use our robots for clinicians, how you can use them to be more targeted and more useful in interdisciplinary work.

“Clinicians are our close colleagues as leading professionals in their field but we don’t want them to get this new technology and then have to read a robotic manual on how to use it, they want a clinical one. So that is another project we are working on together.”

With the success of the Robotics Laboratory partnership showing the potential of international working, the adoption of technology during the past two years in particular has shown many other businesses how effectively global working and cooperation can be done.

NRTIMES

Alex Gu

“The pandemic has indirectly propelled researchers to work via video conferencing, in the past this has not been fully embraced, but for us it is working well between our teams in Singapore, Shanghai, Zurich and America,” says Zen. “Previously, we would have had people from all over the world coming to a single location. By using technology, we can move forward quicker than expected, video conferencing is very useful in discussions, negotiations and brainstorming although it is very important to continue to meet face to face for the final decisions, to touch the products, feel them and understand them.

“But working remotely will continue to happen and I do think this has been a very, very positive point from the last two years,

10

COVER STORY

Zen Koh

despite the pandemic, and we have all been able to move forward more innovatively.”

“Neuro-rehab tech is something we are working on as a whole world, and today the world is pretty small, there is a lot of online communication,” says Prof Oetomo.

“Our partnership would have happened anyway, we did a lot of face to face visits at first back in 2018 and 2019 to build the relationship, but the use of technology has helped.

“We have a network of close colleagues and we all talk with each other and share common equipment. It is much easier to run a multi-site test with the same robot and the same programme, then it can be more repeatable and easily comparable.

“A lot of facilities were already out there, the technology infrastructure was there, there was a lot of cloud storage for our drawings which we were using before the pandemic - but for people all over the world, the circumstances forced them to use it.

“It may not necessarily be more enjoyable to always communicate virtually, or attend conferences that way, but it is much easier and that has a positive effect for sure. In the past, you’d invite a person to come out to Australia, and it would be a three or four day trip. Now, you can just dial them in and work around their time zone and that works fine.

“People are now more accepting of these practices, which I think will benefit joint working for everyone, including ourselves.”

11

NRTIMES

NRNEWS

The UK’s biggest not-for-profit brain injury service provider is recruiting into roles throughout its therapy offering across the UK, as it looks to increase neuro-rehab provision amid soaring demand.

The Disabilities Trust is looking to bring in new clinical resource to many of its 13 inpatient centres across England, Scotland and Wales, to further deverop its offering to patients.

Under the supervision of new clinical director Dr Rudi Coetzer, a consultant neuropsychologist who joins the trust after 23 years with the NHS, strategic new appointments are being made across its neuropsychology, speech and language therapy, occupational therapy and physiotherapy services.

Investment continues to be made in its centres across the UK, with the trust recently securing planning permission to create a new state-of-the-art brain injury hospital in York, relocating from its current site in the city and retaining 145 healthcare jobs.

The trust has a strong reputation for its ability to return patients to the community, with its discharge rate standing at 97 per cent for 2019/20 - including 73 per cent who were discharged to more independent settings. It is keen to build its provision further to continue to deliver the best possible outcomes to patients.

NRTIMES

“We want to find the best people who can improve the lives of our service users, we are looking unit by unit to find the right people. We want to invest in the best staff who can deliver the best care to our patients,” says Dr Coetzer.

“There are a limited number of beds but infinite demand, and while bricks and mortar is one thing, it is our staff who are making the difference. Before I joined the Disabilities Trust and was working in the NHS, one of the key reasons I referred patients here was because of its outcome measures, one of the most important being discharge rates. This is achieved by the work of the fantastic team.

“We know there are a finite number of clinicians, but we are keen to find people who want to join us who can help develop us as a trust, and who we can support and develop in their roles.

Staff development is crucial to us and we are committed to giving this development.”

The trust has a strong neurobehavioural specialism, with an emphasis on the discipline in several of its centres, and Dr Coetzer plans to update its existing model to ensure it is following the very latest in evidence-based practice.

“We will build in the latest research and clinical research and work with colleagues to make sure this is the right model for us now,” says Dr Coetzer, also an honorary professor at Bangor University.

“The model was first developed ten or 20 years ago, and while it has been revised over that time and is a great model, as with any treatment, there have been developments and advances. The creation of this updated model makes this a very good time for the right people with energy and enthusiasm to join and grow alongside us.”

12

NRNEWS Three quarters of people living with spinal cord injury are concerned at accessing frontline healthcare due to the lack of specialist knowledge from health professionals about their condition, a new report has revealed.

The What Matters report shows that 77 per cent of people with SCI cite a lack of health professionals’ knowledge of bowel management as a cause of concern when seeking medical attention. Poor understanding of bladder management among health professionals is also a barrier to care, with 75 per cent of respondents citing it as a concern.

The report, from the Spinal Injuries Association, reveals a number of other concerns of people living with SCI, mainly in terms of access to specialist professionals who understand their needs.

What Matters involved 476 people completing an extensive survey, and 40 followed up with online focus groups, to give a true picture of the reality they face in matters relating to their body, mind and daily life.

Mental health concerns were prevalent and grew during the pandemic. Almost half of respondents said poor mental health was one of the biggest barriers preventing them from leading a fulfilled life, with mental health support difficult to access.

Further, 42 per cent of people pointed to access to counsellors who understand spinal cord injuries, from the point of injury and after discharge, as crucial.

In terms of daily life, concerns about care needs, accessing benefits and social care support were raised by 70 per cent of people. Eligibility for NHS care packages was highlighted as a primary concern for many, while others voiced their fears about financial hardship caused by paying for a lifetime need for carers, wheelchairs and home adaptations.

Employment was also a key issue in the report, with over half - 55 per cent - seeing access to employment as their biggest barrier to leading an equal life.

One person quoted in the report said: “I feel worthless and on the scrapheap since my injury five years ago. I don't fit in anymore. I'd like some kind of employment scheme, but now due to COVID redundancies there will be even less chance of gaining employment."

Nik Hartley, CEO of the Spinal Injuries Association (SIA), said the charity is committed to changing the reality for the SCI community and pushing for urgent action on the issues raised.

He said the report “exposes the gaping valley between what people without an SCI or disability would take for granted – and

13

what someone with an SCI should simply not have to face”.

“The most striking point the survey and focus groups have revealed is, whatever the subject, it comes down to a lack of access; to services, to medical expertise, to mental health support, to information, to physiotherapy,” he said. “[This includes] even the most fundamental health priorities - bowel and bladder management - important to almost all respondents. Shockingly 40 per cent of people told us their GP didn’t understand bowel management.

“Perhaps most startling was how many voiced their fears about ever going to hospital and being cared for by medical professionals with little or no SCI specific knowledge. Almost half the respondents told of general health services not understanding the clear and present danger of pressure ulcers as an SCI person.

“Using this research as our foundation and catalyst for change, SIA commits to re-doubling its services in the key ‘body, mind and life’ issues and, crucially, to build more research, advocacy and campaigning around each to fight for the changes that the SCI community so desperately needs.”

NRTIMES

NRNEWS A new technology-led neurorehabilitation centre has opened to offer high-intensity programmes of physiotherapy to advance the recovery of people with neurological injury or illness from across the UK. The Rehab Physio has created a specialist centre of excellence which uses an array of robotics and virtual reality rehab technology to up the ante on traditional neurophysio programmes.

The new 3,500sq ft centre, in Wirral, Merseyside, marks a £400,000 investment for the business and its second expansion into new premises, and builds on The Rehab Physio’s growing reputation and status in the neuro-rehab sector since its creation in 2011.

Its commitment to high-intensity programmes to maximise outcomes has seen it attract clients from well beyond its native North West, with its new centre now seeing interest from across the UK. Now, with investment in its new suite of technology, which includes a number of Tyromotion devices, The Rehab Physio aims to increase the breadth of neurorehabilitation opportunities for clients even further.

“We known from research how vital intensity and volume is, and we can achieve new levels with this new technology. It isn’t possible to replicate that through traditional physiotherapy,” says Chris Wynne, who spent a decade in the NHS before starting The Rehab Physio.

“We’ve been running clinical sessions for seven or eight years now and technology has advanced greatly in that time, we’ve seen the impact it has made and the evidence that shows the impact of volume and repetition, which is why we decided to create this centre.

“Technology allows us to work in a different way, so we can be delivering the intensity of rehabili-tation that people want and need. We can massively increase what they can achieve even in an hour.”

The Rehab Physio has created new 80-hour packages for clients, which are bespoke to their needs, and can be completed during a specially-created programme of between four and seven weeks and will see clients receiving a minimum of four hours of specialist neurophysio each day.

The business has also partnered with local hotels to offer a ‘residential’ programme for those travelling from across the UK. “We have tried to create programmes which are suitable to offset against day to day life, for those people locally who want to spend the time focused on their rehab while they’re here and

NRTIMES

go home, and also for those from further afield who really want to dedicate themselves to it,” says Chris.

“Really intense rehabilitation does take commitment so we want to support people to achieve the outcomes they want as much as we can. We’re keen to be as far reaching as possible so as many people can come to us from across the UK. “Opportunities for this level of rehabilitation can be limited by a lot of things, but we are trying to offer something to everyone, regardless of budget.”

14

INPATIENT

Sponsored feature

Specialist neuro centre continues to invest in its staff and technology Chase Park, a specialist neurological centre, is continuing to invest in its offering as it increases therapy and rehab provision for patients.

Located in Whickham, Gateshead, Chase Park is a 60-bed care home which provides rehabilitation services to people with neurological and long-term nursing conditions. Chase Park has also recently opened a villa for people living with dementia.

Chase Park has strengthened its management team and appointed two non-clinical deputies through internal promotions to support the manager, Jane Webber.

As well as refreshing its therapy team, Chase Park is recruiting a specialist neuro physiotherapist to join their existing team expanding both physiotherapist and occupational therapy expertise on-site. The centre is also looking to appoint registered nurses and carers to join their expanding team.

Chase Park has also invested heavily in digital technology and rehabilitation technology, including the implementation of a Tyrostation. It has introduced PCS, a person-centered software

e-care plan system, as well as the Croner-I governance support system. It has also taken out a subscription with the Royal Marsden for staff to access vital clinical resource support anytime.

Reflecting on the development of the centre and its team, director, Dr Brahmabhatt says: “We continue to invest in Chase Park and our staff. We focus heavily on our culture and progression.

“We want our staff to feel supported and confident in what they do. We run a staff satisfaction survey every six months as well as a service user satisfaction survey and incentives such as ‘employee of the month’.

Centre manager Jane adds: “Chase Park is very special and one big family. We believe in developing people, and they really do count every single day.

“If anyone is considering a career in care, we would encourage them to give us a call to find out more, our door is always open.”

For more information about current job opportunities, please visit www.chasepark.co.uk/vacancies.

PASSIONATE ABOUT PHYSIOTHERAPY? Ex cit ing op p o rt u ni t y f or a p hy s i o th e ra p i s t to j oin our e xp and in g s p e c ia li st ne u ro l o gi c a l c a r e h o me

At Chase Park, we put people at the heart of our community and our business strives to create a strong, healthy family unit. With a unique, secluded setting, we offer an extremely tranquil environment for care, therapy, and rehabilitation.

We provide a holistic multi-team approach to care and treatment for

We're expanding! Join our team

individuals with neurological conditions, physical disabilities and associated mental health needs. We have a unique health club, complete with a hydrotherapy pool, generous gym area and state of the art assisted technology.

If you are passionate about delivering excellent care, have neuro specific physiotherapy experience and want to make a difference, then we would love to hear from you.

www.chasepark.co.uk/vacancies info@chasepark.co.uk 0191 691 2568 8 Millfield Road, Whickham, Newcastle upon Tyne, NE16 4QA

NRNEWS

Training to enable staff in the criminal justice system better understand brain injury is being rolled out across the country, in what has been hailed as an “important milestone” in decade-long efforts to improve support.

All 63,000 prison and probation staff in England, alongside healthcare staff within prisons, can now access the Ask, Understand and Adapt brain injury awareness training.

The training, which comprises e-learning modules and a film, adds a new layer of support for people in the criminal justice system who are living with brain injury, many of whom often go under the radar through a lack of knowledge and recognition of symptoms.

Research highlighted the scale of the issue within the system when it was found that nearly two thirds (64 per cent) of women and 47 per cent of men in HMP Leeds/YOI Drake Hall had reported a brain injury.

But now, after more than ten years of efforts to increase support and provision, the Ask, Understand and Adapt programme - created through a partnership between The Disabilities Trust, UKABIF, HMPPS, NHS England and NHS Improvement - is accessible to staff throughout the system in England.

The training has been designed to help staff ask about a possible brain injury, understand the possible consequences and causes of these injuries and adapt the way in which they work using practice tips and advice.

The accompanying film, Invisible Me, shares the story of Jade, who had a life-changing stroke in prison, one of the thousands of people who have experienced prison life and return to the community with a brain injury.

NRTIMES

Jocelyn Gaynor, head of Foundation at the Disabilities Trust, said it marked a significant step forward in supporting those working in the criminal justice system to understand brain injury.

“By encouraging staff to consider their engagements and interactions, and by seeing what small adaptations they can make to their practice, this could have very positive outcomes.

This training gives them the tools to do this,” she said.

“Everyone in the prison and probation system needs to be aware of ABI, it’s not just within healthcare, this impacts on their engagement and behaviour on the wings, in education and probation and in the courts, so it’s very important to work right across all of these groups.

“Through this improved understanding and changes to practice, we will potentially see some very positive changes - less time for people in segregation, more positive relationships within the prison environment, more successful engagement in their rehabilitation, which will ultimately help reduce reoffending.”

While the training is not currently mandatory, response to its introduction has been positive and governors have been receptive, said Jocelyn, but the potential to make it compulsory for every member of staff is something that will be reviewed going forward.

“The fact this has been made available to everyone working across prison and probation, including in healthcare, is an important milestone, and now we will be looking to do all we can to make sure people access it,” she said.

16

Head Office

01603 507 596

blackswan.co.uk

We can never replace home, but that should never stop us trying

Belamacanda Care Home

Drummonds Care Home

The home provides care for adults living with physical disabilities and learning difficulties in Little Clacton, Essex.

The home provides care for adults living with physical disabilities and learning difficulties.

Rated GOOD with the CQC The home benefits from a sensory room to allow for therapies and specialised activities.

01255 862 238 • belamacanda@blackswan.co.uk

Rated GOOD with the CQC with an OUTSTANDING in Responsive.

The home was named a finalist in the National Disability & Autism Awards 2021 in the ‘Making A Difference Award’.

01376 570 711 • drummonds@blackswan.co.uk

Mid Meadows Care Home

Westfield House Care Home

The home provides care for adults living with physical disabilities and learning difficulties in Frinton-On-Sea, Essex.

The home provides care for adults living with physical disabilities and learning difficulties in Dereham, Norfolk.

Rated GOOD with the CQC with an OUTSTANDING in Safe.

Rated GOOD with the CQC with an OUTSTANDING in Effective.

The home benefits from a communal galley-kitchen to allow our residents enhanced independence and choice

The home was named a finalist in the National Disability & Autism Awards 2021 in the ‘Great Autism Practice Award’.

01255 675 085 • midmeadows@blackswan.co.uk

01362 697 828 • westfieldhouse@blackswan.co.uk

NRNEWS The Government has committed to producing a strategy to deliver better support to people living with acquired brain injury (ABI), following efforts from MP Chris Bryant and an array of charities and leading figures to force it into action.

In a statement, it was confirmed a strategy will be drafted with a call for evidence being launched early in the new year to help shape its development.

Gillian Keegan MP, minister for care and mental health, said the development of the strategy would be co-chaired by herself and Mr Bryant, with senior officials in all relevant government departments invited to join the board.

“Following publication, the strategy will be kept under review and may be revised periodically to ensure that it continues to reflect the priority areas and actions needed to best support people living with ABI and their families,” the statement said.

The move by the Government marks a huge step forward in ABI provision, following years of campaigning from charities and survivors for more support. Mr Bryant recently introduced

a private members bill with the aim of forcing the creation of such a strategy, which was due to have its second reading in Parliament tomorrow.

Mr Bryant - chair of the All Party Parliamentary Group (APPG) on ABI and a tireless campaigner for the cause - had called on the Government to take action to ensure a more joined up approach from government departments in supporting individuals and families affected by brain injury.

In November, he delivered a letter signed by over 200 MPs, charities, brain injury survivors and other providers to 10 Downing Street, calling on the Prime Minister to take action.

Following that, Boris Johnson confirmed in Parliament that the Department for Health and Social Care would be looking at the development of such a strategy.

It has also been supported widely by the public and via social media.

But the confirmation is a huge step forward and will ensure the development of an appropriate strategy, with input from families and professionals across the world of ABI. Announcing the development on Twitter, Mr Bryant said: “The Government has just announced it will draft a strategy on Acquired Brain Injury, set up an ABI programme board which will be co-chaired by Gillian Keegan and me, and will call for evidence very soon.

“So my ABI Bill won’t be needed. Many thanks to all who’ve helped!”

Charities who have been vocal in their support of Mr Bryant’s Bill were keen to celebrate the move, which comes after years of campaigning. UKABIF hailed the announcement as “a gift” and the Disabilities Trust said it was “just amazing”.

The Child Brain Injury Trust added: “Fantastic news to hear. A strategy for ABI has been needed for so long. We are thrilled!”

Dalton Leong, chief executive of The Children’s Trust, said: “This is a huge milestone and a great victory for those living with acquired brain injury. We are delighted the government has committed to this much-needed strategy. We look forward to supporting the creation of the strategy and, in particular, ensuring the needs of children with ABI are considered carefully.”

NRTIMES

18

The

C-Brace®

Connect your patients to new possibilities with the C-Brace® C-Brace®, the world’s first microprocessor stance and swing phase orthosis, offers new benefits to users! The C-Brace® gives controlled knee flexion during sitting, walking step over step down stairs and slopes is now possible, and stumble recovery reduces the risk of falls. Now smaller and more lightweight, the C-Brace® allows the user to expend less energy while walking and enhances safety by responding in real time.

The C-Brace® microprocessor sensor technology allows for intuitive set up by clinicians and a more responsive gait pattern for patients, adapting to varying walking speed and differing terrains.

We look forward to reshaping the future of orthotics with you!

“The C-Brace® gave me back my freedom and daily routine.

I can take care of my children and myself on my own again, and I’m very grateful for that.”

Hannah, pictured above, C-Brace® user

orthoticsuk@ottobock.com

NRNEWS

The winners of the annual UK Acquired Brain Injury Forum (UKABIF) awards have been honoured at this year’s Time for Change summit.

Poster winner

Film Award winner

The Awards include the UKABIF Film Award, the Mike Barnes Award for Innovation, the Stephen McAleese Award for Inspiration and the UKABIF Poster Award. The Awards were sponsored by Elysium Healthcare.

Nicola Leyland won the UKABIF Film Award for her moving film titled ‘A Freak Accident’. The animation tells the story of her son who sustained a brain injury aged eight and documents the trauma they both went through and his journey to significant recovery. Watch the film on YouTube.

The Mike Barnes Award for Innovation went to MyAbility created by Dr Andrea Pickering, consultant clinical psychologist of Recolo, with Fran Sephton, Emma Bowers and Niki Dutton, highly specialist speech and language therapists of ATtherapy.

They will receive support from the National Institute for Health Research to advance their project and mentoring from Dr Penny Trayner of Goal Manager.

Anita Pascoe received the Stephen McAleese Award for Inspiration. In July 2000, Anita Pascoe’s 54-year-old mum, Ann, collapsed following a brain haemorrhage and she remained severely brain injured until her death earlier this year. For 20 years Anita fought to get her mum properly supported.

Accepting the award, Anita said:

NRTIMES

Innovation winner

“I have been inspired by so many people who have survived acquired brain injury and overcome huge challenges. We had to fight so hard over the years and that is just not right. You should not need to have someone fighting your corner in order for your needs to be met.”

The UKABIF Poster Award was won by Anita Pascoe lead neuropsychologist Dr Henk Swanepoel of Cygnet Health Care for his project ‘Implementing a Study to Compare Diagnostic Accuracy of Cognitive Screening Instruments: A Weighted Comparison Approach in Acquired Brain Injury'.

Chloe Hayward, chief executive of UKABIF, said: “Our awards are our small way of recognising the amazing people and organisations who are doing their bit to improve the lives of those affected by acquired brain injury.

“These awards are held every year so we would encourage people to nominate others so we can celebrate the unsung heroes and recognise the great work being done across the country.”

20

Lifeafter after Life traumatic traumatic injury can be injury can be challenging challenging Blesma is here for Blesma is here all serving andfor all serving and ex-Service men and ex-Service men and women who have women who have experienced loss of experienced loss of limb, use of limbs, hearing, sight or limb, use of limbs, speech, sight eitherorduring hearing, or after either Service speech, during or after Service

Get in touch to find out how we can support you and your family Tel: 020 8548 7080 Get in touch to find out how we can support you and your family Email: membersupport@blesma.org Tel: 020 8548 7080 Find out more: www.blesma.org Email: membersupport@blesma.org

Find out more: www.blesma.org

NRNEWS An online exercise group which offers specially-devised classes for people with neurological conditions has marking its first anniversary by winning national recognition for its work.

Neuro Heroes was launched in October last year to enable people to continue to challenge themselves through exercise despite lockdown, and has since grown into a community of people from across the UK. The group initially focused on delivering high-intensity live exercise classes for people with Parkinson’s disease - building a clientele spanning younger people with Young Onset Parkinson’s disease through to older people wanting to push themselves. It has since broadened its reach to deliver MS and Cerebral Palsy specific sessions, as well as general neuro classes.

In recognition of its contribution to supporting people with neurological conditions and its new and refreshing take on exercise which positively challenges participants - based on both clinical experience and evidence-based guidance - Neuro Heroes has triumphed in the UK Parkinson’s Excellence Network Awards.

Specialist neurological care provider Sue Ryder is looking to increase its community support in the South East of England to add valuable new provision in the area amidst unprecedented demand for resources.

The charity said it is currently carrying out scoping work into what additional support it can provide, both in terms of rehabilitation and supported living.

Sue Ryder operates two neurological care centres in the area - Stagenhoe in Hertfordshire and The Chantry in Suffolk - and continues to grow its offering to inpatients, with The Chantry doubling the size of its Level 2 neurorehabilitation unit since its opening in January 2019.

It has also recently launched a pilot Parkinson’s helpline service for people living with their condition, families and healthcare

NRTIMES

The group, run by neurophysiotherapists Laura Douglas and Anna Kharin, won the Person-Centred Approach Award, which recognises its work in supporting people living with Parkinson’s both through exercise and the building of a UKwide virtual community.

Laura says: “We’re really proud to have been recognised, it’s a big achievement for us, and is so good to know we have created a service people engage with and value. We were nominated by one of the people who attend our sessions, which brings it back to the fact we are person-centred and our approach is working.

“Our high-intensity approach has been really welcomed, people have been really keen to engage with us, but we’ve listened to the feedback as we have gone and evolved as a result. We want to give people what they want.

“Parkinson’s was what we initially focused on when we launched, and our PD Power session - the first we ever held - is now so popular we have had to add a second session each week.

But we’ve now been able to expand that to cover other conditions, which has been brilliant.”

professionals across the Suffolk region, to build on the success of its established Dementia Together service.

Now, Sue Ryder is turning its attention to ways it can continue to increase support for people living with neurological conditions in the community, at a time when existing resources are under huge pressure following the COVID-19 pandemic and amid growing NHS waiting lists.

“We’re always looking to support more people through our community services, to be there when it matters,” says Sally Davies, regional neurological director at Sue Ryder.

“We’re currently scoping out what we can do across both Suffolk and Hertfordshire as there is demand across both areas, we’re casting quite a wide net and are looking at what we can do.

“We are looking at rehabilitation as well as supported living, there are a plethora of different angles to look at as we want to make sure what we provide responds to the demand, which is incredibly high.

“We have a supported living bungalow in Suffolk, where we can support people who don’t have a high level of clinical need and don’t need to be in a neurological centre, so we are doing scoping work to see what we can do.

“I don’t think we can ever fully meet the demand out there, sadly, but we are always looking to increase provision where we can.”

22

NRNEWS

Brain injury survivors can now access digital information from their GPs to help increase the levels of support and signposting currently available through a new partnership.

“By using Healthinote, GPs can supply verified, trusted, accurate information to patients and carers, and supplement the work they do face to face. The information is saved to a patient’s electronic record, so if they go on to see a doctor or nurse afterwards, things can be more joined-up and they know what resources they have had access to.

“We are trying to add value to a GP consultation and effectively maximise the customer experience that you would expect from any service and ensure patients can go away with the information and signposting they need in a format they can understand.”

“The complex, fluctuating and often hidden effects of brain injury can make it difficult for people to get the help and support they need,” says Peter McCabe, chief executive of Headway.

“We recognise the challenges faced by GPs in not only understanding the complexities of brain injury, but also signposting survivors and carers to specialist information and services.

“Too many people slip through the net and are left to cope with impact of brain injury without help of support.

“That’s why this partnership with Healthinote is so exciting.

“It will make it easier for GPs to provide patient or carer-specific information from Headway, whether in the form of our awardwinning publications or signposting to local Headway groups or branches, helping us meet our goal of ensuring no one has to deal with brain injury alone."

Headway has teamed up with online platform Healthinote to help GPs to give survivors and their carers and families personalised information, which is sent to them digitally after their appointments to read and digest at home.

The information, called a 'health information prescription', is presented through visual, immersive and interactive content, and increases both the range and accessibility of virtual resources available to people living with brain injuries.

Healthinote, which is integrated into the eConsult platform, is in use in over 1,700 GP practices nationwide and can be accessed by over 13,700 GPs. The availability of dedicated brain injury resources from Headway, presented via the accessible and engaging channels delivered by Healthinote, is enabling GPs to increase their support to survivors and maximise use of what can be used to support patients remotely.

“We want to empower people to understand their treatment or condition and supply them with the right health information at the right time,” says Alex Merckx, director of marketing and partnerships at Cognitant, the business which developed and manages Healthinote.

“Getting accurate information into patients’ hands is very important. Consultations with your GP are very quick and there can be a lot to take in, and while they tell us not to Google things afterwards, of course we all do, and that can lead to misinformation.

23

NRTIMES

Recruitment in care

Special Report Stemming the recruitment crisis what’s next for care?

As the shortfall in essential frontline workers continues to grow, NR Times speaks to leading figures from across the health and social care sector to gauge the scale of the problem, the impact of the pandemic and compulsory vaccinations in exacerbating that and what can be done to turn things around

NRTIMES

The estimated shortfall of at least 80,000 staff in the care sector nationally has been building over several years, but has now reached what many providers concede is ‘crisis point’ in being able to deliver services to those who depend on them to do so.

With long-standing concerns over the appeal of the industry, the well-documented experiences of frontline care staff during the COVID-19 pandemic has shone a new light onto the huge demands of a career in care.

Further pressure comes via vaccination demands, which have forced some providers into losing staff. While the COVID-19 vaccination is mandatory for health and social care workers, a government consultation was launched recently over whether the flu vaccination - currently ‘recommended’ - should become compulsory.

Despite having tens of thousands of vacancies to fill, however, the profession, in many ways, looks less appealing than ever.

Statistics show an estimated turnover rate of directly employed staff working in the adult social care sector of 30.4 per cent in 2019/20 - which equates to around 430,000 people leaving the profession. Turnover rates increased steadily by around 10.2 per cent between 2012/13 and 2019/20.

Registered nurses in adult social care had a turnover rate of 41.3 per cent, compared to counterparts in NHS (9.4 per cent).

“We’re heading into a staffing crisis,” says Louise Burns, managing director of Nineteen Recruitment.

24

Special Report

25

“Frontline staff have in many cases worked tirelessly over the last two years, often in the most challenging circumstances, and I completely understand why many may feel undervalued.

“But let’s be clear, many people, from all walks of life, have given and sacrificed so much during the COVID-19 Pandemic.

Fair reward, respect, recognition, job security, and feeling valued is important in any industry.”

Neil Russell, chairman of PJ Care, agrees and points to the lack of appreciation of the role care plays.

“The care industry has been poorly treated for many years and this has become worse during the pandemic,” he says.

“The industry plays a huge part in the smooth operation of the NHS, by keeping the vulnerable healthy and enabling hospitals to discharge earlier, but there is no acknowledgement of this.

“Care staff who have given so much and worked so hard to keep those in their care fit and well are right to feel aggrieved.”

And this happens at all levels of the profession, says Kelly Hodgson, who left her role in middle management in social care due to the ever-increasing demands and pressures.

“I know first-hand as a manager how much pressure you are under and when; quality care is not delivered consistently, compliance targets are not achieved, services receive a poorquality rating with CQC, staff leave, financial budgets are not hit. They are unsupported and performance managed,” she says.

“I have personally suffered with work related stress when I was

NRTIMES

Recruitment in care

“Our clients cannot get the staff to work and they are turning to agencies to support them. More and more agencies are also experiencing difficulties recruiting. It’s a widespread issue and it’s going to have a significant impact on the level of service and care that can be offered to those using social care settings.”

This assessment is little surprise to those within the profession. While people are badly needed, the image and reputation of the sector - misguided, operators are keen to point out - is a barrier which shows no signs of lifting.

“This is as difficult a recruiting arena as I have experienced in my long career,” says Paul TM Smith, a leading name in specialist care, who has worked in nursing for over 40 years.

“Our main barriers in many ways have always been the perception of care as an unattractive, low paid, low skilled role.

“The double whammy of bottom run pay rewards, and being part of an industry that is undervalued in its output, is not an attractive place from which to draw in fresh new talent.”

Annabelle Lofthouse, co-founder and director of Breakthrough Case Management, says: “The problem is not just recruitment but retention of staff." “‘Burn out’ is a real problem and staff are exhausted and overwhelmed – it’s no surprise that people are tempted to look elsewhere for jobs that could be less stressful, offer more conventional hours and ultimately, better pay.

The care industry has been poorly treated for many years and this has become worse during the pandemic

Special Report Recruitment in care

a regional operations manager, and I was off sick with anxiety and stress for a period.

“I felt it didn't matter how hard I tried, how many hours I worked and how good I was at my job I was fighting a losing battle. It was soul destroying. I have seen and supported too many amazing people left broken through a management role in health and social care.

“I know of homes and services that have had six new managers in six years, an average of one new registered manager a year.

“Turnover of staff impacts massively on the business in so many ways but also financially, it makes no commercial sense to keep losing staff. Especially in care. To provide quality care, people need to feel happy and supported in their roles. Our clients and care teams need consistency, continuity, and stability.”

One care provider - Exemplar Health Care - reports bucking the trend with an increase of 300 per cent in applications through a targeted recruitment campaign, yet points to the red tape as a further barrier to bringing people in.

“Alongside well-known issues around pay for frontline care workers, we’ve found that the time taken to get DBS checks back has been one of our biggest challenges,” Russell Stephens, deputy recruitment manager at Exemplar Health Care said.

“In the peak of the pandemic, DBS checks were coming back in as little as 24 to 72 hours, which meant that people could

NRTIMES

start working with us in as little as two weeks. However, now, some candidates are waiting upwards of eight weeks for a DBS certificate.

“In some cases, we’re finding that candidates are withdrawing from employment as they can’t afford to wait for their DBS check to come back to start work.”

With such an array of problems hitting providers at a time they can ill afford to be facing further obstacles, is the Government doing enough to help? Neil is clear about this.

“The Government is not doing enough and it needs to look long and hard at how it funds care,” he says.

“The difference between social and health care needs causes huge issues in funding; if someone needs care, they need care, and it should be funded appropriately. Fee rates need to be set at a level that allows providers to pay their staff appropriately too.

“Too often, we have residents moved out of our care to another home because it’s cheaper. However, the additional medication and specialist support that’s needed because staff aren’t trained to meet this person’s needs means more is spent, but because budgets are siloed this is an issue that goes unaddressed.

“Many times the person comes back to us but because their health and/or abilities have deteriorated through a lack of appropriate support, we then need to charge more.

“Short-changing care providers will cause a loss of available care beds that reduces NHS hospitals’ ability to discharge and therefore affects anyone who needs hospital treatment.

“It needs to be highlighted that a single night in a hospital bed is much more expensive than paying a better fee to provide care elsewhere, care that will prevent future hospital admissions.”

The approach of the Government towards those working in the industry is a major concern for Annabelle.

“On a personal level, I am concerned at the Government approach to all frontline staff working in healthcare right

26

We've gone from championing carers and healthcare professionals as heroes to vilifying those who do not wish to participate in the vaccination programme. For those same people who worked so tirelessly to face losing careers, livelihoods, professional registration and jobs due to exercising personal bodily autonomy is disturbing.

27

NRTIMES

Recruitment in care

Neil agrees, and says people are being lost to other industries often because of the financials.

“As an industry, we need to be able to pay what the role of keeping vulnerable people fit and healthy deserves,” he says.

“We are not only competing with other care providers when it comes to recruiting staff but other industries too.

"The significant pay increases in retail, hospitality and warehousing have made it much harder to attract good quality candidates.”

Vaccinations have put further pressure on the industry, and while providers universally accept the reasons for this and the need to protect residents and clients, Annabelle is unequivocal in her view on the unfairness of the situation for those who have dedicated themselves to the profession and are now losing their jobs.

“It is my personal opinion that no-one, whether in healthcare or any industry, should lose their job for refusing the coronavirus vaccination,” she says.

“Personally, I will respect and understand individuals who choose not to have the vaccine but, I am saddened that they may have to choose between this and their right to continue working.

“I have spent my career being guided by the principles of informed consent and evidence based medicine – I question whether those same principles are being upheld right now.”

Neil highlights the reality of the situation for providers like PJ Care.

“We lost five per cent of our workforce [after the COVID vaccination became compulsory] and while we are able to replace them because of our strong salary and benefits packages, the combined 87 years of experience cannot be replaced,” he says.

Special Report

now,” she says. “We've gone from championing carers and healthcare professionals as heroes at the beginning of the pandemic to, on occasion, vilifying those who do not wish to participate in the vaccination programme.

“For those same people who worked so tirelessly to face losing careers, livelihoods, professional registration and jobs due to exercising personal bodily autonomy is disturbing. At a time when we need more carers and healthcare professionals than ever, I struggle to make sense of it.”

Louise adds: “The Government has definitely attempted to promote social care as a positive job prospect, but the reality is that unless you have a real burning desire to provide care to others and make a difference, it’s just not appealing enough.

“The pandemic has made working in the sector increasingly difficult and the demands placed on workers are considerable.

When you look at the rates these staff are being paid, it’s just not enough.”

And that burning issue - the rate of pay - is something that must be addressed universally and urgently, say providers.

“It is a sad fact that frontline staff in social care have always felt undervalued," says Paul, a consultant to care provider Renal Health.

"We see this more and more in the NHS – it is mostly around the low levels of pay offered as a percentage of income and each provider has different income possibilities but generally each pay on or just above minimum wage."

“The pandemic, coupled with mandatory vaccinations and the adverse working conditions with a real ‘risk to life’ for employees and their families, has only exasperated a large staff hole which is becoming a self-fulfilling monster.

Businesses are closing and at threat levels not seen since the early 1980s.”

I felt it didn't matter how hard I tried, how many hours I worked and how good I was at

Special Report

my job, I was fighting a losing battle. It was soul destroying

Recruitment in care

“If those staff who are currently with us under self-exemption are told they actually don’t qualify, by the end of the year, the years of experience we’ve lost could total 161 “The inability of providers to continue to admit new residents because of staff shortages will result in acutely ill people not receiving the treatment they need in hospital.

“Making any other vaccination or treatment mandatory will only make the situation worse.”

Clearly, providers are doing all they can to make it as appealing as possible to join or remain with their organisation, with an array of initiatives to reward and show appreciation.

PJ Care has a dedicated joy and wellbeing team to support the emotional welfare of its team, alongside an equality, diversity and inclusion committee.

Exemplar Health Care sent out monthly care hampers to its team during the pandemic, provided free food while on shift and paid for one takeaway each week.

Breakthrough Case Management offers wellness initiatives including Cycle to Work and Employee Wellness, and has recently launched an apprenticeship programme; and Renal Care gave staff cash bonuses to recognise their role during the pandemic.

“Despite much of the social care frontline workforce being on National Living Wage, there are lots of things that employers and managers can do to make colleagues feel valued and appreciated,” points out Russell.

NRTIMES

But while gestures of goodwill and attempts to give job satisfaction are plentiful from within the sector, clearly major change is needed at an industry level to save the future of care.

Kelly says changing the culture for those working in the sector must be a priority.

“Let’s ensure the working culture is psychologically safe, bring people and departments together to achieve common goals, as opposed to blaming and working against each other,” she says.

“Look at the demands and expectations of job roles and question if they are reasonable. Is the workload too high? Are we providing people with the correct training and skills to perform? Do they have a work/life balance and how can we support and encourage this?

“How are people being treated, spoken to, listened to? Is there bullying happening in the workplace? Are people being managed through a culture of fear?

“Almost every company I have worked for over the last 20 years, I have seen the same pattern repeated. Working together I believe we can break the cycle.”

Action must be taken now to stem the run of closures which continue to be seen through the staffing crisis, says Neil.

“Care homes and domiciliary care providers are already closing, and more will follow if this crisis is not addressed,” he says.

28

expertise these individuals bring to the table. They need to feel valued and appreciated. They need to feel safe. They need to know just how critical they are to the care and welfare of others

“We have an ageing population and demand for later-life care will only increase, yet the number of available staff is static, if not shrinking. This will cause untold and potentially irrecoverable damage to the NHS and therefore the health of the nation.”

Russell continues: “The adult social care has had recruitment challenges for a long time - the pandemic has just brought them more into the light.

29

NRTIMES

Recruitment in care

in order to acknowledge the

Special Report

Pay rates need to be increased

“We’ve seen that, in many ways, the pandemic has brought the vital role of care workers into the limelight, and made people feel more valued and proud to work in our sector.

“We need to continue building the reputation of social care workers as a highly skilled profession, with lots of opportunities to progress and develop; and building the reputation of social care as a career and vocation.”

Promoting care as a vocation is something which also resonates with Annabelle.

“I really do think more emphasis should be placed on the merit of vocational careers – this begins at school level,” she says.

“We have to start valuing carers and careers in care. This means recognising the importance of the work carers do, creating opportunities for personal and professional development and raising the profile of the industry.”

The reputation factor is one Louise believes is crucial to the future of the whole sector.

“The offering needs to be more attractive,” she says.

“Pay rates need to be increased in order to acknowledge the expertise these individuals bring to the table.

“They need to feel valued and appreciated. They need to feel safe. They need to know just how critical they are to the care and welfare of others.

“We need to look at the hours staff are working to ensure we are protecting them from burnout and we need to ensure they have high quality support because delivering care in a pandemic is hard on both a physical and emotional level.”

For Paul, protection must be given to the smaller care providers, for whom the pandemic has been hugely testing financially.

“The industry will lose its heart – the small owners and family businesses will be challenged like never before and the offering will more and more coalesce around the big players,” he says.

“There will always be excellence in this industry, and we have shining examples of exemplary providers to act as flag bearers, however the CQC ratings do not reflect an industry able to achieve outstanding services routinely, and it is factual to state this would alter significantly if the funding issues were addressed effectively, and the staffing crisis averted.

“As it stands – we are currently held prisoner by both.”

Annabelle adds: “I’m an optimist at heart, and I hope that with some good common sense collaborative thinking, we can steady the ship and calm the choppy waters.

“I think it’s a case of getting heads together and working out practical sensible solutions.”

INTERVIEW

Back in 1996, the definition and understanding of neurorehabilitation was far from how we accept it today.

Recognised as a life-changing, standalone area of specialist rehabilitation to help patients rebuild their lives from brain and neurological injuries and conditions, neuro-rehab is a crucial and vital component in the lives of countless people around the world.

But 25 years ago, that was not always the view from everyone.

As Professor Mike Barnes, founder of the World Federation for Neurorehabilitation (WFNR) recalls, in 1996, neuro-rehab was in its infancy as a recognised area.

“I thought that neurorehabilitation needed a clearer voice so we could gain more credibility and coherence in sometimes, to be frank, a neurological environment that was rather hostile to the concept of neurology helping to rehabilitate people,” says Professor Barnes.

But now, through the efforts of professionals throughout the world to unite and gain recognition for neurorehabilitation, the situation is vastly different.

A respected discipline globally, with its practice based solidly on research and science, the significant strides the specialism has made are due in no small part to the creation of the WFNR which, for the first time, brought together the many disciplines now recognised as being part of neurorehabilitation around the world.

NRTIMES

With over 5,000 members internationally and 37 special interest groups (SIGs), the WFNR is now affiliated to 42 national societies globally - demonstrating the national reach and unifying role the organisation has had in its two and a half decades in existence.

It is also recognised by the World Health Organisation, with the WHO’s Rehabilitation 2030 document highlighting the importance of neuro-rehab and referencing the WFNR's Flying Faculty programme.

This is an initiative which effects deep-rooted change by delivering neuro-rehab training globally, particularly in middle and lower-income countries.

“I think our original aim has been met – to create a global organisation bringing together health professionals with an interest in neurorehabilitation,” says Professor Barnes.

“It is now a recognised and respected sub-speciality of neurology. Gone - I hope - are the days when practising in neuro-rehab was considered beneath the neurology community.

“We now serve our patients much better than we used to and I think the WFNR has played a major role in that change.”

For Professor David Good, president of WFNR, who has been part of the organisation for over 20 years, the adoption of scientific-based practice within therapies helped to give neurorehabilitation the standing it has today.

“I didn't really think [25 years ago] there was much science that had been applied to the field of rehabilitation in general.

I agree with Mike that neurorehabilitation was a bit of a stepchild or was not really accepted so much within neurology,” says Professor Good.

“I will say that, compared to some other areas in neurology, for example epilepsy, Parkinson's disease or multiple sclerosis, probably neuro-rehab has not quite reached that level of acceptance.

“But certainly I've seen a great deal of science now, that's

30

INTERVIEW

been injected into neuro-rehab. That was not seen when I first started. Things like physiotherapy, occupational therapy and speech therapy are more based in science. They have science they can rely on, that they can adopt into their everyday practice.”

The journey to this point has not been dictated by one major event, but a “series of evolutions,” says Professor Good, an internationally renowned stroke specialist and chair of neurology at Penn State University.

“It's really been a gradual path, but with many things along the way, such as the development of the Flying Faculty. One of our goals in general, has been to promote neuro-rehab to low and middle-income countries. There's a huge demand. And this was one way to bring a rehab to some of those countries.

“More recently, our involvement with the World Health Organisation, and some of their efforts to develop neurology and rehabilitation worldwide, has been a great positive. I think that’s a good example of how we have been accepted worldwide.

“I’m also very proud of the educational efforts of WFNR, and there are many facets to that.”

Education and awareness are something very close to the heart of all at WFNR, especially in lower and middle-income countries, with the rise of telemedicine during the pandemic enabling people around the world to benefit from the surge in remote access to support.

“For example, the incidence of stroke has gone up 180 per cent in the last nine years, and the major burden is in low- and middle-income countries. And yet these countries have virtually no neurorehabilitation, very few physicians, physiotherapists and speech therapists,” he says.

“So the demand far outstrips the reality of service delivery.

But one of the positive things, if there is anything, about the pandemic, has been the growth of telemedicine and virtual rehabilitation. This is something that was developing anyway, but with the COVID pandemic, the need for remote rehabilitation has just skyrocketed.

“And it's been, I think, a real advantage. There's some criticism about, for example, the fact a lot of rehab is hands on, but there's much that can be done remotely as well.

“I'm excited about it and I think we've changed things permanently to some extent, in that remote medicine and remote rehabilitation will be with us in the future as well.”

And alongside the growth of telemedicine, other technologies are coming to the fore in a fast-growing and changing neurorehabilitation sector, which has moved on beyond recognition in the 25 years of WFNR’s existence. These innovations hold huge potential in terms of driving the

31

Professor David Good

continued progress of neuro-rehab.

“There's a lot of technology that's been developed for neurorehabilitation. Is all of it going to be useful in the future?

We don't know yet,” Professor Good says.

“For example, robotics. When you review the literature, it’s a little bit vague as to whether robotics are helpful, but I do think there are some real possibilities there.

“Another form of technology that's really exciting is the brain/ machine interface. For people who have had a stroke and cannot speak, for children with advanced cerebral palsy, it can be incredible. I’ve seen some incredible videos of children who are quadriplegic, they can’t walk, they can’t propel a wheelchair - but by using brain computer interface and taking EEG signals, they learn how to propel a wheelchair and can zip all over the place.

“I think there in particular [offers] real hope for the future. It involves a tremendous amount of engineering to decode these signals and create actual movements or speech from them, so it’s work in progress, but I think it's very exciting stuff.

“Cell transplantation is another technology that perhaps might be useful. There have been some recent articles that suggest that cell transplant in patients who have motor deficits might be beneficial, but that's potentially invasive. But if you could do it non-invasively, that's great.

“AI is another technology which holds huge promise for the future, although I must claim a bit of ignorance myself here, although my colleagues tell me it is a great area of potential.

“If you think back to when WFNR was created, when there was no science, now we're getting all these exciting developments, which open all sorts of doors. Now, we can help disseminate this information not only to our members, but to the neurorehab community at large throughout the world. And that's a major goal of ours, too.”

NRTIMES

INTERVIEW

Sponsored feature

Character Building: Is there a place for positive psychology in neurorehabilitation?

NRTIMES

32

Positive Psychology aims to improve an individual’s wellbeing and mood by utilising their personal strengths and characteristics (Seligman & Csikszentmihalyi, 2014).

As a relatively new psychotherapeutic approach, Positive Psychology’s use in clinical settings, in particular complex care and rehabilitation, is not yet commonplace. However, constructs from the field of Positive Psychology have been explored in a range of illness populations and are increasingly gaining attention as factors that may influence recovery from acquired brain injury (ABI) (Rabinowitz and Arnett (2018).

The team at Adderley Green Care Centre (AGCC) in Staffordshire run by Elysium Neurological are currently exploring the suitability and impact of Positive Psychology interventions as part of neurorehabilitation programmes for ABI survivors.

Through both group work and one-to-one sessions, the psychology team are supporting ABI survivors to identify and engage character strengths and are then exploring the impact this has on their wellbeing and progress in rehabilitation.

In this article we talk with Dr Darren Perry, consultant clinical psychologist and psychology lead at AGCC. Darren has worked for 20 years in NHS neuropsychology, physical health and older adult mental health services, and has a particular interest in psychological adjustment to changes in neurological and physical health. Darren led the development of a Positive Psychology group trial at AGCC. He is continuing to explore how Positive Psychology can be used in neurorehabilitation and the impact that improved wellbeing has on individual outcomes.

Hi Darren, thanks for talking with us today. Perhaps you could start by explaining a bit about the difference between Positive Psychology and traditional Clinical Psychology?

Darren: “Of course. Clinical Psychology operates on a large and well-established evidence-base which focuses on reducing negative emotional or behavioural states. So, for example, psychological interventions that are effective in helping people to feel less anxious or to overcome depression.

“Positive Psychology developed more recently, in the 1990’s in America, and the research that underpins it looks at what makes people feel good, what makes them happy, and what gives them a sense of wellbeing. This understanding of wellbeing and its contributing factors forms the foundation of work to experience more frequent or sustained states of wellbeing. So, whilst the two schools of psychology have different starting positions, they are both pathways to improved functioning. At the risk of oversimplification, one focuses on reducing suffering and the other focuses on increasing wellbeing.”

33

Martin Seligman and colleagues have researched wellbeing and identified five key components. They use the acronym PERMA. 1. P – Positive emotion. Essentially, anything that makes you feel good, gives you pleasure, or hope or optimism and contributes to your overall sense of wellbeing.

2. E – Engagement. That feeling when you’re really engrossed, when you’re immersed in something. Whether it’s a book, a film, a conversion or a sporting activity and you lose that sense of yourself in time and you become fully engaged. Often referred to as being in a ‘flow state’. That’s an important component of wellbeing.

3. R – (positive) Relationships. The more quality relationships you have, or the more integrated your social network is, then the more wellbeing you’re likely to feel.

4. M – Meaning. Having a sense of meaning, either in general or in the activities and day-to-day things that you do that allow you to tap into your sense of purpose. For some, this may have spiritual or religious meaning.

5. A - Achievement. Doing things that give you a sense of getting somewhere, accomplishing something and making progress is also supportive of wellbeing So are the PERMA (five key components) researched and proven to underpin wellbeing?

Darren: “Yes, they are. Alongside this, Positive Psychology has also focused on character strengths and their role in wellbeing.

Based on an extensive review of literature on philosophy, ethics, education, psychology and theology spanning over 2500 years, Seligman and his team identified 24 character strengths.

These include qualities such as gratitude, kindness, bravery, appreciation of beauty, perseverance and determination.

Research has subsequently established that we all have a unique and dynamic blend of character strengths and engaging these effectively in our daily life is linked to experiences of the five domains of wellbeing.

And so how does this help an individual within a neuro-rehab programme?

Darren: “Wellbeing and quality of life should be a central focus of all good neuro-rehab programmes. Professor Jonathon Evans at the University of Glasgow was one of the early proponents of the potential application of Positive Psychology in neurorehabilitation. He stated back in 2012 that there are areas

NRTIMES

INTERVIEW

in which brain injury rehabilitation could draw more on the methods of Positive Psychology. Unfortunately, there has not yet been a lot of work published in this domain.

“Individuals we work with at AGCC are often so focused on regaining abilities that they have lost as a result of their injury or illness that their awareness of preserved character strengths becomes diminished. We initially help the resident to identify their core or ‘signature’ character strengths. Once their awareness of these intact strengths improves, we help them to spot when they are engaging them during everyday activities.

We introduce the notion that strengths can be under-used and can even become a weakness if they are over-relied upon in some contexts. We also focus on developing interventions that encourage them to use their strengths in new ways, during their wider rehabilitation.

“The simple notion here is that when you’re focusing on something that is effective about yourself, something that is a character strength, this helps you to feel engagement and achievement, boosts your relationships, makes activities feel more meaningful and gives rise to positive emotions and a sense of wellbeing.”

You led the development of a ‘Psychological Wellbeing Group’ and piloted it with the aim of supporting a group of ABI survivors through the rehabilitation process. What were the main learnings from the pilot group?

Darren: “The pilot group was a useful exercise. The content of the group sessions was adapted from a ‘Positive Psychology Workbook’ written by Rashid and Seligman (2019). We found some things that worked really well in the group but it also strengthened, in our mind, the need to develop innovative interventions that are more suited to a neurorehab setting; for people with impaired levels of functioning. Our residents engaged well with the themed sessions and benefitted from the social interaction and shared-experiences. But, we came away with a feeling that it may be more effective to combine group sessions where themes are introduced and discussed with follow-up one-to-one sessions with each resident. The individual work would focus on helping them to increase their awareness of their own character strengths and how to apply them specifically in the context of their rehabilitation.

“So we’re now actively looking for ways to modify established interventions or design new ones to help people with cognitive, communication, sensory or motor impairments. There are certain character strengths that lend themselves more readily to character intervention without needing a great deal of adaptation. One of the most powerful ones we have used is for people who identify gratitude as a character strength, and

NRTIMES

there’s a few ways this can be done.

“The first method is the ‘Three Good Things’ journal. Every day the individual keeps their eyes and mind open to three good things that have happened, no matter how small or insignificant they may seem. It might be a friendly smile from someone, or a carer bringing them a cup of tea at just the right time or a family member called for a chat. They literally just record those three things every day in a journal or notebook. This process operates on two levels; it helps them to have their ‘antenna’ more attuned to noticing small things that they can be more grateful for every day - that may otherwise have passed them by. In addition, the process of writing it down it, reflecting on it and perhaps discussing it with a member of the care team, actively engages and reinforces that sense of gratitude and generates good feelings.

Journaling is a very popular method in mainstream/popular psychology, so it’s really interesting that you’re seeing benefits within a neuro-rehab setting too. Are there any other methods that you’re using?

Darren: “Another approach we’ve used successfully with some of our residents in relation to gratitude is a ‘Gratitude Letter’.

The individual can write a letter to somebody important to them and tell them what they are grateful for. Often the individual will need to receive support to write the letter but they do get something out of the writing process. Plus the person who receives the letter really enjoys it and, in turn, gives them positive feedback about it. This engages gratitude and invokes feelings of achievement which bolsters the sense of the positive relationship with the recipient.

“And then the third way we’ve used gratitude is to turn the focus on the character strength internally, which, although really impactful, is something that people struggle with a little bit. This method involves thinking about oneself and what you feel grateful for. This process mostly takes the form of a conversation that we can have with the individual, as we go about daily tasks. It’s another way of integrating gratitude throughout daily life.”

That’s fascinating – are you looking at ways of working with other character strengths too?

Darren: “Yes, we’ve used these techniques with people that have identified with gratitude quite a lot, but we’re still in the process of trying to explore the other character strengths and find effective ways of employing them. Bravery and persistence are other strengths that seem to lend themselves readily to intervention in this context. A resident may acknowledge something that they’re feeling anxious about or tend to avoid

34

or put off and then we encourage them to take a little step towards it on a daily basis. So they’re engaging with bravery or persistence and at the same time hopefully making some behavioural changes, and by doing something that they wouldn’t have been doing previously it can bring about some positive changes for them. The work that residents do with our Physiotherapy and Occupational Therapy colleagues can often require a degree of bravery or persistence that can be easily overlooked. For instance, the task of re-learning to transfer from sitting to standing or walking or to cooking independently can potentially induce quite a lot of fear. This could be a fear of physical injury but could also be a fear of failing and the psychological injury of facing up to or accepting impairment and loss. This fear sometimes leads to disengagement and reduced progress in rehabilitation. It is easy to see how engaging bravery and persistence in these activities can be really effective, both for wellbeing and for the wider rehab progress.

And has this work been part of a collaborative approach between different therapists or more the focus of the psychology team?

Darren: “It’s been both. The first time we ran the group, it was more multi-disciplinary, as the psychology assistant, therapy assistant and various other professionals dipped in and out of the group sessions. When we are working on a one-to-one basis with residents it’s more of an endeavour for the psychology team. But as we find more suitable interventions, applicable for a neurorehab setting, then the plan would be to share these with the care team and therapy team so they can support engagement with residents in as many rehabilitation activities and interactions as possible. I also plan to run some multidisciplinary CPD sessions to increase understanding about wellbeing and character strengths and hopefully to encourage professionals from different perspectives to contribute their expertise to the development of new character strength interventions.

And have there been any challenges with this exploration of Positive Psychology in neuro-rehab?

Darren: “COVID-19, isolation, social distancing and reduced access to the community was a big obstacle when encouraging residents to explore character strengths socially or to go out and try new experiences in the world. Hopefully, we are over the worst of those restrictions now.

“As I’ve hinted so far in our discussion, examples of

interventions in most of the published work in this field are designed for people with reduced wellbeing who are otherwise cognitively intact or free of physical impairment or disability.

These constraints are almost a defining feature of the population we work with in neurorehab. Some of the concepts of mainstream Positive Psychology are too abstract for our residents and many of the suggested interventions may be too physically or cognitively challenging for our residents. Hence the ongoing need to be innovative in adopting the principles for this area of application.

We are still at the stage of forging new ground with this.”

And those developments are really exciting and hold lots of promise. What do you have to be mindful of when being innovative in such a way?

Darren: “Well, another potential challenge is that rehabilitation is traditionally set up with an underpinning idea that you are aiming to regain lost functions and return to a previous state of being. In extreme cases, individuals may say things along the lines of ‘if I can’t get back to doing ‘X”, life won’t be worth living or rehabilitation is pointless’.

“Sadly, not all functions are regain-able following ABI. We try to support individuals to see that we are all changing, all of the time.

Our physical functions are changing and none of us can actually be the exact same person we used to be. So the idea that quality of life and wellbeing should be based on the hope that you’re going to get back to something from the past is quite precarious.

We try to move away from that. Positive Psychology principles enable us to help people to look at what’s actually still intact.

We focus on what’s still strong, not just what’s wrong…or gone.

Usually each person will have some parts of their character that are unaffected by what has happened to them. Aspects of themselves that they value, or they value in other people.

However it can take quite a lot of work for some people to see that, which is of course understandable considering everything that they have been through.

“Often individuals are focused on the loss, the things they want but didn’t get back, and they become dissociated from what’s actually still in them, that sense of continuity of self.

Positive Psychology can help them reconnect and re-engage with those character strengths, which really has potential benefits in terms of preserving wellbeing and self-acceptance.

Ultimately, the end goal of this type of work is to help our residents to establish a positive, post-ABI, sense of self that incorporates the residual changes but allows them to acknowledge that they are still able to experience fulfilment and wellbeing in life, now and in the future.”

References: Seligman, M. E., & Csikszentmihalyi, M. (2014). Positive psychology: An introduction (pp. 279-298). New York, NY: Springer Netherlands. Amanda R. Rabinowitz & Peter A. Arnett (2018) Positive psychology perspective on traumatic brain injury recovery and rehabilitation, Applied Neuropsychology: Adult, 25:4, 295-303,

35

NRTIMES

TECHNOLOGY

Care provider to develop sector-leading VR training A care provider is building on its experience of using virtual reality (VR) for in-house training to create the first programme of its kind for healthcare which is set to be rolled out across the sector.

Newcross Healthcare first began to adopt VR around three years ago, but over the past year has up-skilled its in-house learning and development team to create its own bespoke content to deliver new and engaging staff training.

The team has created a number of programmes and ‘virtual shifts’ to enable staff to learn more about the Newcross business and its continuing staff development to deliver the best possible client care.

Now, Newcross plans to take its expertise in VR to a new level, by expanding into learning and training through the creation of an ‘extended reality’ programme.

The pioneering new training - which will be a first for the healthcare sector - will enable the recreation of emergency situations, including life-saving first aid, to help staff develop their skills, confidence and ability to remain calm for when confronted with such an event in real life.

The system - which Newcross hopes to deliver within the next six to nine months - will be used in-house initially, but can also be used by clients and other care groups to help raise training standards and innovation throughout the health and social care sector.

“Our experiences of creating these environments has now enabled us to to define what how we want to use this in a learning environment,” says Mark Story, head of learning and development at Newcross.

NRTIMES

“We want to use technology - it might be VR, immersive, 360 videos, augmented reality - to allow people to experience stress environments so they can get over the initial shock factor and be able to think clearly for when it happens in real life.

“Our focus initially will be on those topics for learning that people might feel shocked by when they first come in or, by their nature, are stressful things.

“If you’re training someone in basic life support or in seizures, for example, you can only really go so far. But by being able to recreate that environment, for if and when it happens to them, they will be more prepared.

“It also has a role to play in keeping people’s skills fresh and up to date. With something like CPR, you hope that you never have to use it, but this could provide the opportunity to keep the skills at a simmer, as opposed to letting them go cold.

“That will be for internal [use] for healthcare staff, nurses and carers, and shortly after that it will be made available for external healthcare professionals. Our ambition is to offer this learning to anybody that wants to access it."

Having invested in the development of its own in-house capability, Newcross is now able to deliver something new for the sector, building on the training currently available and creating a cost-effective option for the marketplace.

“There is other training out there, but what we found is that it’s either immersive, so gives a bit of an immersion into the situation, or it’s something that has a simulation and assessment of a physical activity, or it’s something that is kind of broadly virtual reality.

“There doesn’t seem to be anything in there that brings these three pieces together, which immerses you, assesses you and keeps you in that virtual reality environment.

“So we think we can bring those things together in a new way for for healthcare.

“What we’re creating isn’t entirely new, and certainly exists in high-end learning activities, like training pilots, for example, or training surgeons. We know these sorts of learning interventions do work but we’re looking to create them for the mass market, to get thousands of people engaged as opposed to a small number.

“We want it to be democratised, to be cheap enough for us to develop and offer out to anybody who needs it. That’s what we’re working towards.”

36

PATIENT STORY

Sponsored feature

Rehabilitation through sport after Encephalitis - a case study Madeline Seibert, clinical negligence lawyer at Slater & Gordon, discusses how fitness training has helped one survivor who suffered serious brain injury resulting from herpes simplex encephalitis.

Herpes simplex encephalitis (HSE) is a type of infectious encephalitis which happens when the herpes simplex virus enters the brain. The virus is very common and around 90 per cent of adults become infected at some point during their life. The virus attaches itself to sensory nerves in the throat and moves to nerve cells where it sits as a hidden life-long infection. From time to time the virus can reactivate to produce recognisable symptoms such as cold sores around the mouth.

While the herpes simplex virus is widespread, HSE is rare. It is not known exactly how the virus accesses the brain, but it can cause severe inflammation and brain swelling. The Encephalitis Society website highlights that HSE usually develops over a period of days and typically begins with

NRTIMES

very generalised ‘flu-like’ symptoms such as headache, fever, nausea and drowsiness, followed by neurological deterioration. If left untreated, the symptoms can progress, become increasingly worse, and can ultimately lead to death.

Ollie* (now 23 years of age), was just 13 years of age when his life was devastated by HSE. His disease started with general symptoms of headache, vomiting and temperature which Ollie’s parents treated with child paracetamol. His mother, Carly*, recalls that Ollie’s school contacted her and said that Ollie was not feeling well and had a headache, she said “we just thought that this was a 48-hour tummy bug”.

However, Ollie deteriorated over the weekend culminating in Carly witnessing him having a fit. She says “his whole body seemed to bounce off the bed. It was horrific and I will never

38

PATIENT STORY

forget it to this day – seeing your child bouncing up and down uncontrollably, I immediately phoned for an ambulance.”

Ollie was rushed to a children’s hospital where he rapidly fell into a coma and was treated in the intensive care unit. He was diagnosed with HSE and his doctors gave his parents the devastating news that unless they carried out emergency brain surgery, Ollie would die. Ollie underwent surgery to remove part of his right temporal lobe and release the pressure in his brain. Fortunately, Ollie’s surgery was a success and he made an exceptional recovery, however he was left with only part of his brain leading to brain damage including cognitive deficit, memory loss and processing difficulties. This in turn causes Ollie to suffer severe anxiety. His parents describe that it is difficult for Ollie to process simple instructions and he needs a strict routine. Anything outside of routine can cause him to suffer distress and anxiety.

The Encephalitis Society advises that the most common complication in HSE post-treatment is memory impairment because the temporal lobe is commonly affected by the infection. Often patients present with cognitive deficits and impaired memory which can be very disabling, leading to the patient requiring a lot of additional care.

Ollie’s parents explain that he was allowed home from hospital after two months, but he was a different child to the one he was before his brain injury. When he was first discharged from hospital, Carly recalls that Ollie had no recollection of where he lived nor even where his bedroom was situated in his home. She says it was “like having a new-born baby all over again”. Ollie’s father, Steven*, describes how Ollie had to learn to walk and talk all over again. He said “there are still little parts of Ollie that are the same but his main personality was lost. His whole life changed.”

In terms of recovery, the Encephalitis Society highlights that although rehabilitation cannot return the person to the way that they were before the injury or cure their cognitive deficits, it can provide coping skills that lead to greater independence in everyday life and help to restore confidence and improve overall quality of life. Further, the right ‘person centred’ rehabilitation can help reintegration into the survivor’s community and social life.

Before his injury, Ollie was a bright and driven child who has a love and passion for boxing and football. He was a school boxing champion and as such had the benefit of a very close relationship with his boxing coach, Karl*. Karl first met Ollie when he was about eight years old and describes how even at an early age, Ollie was showing signs of boxing champion quality, “He was the leader of the pack and no one could beat him.

"He was the fastest on all of our records and his quick

39

reactions led to him being undefeated in three fights.

Ollie was destined to become a champion on many levels.

He was a very determined young kid.”

Karl was devasted to learn of Ollie’s brain injury and helped him to regain his strength and fitness by regular training at the gym. He describes that initially after his brain injury Ollie “was like a little skeleton, he was like a shell, he couldn’t talk, it was really hard to see”. However, with regular training at the gym, piece by piece, Ollie regained his strength. Karl recalls: “I would help him to train – getting him to remember foot work patterns and generally using his motor skills. Initially he would be tired after 10 minutes but little by little we gradually increased his fitness levels.”

Incredibly through hard work and training at the gym several times each week, Ollie went on to qualify as a coach although due to his brain surgery he is unable to participate in contact boxing and due to his processing difficulties, he requires supervision. However, Karl explains that Ollie is “very much in tune with his body” and although he has cognitive disabilities, the fitness training helps him to feel more confident, secure and less anxious.

Despite the huge obstacles in Ollie’s life caused by his brain injury, he has found happiness, positivity, fulfilment and ultimately a successful form of rehabilitation through his sports training. His parents say that he is an inspiration to all who meet him, particularly the younger children at his club whom he helps to coach.

However sadly not all survivors will have the close community links that Ollie had the benefit of before his injury. The Encephalitis Society stresses that many people affected by encephalitis are discharged without adequate assessment or consideration of their rehabilitation needs.

I asked Ollie’s case manager, Helen Brooks of N-Able Case Management, what her experience is in respect of rehabilitation for survivors of HSE and where they can be sign posted for help.

She says that The Encephalitis Society (www.encephalitis.info) is a good starting point to identify signposting towards support services, along with Headway UK. Headway UK have local groups throughout the country who can provide support and local groups can be found at www.headway.co.uk. Rehabilitation services and support, as in all aspects of brain injury, are very variable within the UK and understanding of encephalitis is particularly limited.

She would encourage us all to support Chris Bryant and the ABI Bill to gain a strategy to improve these services. Ollie has been fortunate in having such dedicated people around him and exploring his identity in sport has been a critical part of his rehabilitation to date. *names have been changed to protect identities

NRTIMES

THERAPY

Sponsored feature

Never say never ‘You’ll never be able to’ is a phrase the team at Think Therapy 1st readily admit to actively fighting against.

It certainly isn’t in their vocabulary when it comes to how they interact with clients.

NRTIMES

40

THERAPY

Group back row: Helen Merfield, Alison Pursehouse, Fiona Peters, Emma Roddis, Aimee Crane 2nd row: Natasha Bruce-Jones & Steph Fleet Front: Penny Wosahlo

“So many people are almost written off by medical professionals even at the start of their rehab journey, but you’ll never hear that from us,” says managing director Helen Merfield.

“Instead of just saying ‘you’ll never be able to walk again’, if it’s remotely possible, we’ll do absolutely everything we can to get them walking again.”

And specialist rehabilitation occupational therapy (SROT) provider Think Therapy 1st has a stellar record when it comes to delivering such life-changing outcomes for clients across the country, in home and community-based settings.

From the woman told she’d never be able to walk again, who, following support from the team, was able to walk three miles around an air ambulance field with a walking frame to raise money for their charity. To the man told he’d never be able to live unsupported, who now lives completely independently and looks after his son every other weekend.

“We also had an 84 year-old lady who played badminton five or six times a week; I think she was semi-professional in her youth. She was told ‘you'll never play badminton again’ and that destroyed her soul to start with,” recalls Helen, an exmilitary nurse.

“Luckily, we said ‘don't listen to them. We'll get you playing badminton again’. And we did. Five days a week. We had to adapt her serve, sometimes she used a chair, but she was playing and she was happy, and that’s exactly what we want to achieve for our clients.” That commitment to overcoming the seemingly impossible is what Think Therapy 1st (TT1st) believes is its real difference.

41

By putting clients at the heart of the rehab, empowering them to take the lead on what they want to do, the TT1st OTs combine challenging and stimulating activities into therapy sessions which will enable them to progress.

“We wrap therapy around small, everyday tasks, and then build on that so they can get to where they need to be and get their lives back on track,” says Helen, whose fellow owner-directors are two OTs and a social worker.

“We explain the process of what we're doing and why we're doing it. So, for example, we might go on a woodland walk, which is maybe something they used to enjoy but haven’t done for a long time, they'll also be working on their exercise tolerance, their coordination and general mobility.

We’ll explain what we’re doing and why we’re doing it, and then they’re much more engaged in the process.”

Think Therapy 1st also has a dedicated children and young adults service (CAYAS), which delivers specific paediatric support, provided with the same ‘never say never’ determination of its adult service.

“We had one boy who had a head injury, but prior to that he was up at 5am every day doing his newspaper round,” says Fiona Peters, CAYAS service lead.

“So, one of the first things I did with him was get him to draw me the map of his route, and then we went to walk it. And that helped him realise he’d forgotten part of it, but it was also really healing for him because he dropped in on a few people he used to deliver the newspapers to.”

“Working with parents, I think it's about drip feeding information.

NRTIMES

THERAPY

Sponsored feature

Helen & Fiona

At first, they can be hypervigilant, wrapping their child in cotton wool, which is understandable, protecting them from challenges. Our role is to support the parents to feel confident in confronting challenges rather than shy away or deny their children the opportunities these present to bring about positive change. It’s about ensuring the parents are aware of and engaged in the therapeutic process.”

“We really focus on embedding the learning, not through reams of paper or stuff to read on the computer; we help them to feel it, to understand it. And I feel like that's where our speciality lies, in supporting them to understand their situation and to know where they can head with it. In what we do, the OT would be the head of the multidisciplinary team but we are standing arm in arm with the client,” says Helen.

“If they need physio, speech and language therapy, neuropsychology, any other modalities, the OT would work with them to help them engage those people. We make sure that we are aligning our goals in a really multidisciplinary way.”

“For example, any neuropsychology outcomes would be really informative for our process of what to concentrate on with the client. We try to make sure that the goals are aligned so that it works in the client’s best interest at all times.”

“But I think where we really do go that extra mile is in building in a relapse prevention plan whilst we are still involved, so people recognise what they’re doing, while they’re doing it. They are at the centre of the process - we don’t just want people to have things done to them, we want them to be part of it.”

Fiona adds: “Historically people have been passive recipients of the medical model, just waiting for medical recommendations.

We are changing the locus of control so the clients are full participants in their own rehab journey.”

“We help our clients understand, that in order to get to the kitchen to make a cup of tea, which is what they really want

NRTIMES

to do, they could be doing things of benefit to their recovery flexing their leg, building their standing tolerance, co-ordination, thinking, planning, and other executive functions as well.”

TT1st are also very definite about the time period they spend supporting a client - a maximum of 12 months of hands-on therapy, with up to three-months transition period.

“The analogy I like to use for transition is that it's like having stabilisers on a bike, once you take the stabilisers off, you don't just let them go and hope for the best,” says Helen.

“We want a person to be as independent as possible when we leave; they always know they can come to us if there’s a crisis or if something new is happening in their life, but the purpose of what we do is to train them and empower them to be autonomous.”

TT1st also has dedicated functional management of pain, fatigue and anxiety programmes. HELP – Holistic Education for Living with Pain, HEAL – Holistic Education for Anxiety Liberation, and FEEL – Fatigue Education & Exploration for Living which correlate with NICE guidelines.

“We were finding that a lot of our clients suffered from pain, fatigue and anxiety when we met them, and the impact of having been left for a long time, without any support for this, had made things worse. People were being referred to us late; they’ve often become quite entrenched in the medicalised version of their health, and pain becomes a debilitating factor,” says Helen.

“The quicker we get them, no matter what the injury, the quicker we can get them better, because they haven't become entrenched in the medical model. In our experience, pain is something doctors often disregard, but through holistic education, we can help make lasting changes to how people control and live with pain.”

The business, established six years ago, has built a strong reputation for its service - and particularly its outcomes - and continues to expand. With a core team of in-house OTs, it has growing numbers of associates across the country who deliver its bespoke support to clients.

“Cases come to us from all over the country, and we identify local OTs with the appropriate skills to work with each client,” says Helen.

“One of our in-house OTs acts as the long-arm mentor on every case. We meet monthly to review each case, and every single one is discussed by all the team. So, there will be seven OTs and a nurse looking at all the cases, to make sure they’re on track.”

Fiona adds: “I think OTs are used to working within boundaries, but when they join us, they suddenly see they have limitless potential. We believe that if you can clinically reason why something is beneficial to a client, we can generally find a way of supporting that, and finding the funding to achieve it.”

42

ADVANCED TECHNOLOGY TO KEEP YOU ON THE MOVE ADVANCED TECHNOLOGY TO KEEP YOU ON THE MOVE

THERA-Trainer THERA-Trainer COMPLETE THERAPY THERAPY COMPLETE SOLUTION SOLUTION

Using the the THERA-Trainer THERA-Trainer Using Complete Therapy Therapy Solution Solution Complete

in your rehabilitation setting offers dynamic in your rehabilitation setting offers dynamic and interactive sessions with recordable proven outcome. and interactive sessions with recordable proven outcome.

CYCLING CYCLING

STANDING STANDING

BALANCING BALANCING

TO ARRANGE A FREE DEMO/LOAN FOR YOUR DEPARTMENT TO ARRANGE A FREE DEMO/LOAN FOR YOUR DEPARTMENT OR TO REQUEST A BROCHURE CALL US ON 01908 564100 OR TO REQUEST A BROCHURE CALL US ON 01908 564100 or email info@medicotech.co.uk or email info@medicotech.co.uk

GAIT TRAINING GAIT TRAINING 01908 564100 01908 564100

info@medicotech.co.uk info@medicotech.co.uk www.medicotech.co.uk www.medicotech.co.uk MEDICOTECH MEDICOTECH

RESEARCH

Research is at the heart of making change happen Research to highlight the lived experiences of athletes and their families who are affected by brain injury and neurodegenerative disease is “crucial to shifting the narrative” around safety in sport.

As evidence continues to build around the cumulative effect of head impact sustained through sport, action to protect players now at all levels of participation in football and rugby is not being taken as swiftly and decisively as many would like.

While the FA has introduced guidance around heading in training sessions for players from professional through to grassroots and youth levels, and the RFU has recommended a limit on full contact training, the fact it is not binding means that players are not afforded any greater guaranteed protection than before.

Recently, Dr Matthew Smith, senior lecturer in sport and exercise psychology at the University of Winchester, led a study which highlighted the impact of neurodegenerative disease on the families of deceased athletes, and laid bare the trauma an entire family experiences.

Research into the family perspective of brain injury or neurodegenerative illness is scarce, but Dr Smith believes it is crucial into helping both to deliver better and more tailored support to families, as well as making change which will positively impact future generations.

“In sports psychology, you have lots of research around injuries or mental health, but you rarely hear stories from the family's perspective,” says Dr Smith.

“I've written a paper on the mental ill health in cricket players, which is from the perspective of the cricketers. This is a further example of where it would be interesting to hear from the family members of the cricketers who are also deeply

NRTIMES

affected in this instance.

“In the current study, many athletes were larger than life characters, the life and soul of the party, whose brains basically stopped functioning properly. This has a huge affect on them, obviously, but it’s having a massive effect on the people in their lives - wives, partners, children. Such severe decline is very difficult for families to manage.

“So we need to look at these different perspectives of how families are coping. We’re in an interesting point in time currently in the UK, where governing bodies are having to process the emerging compelling evidence of the dangers in their sport."

Dr Smith’s research into the impact of CTE on families was carried out in the US in conjunction with the Concussion Legacy Foundation, a charity led by Dr Chris Nowinski which is widely credited with helping to revolutionise safety in sport in the United States, since Dr Nowinski’s 2006 exposé of the lack of safety protocols in NFL. In America, it’s more advanced. These debates have been happening for a number of year now, and has led to rule changes aimed at making sports such as American Football safer.

Many fans, players and parents of aspiring sports stars have spoken of their desire not to lose participation in ‘proper’ sport through restrictions on heading or contact - but while opinions are certainly changing, some readily admit to not seeing the need.

44

RESEARCH

And at the root of altering such opinions, which will ultimately force the need for change, is research, says Dr Smith.

“One of the broader purposes of this research is to create greater understanding and awareness of head injuries in sport, how it affects both the athletes and their families, and to try and shift the narrative in the right way,” he says.

“There's still a cultural debate about safety in sports, but research is crucial to shifting the narrative here. As an example, in the UK, among under 12s playing football, heading in training has been banned.

“Yet, anecdotally, my understanding by talking to friends who have children who play football is that coaches are basically saying that heading is part of football and are asking parents whether they want their children to be playing ‘proper’ football.

Or in rugby, suggesting whether they want their children to play ‘proper’ rugby with tackling. Using this argument, parents will likely say yes to that.

“In a lot of cases, this is happening these attitudes are prevalent because people don't understand the dangers of head injuries, particularly for children who are even more susceptible as their brains are not fully developed.

"That’s why research is needed, which can explain it from different perspectives and shift that culture.

45

“Over the next ten, 15 or 20 years, I’m sure this will change, but research is needed to create awareness and speed up a change in perceptions - because the more people whose children are playing football and heading the ball regularly, the more likely they are to be affected later in life by neurodegenerative conditions..

“Steve Thompson [England Rugby World Cup winner recently diagnosed with early-onset dementia and probable CTE] said his illness is probably having a bigger impact on his family than it is on him, which I think shows exactly why we need to look more at the experiences of the family.”

To continue the focus on lived experiences as a means of changing views within society, Dr Smith is hoping to embark on further research projects to highlight the devastating impact sport continues to make on whole families.

“In terms of where this research might go next, I'd really like to speak with athletes who are still alive who are going through this, who are still functioning enough to take part,” he says.

“But to extend this, I'd like to do multiple interviews where we interview the player, and also their partner, their children, their parents. This would allow us to tell the story from the different perspectives, and explore how neurodegenerative conditions affect the whole family in different ways."

NRTIMES

BRAIN INJURY

Sponsored feature

A holistic perspective on Post-traumatic amnesia By: Dr Vishelle Kamath

Consultant neuropsychiatrist – St Andrew’s Healthcare

Dr Sanjith Kamath

Executive medical director - St Andrew’s Healthcare

Dr Awut Majak

Speciality doctor - St Andrew’s Healthcare Background Post-traumatic amnesia (PTA) can be defined as the period following traumatic brain injury (TBI) during which continuous memories are unable to be established. This is the time after a period of unconsciousness when the injured person is conscious and awake, but is behaving or talking in a bizarre or uncharacteristic manner. The terminology of PTA is misleading as the name alludes to a single primary deficit in memory.

While the inability to consolidate new memories or anterograde amnesia is the hallmark of PTA, further characteristics include impairment in orientation, attention and executive functioning along with retrograde amnesia and disinhibition.

This article is based on a narrative review supported by the clinical experience of delivering interventions following traumatic brain injuries in patients on the Brain Injury Assessment Ward, at St Andrew’s Healthcare. The review included the definition of PTA, presentation, assessments and management.

NRTIMES

Pathophysiology PTA can occur when the force of an injury results in breakage, bruising and/or swelling of the axons with the consequence that message pathways are interrupted and/or broken. This is commonly described as Diffuse Axonal Injury (DAI). Diffuse axonal injury has been shown to be the main determinant of the relationship between PTA and severity of injury.

The amnesia resulting from trauma may be retrograde amnesia, particularly where there is damage to the frontal or anterior temporal regions. However, in some cases, anterograde amnesia develops several hours after the injury.

PTA may be either short term or longer lasting, in some cases over a month, but is rarely permanent. When continuous memory returns, the person can usually function normally.

Retrograde amnesia sufferers may partially regain memory later, but memories are never regained with anterograde amnesia because they were not encoded properly. Memories from just before the trauma are often completely lost, partly

46

BRAIN INJURY

occupational, educational, forensic and social history including any history of substance misuse. This will involve obtaining information from a variety of sources including interviews with family and friends and a detailed review of all multisource case records. The assessment should continue after the period of PTA has ended as the person progresses to the rehabilitation phase.

There should also be consideration of the use of the appropriate legal framework, such as detention under the Mental Health Act or provisions of the Mental Capacity Act during treatment and hospital stay.

Why is PTA important?

PTA has long been considered one of the strongest predictors of global outcome in severe TBI, and it is used as an instrument for determining the required level of patient supervision, as well as the timing and planning of discharge. In addition, PTA has been demonstrated to have more precise predictability of outcome, in terms of functional independence level, disability severity, and determining the level of required supervision than either the Glasgow Coma Scale and the presence of loss of consciousness and cognitive impairment in TBI.

due to the psychological repression of unpleasant memories (psychogenic amnesia), and partly because memories may be incompletely encoded if the event interrupts the normal process of transfer from short-term to long-term memory. There is also some evidence that traumatic stress events can actually lead to a long-term physical reduction of the volume of the brain’s hippocampus, an organ integrally involved in the making and processing of memories.

Clinical presentation and MDT assessment – the need to undertake a comprehensive multidisciplinary assessment Patients with PTA may present with confusion, agitation, distress and anxiety. Other features seen are uncharacteristic behaviours such as violence, aggression, swearing, shouting, disinhibition, inability to recognise familiar people, and a tendency to wander.

However, in other cases, individuals may be uncharacteristically quiet, docile, loving and friendly. Other features may include headaches, nausea, vomiting, dizziness, unsteady gait and intolerance to bright light or loud noise (Liersch et al, 2020: Liersch, K., Gumm, K., Hayes, E., Thompson, E. and Henderson, K. (2020). TRM 01.01 POST TRAUMATIC AMNESIA SCREENING AND MANAGEMENT GUIDELINE Trauma Service Guidelines Title: Post Traumatic Amnesia Screening and Management Developed by: K. Gumm, T, Taylor, K, Orbons, L, Carey, PTA Working Party Created: Version 1.0, April 2007 Revised.

In all patients, it is essential to undertake a comprehensive multidisciplinary assessment of their health, impairments, as well as care and support needs. This enables staff to provide appropriate levels of support and intervention and should include neurological impairment, cognitive and communication abilities, eating and drinking abilities, nutrition and hydration status and psychological and behavioural difficulties.

The assessment should include the gathering of a comprehensive medical, psychological, psychiatric,

47

The importance of family and friend engagement It is important to work with the family and friends of the patient to help increase their awareness and understanding of the presentation and the likely prognosis. It can also sometimes be beneficial to the patient if visits are short and to acknowledge that too many visitors at once may be overwhelming and difficult for the patient to manage. All this will help the family understand the patient’s need for rest and quiet without excessive stimulation. At times it may be better just to sit quietly with the person rather than engage in too much conversation which the person may find overwhelming and may struggle to follow.

Protecting a person’s right to privacy Protecting the patient’s right to privacy and dignity is also an important consideration for the treating team. The family should be supported to think about who should be permitted to visit.

The patient may behave in a manner which is out of character and perhaps embarrassing for them and it may be helpful to wait until the patient is more settled and potentially more able to communicate effectively and appropriately.

Visitors may find it appropriate to visit on a rota, especially if they feel unable to leave the patient without familiar faces for any length of time. It is also useful to provide guidance on how best to support communication with the patient.

Testing The Westmead Post-Traumatic Amnesia Scale (WPTAS) is the most commonly used method for measuring PTA (Kosch et al, 2010). WPTAS is a standardised and validated instrument which is suitable for patients with moderate-to-severe traumatic brain injury. It is a prospective measure of PTA and has been shown to have a high level of interrater reliability. The scale contains 12 questions related to orientation and memory. These include seven in relation to normal day-to-day orientation and five for testing the laying down of new information as well as autobiographical memory, such as age and date of birth. It can be conducted by any trained member of the multidisciplinary team in a variety of settings.

NRTIMES

BRAIN INJURY

Sponsored feature

A care approach for people suffering with PTA The care of a patient suffering from PTA requires a multidisciplinary approach that addresses the patient’s environment, their interactions within that environment and their cognition and behaviour. Patients with PTA require a consistent team approach to create and maintain a lowstimulus, quiet and supportive environment. These patients require a lot of rest with only short periods of stimulus. The following are recommended; • To be nursed in a single room where possible, in a quiet and calm environment • Reduction or minimisation of external stimuli • Develop a consistent routine and structure. This will include clustering activities so patients are not overwhelmed, and allowing enough rest in between activities or tasks • Carefully managing visits • Create a familiar environment; using a few key personal objects and photos.

• Clear communication within the multidisciplinary team, by using appropriate yet discreet signage on the patients’ room door to notify all staff that the patient has PTA • Using a modified approach to ward rounds, assessment, meals and care.

• Keeping instructions simple during communication • Appropriate occupational therapy and nursing interventions during PTA to include introducing the patient to simple tasks such as personal care • Family support by the multidisciplinary team to ensure a focus on education and the provision of support for family and friends • An understanding that management strategies for patients who present with aggression that involve negotiation and problem solving are unlikely to be successful • The use of sedation to manage behavioural problems to reduce the patient’s level of arousal can increase confusion and prolong agitation as indicated by inconclusive studies relating to this area.

• Restraints should also be avoided as they can lead to greater agitation.

Our experience of PTA at St Andrew’s Healthcare The Brain Injury Assessment unit, Tallis ward, at St Andrew’s Healthcare, often receives referrals for patients with PTA who present with severe and challenging behaviour. The team has adopted a holistic, multidisciplinary approach based on the points described above. This includes ascertaining a robust and comprehensive history from family and other professionals alongside assessments undertaken in relation to physical health, functional ability, cognition, behaviour and communication.

Physical health considerations include seizure management, mobility and falls assessments, dysphagia and nutritional assessments and ongoing maintenance of skin integrity. Each of these is modified and adapted to the individual patient and their presentation at the time. Environmental adaptations like the use of an extra care area on the ward associated with concerted efforts to reduce external stimuli are also employed.

Assessments related to the use of appropriate and least restrictive legal frameworks are usually continuous and relate to timely and decision specific capacity assessments, including those related to consent to treatment and care.

This wide range of comprehensive interventions enable the team to effectively implement risk manage and treatment strategies to safely support patients through an episode of post traumatic amnesia to reach a point where they can embark on their rehabilitation journey.

To find out more about St Andrew’s Brain Injury services visit; Stah.org/brain-injury

PTA has long been considered one of the strongest predictors of global outcome in severe TBI, and it is used as an instrument for determining the required level of patient supervision, as well as the timing and planning of discharge.

NRTIMES

48

INPATIENT REHAB

Sponsored feature

‘Home from Home’ creates win-win situation As the recruitment crisis in care deepens, Richardson Care finds that creating the right home environment is a win-win situation.

Since it was established in 1989, the ethos of Richardson Care has been to create a feeling of community and belonging. The company now has six specialist residential care homes for adults with acquired brain injury or learning disabilities.

Feedback from service users, their families and the staff describes each care setting as ‘a home from home.’ So why is this important? Firstly, if service users feel comfortable and safe, they are better able and more motivated to engage with their therapies. The holistic approach combining neuro-psychological, physio, speech & language and occupational therapies contributes to their wellbeing. This enhances their quality of life and increases independence.

The atmosphere within the homes is positive and fun with much laughter and banter. In addition, the service users are supported to take part in a wide range of activities – both in the home and in the community. This is also great for the staff. They

get a huge amount of job satisfaction from the interactions they have with the service users and by sharing in their achievements.

This, combined with support from managers and a training programme that’s second to none, leads to staff retention, which in turn provides valuable continuity for service users.

For more information call 01604 791266 or go to www.richardsoncares.co.uk

Respect & Restore Specialist residential care and rehabilitation for adults with acquired brain injuries.

• Portfolio of services to meet a variety of needs • Innovative person-centred care • Unique ‘family’ environment • Focus on social integration • 30-year proven track record Proud to be an independent family business.

Call us on 01604 791071 to find out more or email admissions@richardsoncares.co.uk

www.richardsoncares.co.uk The Richardson Mews, Kingsland Gardens, Northampton NN2 7PW

49

NRTIMES

COMMUNITY

Answering the call for increased community MS support Two vital programmes to support people living with MS are broadening their reach in response to the increasing need from across the country, which has been exacerbated by the pandemic and the knock-on effect of a shortage of community resource and growing waiting lists.

NRTIMES

50

COMMUNITY

People can get lost in the community, not knowing how to navigate the system anymore

The specialist MS nurse and advanced MS champion programmes, operated by the MS Trust, are both growing to help meet demand for people who need greater support; something which has increased significantly during the pandemic, with support being scaled back or stopped for many amid mounting pressure on NHS resources.

The MS nurse programme - which provides the NHS with a support package, including funding 80 per cent of the nurse’s role for the first 15 months in post - has recently moved into the Walton Centre in Liverpool, with three more nurse roles planned this year.

The charity is currently undertaking its biannual survey of MS services nationally, assessing the landscape of support and the changes seen since 2018.

“We have three nurses planned for this year, with a basic plan of six over the next two years, and to scale up the programme in response to the need,” says Paru Naik, director of health professionals programmes at the MS Trust.

“In our survey, we will look at what’s happened, what services are no longer there, what the support is looking like. We’ll analyse the results and work out where there is the most unmet need and the least resource.

“Every person should have access to an MS nurse, and you can identify the difference between having and not having that.

“There are so many issues that face people with MS and these roles help in navigating the situation, what are the right resources and how to access them.”

Its advanced MS champion initiative, which delivers guidance to people with MS in navigating the health system and accessing resources, has also seen its value proven after a successful pilot in six sites.

The work to date with its advanced MS champions also enabled support to continue in the community, which is proving increasingly vital in meeting demand amid ongoing backlogs.

“People can get lost in the community, not knowing how to navigate the system anymore,” says Paru.

“The waiting list increases are having a huge impact and there

51

isn’t always the access to NHS resources. There are 130 people in the UK diagnosed with MS every day, and 40,000 with advancing MS who are not on any drugs, who don’t have access to the acute sector.”

While both programmes had to be paused during the pandemic due to resource issues - both within frontline healthcare and the MS Trust, where its enquiry line became a hugely effective resource during times of lockdown - they are now stepping up support at a time when it has never been more needed.

But during the past 18 months, it was the MS Trust’s virtual support which proved invaluable for those who needed its support, with the increase in demand for its services necessitating rapid development of its enquiry line. The charity was able to access funding from the National Lottery Community Fund to support its scale-up.

“Frontline services were being reployed and it was very difficult for us to engage with health professionals at that time,” says Paru.

“We recognised people with MS needed a different kind of support, so deployed our own resources differently to help meet demand for our enquiry line. We always knew our two programmes were going to be re-started, they’re real USPs for us and we know only too well how vital they are, but at that time it was a question of resource.

“We were suddenly inundated with enquiries, the vast majority of which were COVID-related, so we diverted our energy into how we could create a resource both we and health professionals could direct people to.

“Our website was also a priority, and we started to add online content based around COVID, including videos, blogs and personal stories, to help support people remotely.

“This all happened as we were moving to work from home, with around 50 per cent of our team going on furlough leave, but the transition felt seamless.

"We recognised the need for our support and we’re really proud of how we met that.”

Having relied on virtual means of communication during the pandemic, the MS Trust team are now returning to the office and are resuming face to face contact, but will be following a blended approach of both going forward.

“Virtual will be right for some but not for others. For some, things will have been missed and lost, and it’s important we address that at the earliest opportunity,” says Paru.

“We’ll have a look at each patient and see what the balance looks like for them. It’s still a work in progress and we’ll be taking a personalised approach to each person.”

NRTIMES

At least one in three stroke survivors are living with clinical levels of loneliness, a new study has found, prompting calls for clinicians to routinely screen for such a situation and devise a bespoke solution for each patient.

NRTIMES

52

RESEARCH

The research, the first large-scale study of its kind, revealed that stroke survivors are at least 70 per cent more likely than the general population to experience loneliness.

Prevalence rates of loneliness among survivors ranged from 30 to 44 per cent, with levels of anxiety and depression both of which are recognised as psychological consequences of stroke and are routinely screened for in clinical assessment - at 25 per cent and 30 per cent respectively.

The study, from the University of Bangor, revealed that many who are not objectively socially isolated may experience high levels of loneliness. This suggests that it’s the individual’s subjective experience of their social situation that is important, rather than the quantity of social contact.

Calls have now been made for greater recognition of loneliness as a consequence of stroke, and for action to be taken to give appropriate support to each person affected.

“Clinicians need to start thinking about the whole profile of the person cognitively, taking into account their pre-stroke personality and who they are, rather than ‘one size fits all’ approach of peer support or social groups, which is unlikely to always be the answer,” says Dr Christopher Byrne, who led the study and whose work received the 2021 British Neuropsychological Society Humphreys & Riddoch Prize.

“The findings suggest that one in three people who come into the clinical room are suffering from loneliness and that’s really quite heartbreaking. We need to screen for loneliness and think about how to make interventions on an individual basis.”

Clinicians need to start thinking about the whole profile of the person cognitively, taking into account their pre-stroke personality and who they are, rather than ‘one size fits all’ approach of peer support or social groups, which is unlikely to always be the answer.

53

The research team, including Dr Richard Ramsey from Macquarie University, Sydney, Australia, analysed ONS data from 21,874 people in Wales between 2016 and 2018, of whom 244 had a history of stroke - a percentage broadly replicated among the wider UK population.

The findings that up to 44 per cent of those with a history of stroke reporting they are lonely marks a three-fold increase on studies looking at loneliness among the general population, and double the level seen in general primary care outpatients.

The fact loneliness exceeded instances of depression and anxiety is a significant finding, says Dr Byrne, who also works in the North Wales Brain Injury Service.

“I started to recognise that loneliness was a very common problem for people with ABI. While clinicians routinely assess for anxiety and depression, no-one asks whether someone is feeling lonely,” he says.

“This was a common occurrence in the clinical room, but the support just isn’t there. This is why I wanted to do this research. In the NHS, we get people along to social groups and peer support, but I think the research helps to show the need for more tailored intervention.

“The fact that we found people can be lonely even in an environment with a lot of social contact, which is very different to social isolation, and presents the challenge of how can we help in these situations?

“This helps to show that interventions should target greater quality rather than quantity, and they need to be determined individually taking into account the holistic picture of the patient.”

Dr Rudi Coetzer, clinical director at The Disabilities Trust and honorary professor at Bangor University, supervised Dr Byrne’s research. ”This novel research utilising big data helps to make more visible the profound loneliness many persons with stroke experience and reminds us of the importance of considering in greater depth the emotional lives of those we care for after brain injury,” he said.

NRTIMES

INPATIENT

Sponsored feature

Cygnet Newham House Neuropsychiatric rehabilitation for women One year on and Cygnet Newham House in Middlesbrough is going from strength to strength providing a bespoke neuropsychiatric rehabilitation pathway just for women.

This unique inpatient service offers bespoke assessment, review, and treatment of neuropsychiatric presentations following an acquired brain injury, neurodegenerative or functional neurological disorder for women.

Research confirms that recovery from a significant acquired brain injury or neurological insult is better achieved within specialist units (McMillan T, Oddy M. Service provision for social disability and handicap after acquired brain injury. In R Ll Wood, T McMillan (Eds), Neurobehavioural Disability and Social Handicap Following Traumatic Brain Injury. Hove, Psychology Press; 2001).

NRTIMES

To meet the need of this complex patient group, the environment and staffing skill set at Cygnet Newham House mirrors that of Cygnet Health Care’s other existing neuropsychiatric hospitals. Emphasis on a bespoke service user experience supports the roles that individuals find themselves trying to manage at the same time as recovering from a severe neurological injury e.g. care giving and parental roles.

We support women from across the country and can identify with the current trends of increasing numbers of those acquiring a brain injury. A high prevalence of brain injuries in women are caused through domestic violence, self-harm and/or substance abuse. Service users with head injuries often present with a wide range of co-morbidities and dual diagnoses which can include epilepsy, psychosis and organic personality change with complex presentations around mood, depression and anxiety, often incorporating suicidal ideation and attempts as well as other neuropsychiatric disorders.

The environment is key; a purpose built 12 bed ground floor service with en-suite bedrooms, accessible facilities, multi-functional outdoor space including gardens, additional meeting rooms and therapy spaces with a further two 4 bed bungalows on site. One such bungalow is the service offering those diagnosed with a functional neurological disorder an assessment and treatment facility.

Women diagnosed with functional neurological disorders are presenting to Cygnet Newham House with both motor and sensory deficits. Treatment for this condition requires a specialist pathway utilising a full interdisciplinary approach.

Symptoms are severe and complex in their manifestation for this patient group.

54

INPATIENT

At Cygnet Newham House we take the time to know our service users and identify the rehabilitation goals that are meaningful to them, working closely with our service users, families and carers. We cater for a wide range of presentations and have a broad range of disciplines within the therapies team, including; consultant neuropsychiatrist, consultant clinical neuropsychologist, speech and language therapist, occupational therapist, physiotherapist, dietician and assistant psychologists as well as nursing and support workers.

Dr Rowett, consultant neuropsychiatrist, said “I feel privileged to work in such an exciting and rapidly developing specialty. This is the most comprehensive team I have ever been part of. We have come a long way in the last year and are already experiencing success with positive discharges. I am looking forward to future years of success at Cygnet Newham House.”

For more information, please contact Rachael Chamberlain on 07872 401048, rachaelchamberlain@cygnethealth.co.uk or visit www.cygnethealth.co.uk

At Cygnet Newham House we take the time to know our service users and identify the rehabilitation goals that are meaningful to them, working closely with our service users, families and carers.

55

NRTIMES

CASE MANAGEMENT

Sponsored feature

How mental health impacts physical rehabilitation Mental health issues are all too common, with the numbers of people impacted by mental ill health rising significantly, particularly as the effects of the pandemic continue to be realised.

And while the true extent of such problems is probably yet to be fully understood, research is continually uncovering the power of the connection between the body and mind.

For those of us working with individuals who have experienced a life changing injury, the impact of mental health on physical rehabilitation is clear to see - in both positive and negative ways.

With around one in four people in the UK experiencing a mental health problem every year, it’s possible that someone living with life-changing injury faced mental health challenges before their accident - which only amplifies the situation they now face.

But even if someone has no pre-existing mental health concerns, such injury will most probably adversely affect their wellbeing.

This can manifest in feelings of overwhelming distress, confusion, anger, fear, hopelessness, anxiety and depression or the development of phobias, panic disorder, catastrophisation or post-traumatic stress disorder (PTSD).

Awareness of mental health and its implications is vital knowledge for any case manager. Because of the close connection between the health of the body and mind, and the potential for mental struggles to impact on physical recovery, mental health support is an important element of nearly all our rehabilitation programmes.

From a Breakthrough Case Management perspective, our rehabilitation programmes will almost always bring in a qualified psychologist. We understand the impact mental turmoil can

NRTIMES

have on a client, and we work with a team of psychologists who we match with a client depending on their requirements and their injury or situation.

Mental health support should always be considered as part of a holistic approach to rehabilitation, so we work collaboratively with the entire multi-disciplinary team, to understand the challenges our clients are facing and deliver the support they need to move beyond them.

There is so much going on for someone who has experienced a life changing injury, which might include anything from sleep problems and financial difficulties to relationship issues. We understand that when we ask someone to be motivated and push themselves physically, it’s going to be even harder if they aren’t feeling well mentally.

But while many people struggle badly with significant mental health issues, the situation can vary greatly from person to person. It doesn’t need to be a mental health crisis or severe depression to require attention and action, the symptoms can be less severe.

Feeling overwhelmed and fearful is common after a traumatic injury, which can lead to lower motivation, reduced engagement

56

CASE MANAGEMENT

or a wish to isolate. All of these factors can cause great distress to a person (and their family), which can also delay or impact the success of physical rehabilitation.

We see clients who sometimes feel the effort required may not be worth it. This might be because the gains don’t seem big enough, the status quo feels more comfortable, or they are frightened they will injure themselves further.

They can withdraw, feel helpless and become anxious – but staying in that place limits potential. We’re here to help our clients take back control and look towards a more positive future.

So, what can we do when a client is struggling to cope with their mental health? The psychologist’s role in the multidisciplinary team is vital, to identify the problem and develop a plan to address it. But every member of the team needs to be involved if a client is going to reach their goals, whether that’s getting themselves out of bed in the morning or walking a mile.

At Breakthrough, our case managers work with each client as an individual to find out exactly what they need to reach their goals and then bring together the best possible team to support them.

This might involve a personal trainer, occupational therapist, neuro-physiotherapist, vocational therapist and psychologist for example. They will also identify any other issues that might be interacting to affect ongoing rehabilitation – such as sleep, appetite or medication – and organise professional, practical or financial help to address them.

Even before establishing a team, the starting point is to set realistic SMART goals broken down into achievable milestones, which a client can get behind and truly believe they are able to achieve.

These goals must be backed up by trust – in the case manager, team and whole rehabilitation process. Developing this trust starts from the very first time we meet a client, where we start to build their confidence in our professional expertise and experience.

When someone has been traumatised, rehabilitation can take a long time and it is, of course, not always easy. But with a plan and the right support it is possible to overcome obstacles that might have previously felt insurmountable.

The more people push themselves forward and see the benefits of the work they put in, the more resilient they become.

A positive attitude is also important. At Breakthrough Case Management, we are naturally optimistic, and this positivity, alongside our tenacity, supports our clients.

We won’t ever give people false hope – we never promise that everything is going to be all right when it isn’t. But what we will always do is work together to find out what is possible, set realistic goals and make the most of a client’s potential to reach those goals.

Through our own experience, we know the physical, mental and practical challenges our clients face are inextricably linked.

We know we can support their mental health, and in turn physical rehabilitation, by taking some of the anxiety away.

This might be something as simple as organising payment of bills or sorting out basic house maintenance, and while these practicalities are peripheral to the main problem, they are often the straw that breaks the camel’s back.

We are here to help and ensure our clients feel cared for physically and mentally, because effective physical rehabilitation isn’t possible without good mental health support.

Theory in action One client had severe PTSD following an accident which profoundly limited her quality of life and ability to do things outside the home. We appointed a psychologist to develop a robust mental health support programme using a range of appropriate interventions to help her find a way forward. Throughout this process, her Breakthrough case manager was always there when she needed someone to talk to and to ask questions if she was feeling uncertain.

As well as appropriate medication to help in the short term, we worked with her on a long-term programme of gradual exposure, re-introducing the things she found challenging at a very slow pace. This involved going into a shop with a support worker, leaving quickly, and then building up the time she spent in store before finally making a purchase. The support worker also travelled on the bus with her for just one stop until she felt more confident taking longer journeys and eventually traveling alone.

Another client developed vehophobia and amaxophobia (fear of travelling by car or driving a car) following a road traffic accident. The trusted relationship with her Breakthrough Case Manager led to us taking the first journeys together. We gradually reintroduced her to other people driving, initially with the case manager accompanying in the car. Eventually our client was able to make shorter and then longer journeys with others and then by herself.

57

NRTIMES

THERAPIES

First of its kind conference looks to a digital future for neuro-rehab Virtual communication has played an inestimable role in the lives of so many of us over the past 20 months.

Enabling therapists and healthcare professionals to continue to support clients despite lockdown, and giving survivors the lifeline of communication with the outside world, telehealth has firmly established a place in society.

And although face-to-face contact is now increasingly returning, there can be little doubt that virtual communication will continue, to some extent at least in the world, and particularly in the world of rehab.

Recognising early into the pandemic the role telehealth could play in neurorehabilitation, Remote Rehab was born to help create a virtual community of professionals around the world, who could share best practice and ideas to help shape the future.

The group has now grown significantly, both in size and profile, and continues to bring people together from across the world of neurorehab.

For those who love telehealth, and those for whom it’s a ‘needs must’, Remote Rehab has become a trusted resource and community of like-minded people, keen to learn how to harness the power of remote communication for the benefit of their patients.

And after almost 20 months of building and educating, the ‘Virtually Successful: Rehab in the New Normal’ conference held in association with NR Times - is set to elevate the work of Remote Rehab further still.

The five day event, from January 22 to 26, will bring together over 50 speakers from around the world, to share their insight into the role telehealth could and should play in our lives - and crucially, those of neurorehab patients.

NRTIMES

While a vast number of delegates at the event - held virtually - are expected to share the commitment of the organisers to virtual rehab, for Leanna Luxton, co-founder of Remote Rehab, she sees it as being even more crucial for those who remain uncertain about telehealth to attend.

“I think we’re now at a time where we could put our heads in the sand and say ‘I’m done with this, I’m not doing it anymore, I’m going back to face to face’. But as therapists, as much as we may want to do that personally, we have to consider the opportunities we may be missing for our clients in doing that,” she says.

“This conference is a call to action for all therapists to be at the forefront of the digital revolution. There are many possibilities in the blended approach to rehabilitation and many opportunities for ourselves, our patients and our services.

“We are all passionate about doing the best for them and through the use of technology - be that assistive technology, robotics, VR, apps - we have to look to the future.

“If you look at a service, you can look at what you can do face to face and what you can do remotely. What problems need a solution? Could an app help a patient self-manage? Is there a virtual way of communication I could use in support of my in-person visits?

“There are so many things you can do with telehealth. It’s not just about video calling, it’s not about choosing one or the other.

You can do with it what you wish.

“I do see this as just the beginning and there is so much potential for how it can help us to help patients going forward.”

While Leanna concedes there is a certain amount of ‘Zoom

58

THERAPIES

fatigue’ in society - matched by the huge excitement at the opportunity to reunite in person with the re-introduction of events - the Virtually Successful conference will unite key names from across the world in a format anyone can access at any time.

New pre-recorded content will be released on each day of the programme, remaining online for at least two months after the event for participants to revisit as they wish. Attendees can also claim almost 60 hours of CPD, and a live panel

I think we’re now at a time where we could put our heads in the sand and say ‘I’m done with this, I’m not doing it anymore, I’m going back to face to face’.

59

discussion will be held at the end of each day.

“As much as we all love to do things in person again, by doing this virtually, we can increase and improve access for so many people,” says Leanna.

“I’m a mum with a full-time job, so attending a five-day conference in-person is a huge commitment, and one probably many people couldn’t commit to. It would also be difficult to get such a wide range of speakers all in one place at one time, so this is a great way of doing it.

“By using virtual, we’re able to pack a lot into the time we have and give as much value for money as we can. We can also connect a lot of people virtually through access to our community and groups, and there is the opportunity to connect with the speakers too through questions and the panel discussion.

“We’re very excited about it and hope anyone working in the world of rehab, whether they are a fan of remote rehab or not, will be willing to come along and learn how we can all do the best we can for our patients.”

NRTIMES

VIRTUALLY SUCCESSFUL AGENDA MORNING SESSION

AFTERNOON SESSION

Agenda day 1 - Is remote rehab worth it?

Agenda day 1 - Is remote rehab worth it?

Ada Tang & Brodie Sakakibara

Introduction to Virtually Successful

RRC Lead

TRAIL Study

The bigger picture for healthcare and the way forward Remote Rehabilitation

Paul Rinne

Co-designing resources for rehabilitation Cathy Said via telehealth for people with moderate to severe stroke

What's the evidence and where are we now? Helen Hawley-Hague Combining diciplines for long term management

Ian Pearce

How to build a therapeutic relationship remotely

RRC Lead

UKABIF - Time for change

Paul Brown

How to assess the suitability for remote rehab and the use of DMT's

RRC Lead

How to lead a team remotely

RRC Lead

How to set up a remote service

RRC Lead

Is remote rehab worth the effort?

The Big Discussion

Agenda day 2 - Can apps and tech enhance therapy?

Agenda day 2 - Can apps and tech enhance therapy?

The Tech Landscape

Andrew Bateman

Cognitive apps

Ellis Parry & Luke Parry

The Future - VR Rehab

David Fried

Physical apps

Tom Gray

VR Rehab

VR Therapies

Communicayion apps

Richard Cave

Virtual Physiotherapy Project

Dorothy Monekosso

Goal apps

Penny Trayner

Pioneering the future of neuro telerehab

Marisa Mckenzie

Embedding virtual into practice

RRC Lead

Remote falls therapy

Natalie Stewart

Tele CIMT

Jesamy Boydell

Can apps and tech enhance therapy?

The Big Discussion

Apps in rehab and how they are developed

Andy Callow

Agenda day 3 - Is remote rehab possible for an MDT to deliver?

Agenda day 3 - Is remote rehab possible for an MDT to deliver?

COVID and the impact on rehab teams

Colette Owen

Remote groups - Physical support

Ben Beare & Cath Doogan

Vertigenius

Dara Meldrum

Remote groups - Cognitive support

Lynette Ray

Virtual occupational therapy

Pjilippa Young

Remote groups - Fatigue

Kate Roach

Virtural speech therapy

Gemma Hayden

Remote groups - Peer support

Laura Martin

Virtual physiotherapy

Nikki Penny

Remote peer support

Austin Willett

Virtual voice therapy

Rachel Radford

Virtual speech therapy

Niki Jones

The Big Discussion

Virtual physiotherapy

Sarah Sparkes

Is remote rehab possible for an MDT to deliver?

Remote Groups - what do we know?

RRC Lead

NRTIMES

60

VIRTUALLY SUCCESSFUL AGENDA MORNING SESSION

AFTERNOON SESSION

Agenda day 4 - How do we measure the success of remote rehab?

Agenda day 4 - How do we measure the success of remote rehab?

How to build tech

Thomas Coleman

EnableCare

Lucilla Carlacci

NROL research study

Ben Beare & Cath Doogan

Assistive tech in the NHS

Pedro Santos

Service Journey - working as an MDT

Kim Page

Service Journey

Caroline Moss

Service Journey - Northampton General Hospital

Alex Trotter

Service Journey - Headway Essex

Stella Kerins

Service Journey - The BIS

Natalie Mackenzie

Service Journey - Saebo

Amy Bean

Service Journey - Cognitive

Service Journey - PEDAL trial

Vito De Feo

Jane Powell & Eve Powell

Service Journey - Telerehab project

Sarah Buckingham & Jenny Freeman

Service Journey - Together smart app Helen Hawley-Hague How do we measure the success of remote rehab?

Agenda day 5 - How do we measure the patient experience?

The Big Discussion

Agenda day 5 - How do we measure the patient experience?

Virtual patient experience

RRC Lead

Patient story

Through my eyes and in my shoes - Forum

Helen Hawley-Hague

Patient story

Virtual patient experience

Patient story

Patient story

Patient story

Patient story

Service co-development

Patient story

Living heart community

Can apps and tech enhance therapy? The Big Discussion

Patient story

SAVE £10 ON THE PRICE OF ATTENDING £39.99 for five days by visiting nrtimes.co.uk

61

NRTIMES

INPATIENT

Sponsored feature

Avoiding the trauma of a failed placement For people living with complex care needs, the impact of having one or more failed care home placements can be highly detrimental. Not just to the individual and their family at the time, when they have to face the upheaval and trauma of finding another place to call home, but it can also affect the rehabilitation of the person in the longer-term.

Unfortunately, this is a situation faced all too often, where a person with complex needs is placed in an environment that doesn’t meet their needs - and the impact can be deep and long-lasting.

“It’s very sad, heartbreaking in some cases, when a placement fails,” says Rachel Calladine, business development director at Exemplar Health Care.

“One of the main reasons can be due to a poor assessment,

NRTIMES

where a holistic assessment of an individual’s needs is not done and the complexity of their needs is not wholly appreciated.

“In every situation, a thorough assessment of individual needs and risks is key, carried out by a trained professional who has the skills and expertise to understand how best people’s needs can be supported to achieve the best possible outcomes for them.

“Part of this approach is working together to identify what type of placement is the right one for each individual - but that does not always happen, as we see all too often.”

Around 60 per cent of current service users at Exemplar Health Care have moved into one of its 35 homes following a failed placement - and its pipeline of potential residents comprises a similar level of failed placements.

And the impact of the pandemic has likely exacerbated this problem further, says Rachel, with the unprecedented demand for specialist care beds being compounded by the fact many people have remained in an unsuitable home for the past 18 months and may have significantly regressed.

“When a placement fails, it’s a very distressing time for everyone concerned,” says Rachel.

“During the pandemic, we have been told that some lower acuity providers attempted to look after people whose needs were far more complex than they would usually have supported, which may be why we are seeing a significant number of people with recent failed placements being referred to Exemplar Health Care.

62

INPATIENT

“A commissioner once said to me that a failed placement will follow a service user throughout their care journey – often for service users with behaviours that challenge, they can end up with many readmissions to secure hospitals at a huge cost to the NHS funder and moreover, a significant impact on their recovery journey.

“At Exemplar Health Care, we believe that everyone deserves the right placement, the first time.”

And therein lies the crux of the matter - getting to the true heart of a person’s individual complex care needs and having the specialist resource to assess and meet all elements of every person’s needs.

“It’s vital to do a thorough assessment. We meet with the person and ensure we involve other professionals and family members, as much as is possible, in the process,” says Rachel.

“We need to build a full picture about every person and think carefully about how we would support them in all areas of their life, and whether we have the right place at the right time, for that individual.

“Do we have the right expertise? Would that person fit into our community? This is probably even more important if someone has had a number of failed placements, it needs to be very clearly established how their needs can be met moving forward.

“We will never recommend a placement to someone who we don’t think will benefit from being with us, or may not gel well with the people already in the service.”

Cost is, of course and quite rightly, an issue for commissioners - but a lower cost placement will likely be accompanied by a lower staffing level and a far less specialist provision that is not equipped to manage the holistic and complex needs of the people that Exemplar Health Care supports.

“We have regularly assessed individuals who have initially been placed elsewhere due to cost,” says Rachel.

“Down the line, these people are re-referred to us following a placement breakdown. We often find that their needs have

We need to build a full picture about every person and think carefully about how we would support them in all areas of their life, and whether we have the right place at the right time, for that individual.

63

deteriorated and they require a far enhanced level of support than was seen at the first assessment, as a result of having been in a placement that was just not right for them.

“Without the right level of support, staffing and specialist resource, things can spiral very quickly.

“This can create the ‘revolving door’ where people are readmitted into a secure unit because their placement isn’t right for them. But for commissioners, the cost of this is very high, far outweighing the costs of Exemplar Health Care or a similar high acuity care provider. It can be a real false economy.”

But while many service users at Exemplar Health Care have experienced failed placements previously, their experience in their new home is much more positive. Where does Rachel believe Exemplar Health Care succeed where others fail?

“We’re a very well embedded provider with over 20 years’ experience, we’ve grown organically and have learned lessons along the way and will continue to do this as we develop new services,” says Rachel.

“Our homes are nurse-led with teams of highly trained healthcare assistants and a range of clinical specialists including our behavioural support team, mental health specialists, clinical nurse specialists, physiotherapists and occupational therapists. We are very fortunate to have such expertise at hand which can support the development of a care plan which can support the best outcomes for that person.

“We have also developed our own Exemplar Positive Behaviour Support (EBPS) model and training, accredited by the British Institute of Learning Disability. This enables us to deliver bespoke and really personalised care to our people."

And Exemplar Health Care, soon to open its 36th home with more planned as it continues to expand to meet demand, is ensuring its commitment to ensuring the right placement at the right time continues.

“The demand for services like ours is increasing every day, and that ranges from people with, for example, very complex dementia, complex mental health needs and neurological conditions,” says Rachel.

“We are seeing a significant increase in demand for services for people with complex behaviours that challenge - unless providers have the specialist resource and training to manage this type of need, we will continue to see failed placements again and again,” says Rachel.

“We are expanding and will be able to help more people, hopefully going some way to end the cycle of failed placements and the ‘revolving door’ back into acute hospital settings.

“Our mission to make every day better for all of our service users and staff will continue. We’re constantly striving to deliver the best service we can for our people, we are so fortunate to have such a highly skilled team in place to help achieve that.”

NRTIMES

CHARITY

‘Changing the future for others in memory of our beloved Natalie’

Through the charity set up in memory of Natalie Kate Moss, the pioneering research it funds is helping to change the future of those affected by brain haemorrhage. Here, Natalie’s sister, Fiona, tells NR Times how the family’s heartbreak is now helping to give hope to others My big sister Natalie was beautiful, inside and out. She was kind, generous and a friend to everyone. But when she was just 26, she suddenly and unexpectedly died from a brain haemorrhage.

I’ll never forget the call that changed my life forever. I was in my second year of university, getting ready to celebrate a friend’s birthday. Then the phone rang. Natalie had been rushed to hospital. I can’t describe the shock I felt.

Natalie’s brain haemorrhage struck out of nowhere. She was at an event in London when she developed a severe headache and began vomiting. She was rushed to hospital for treatment, but

NRTIMES

ended up in a coma. We played a painful waiting game.

But after a long five days in intensive care, she passed away.

Natalie was full of fun and laughter; sociable, funny and incredibly stylish. She lived a ‘normal’ life. But her story shows that a stroke can happen to anyone. She was only 26 years old, full of plans and dreams for the future. Losing her was devastating.

But, as a family, we decided that this can’t be for nothing.

We heard about the incredible stroke research taking place at The University of Manchester and we wanted to support it and consequently, we set up The Natalie Kate Moss Trust, to help fund research that could stop other families from enduring the heartache we felt.

In the ten years since Natalie died, we’ve already seen incredibly encouraging progress in the research at Manchester University. And we are so proud to have contributed to this growth and to have further supported Manchester University in setting up the Geoffrey Jefferson Brain Research Centre - a partnership between the Manchester Centre for Clinical Neurosciences (part of the Northern Care Alliance NHS Foundation Trust), the University of Manchester and the Manchester Academic Health Science Centre. We hope that through this continued progress at Manchester we will help more people survive brain haemorrhages, or, better still, prevent them from happening altogether.

As such moving forward, as a charity we have committed to raising £300k over the next three years, to support Manchester University and their research, to help push this progress further even more.

Nothing will bring Natalie back to us. But I hope her story will inspire you to support the amazing research going on at the University of Manchester so that the many more people who will suffer a brain haemorrhage in the years to come will be able to recover from them, so that they can spend more time with their loved ones.

To support the trust and the ongoing research at Manchester University, or learn more about the trust’s work, visit www.nataliekatemoss.co.uk

64

We’re here to help families living with dementia

Support at your fingertips

Visit our Virtual Carers Centre for a wide range of support and information.

dementiacarers.org.uk/vcc

020 3096 7895

TECHNOLOGY

Making the invisible visible Coming from a family of elite sportspeople, Dr Ashleigh Kennedy is all too well aware of the impact of concussion.

As a professional American football player, her father sustained a number of head injuries, and her sister - the Canadian team captain at the Athens 2004 Olympics - competed on the biggest stage of her life still struggling with the effects of a recent concussion.

“She suffered a concussion two days before the Olympics, she missed a tumbling pass and landed on her head, so she was competing with a massive concussion,” Dr Kennedy, herself a sprinter for Stanford, recalls.

“Concussion wasn’t as big a topic back then. So her coaches just told her to get up and get on, but she didn’t, she couldn't.

“She told me that when she competed in the Olympics, she couldn't even tell which corner of the floor she was supposed to start her routine in, because she was so concussed. Her orientation was gone.”

With her own personal experience - coupled with insight gained through studying human biology and exercise physiology at Stanford and a postdoctoral fellowship at the Toronto Rehabilitation Institute - and the growing awareness of concussion on an international stage, Dr Kennedy realised there must be a solution to empower and safeguard the 69million people globally who sustain a head injury each year.

Working alongside her husband, Dr Matthew Kennedy - a family physician who longed to find the data to better support his patients who came to him with head injuries - Neurovine was born in 2019, and now aims to revolutionise concussion care on a global scale.

Bringing together extensive research and groundbreaking technology, Neurovine has created a headband alongside a smartphone app, using AI to monitor a patient in real time with the results available on screen.

For the first time, the ‘invisible’ impact of head injury is being made visible, with patients now having the information that could protect their brain health and future wellbeing at their fingertips.

NRTIMES

Currently in trial in 26 clinics in its native Canada, Neurovine is set to launch across Canada and the US in September 2022, with UK expansion planned for 2023.

“I think this will be transformational for brain health in general,” says Dr Kennedy.

“Regardless of what the injury mechanism was, whether it was stroke, concussion, we feel this solution will be really, really important to engage patients in the recovery process, because right now, they're bystanders.

“This is a patient centric recovery tool which, once you've been diagnosed with concussion, supports you through all of your rehab until you're back to work or school.

“It's really a big focus for us is to empower the patient, so they can go back to their doctor or their clinician if they're not well, but also so they can advocate for themselves while they're going back to work or back to school. How do we support them in cognitive pacing, so they can get back to the workplace or school and not overexert?

“I do think this will transform the role the patient plays in their brain health.”

The high-tech device - which will be a class 2 medical device in Canada and the US - can be used by people of any gender and age, but is set to play a key role in supporting young people to manage concussion, a demographic identified as being particularly at risk of sustaining invisible damage which can increase over time.

Statistics estimate that around 5.3million people in the US alone live with a lifelong disability as the result of concussion.

“Brain health in youth is really important. Their brains are so dynamic, they're changing so fast, that we really want to make sure they're healed, so that we don't have this accumulation over time,” says Dr Kennedy.

“And that's the tricky piece, with football often the concussions are small, we call them sub-concussive loads, and the patient or athlete may not feel incredibly concussed, but those subconcussive loads build up over time.

“We want to make the technology as accessible as possible to young players so they can deal with those small injuries well, and that they don't end up at the end of their careers with significant injury.”

And that cumulative effect is something that Dr Kennedy saw very clearly during her research while developing Neurovine.

66

TECHNOLOGY

“I met with the Canadian Football League Players’ Association, with all these retired football players who said they were taught to get back on the field as soon as they could, that taking a knee was weak,” she says.

“But you could tell a lot of them had cognitive decline.

They said it themselves, that they could see the impact now they’re ageing.

“But what was really interesting was when I asked if they allowed their kids and grandkids to play football, given their experience, and the resounding answer was yes, because the sport gave them so much. So much discipline, so much purpose.

“So if these kids are still going to play, we need to get them back to the field safely, with as much prevention as possible so if they do get injured, having the tools in place to help them recover fully before they're sent back on the field.

“Concussion is a really hot topic for us because of the NFL, and with UFC too. There are all of lawsuits right now from retired athletes, suing the institution because they’re saying ‘you didn't let me heal. You didn't take good care of my brain’.

“Another factor is that we have awesome innovation in our hospitals, but then patients are sent home to relatively little support. We wanted to fill that gap.”

Based on the concept of an EEG headband Dr Kennedy had built while in her first year at university, the ambition was to create a means of relaying what was happening in someone’s head onto the screen of a smart device, to enable them to take control of their recovery.

Absolutely believing in its potential, although initially not having the full suite of technological capability to create it, the couple dedicated themselves to making Neurovine a reality.

“I worked as a consultant, working with wearable technology companies to validate their technology. I took contracts with hospital institutions, and all of the money from those contracts went to pay our first engineer,” says Dr Kennedy.

“So we bootstrapped, we got a couple of young young engineers, and they built a really simple proof of concept. And then we raised the money to build everything from scratch.

“We really did not want to get into manufacturing; however, it soon became clear we needed to own the hardware for our system to be highly accurate and comfortable.”

“It’s fair to say it has been a slog.”

But having formally launched the company in 2019, its progress has been rapid and significant.

67

While the COVID-19 pandemic did delay its investment and roll-out plans somewhat, in other ways, it helped to prove how effective the concept of Neurovine could be.

“It’s been a blessing and a curse,” says Dr Kennedy.

“While it has held us back in some ways, it has also partly demonstrated the need for digital health. This was always a digital health tool that was intended to be sent home with patients to allow remote monitoring so that physicians could get an idea of how the patient was progressing at home.

“COVID really just increased the need for remote technologies like this.”

Future plans for Neurovine include the development of a clinician portal, which is currently being created by the fast-growing in-house team, but at its launch will be a patient platform, with work underway to create partnerships around the world.

“We’re always looking for partnerships, particularly with sports teams who we can send the technology to and support them,” says Dr Kennedy.

“Especially with soccer being such an underserved area when it comes to concussion, it really needs to be taken more seriously, so that could be an area where we could give support.

“We’re also looking at boxing. Conversations are ongoing and are building up ahead of our launch next September, but we do have a number of interested parties. The groundwork is being laid, it’s a very exciting time.”

NRTIMES

INSIGHT

The way concussion is viewed and treated must be tackled in society if change is to be effected in delivering protection from brain injury, it has been claimed.

Change the way society views concussion Since the launch of the UK chapter of the Concussion Legacy Foundation (CLF) last month, its accompanying helpline has seen huge demand for support from veterans and amateur athletes concerned at the impact of their head injuries and the implications of sustaining them.

The CLF has set ambitious targets to prevent new cases of Chronic Traumatic Encephalopathy (CTE) within five years and of finding a cure by 2040.

And in being able to achieve that, Dr Adam J White, executive director of CLF UK, says as well as making the necessary

NRTIMES

changes within sport to protect players, concussion must also be recognised for its seriousness in wider society.

“Concussion is an issue in sport, it’s an issue in the military, but it’s an issue in everyday life. And it's an area where we're just getting it wrong in terms of society and healthcare,” Dr White tells NR Times.

‘We're not doing enough to support people with mild traumatic brain injuries, they're falling between the gaps. They've got some real complex needs that aren't being catered for by the NHS in the UK at the moment, and that’s a real worry.

68

INSIGHT

“Through the helpline, we’ve had a huge number of people seeking help with their concussions and I think more and more people will be presenting to us. And I hope more and more people do, because it's not trivial, it is important.

“These are serious injuries, each and every one of them, so they do need to be given support for that condition.

“At the moment, the kinds of guidance they're getting is inadequate, they're often being told to go home and rest and are often given very little other information. Depending on which hospital you attend depends on what kind of information you're going to get.

“Often, there'll be no further referral or no follow-up, typically you’re told if anything deteriorates come back, but people are often not given any treatment plans or support with a huge raft of needs from motor needs, coordination, headaches, sleep disorders. People are then left to fend for themselves, which can impact significantly on their lives.”

Through the work of CLF in its native US and its role in establishing the world-leading VA-BU-CLF Brain Bank in Boston - which it is now building further around the world, including in the UK with the creation of the CLF Project - huge advances have been made in understanding the causes of CTE, with links now proven with repeated head impacts over a period of time.

As a result, CLF’s founder Dr Chris Nowinski - whose exposé of NFL safety protocols in 2006 is credited as revolutionising the sport - has become a leading advocate of the need to protect children from the impact of heading.

“Delaying heading as much as we can to restart it much later is a really great first step,” says Dr White.

“By saying there will be no heading until 14 or 16 or 18, we're reducing our exposure, which would be fantastic. It's not a core component of the game. It could be removed and most of the game would maintain its beauty, its fun, its enjoyment. So that could be a great first step.

“Sport is a difficult nut to crack but we can affect changes.

Concussion is an issue in sport, it’s an issue in the military, but it’s an issue in everyday life. And it's an area where we're just getting it wrong in terms of society and healthcare.

69

Sport is a difficult nut to crack but we can affect changes. We've given sport five years to stop all new cases of CTE, but we could do it tomorrow.

We've given sport five years to stop all new cases of CTE, but we could do it tomorrow. The reality is, is we know how to make this condition stop, but we need to be bold enough and brave enough to make the change.

“What we need to do is reduce the exposure, and then making sure that in tandem with that, we are making sure when players do get concussed, that we deal with it properly, so we're not returning players the same week, we're making sure they have plenty of time to rest and recover. We're making sure that they're not putting their brains through lots of extra stress and they're not coming back to full contract sessions.

We need to see all of those those policies and protocols put in place.”

While change is indeed starting to happen, with measures being taken including restrictions on full-contact training in rugby and high-force heading in football training, Dr White says that advocacy has a huge role to play in driving this forward further still.

“I think in terms of preventing this issue in the future, it's about the players, it's about the parents and the grassroots game,” he says.

“Athletes often forget the power they have. If they decide to vote with their feet, if parents decide that they're not going to let their kids do this anymore, it'll change. But we've seen there has been plenty of opportunity for sport to make the change themselves and they've never been brave enough to do it.

“Now, we're seeing more and more people saying, no, we're not going to allow this. People are asking do I want my daughter to be heading the ball, do I want this for my child, and we really need them to continue to do that. Children can do so many other kinds of physical activity and exercise but without the risks.”

NRTIMES

INSIGHT

Sponsored feature

The role of spirituality in neurorehabilitation

By Dr Anita Rose, consultant clinical neuropsychologist, The Renovo Care Group Spirituality is “the aspect of humanity that refers to the way individuals seek and express their connectedness to the moment, to self, to others, to nature, and to the significant or sacred” (Puchalski et al., 2009, p.887).

As I am writing this article it is coming up to the start of the Christmas period and I am currently trying to arrange carol services, and times for celebration within our neurorehabilitation services. Parallel to this I am in conversations with faith leaders to set up a chaplaincy service for our newly opened hospital having had a successful service in our other hospital for a few years. All this activity has reminded me of the importance of providing spiritual care for our patients

NRTIMES

and service users and led me to reflect on the role of spirituality in neurorehabilitation.

The recent pandemic has increased the awareness of the important role spirituality may play for individuals confronted by health crises and how as healthcare providers we can provide care and support around spirituality. However, I wonder whether when we consider the term spirituality it naturally turns us to thinking we are talking about religion. Such thinking may in turn lead us to believe to talk about spirituality would alienate our colleagues and patients/service users. As a result, it might prevent services from providing spiritual care due to lack of understanding and for fear of offending.

The NHS Education for Scotland defined spiritual care as, “that care which recognises and responds to the needs of the human spirit when faced with trauma, ill-health or sadness and can include the need for meaning, for self-worth, to express oneself, for faith support, perhaps for rites or prayer or sacrament, or simply for a sensitive listener” (2006, p.6). This describes

70

INSIGHT

As a person of faith, I am fully aware of the benefits of spirituality in my own life and the support it has, and does give me, in times of health crises, significant illness and daily living. And, as a healthcare professional working neurorehabilitation, which is a person centred and holistic driven process, I recognise that spiritual care can often be overlooked. spiritual care as a core aspect of holistic, person-centred care.

As a person of faith, I am fully aware of the benefits of spirituality in my own life and the support it has, and does give me, in times of health crises, significant illness and daily living. And, as a healthcare professional working in neurorehabilitation, which is a person centred and holistic driven process, I recognise that spiritual care can often be overlooked. This is also the case in the research literature in the field of neurorehabilitation where there is a paucity of research on the role spirituality can play.

I reviewed the literature that is available and noted it highlighted spiritual wellbeing was closely associated with better adjustment and coping in people who had sustained a neurological injury. The studies have documented clear associations between spiritual wellbeing, higher quality of life, life satisfaction and resilience, lower levels of depression and anxiety. This correlates with research on the relationship between spirituality and health in the broad field of healthcare.

This review led me then to think about how, in neurorehabilitation, we already provide care which is akin to this description of spiritual care, “person-centred care which helps to seek people (re)discover hope, resilience and inner strength in times of illness, injury, transition and loss” (NHS Education for Scotland, 2013).

So if we acknowledge we are providing care in line with the description in the previous paragraph how can we take the step to spirituality? Do we understand spirituality, what are our personal perceptions as healthcare professionals, do we need spiritual care training in our services as in palliative care, and do we need external spiritual support as standard?

As a clinical neuropsychologist I am comfortable in working with my patients and families to ask about their faith and spiritual thoughts as part of my initial holistic assessment period. I will use the demographic template around religion (as this has to be completed) however will broaden this to spirituality more generally using the definition I mentioned at the beginning of this article. This enables me to look at spiritual care needs and support.

71

However, I am aware that such conversations may be difficult for others. Maybe this is because spirituality is confused with religion, staff maybe be uncomfortable in raising this topic with patients, the perception it is a private matter and therefore should not be discussed, and maybe the lack of knowledge or skills in talking about spirituality. Therefore, understanding staff perceptions and providing spiritual care training may support and increase knowledge regarding spirituality and spiritual care, and increase their confidence and comfort in assessing spiritual care needs and providing spiritual care. This would ensure our neurorehabilitation would be truly person-centred holistic care.

So, what about external spiritual services? A few years ago, I introduced a chaplaincy service in one of our hospitals. This came about due to a number of our staff and residential service users regularly attending a local church and the church approached the senior team offering support to the in-patient service. In recognising the importance of providing spiritual support to our patients we developed a chaplaincy team made up of different ministers of faiths and they would visit the site to meet with staff and patients and their families providing the fullness of spiritual care including person-centred support helping our patients rediscover hope and inner strength both through faith support and sensitive listening. Having the external faith community involved was a very positive addition to both the neurorehabilitation process for the patient and staff care. They became part of the team. Having learnt from that experience we are looking to replicate it in our newly opened neurorehabilitation hospital.

To end this reflection, I would agree with the title of one of the research articles I read – “Spirituality is Everybody’s Business” and as such I do believe there is a role for developing a clear role for spirituality in neurorehabilitation from training to implementation. After all, neurorehabilitation is a holistic process developed around the physical, cognitive, psychological, social and cultural dimensions and lifestyle of both the patient and their family and this cannot be truly holistic if we do not consider spirituality in all its rich diversity.

NRTIMES

COMMUNITY

How the power of football is increasing brain injury support A new partnership is harnessing the power of football to help increase support for people living with brain injuries and other neurological conditions.

Liverpool County FA is working alongside The Brain Charity to raise both funds and awareness around the impact brain illness or injury can have on individuals and families. It is also supporting the frontline work of the charity in delivering support across Merseyside and, increasingly, the wider UK. The two-year partnership is building on a common love of football to help engage people, and hopes it can particularly target men, who can be a hard to reach group that is reluctant to seek support.

In another strand of the initiative, Liverpool County FA will work alongside its new charity partner to help football clubs and leagues to be more dementia-friendly, and learn how to recognise early warning signs and offer support.

It will also help to raise awareness of the growing links between football and neurodegenerative illness - building further on the work of the FA nationally with its guidance around high-force heading in training to help grassroots players understand the risks.

NRTIMES

Daniel Green, CEO of Liverpool County FA, says the partnership will offer support to brain injury survivors in a host of ways.

“We hope it will be quite diverse. As well as the financial support we can hopefully give to The Brain Charity, we are looking at areas which could potentially include employment and volunteering and how we can work together, be it through sport around education, coaching and CPD qualifications, for some of the their clients,” he says.

“If we can use football to tackle some of the social isolation they may have been experiencing and rebuild their confidence, then then we believe we've got a real role to play locally.

“Football can cater for all demographics, male and female, young and old, but we know the male population can be particularly hard to reach. Football is still quite a male dominated game, and while this goes more broadly than just neurological issues, men don't tend to talk very openly, or will maybe be more flippant, in talking about what troubles them.

72

COMMUNITY

Football can cater for all demographics, male and female, young and old, but we know the male population can be particularly hard to reach.

“The Brain Charity has identified a real target audience that it wants to work with, and to potentially use the power of football to get to those individuals to feel more comfortable talking about and identifying what those issues may be.”

Another key aspect of the partnership focuses on the highprofile issue of dementia in football, with Liverpool County FA working with The Brain Charity to raise awareness of the signs and impact of the illness.

“There is the wider issue and ongoing work around dementia linked to football, and back in July the FA issued its updated guidance for amateur and youth football, both male and female. So this is something we are raising awareness of, and how to spot those early signs of dementia too,” says Daniel.

“This could be among people who have had a career in football, or they may not have done, but it’s about how we can all work together to spot those symptoms, and identify the actions that friends, family and people’s wider networks can take to support people from recognising the signs through to managing the symptoms.

“And also, one of the big challenges The Brain Charity has identified is, it's one thing that clients receive the medical support and advice that they need, but it's another thing to look at their own physical wellbeing alongside that.

“We’re keen to use the facilities at our disposal to link the two elements. So an individual may receive some counselling through The Brain Charity, and we'll then help to facilitate a walking football session, or something of that nature, so that

73

they're getting not only the medical advice that they need, but also that physical wellbeing piece for them.

“We can provide that safe environment whereby they can talk openly, to try and find that normality again for them and rebuild that confidence. We’re also keen to work with our local clubs to see how we can work together to reintegrate people back into a football environment, but in a manner that is sensitive to some of the challenges they may face - but that’s in its early stages.”

Nanette Mellor, CEO of The Brain Charity, says: “We can’t wait to get to work delivering a programme of physical activities, awareness campaigns, fundraising appeals and volunteering opportunities in partnership with their staff and wider grassroots network.

“Liverpool County FA’s key value of ‘Football for All’ matches our own wholehearted commitment to fighting for an inclusive society.

“We are excited to improve the health and wellbeing of people with neurological conditions across Merseyside, with their support.”

Daniel adds: “Through discussions very early on with The Brain Charity there's a lot that we need to try and get to grips with, but there's also a lot of opportunities.

“We hope that through the two-year partnership we will be able to put in place the service provision and structures so that when the two years come to an end, the work will be able to continue, so we can continue to support people with neurological conditions for the long term.”

NRTIMES

INTERVIEW

‘You can’t just make it smaller and paint it pink’ With a huge disparity between levels of research between males and females, yet the findings of concussion studies being applied to both, NR Times speaks to Dr Elisabeth Williams about the importance of levelling that balance Following months of harrowing stories from former sports professionals living with the long-term consequences of head injuries sustained during their careers, at last, concussion is under the spotlight like never before.

But while we talk about concussion and its impacts more frequently and knowledgeably than before, still little to no distinction is made between its effect on males and females.

Although much research has been done, and continues to be produced, which focuses on male participation, its female equivalent is pitifully low - yet its conclusions are equally applied to both sexes.

That fact is not lost on Dr Elisabeth Williams. Through her recent research into the impact of head injury among women playing rugby, the astonishing disparity has been laid bare.

NRTIMES

The Swansea University study, led by Dr Williams, revealed that direct head-to-ground hits were taken by 26.1 per cent of females, but only 9.7 per cent of males.

Whiplash was sustained by a huge 78 per cent of females more than three quarters of participants - but just 0.5 per cent of males.

Furthermore, in a survey of 1,900 women rugby players from 62 countries around the world, around 50 per cent of those said they would not recognise symptoms of concussion. One in five had no concussion education at all.

While Dr Williams confesses to being surprised by the scale of the findings, the lack of distinction between male and female when it comes to research - and the generalisation that is routinely made - is nothing new.

74

INTERVIEW

We call it the ‘Dirty C word’ - people don’t want to use it. I think it’s a lot like COVID or climate change, some people understand and believe in the science and others choose not to believe in it.

“Females are very different to males in many ways. The female cervical spine geometry can’t be scaled from that of a male. But with the research, it’s all focused on men,” says Dr Williams, a senior lecturer in biomechanics at the University's Faculty of Science and Engineering.

“This isn’t something you can make smaller and paint it pink to make it ‘suitable’ for women, we need female-specific data so we can develop evidence-based policy.

“I was studying rugby and wanted to study women, but there wasn’t any funding. So we did it anyway. The people who fund research want it to have impact, and there’s the perception that women’s sport, and rugby in particular, doesn’t have the popular appeal. Yet millions of women in the world play rugby.

“But this is nothing new. If you Google ‘human evolution’ it takes until page three until you find a picture of a female. Females are much more likely to die in a car crash, yet there are only two female crash test dummies. This happens all the time, and particularly in research.”

The huge disparity between the impact taken during a rugby match means action must be taken, says Dr Williams, including focus on the fact that girls are only enabled to take part in the sport at a much later stage than boys.

“The men’s sport was professionalised in 1995, for women it’s happening now. This could be a good time for us to intervene and make change,” she says.

“But also, we need to look at whether this is a sex difference or a gender difference too. Is it corresponded by the fact we don’t have rugby at school for girls, they don’t get the coaching so aren’t taught how to fall.

“You can’t do proper comparisons between women and men, as they haven’t been playing for the same length of time. They haven’t had the same access to really good coaching from an early age, it just doesn’t happen for girls.”

But while the need to address the gender differences in engagement and research must be addressed, the way in which concussion continues to be viewed in many circles transcends

75

the gender boundary, says Dr Williams.

“We call it the ‘Dirty C word’ - people don’t want to use it,” she says.

“I think it’s a lot like COVID or climate change, some people understand and believe in the science and others choose not to believe in it.

“There is the access to information and scientific evidence, but people choose not to see it. There are so many conspiracy theories out there about things we know aren’t true.

“Historically, there has been so much resistance, like in NFL, but thankfully I do think this is getting less and less as more high profile players speak out. We all now have to take this seriously, but we need more education. It takes a while, but we are recognising the need to change.”

Given that the Swansea team’s research has confronted two thorny issues - gender equality and concussion - the fact that some adverse reaction has been received comes as little surprise.

“Generally, there has been a real mix of feedback. Lots of people said they’d never thought about it like that and it had really made them think, but then others think we as women should get back in the kitchen,” says Dr Williams.

“We initially had some trouble getting buy-in from players. In previous years, we have had players saying they’ll take part and not turn up. We’ve wasted countless hours, but I think if they truly understood the significance, they would turn up and do what they can to help.

“I do think things are getting better, and our team [at Swansea] are having some really positive conversations around the subject.”

Dr Williams also presented at the recent UKABIF Time for Change Summit, during which a light was shone on the topic of women in sport.

“The conference was the most positive, mind-blowing feedback I have ever had. There are a lot of people taking it really seriously, and that was so great to see,” she adds.

NRTIMES

TECHNOLOGY

How game-based technology is advancing brain repair For several years, the profile and capability of MindMaze in digital therapeutics has been building, with its impact and adoption around the world ever-increasing.

Its MindMotion GO and PRO devices are in use by thousands of patients around the world, both in clinical and at-home settings, and helped to redefine the neurorehabilitation market.

But now, MindMaze - recently backed by a US$125million raise - has upped the ante on neuro-rehab even further with tits first UK strategic partnerships for MindPod, its leading neurorestorative solution.

Hailed as having the potential to revolutionise brain repair, the MindPod is the world's first immersive neuro-animation experience – a unique form of location-based digital therapeutic that focuses on brain repair through high intensity and high dose complex exploratory movements.

MindPod is built on the SMARTS II trial for sub-acute post stroke upper limb training, which showed that a high-dose, high-intensity approach which leverages the cognitive, motor and cardiovascular systems doubles the efficacy of conventional rehab.

NRTIMES

MindPod involves a room-based immersive experience that enables prescribable digital therapeutic games for neurological conditions.

The games use neuroanimation, devised by MindMaze’s specialist in-house team, to motivate patients into performing movements that leverage the cardiovascular, motor and cognitive systems that promote brain repair.

“This is a breakthrough technology because actually most solutions out there for people with neurological diseases like stroke, for example, are about rehab and teaching people how to live with impairment versus helping them to repair their brain and regain their core capacities,” says Dr Salim Ghoussayni, senior UK market development director at MindMaze.

“About 80 per cent of patients with stroke have upper limb impairment and roughly 10 percent of patients who have suffered a stroke fully recover from the disease - this leaves a lot of human potential on the table.

“The latest neuroscience - that which has guided the development of MindPod - proves that high-dose, highintensity therapies in immersive environments that leverage the cognitive, motor and cardiovascular system makes full recovery more available.”

Based on technology developed in the Johns Hopkins University School of Medicine, department of neurology, MindPod is now expanding via partnerships with select centres around the world.

It is in use in two UK launch in partnership with locations so far - the Royal Buckinghamshire Hospital and STEPS Rehabilitation, both long longstanding partners of MindMaze, who have integrated the prescribable technology into their workflows for stroke patients.

76

TECHNOLOGY

These partnerships represent the first time that the technology is going from the research context into a realworld clinical setting.

“We are working with both organisations as they are innovators, with a progressive approach to treatment and incorporating new technologies and learnings into the system,” says Dr Ghoussayni.

“They are long-standing partners of MindMaze and early adopters of our technology. Both are like-minded in the recognition that current patient outcomes are not enough - we can do better - and in their desire to revolutionise the status quo.

“We now have a steady stream of patients engaging in the program and are seeing positive early results.”

While currently the MindPod is able to support the progress of people affected by stroke, it is actively looking to expand that into other brain diseases and injuries, supported by its investment.

Its MindMotion suite is used for conditions including including acute stroke, Parkinson’s disease, traumatic brain injury, multiple sclerosis and ageing.

“MindPod has successfully been piloted to enhance cognitive and functional wellness in a community setting for the healthy elderly, and an ongoing clinical trial is examining the improvement of motor and cognitive functions in Parkinson’s disease,” says Dr Ghoussayni.

“Fundamentally we strive to help people recover faster and better from neurological disease and injury, and to prevent the onset of these incidences through healthy brain actions, care and training throughout one’s life.”

To make a referral call on 01942 707000 or email enquiries@trurehab.com

Specialist providers of brain injury rehabilitation in the North West of England.

Residential and community outreach services available.

77

NRTIMES

INSIGHT

Can we slow down the progression of Alzheimer’s disease?

Professor Naji Tabet, Director of the Centre for Dementia Studies at Brighton & Sussex Medical School, discusses the issue for NR Times Earlier research had implicated the neurotransmitter acetylcholine in the pathology of Alzheimer’s disease (AD). This led to the introduction of acetylcholinesterase inhibitors as a way of addressing low brain acetylcholine levels. While these drugs provided a welcome new pharmacological approach for the treatment of AD, they did not live up to early expectation.

These drugs do not modify disease progression and at best provide symptomatic relieve to some patients, some of the time and for a limited period. The additional introduction of memantine which blocks excess calcium influx into neurons did not change the overall dynamics of the treatment of AD to any great extent. To maximise benefit, dual treatment with an acetylcholinesterase inhibitor and memantine is becoming more common. However, evidence for enhanced efficacy for this combination therapy is small at best.

NRTIMES

The limitation of currently available treatment is well recognised and efforts to advance research activities into identifying new disease modifying drugs have intensified in the last decade.

Major attention has been directed at clinical trials targeting proteins implicated in the neuropathology of AD, namely amyloid and tau. However, to date almost all the clinical trials has not had a successful outcome. However, a new drug called aducanumab has been licensed by the FDA (USA drug agency) few months ago and is the first drug that works by targeting amyloid aggregations in the brain. Aducanumab has not been approved outside the USA so far and post marketing assessment in way of phase IV clinical trial will be needed to establish the drug’s real-world efficacy. In the UK, no disease modifying medication is licensed at this time although several such drugs continue to be tested in randomised controlled trials. While awaiting the outcome of the much-needed disease modifying drug trials, attention has turned to investigating other pharmacological and non-pharmacological interventions.

The aim is to utilise currently available approaches to optimise management to slow down progression and to enhance patients’ quality of life. This is especially needed in the early stages of the disease before more significant brain dysfunction sets in to make interventions less likely to succeed. AD, like other dementias, is a chronic illness with median life expectancy from diagnosis (not necessarily from symptoms’ onset) of about nine years. Hence, improving the quality of life for patients remain a

78

INSIGHT

The longer a patient remains in the early stages of the illness the more likely they can remain active and maintain a good level of activities of daily living. top priority allowing them to live independently for as long as possible. The longer a patient remains in the early stages of the illness the more likely they can remain active and maintain a good level of activities of daily living.

Over the counter (OTC) medications including agents such as vitamins E, D, B12 and folate, and herbal extracts such as gingko biloba and others have been evaluated for treatment of patients with AD. However, no current evidence obtained from well powered randomised clinical trials exists to support the recommendation of such agents to patients with AD. In contrast, identifying and addressing deficiencies in these vitamins may have a positive impact on patients’ cognitive symptoms.

79

While limited evidence currently exists to permit active recommendation of OTC supplements, maintaining a healthy and well-balanced diet allows the intake of essential natural micronutrients. In fact, there is ongoing interest in dietary interventions to help people stay healthier for longer. Diets rich in omega-3 and a range of free-radicals fighting antioxidants, for example, have been proposed for healthy living and to fight disease. Much have been written about the benefit of the Mediterranean diet in protecting physical and brain health.

While research suggests some protective effect of such diets against early development of dementia, more work is needed to assess their potential benefit in people already diagnosed with AD. Until more evidence is presented, appropriate dietary interventions can be suggested for people diagnosed with mild or moderate AD. In the more severe stages of the illness, attention should also be directed at maintaining weight as malnutrition and weight loss are frequently encountered in AD and these have a negative prognostic impact. Exercise and physical activity have also been identified as protective factors against the development of AD. In contrast, epidemiological studies implicate lack of exercise and inactivity as risk factors for the development of AD later in life. Exercise has been shown in animal and human studies to improve immunity, decrease amyloid build-up, decreases systematic inflammation, help fight free radicals and enhance brain protective substances. Much less research has been carried out to confirm a protective role for exercise in patients already diagnosed with AD. However, there is some evidence that exercise and physical activity are helpful in maintaining some cognitive abilities and should be investigated further. Even a small amount of exercise and activity such as gardening and walking might have a positive effect on patients’ well-being, both physically and mentally.

Depression is another risk factor implicated in AD. Therefore, identifying and treating depression in middle age may have a protective effect against the development of AD years later.

Sustained depression and anxiety are associated with chronic higher levels of blood cortisol which can damage specific brain receptors in critical areas. Many studies had reported that those who have been diagnosed with depression are more likely to develop AD compared to those who did not have depression.

The situation is much more complex in people already diagnosed with AD as up to half of AD patients may develop depressive symptoms. Depression, and other psychiatric conditions such as agitation and psychosis, are poor prognostic factors and are associated with significant morbidity. The challenge, however, is the dearth of licensed medication to treat these conditions. Systematic reviews have not supported the efficacy of antidepressants in AD. In those with agitation, some

NRTIMES

INSIGHT

No cure for AD exists currently or likely to exist soon… every effort should be taken to optimise available options to help patients with AD in the here and now. The optimal use of licensed drugs should be combined with non-pharmacological interventions which have been shown to have some beneficial effect.

antidepressants may do more harm than good. Appropriate psychological therapies may be more useful, and these are also under investigations. The treatment of behavioural and psychological symptoms of depression remains a challenge.

Another risk factor that has been implicated in AD relates to poor sleep. It is suspected that poor quality of sleep may impact on glymphatic channels which allow for clearing of toxic substances from the brain such as damaging amyloid oligomers and fibrils. In patients with AD, poor sleep is associated with confusion and cognitive challenges. While more data is awaited, it is reasonable to educate patients and carers about the positive effects of restful sleep through the introduction of sleep hygiene techniques. The chronic use of sleep medication in older people with dementia carries risks and should be avoided whenever possible.

Research has also identified education, or more accurately lack of it, as a risk factor for AD. The concept of cognitive reserve is accepted as a protective mechanism against AD with high level of education appearing to be protective possibly by enhancing cognitive reserve. An example of enhancing cognitive reserve is through bilingualism which may delay the onset of AD in those who are predestined to develop it. In patients diagnosed with early stages of AD, cognitive stimulation and brain training may provide a reasonable approach to try to maintain function for longer. This should be recommended and encouraged.

Old age is an important risk factor for AD. Many of the patients have multimorbid conditions which impact directly or indirectly on their physical and cognitive health. The bodybrain link very much applies here. Encouraging patients to look after their physical health through routine medical checks including identification and management of cardiovascular/ cerebrovascular risk factors is important. Poor physical health is associated with poor outcome for dementia and

NRTIMES

worsening of cognitive decline.

There is current interest in social networking and social engagement as protective factors for AD, with social isolation and loneliness being identified as risk factors. However, there is also emerging evidence that social isolation and loneliness may worsen cognitive decline and mental health in patients diagnosed with AD. While more research is needed, the indications are that supporting patients to maintain an acceptable level of social activities is both rewarding and beneficial and may help patients to live better with their illness. With COVID-19 there has been significant decline in social activities available for older people who at various times of the pandemic had either self-isolated or shielded. This translated into poor social interaction and loneliness for many older people with dementia and appear to have had a negative impact overall. New approaches to social engagement including wider use of virtual platforms incorporating social clubs and day centres and this may be a way forward in the current climate.

No cure for AD exists currently or is likely to exist soon. Further research and more clinical trials are required and are to be encouraged. However, efforts should be taken to optimise available options to help patients with AD in the here and now. The optimal use of licensed drugs should be combined with non-pharmacological interventions which have been shown to have some beneficial effect. Advice on interventions with some evidence of efficacy can include encouraging physical and social activities, eating well, engaging in cognitive stimulation, treating mental and physical health issues in a timely fashion and promoting sleep hygiene. It is hoped that a multifactorial approach combining pharmacological and nonpharmacological strategies will allow patients to live well with their dementia.

80

TECHNOLOGY

Neuro ProActive roll-out continues Credited with helping to revolutionise neuro-rehab through its innovative and accessible use of technology, Neuro ProActive’s national adoption continues to gather pace.

Having gone live at UCLH Queen Square in April after more than three years in development, its roll out across the NHS continues.

After launching in late September, more than 20 NHS Trusts in the UK are adopting Neuro ProActive. The Major Trauma Network in Wales - which covers six of the seven Welsh health boards - has also awarded a contract for its use. This will also involve the integration with Electronic Patient Records.

Recently, Leeds Children’s Hospital - which, like UCLH, was a key partner in Neuro ProActive’s development - has also begun using the breakthrough platform.

Ambitions of international expansion are now on the horizon within its first year, with discussions underway with the Ministry of Health in Turkey, supported by the UK Department for International Trade, which is championing Neuro ProActive as a key British export.

Additionally, Cedar, an independent research organisation, will conduct a study on the efficacy of the platform, including patient experience and outcomes and health economics. The research study is being funded by the World Economic Forum through Value Based Healthcare Wales.

Neuro ProActive’s appeal lies in its creation of a fully multidisciplinary approach to rehabilitation, revolutionising communication between allied health professionals, involving

81

families in their loved one’s rehab and promoting patient self-management.

The platform, which now also has iOS and Android app versions, enables greater cohesion between therapists through its end-toend message and video calling encryption, as well as delivering the means for a seamless transition between inpatient and community care.

Supporting the full spectrum of neurological conditions - from brain injury to stroke, dementia and Long COVID - medical professionals, therapists and families alike have spoken of the huge positive impact it has on the lives of the patient.

And that is exactly what its founder, Ian Pearce, set out to achieve, based on his own experience.

After seeing the lack of cohesion in provision for his father after his stroke in 2017, and being shocked at the lack of opportunity for family involvement, Ian wanted to make a change - despite having no background in healthcare or tech development.

The first platform he created, Stroke Active – named Innovation of the Year Award at the 2019 European Neuro Convention – proved its efficacy among families impacted by stroke, resulting in Ian widening his vision to include all neurological conditions.

“After three years of consultations with patients, families and AHPs, it was great to see Neuro ProActive deployed at UCLH. Professor Nick Ward and his team were involved in the platform’s development from an early stage, so that was a great place for the journey to start,” says Ian. “The feedback we’re now getting from therapy teams all over the UK is extremely positive. The pandemic has severely curtailed the provision of rehab services and Neuro ProActive helps NHS Trusts adhere to NICE guidelines on patient care, and will continue to do so in a post-COVID world.”

Outlining the key role of Neuro ProActive neuro care, Ian says: “Frequently, there is a gap between inpatient and outpatient – early supported discharge too often is just early discharge.

“You hear stories of people waiting six weeks before their therapy starts, which makes things so much more difficult further down the line.

“But by using the platform, we have enabled patients to connect with their community rehab team. We support six AHP disciplines; physio, speech & language therapy, occupational therapy, dietetics, art therapy and clinical psychology. The whole MDT can contribute to the patient’s dashboard in real time.

“Enabling patients to have the ability to self-manage, while also including family members in the rehabilitation process, is so important. Through using the platform, everyone can be involved in the process. Each patient has their own message board too, so can instantly get in touch with their team.”

NRTIMES

THERAPIES

Sponsored feature

Sue Ryder extends music therapy contract with Chroma Following a successful six-month music therapy pilot project in partnership with Chroma, Sue Ryder has extended the project for a further six months.

Residents at Sue Ryder Neurological Care Centre Lancashire, Preston have been experiencing music therapy alongside other regulated therapies, including occupational therapy, physiotherapy, and speech and language therapy, to help their rehabilitation and engagement.

Chroma will continue to deliver music therapy sessions at Sue Ryder, which primarily provides emotional and psychological support, alongside functional support, to help residents mentally prepare and feel motivated to participate in their rehab.

Daniel Thomas, managing director at Chroma said: “We are really pleased that Sue Ryder has agreed to extend our support to their residents.

“Introducing music therapy into the rehabilitation journey has seen improvements in residents’ communication skills, independence, self-awareness and awareness of others, plus, has supported and improved their concentration and attention skills.

NRTIMES

“Music has proven it is the ideal intervention to help mentally prepare residents to engage in their rehabilitation as it encourages self-belief and confidence in their abilities – psychologically, residents’ have been able to grow within themselves. Progress has been seen in numerous areas such as speech, attention, focus but most of all, psychologically.”

Chris Walbank, centre director at Sue Ryder Neurological Care Centre Lancashire, added: “Chroma’s six-month music therapy project delivered to residents at Sue Ryder has been deemed a resounding success.

“By extending our partnership, we can continue our commitment to providing expert support and allowing us to be at the forefront of modernising neurological care across the county.

“We have seen that using music therapy has helped our residents understand themselves and make positive changes in their lives. A positive mental state is the first step in improving each residents’ outlook on rehab, life and feeling more positive about their future.

“It is important that residents feel mentally able and motivated to participate in their rehabilitation, which, can be both physically and emotionally draining. Music Therapy has been able to provide that psychological support needed for each individual to progress in their rehab journey.”

Chroma approached this project with the aim to empower residents and promote recovery. The project extension is a true reflection of its success and will continue to be highly collaborative, with all therapies working together towards the same goals – and always with ‘the resident comes first’ approach.

Sue Ryder Neurological Care Centre Lancashire is a purposebuilt, state of the art neurological care centre based in Eastway, which provides specialist neurological care, rehabilitation and support to people living with neurological conditions such as Parkinson’s disease, Huntington’s and multiple sclerosis as well as those with acquired brain injuries.

82

THERAPIES

Watergate School signs up Chroma to support SEN pupils

Chroma sees strong growth post-pandemic, as number of therapists tops 100

Watergate School, a special school in Lewisham, has partnered with Chroma, the UK’s leading provider of arts therapies, to provide music therapy and neurologic music therapy (NMT) to their pupils.

Watergate, an OFSTED outstanding school, caters for pupils aged four to 11 years with severe learning difficulties, complex needs and some children have an additional diagnosis of autism.

Chroma will provide a range of music therapy and NMT techniques to help maintain or improve skills for those pupils with a neurologic condition - typically speech and language and motor and cognitive skills, and support those children with emotional needs ensuring children’s welfare is approached holistically within the music therapy sessions.

Chroma music therapist Esme Bray will lead the therapy sessions, initially, three days per week working with children diagnosed with Autism, learning difficulties, cerebral palsy and global development delay.

Esme approaches music therapy from a client led perspective, tailoring sessions to each individual child, working with their strengths and gently guiding them to expand their capabilities in the areas of communication and fine motor control as well as providing a space for children to express themselves safely through an enjoyable non-verbal medium.

As part of a multi-disciplinary team, including teachers, higher level teaching assistants, therapy assistants, speech and language therapists and occupational therapists, music therapy sessions will help pupils acquire functional skills to improve communications, regulate mood, motivate and support emotional development, much of which has been hindered by the pandemic.

Esme said: “It’s wonderful to be able to deliver a music therapy service at Watergate School. We know from experience and science that therapies like music therapy can help pupils regain or attain functional skills to help them overcome significant challenges and barriers to learning and I am grateful to be able to be a part of the team.”

Linda Matthews, headteacher at Watergate School said: “I am delighted to have Chroma come on board with us on our holistic approach to learning. Here, our pupils’ learning and achievement is our priority. We believe music therapy is the next best step in helping our pupils achieve their goals whether that be educationally, functionally or cognitively.

I look forward to the longevity of the partnership and the outcomes it achieves."

After an uncertain start to 2021, Chroma, the UK's leading creative arts therapies provider, is on target for its best year of growth since established in 2013.

Chroma delivers all three of the creative arts therapies across the UK either face-to-face or virtually, to those living with a brain injury, to adoptive families offering post-adoption support to enhance communication and strengthen bonds, and to children and young people with Autism.

Despite the COVID complications, referrals have continued to increase throughout 2021 and as a result, Chroma has just employed 10 therapists, all starting in January 2022, with the team expanding to over 100 therapists. In addition, Chroma is also investing in two new non-clinical roles within the operations and referrals team to build more capacity due to the increase in referrals.

Record growth has seen new partners sign up with Chroma in 2022 including The Harley Street Clinic (HCA), Watergate School in London, and in three new Voyage Care residential settings.

In addition, Chroma continues to see growth in the medicolegal sector and residential sectors with partners such as Sue Ryder, Voyage Care and STEPS Rehabilitation extending contracts to deliver arts therapies services to help clients improve rehabilitation outcomes, increase motivation or help improve mental wellbeing.

Chroma’s OFSTED accreditation, as an Adoption Support Agency, has also helped it expand post-adoption support, a vital tool in helping children emotionally express themselves as well as help form bonds between parent and child.

Daniel Thomas, managing director at Chroma said: “These are exciting times at Chroma.

"Following a difficult 18 months, it is pleasing to see the business recover to pre-pandemic levels and in fact better our growth forecasts. COVID has had a major impact on the physical, mental and emotional wellbeing of people and there has been greater recognition of the value of the arts therapies, and music therapy, in particular can have on improving rehab and welfare.

“Our team continues to grow from strength to strength, and we plan to build upon our success in 2022 by developing stronger partnerships within the medico-legal, healthcare and adoption support sectors.”

83

NRTIMES

TECHNOLOGY

I knew there had to be another way we could help patients recover A world-first app developed by a neurophysiotherapist is delivering life-changing outcomes for people with paralysis caused by stroke and traumatic brain injury, with many regaining the ability to move parts of their body using brain stimulation technology.

Benjamín Chitambira has seized on the potential of regaining balance, muscle tone and muscle strength directly through stimulating the brain through his app, enabling people with paralysed limbs and clawed hands to improve their recovery.

The app capitalises on the basic principle of a set of lines on a screen, which induce sensory conflict in the brain between the visual motor system and balance system in the ears, stimulating the brain from what Ben describes as a “physicsbased, rather than biology-based, approach”.

The development of the app has been a process of more than ten years, with Ben - an NHS physiotherapist for 16 years, before leaving in 2019 to start his business, Neurorestorative and Neurorehabilitation Solutions (NRNRS) - turning to research during his previous career to better help his patients, discovering his breakthrough therapy in the process.

The app is currently in use by NRNRS, with a three-year plan in place for global expansion once it has completed a randomised controlled trial.

Preliminary peer-reviewed papers have already confirmed the app’s effectiveness within the first three months of recovery, with further papers and verification currently being prepared to show its longer-term credentials in supporting recovery even in chronic cases in the community.

“This is unprecedented and very exciting,” says Ben, based in Ashford, Kent.

“Using this way, I have had people who are paralysed on one side with no sitting balance, recover within eight weeks to be able to use their affected side and prevent clawing of affected

NRTIMES

paralysed hands. They can go on to stand and walk normally in the community, as if they never had paralysis.

“People who have had rigidity and clawing of their hand recover its use, which is especially pleasing when it is on their dominant side, as it helps to regain a lot of independence. Those who feel they are swinging their leg when they walk can recover the walking style they hope for.

“Word is spreading across the country, and we are expanding the app, but very slowly.

“Currently, it is in use at my practice and very recently one other. But the fact it is an app means it can be used anywhere and empowers family members to be part of the rehabilitation process daily at home, instead of just watching helplessly.

“There is huge potential, and once we have completed the randomised controlled trials, we can look at going into other countries across the world.”

The inspiration for the app came from Ben’s career with East Kent Hospitals Trust, where he wanted to find new ways to advance his patients’ recovery.

“When I worked in the NHS, I always wanted to do research,” he says.

“In neurorehabilitation, we often put neuroscience aside so we can work on standing and walking, but I wanted to find out what we were missing. I wanted to know how else we could help people recover use of their affected side, how we could help the rigidity in their hands.

“There had to be another way, so I kept my mind open.

“In 2004, I did a course in managing dizziness and I realised how

84

TECHNOLOGY

important that is in stroke and traumatic brain injury. In physio sessions, we were getting people with stroke and TBI up and telling them the dizziness would go away, but not actually doing anything about it.”

From there, Ben began to research the issue, and adopted his findings into his neurophysio sessions while still working in East Kent Hospitals Trust.

“I had enough numbers of patients to compare with similar patients treated by my colleagues to show the effect of my way of working. A lot of my colleagues strictly stuck to the traditional approach, which made comparisons of similarly impaired cases’ recovery trajectories easy to do,” he recalls.

“As I went down the research route, the impact it was having on my patients was there for all to see. Things evolve, nothing stands still and especially not science, so I knew I would have to

85

set up on my own to make my app become what I wanted it to be.”

Since leaving to establish NRNRS in 2019, plans for the app are now fully developed with it set to become a commercial reality in the years ahead, pending controlled scientific experiments, peer review and licensing.

Ben also plans to carry out ongoing research to continually maximise its potential in other neurological conditions such as Guillain Barre Syndrome and spinal cord injuries, where he has noted unprecedented recovery in impairments rather than just in function.

“There are so many offshoots to the research which can bring in new conditions, and we can look at new outcome measures.

There is so much more we can do, and a lot of work to be done, but we will continue to build on what we can currently do so we can help as many people as possible,” he says.

NRTIMES

PATIENT STORY

Achieving her goal to sing again A former opera singer who was paralysed from the neck down has been able to perform again following an extensive rehabilitation programme comprising “therapy, perseverance and hope”.

Naomi Hyamson was a sub-editor at The Times newspaper for 20 years and a semi-professional opera and cabaret singer, but became tetraplegic after developing the degenerative condition cervical myelopathy, which left her barely able to speak.

Having become a resident of British Home, a specialist neuro-disability residential centre in London, her potential for recovery was spotted after she moved a finger in May 2018 while still in hospital.

A tailored rehabilitation programme was then devised to restore nerve pathways and build strength in her lungs and core muscles that had degenerated when she was paralysed.

Naomi went from total paralysis that lasted many months – during which she had two potentially fatal chest infections, caused by her tetraplegia – to gradually regaining the ability to perform a variety of tasks, such as being able to feed herself, move her table, operate a smartphone and iPad, and get into her power-wheelchair with extensive independence.

In 2020, she edited the visitors’ guide to a highly successful exhibition curated by a friend, and the captions for the exhibits, and also edited the press release for the exhibition.

And in a hugely significant achievement for Naomi, she developed enough strength in her lungs and core muscles to be able to begin singing again, even being able to take to the stage at British Home’s Summer Party to perform Gershwin’s Summertime, and for an encore, the folk song Blow the Wind Southerly.

She now practises for one hour a day and has even begun giving singing lessons to the other residents at the home.

“One of the most rewarding aspects of providing rehabilitation therapy is that we are able to restore and preserve people’s

NRTIMES

identities,” says Paul Perkin, CEO of British Home.

“We worked with Naomi to strengthen her core muscles and lungs and it’s amazing to see her independence grow over the last few years.

“Naomi’s commitment to recovery, with the help of the therapy team, allowed her to become more independent, and after a long journey, she was able to sing again, which was really special to experience at our annual British Home Summer party.

“Naomi’s love of music and singing has been felt by everyone at the home thanks to the singing lessons that she introduced in June, and it’s amazing that she has been able to help other residents express themselves creatively.”

Naomi began singing from an early age, having grown up in a family passionate about music, but only began classical voice training at the comparatively late age of 26.

By the time she reached the standard at which she could have been accepted by a music college which might have led to a career as a singer, she had two other degrees and an established career in journalism.

Instead, she took a semi-professional path, which included a tour of Wales in Mozart’s The Marriage of Figaro.

A mezzo-contralto, she was in great demand to give concerts for Jewish community organisations, especially the Association of Jewish Refugees. Naomi studied with the then Streathambased American soprano Arlene Randazzo and performed with her company Randazzo Opera including at The Rookery in Streatham.

However, Naomi suffered from degeneration in her spine, which in 2017 developed into severe cervical myelopathy, which caused compression of the spinal cord in her neck, and therefore complete paralysis from the neck down.

At the beginning of 2018, Naomi had an operation at The Royal London Hospital to relieve the compression on her spinal cord.

She was in hospital for six months before the discharge team recommended British Home.

The British Home team developed a tailored therapy plan with physiotherapy to restore nerve pathways and build strength in the muscles that had degenerated due to paralysis.

A lot of focus was placed on developing Naomi’s core and leg muscles. Over time, Naomi became stronger and can now feed herself, type herself and, after three months of intensive rehabilitation at the London Spinal Cord Injury Centre in Stanmore, transfer in and out of a power-wheelchair using a standing frame.

86

This magazine is just the tip of the iceberg

Visit NRTimes.co.uk for daily industry news and updates

SO MUCH MORE TO EXPLORE WITH NEURO REHAB TIMES ...

With Neuro Rehab Times you get the best of all worlds Print, Editorial, Online and Social

Sign up for the weekly newsletter to ensure you keep your finger on the pulse of what is going on.

Stay ahead by following NRtimes on social media

@editorNRTimes

company/nrtimes

To ensure you keep getting Neuro Rehab Times, go to www.nrtimes.co.uk/update and follow the instructions.

INTERVIEW

What’s next for rehab tech?

Innovation and tech adoption in neuro-rehab have accelerated at lightning speed during the pandemic. Now, caught between the pre- and post-COVID worlds, which enforced changes are here to stay, and how can the progress of the last two years be nurtured to improve brain and spinal care and treatments?

Here we provide an expert’s view of the likely changes ahead.

Andrew Elder is an expert analyst of medtech and digital health trends. As a former neurosurgeon, he is also well versed in the challenges healthcare professionals face in utilising technologies to improve patient outcomes.

Here the deputy managing partner of AlbionVC, an early-stage venture capital investment firm, looks at the current and looming technological changes impacting on the neuro-rehab field.

COVID IMPACT NRT: Technology has transformed approaches in neuro-rehab and healthcare generally during the pandemic. How much of this change is irreversible?

AE: What's changed is that everyone is now no longer scared of technology. They realise it has a part to play because of the last two years of engaging with technology and realising its benefits.

I think there is going to be a lot more bravery from patients, payers and providers, in terms of engaging with technology tools.

We’ll therefore see a more rapid adoption across the board.

I don't think it'll be uniform, however.

We’ve taken 10 steps forward, but we'll probably see one or two steps back post-COVID, as things retrench back towards where they were.

Human nature is to not change the status quo and in some sub-sectors, we may see a retrenchment towards going back to face-to-face and finding technology scary or difficult to integrate with normal practices.

Health systems have had this massive disruption and there are

NRTIMES

problems like waiting lists, for example. In extremis, people had to experiment with tools they wouldn’t have used otherwise, but there is a danger that when that pressure is off – when they haven’t got to deal with COVID – that they will return to normality and procurement will go back to how it was.

There is a danger that we end up slightly slipping back into business as usual; but I think as soon as people can see problems building again, the obvious place to go is technology.

CLINICAL TRIALS There are lots of areas within neuro-rehab where more and better clinical trial data is needed to advance treatments – for example in addressing paralysis or Parkinson’s drug development. How is digital technology helping to speed things up?

This is an area of enormous potential. The [research] industry is already shifting towards more digital approaches. It’s still only at about 20 to 40 per cent but COVID suddenly made everything remote for a while and moved it to 80 or 90 per cent.

It will probably come back to around 50 to 60 per cent, but the big trend is the decentralisation of trials. Instead of designing trials around a clinical trial centre, like a hospital or a clinic, and therefore patients and doctors having to come to the clinic, it's the other way around. It's now centred around the patient.

Wherever the patient is, whether in a hospital or outpatient clinic, in their home, walking around on the street, it’s all about the patient.

88

INTERVIEW

There is a danger that we end up slightly slipping back into business as usual; but I think as soon as people can see problems building again, the obvious place to go is technology

89

NRTIMES

INTERVIEW

This means you have to set your trials up differently. What are you going to measure? Over what time period? What sensing devices do we need to do that? How do we power studies?

How many patients do we have if we're doing it like this?

Everything has to change with a decentralised trial. These things were being experimented on before COVID, but the pandemic forced a decentralising on the industry.

There is a realisation, going forward, that if you’re going to recruit into a two or three-year trial you either need a primary plan based on a decentralised trial, or a very good backup one.

If I start putting people into a clinic and we have another wave of the pandemic, I have to have a backup plan that enables us to monitor patients at home.

Almost every trial now has a technology layer and a decentralised protocol, even if it’s a backup. That doesn't mean every trial can be done at home, rather we're going to have a hybrid model.

A lot of trials in the neuro world have to be done in a facility – those with spinal cord injury patients, for example. But many trials are quite easy to flex, with only some measurements taking place in the clinic. For instance, if you have a big bit of kit in a spasticity trial, that’s difficult to do in a person’s house manually. If you're using equipment to do objective measurements in a trial you may well have to have part of it in a clinic. Neuro imaging also can't be done at home. Measuring daily living activities, however, like sleep patterns, eye movements, breathing, heart rate, respiratory rate and so on, can all now be done at home. We are increasingly seeing this move to decentralised trial protocols and a hybrid [approach].

Companies are selling software into this area to help pharma firms gather that data and engage patients.

Keeping patients happy in the trial is really important. If you're relying on technology to do that, if you don't get the technology right, you will lose that patient. If technology is too clumsy or clunky or the interface isn’t easy to follow, the patient won't engage and they'll fall out of the trial. Pharma companies are now therefore saying ‘we have to get this right.

We have to use technology and it has to be patient engaging’.

DIGITAL THERAPEUTICS We’ve heard a lot about digital therapeutics as a rising force in healthcare in recent years. How do you see its capabilities and reach developing?

There are areas where digital therapeutics will be very useful and will have a profound impact. The great thing about them is that they scale brilliantly and you can deliver to fairly large numbers at very low cost. You can therefore have massive health impact in a very efficient and low cost way.

There are different types of digital therapeutics. Some involve trying to replace a pill for the same outcome. Instead of giving an anti-depressant, let’s use a digital cognitive behavioural therapy [CBT] programme, for example. These are very well grounded in good evidence. Nonpharmacological intervention has a massive place in mental health and I think we're going see a lot more of that. The brain is very open and susceptible to responding to behavioural mechanisms to improve the way it works. CBT is a great tool for doing that. Historically, it's been done by people, but it's people going through some very clear steps. You can quite easily translate these steps into digital tools.

The great thing about digital is that you can add all sorts of things like gaming, VR and immersive experiences. You can also gather data in a very objective way, which means you can then analyse it to see what's working. You can therefore speed up the development cycle of things that work.

In the past, innovation in CBT moved very slowly, because you had to do clinical trials and show what worked. We're now in a world where patients are using devices to receive digital CBT and outcomes and improvements are all being recorded, so you can very quickly see what’s working. We're able to see everything in a data-driven way - which therapies are best, which tools are delivering better outcomes and how can we make that apply to all patients in a particular scenario?

Some digital therapeutics are about compliance in terms of dosing. They involve a drug plus the digital tool, with the patient taking their regular drugs and interacting with the tool. Perhaps the tool works out that you need less of that medication. I

I think there is going to be a lot more bravery from patients, payers and providers, in terms of engaging with technology tools.

NRTIMES

90

INTERVIEW

DIGITISING CARE

think we're going to see more of that type of enhancement of current therapies through digital therapeutics. The actual use of digital to completely replace pharmacologics is not going to happen, it’s going to be a balance between the two.

It's important to note that digital therapeutics is not a panacea, with two main areas holding it back. Firstly the evolution of how to regulate these [interventions] is slowing things down, although COVID helped this massively because [regulators] suddenly realised they have to think about things differently. The other is that the payers are not quite sure how to engage with digital therapeutics in terms of being able to measure outcomes reliably. They need to know that they are not increasing costs for no actual benefit and so they, and the providers, are a little bit nervous about digital therapeutics at the moment.

Care and social care providers have had to adopt digital health rapidly during the pandemic. How will this progress when COVID restrictions are no longer dictating their activities?

Fundamentally, most areas of care involve contact with a person and will continue to require contact with a person for its optimal delivery. It may not be 100 per cent contact throughout the whole process. There are two layers to the pathway - the back office support, with the delivery of care on top.

Throughout all the back office functions we’re going to see better software systems, tools and tracking systems.

The front end has historically all been face-to-face, but we’re now going to see a sharing of little points where technology will come in to replace people. That is only where there is a

91

NRTIMES

INTERVIEW

very basic sharing of information going on. But where there is a requirement to be in contact with a person – whether its surgery, hands-on rehab or social interaction – we’re still going to have people involved and they won’t go away in a hurry.

What we then have is an integration layer with technology and people and that is a very difficult layer to deliver.

Software and care companies are two very different things.

A new trend will be the emergence of integrated technology and care delivery companies. A big part of the future of good healthcare delivery is how to create that integration of technology tools and people.

In terms of nursing homes and residential and domiciliary

care, you need people going in to see [residents]. While you can monitor them, and therefore maybe reduce the number of times going in, I think there's only so far you can go with that.

You can use those measurements for alerts to see if something has gone wrong between visits. But if you're not delivering compassion - hearing, seeing and touching the patient to see what's going on - you're missing out on a huge amount [of information]. If social care just becomes a triage service for red flags, like a robotic meal delivery hasn't happened or someone has fallen out of bed, then I think we're in a pretty sad place.

I'm hopeful that all these tools can be used to deliver more efficiently, but we still keep as much personal contact as possible.

NEURO TECH Life-changing devices and breakthroughs continue to present new possibilities and alternative options for neuro-rehab patients. What’s next on the horizon?

I think we're going see a lot more intervention with the brain and the nervous system, both through electronics and regular pharmaceuticals.

Increasingly, we’ll see slightly more tangential approaches, such as through the microbiome gut-brain axis [the system that allows bidirectional communication between the gut and the brain].

This is becoming more mainstream and understood, with a lot of research going into it. We’re increasingly understanding that a lot of things that go on in the brain are actually linked to what's going on in our gut. The connection there is through various molecular signals and the microbiome is massively important in the molecular signals that come from the gut.

We're going to see a whole range of different tools for different areas.

Direct electrical stimulation, meanwhile, has been going on for years and we're good at it now. Deep brain stimulation and cortical stimulation using electrodes are really quite mature.

Whereas in the 90s we were using them for movement disorders, we’re now able to experiment for other things, such as actively stimulating, and turning down, parts of the brain.

A recent trial, for example, applied deep brain stimulation for severe depression. Two different areas of the brain each had an electrode implanted. The depressive part was turned down and the ‘happy’ part was turned up for a rebalancing effect that seems to have had a dramatic impact, although it’s early days.

Clearly it’s going to take a while to develop. It took a decade just to find out how those different parts of the brain worked and

NRTIMES

92

INTERVIEW

We’re increasingly understanding that a lot of things that go on in the brain are actually linked to what's going on in our gut. The connection there is through various molecular signals and the microbiome is massively important in the molecular signals that come from the gut.

STROKE REHAB

how to turn one up and one down at the same time.

We're understanding more about the brain and have mature, direct electrical stimulation technologies which we're using in more sophisticated ways.

I think there is a lot of room for innovation because we know how to use it, so it's now just about how we apply it differently.

Delivering stimulation to the spinal cord is also now straightforward so it’s all about where we put it, how we do it and how we modulate it.

We're seeing lots of really interesting non-invasive tools now too, which are stimulating nerves where they come close to the surface of the body. We're starting to understand that you can impact other parts of the body through the nervous system, which becomes almost a plumbing system. If we can access it at the periphery and you can stimulate it in a very specific way, you can impact the way nerves innovate other organs in the body.

We understand how the control of our organs happens from a chemical perspective and in terms of blood supply and general biochemistry and physiology. Yet we know very little about how the nervous system controls those organs.

But it’s an area where autonomic control is now becoming much more understood, and there's lots of scope to use the autonomic nervous system as a way of controlling various aspects of our organ systems to help overcome conditions.

One company has developed a way of using magnetic pulses to send electrical signals down the auditory nerve into the brainstem to impact appetite. You can actually overcome various issues, including overeating, by resetting the fundamental brainstem functions which control the way we eat, breathe and feel.

Companies are learning how to read the programming of the nervous system. If we understand that, we can understand how the brain is controlling an organ. We can then read what’s going wrong and how to intervene in that.

Stroke rehab is an area where tech development seems relatively buoyant right now. Which innovations are you particularly excited about?

One company I met recently has a wonderful device which uses gamification to get patients to do their rehab in a poststroke, quite acute situation. We know we have a window for rehabilitation from a stroke. It's really important that the patient complies and does all their exercises, but quite often they're really boring and they are not done well. Instead of patients coming in once a week and having a rehab session, they can actively be seen every single day doing sessions using an at-home tool.

This particular company has a device that patients hold and which has sensors that measure how they are gripping and moving. It has a whole series of games which are controlled using the device.

This is a brilliant example of how we can track patients in real life using data so we can see how they improve from day to day. When that improvement slows, you can then see which movements best help that patient.

This is where neuro-rehab can really benefit; using sensors delivered through physical devices in the home, in a gamified way, which engages a patient to use it every single day.

This can enable much more intense delivery, and can be so much more objectively driven, measured and tailored to a patient.

Andrew Elder is deputy managing partner of AlbionVC, early-stage venture capital firm focused on B2B software and healthcare. In collaboration with UCLB, he also oversees the management of the UCL Technology Fund, which invests in intellectual property commercialisation opportunities arising from UCL’s research base.

Keep up to date with the latest neuro-rehab tech on www.nrtimes.co.uk.

93

NRTIMES

TECHNOLOGY

ShinyMind rolls out to support staff nationally A mental health and wellbeing app developed over the past four years in conjunction with a specialist neurological NHS Trust is being launched into the wider public and private sectors.

ShinyMind has been continually developed since 2017 and has been created in conjunction with frontline staff at the NHS Walton Centre. The trust has been using the app among its staff since well before the pandemic.

Despite the huge growth in the launch and use of mental health apps over the past 18 months in particular, ShinyMind is the only workforce mental health app to have received NHS ‘Proven Innovation’ status.

The app was created to help increase support around employee mental health resilience and wellbeing, which is accessible 24/7, and enables people to use interactive personalised resources to develop and thrive.

ShinyMind has a Net Promoter Score (NPS) score of over 70 per cent and a retention rate after 30 days of over 60 per cent, based on trials with over 2,500 NHS frontline staff, many of whom are working in A&E departments and intensive care.

The vast majority - 97 per cent - claimed the app made them more resilient and a further 96 per cent felt less stressed.

A group of nurses and consultants from the Walton Centre came together with Rebecca Howard, founder of ShinyMind, to develop an app which was suited to the requirements of stressful and demanding roles such as those on the NHS frontline.

NRTIMES

94

TECHNOLOGY

Through a wide breadth of everyday interactive activities, this multi-modality of different approaches is reflected in ShinyMind, to help people find something that works for them.

Initially working together on resilience workshops for Walton Centre staff, the development of the ShinyMind app soon became a joint project.

“Health and wellbeing have been really high on the agenda for the Walton Centre for the past 15 years. We’ve recognised that as being a priority for our staff for a long time, way before COVID. We’re very well known for our commitment to our staff,” Jane Mullin, deputy director of workforce and innovation at the Walton Centre, tells NR Times.

“Many of our staff are really interested in resilience and making a difference so were very interested in working on the development of the app. It took about a year to co-produce, and at that time it was one of the first apps of its kind.

“While using digital has been new to a lot of people during COVID, for us it’s already embedded and we’ve had some great feedback from our staff. We’ve had many saying they love it and use it every day, one called it ‘digital calmness at your fingertips’.

“Looking at how it’s now being used elsewhere, it’s amazing that we’ve been part of the journey, and particularly for our frontline staff who were involved in co-producing it, I know they have real pride in being involved.”

The rollout of ShinyMind is now including the private sector, with protection insurance business LifeSearch being the first

95

adopter. It has also become an investor in the app, supporting its ongoing growth strategy.

ShinyMind founder and CEO Rebecca, a leadership psychotherapist and behavioural change expert, says: “The majority of mental health apps are CBT-based but this represents just one approach to psychotherapy.

“In order to provide a resource which works for as many of us as possible, we haven’t tied ourselves to one approach; instead, we have blended elements from different psychotherapeutic approaches. Why? Because everyone is different with very different needs.

“Through a wide breadth of everyday interactive activities, this multi-modality of different approaches is reflected in ShinyMind, to help people find something that works for them. Equally, mindfulness and meditation activities don’t work for everyone. For those – the majority – who can’t always understand and steer their own thoughts, guided meditation is better suited. This is also provided via the app.

“This is the ShinyMind difference, as is the fact that users are encouraged to personalise the app and ‘put themselves into it’ so there’s some graft involved, but then from that you get the gold in terms of learning.

“It’s this that makes it so ‘sticky’ unlike many other apps, where average usage after 30 days is under 10 per cent. You put so much of yourself into ShinyMind, that to delete it would be like deleting a big piece of your life.”

LifeSearch founder and CEO Tom Baigrie adds: “ShinyMind proved itself inside the NHS in the most extreme conditions imaginable so it’s a very welcome addition to our network of support services.”

NRTIMES

PATIENT STORY

I’d seen an awake craniotomy on Grey’s Anatomy - this was not a role I thought I’d ever play Having been diagnosed with a brain tumour, Helen Fall then faced the trauma of knowing she must undergo an awake craniotomy.

Here, she discusses her experience and how it has enabled her to move on and rebuild her life At the age of 40, I received the diagnosis of a low grade glioma (astrocytoma) in the left temporal lobe. The tumour was pressing on my speech and language centre. Looking back, I recall symptoms over the last five years. More startling was the idea that the tumour had potentially started growing up to two decades before.

My symptoms began with slight memory loss. I recall an awkward moment on the phone when I was booking a nail salon appointment but couldn’t remember the word ‘manicure’. Yet the majority of symptoms resembled deja-vus or auras. When listening to an audiobook I might suddenly have a strong feeling of familiarity as if I knew the narrative by heart. Occasionally I got the feeling that a radio presenter was speaking only to me. On other occasions, I imagined hearing a message from a third party, which I’d quickly forget or rush to note down. Any notes I made were always gobbledygook.

I had no idea that these ‘deja-vus’ were in fact mini seizures. I had assumed that growing older and having tough sleepless nights raising two young children were the cause. In addition, if I ever approached a GP, I found my experiences

NRTIMES

The news that my tumour existed and that I should have an awake craniotomy felt like a punch in the stomach.

96

PATIENT STORY

extremely hard to explain. It was only after the frequency of these experiences increased from every few months to daily occurrences that I started a diary and pressed ahead for more explanation.

The news that my tumour existed and that I should have an awake craniotomy felt like a punch in the stomach. I’d seen an awake craniotomy performed in the US show Grey’s Anatomy and this was not a role I thought I’d ever play!

My neurosurgeon, Timothy Jones at St George’s University Hospital London, made it clear why he recommended this type of surgery: to de-bulk the tumour but retain my speech. He also broached uncertain topics: the definite grade of the tumour cells, the risk to my English and the possibility of losing my second language (French). It was as if someone was holding my hand to help me get oriented in a pitch black room.

Fortunately, I had four months to prepare for surgery as the tumour remained slow growing. This ended up being seven months due to pressure on hospitals during the pandemic.

During this time, I gained a better understanding of my disease by speaking regularly with Tim. I approached another highlyrated consultant neurosurgeon for a second opinion and this reinforced my decision to go ahead with the awake craniotomy.

I also spoke with the consultant clinical oncologist who specialises in treating my kind of tumour post surgery.

Tim told me that a speech and language therapist (SLT) would play a key role in my surgery. She would communicate with me during the operation and liaise with the surgery team to ensure that de-bulking the tumour avoided damaging crucial language areas of my brain.

I prepared myself physically and mentally for the awake craniotomy through improved eating, sleeping and exercise.

I expanded my interest in complementary medicine. I found myself drawn to Ayurveda as a practice of natural healing and wellbeing and I gained support from an excellent practitioner.

All of this helped me face challenging questions that I didn’t think I’d have to deal with until old age.

Before surgery, Claire Axton, my SLT, ran through a simple picture quiz with me. She explained that naming the same pictures during surgery would help them identify which part of the tumour had amalgamated with my language function.

Of course she acknowledged that I wouldn’t want to leave hospital only capable of saying words like ‘horse’ and ‘socks’! A conversation during the operation would be a more refined way of deciphering how my brain processed language. She was calm about the whole procedure which was comforting.

The day of surgery I was anaesthetised while the surgery team positioned me on my side, shaved a small amount of hair,

97

More words came back to me and I could follow conversations at normal speed…three months following surgery I could speak almost as well as before, both in English and French.

clamped my head and drilled my skull open. On reflection, it now makes me laugh to remember opening my eyes at the peak of the operation. My head was wide open yet I told them it was uncomfortable lying on my right arm! It suppose it shows how effective the anaesthetic was. I recall then being put under again to be repositioned.

Given how many hospital staff I’d met, it was very reassuring to see Claire’s face during the operation. She seemed calm and unruffled. Her face was a relaxing focal point. I recall my own face twitching a few times which she informed Tim about.

Apparently I lost my speech occasionally too. This was as a result of testing of the tumour cells prior to their removal.

Her questions led me to chat easily for a couple of hours. It was perhaps also helped by the sedation given I am not the talkative type. Time passed quickly. Suddenly Tim popped in front of me and smiled. They had finished the operation, having successfully removed over 90 per cent of the tumour.

I recall being monitored overnight in the Intensive Care Unit post-surgery and suffering a dreadful headache. I woke up asking for tea and painkillers but had no other major issues. It was a day later that my brain must have swollen due to surgery and caused sudden and significant loss of speech.

After a day or two of drug-induced dreams, a nurse helped me out of bed and pointed to the magpie nest in the tree outside my window. I learnt how to say ‘nest’ and understood that ‘magpie’ was a bird but could only imagine a pigeon and took a few attempts to remember the word. I saw a helicopter arrive at hospital but couldn’t remember what it was called.

What was left of my speech moved at a glacial pace. Watching TV or reading a book was way over my head. I switched on the old Fawlty Towers series and couldn’t understand a single word, even if familiar slapstick comedy was comforting.

NRTIMES

PATIENT STORY

My speech and understanding gradually improved. I was well enough to go home after five days despite still speaking in rudimentary fashion, like a foreign student, according to my husband. I could only listen to one person at a time and they would need to speak slowly.

Funnily enough, I seemed on the same conversational wavelength as my two- and four-year-old daughters. If they said ‘I want a story’ I understood and could read them a simple book like ‘Pete the Cat’.

Over the first two weeks home, there was a steep improvement in my speech. It continued to get better.

More words came back to me and I could follow conversations at normal speed. It was only during daily short periods of fatigue that I’d struggle to remember words, slur and talk slowly.

Therapist Claire Axton For the past five years, I have been working in the highly specialised field of awake craniotomy, supporting patients through the experience of undergoing brain surgery whilst conscious. As can be seen in Helen’s account, by the time I meet the patient for pre-operative language testing, they have often been on a long journey to diagnosis and undertaking their own preparation for surgery. At that first meeting, there are often a lot of questions and some degree of apprehension. A large part of my role is to provide reassurance and a calm focal point as described

by Helen.

Upon meeting Helen, she had questions about the surgery – how long would she be awake? Would she remember the surgery? I gave her a broad timeline of the day and explained how I would be with her during the operation and would essentially be the link between her and the surgical team during the time she was awake.

After the surgery, Helen’s language function would be carefully evaluated and support given by the speech and language therapy (SLT) team. She struck me as calm and determined about the process she would face the next day.

An awake craniotomy aims for maximal removal of a brain tumour while preserving critical language function;

NRTIMES

I took up the offer of local speech therapy from Claire, however my language seemed to surge ahead on its own.

Three months following surgery I could speak almost as well as before, both in English and French.

I am so appreciative of the care I have received so far. Part of the tumour remains and will be monitored for the rest of my life. Awake craniotomy is understandably daunting. I highly valued the second opinion I sought which backed up my decision to go ahead. Improving my physical and mental strength ahead of the operation was also clearly beneficial.

If you are in a similar situation, I would recommend early investigation of post surgery therapies, such as neuropsychological and speech therapy. Losing one’s language is unquestionably a hurdle. But the kind faces of people helping you along are invaluable.

operating on a tumour when the patient is awake enables the surgeon to push hard to remove the tumorous tissue, knowing that the patient is still able to communicate.

As Helen’s SLT, my job would be to constantly test and monitor her language function, alerting her surgeon to any changes. It is crucial then, to know the starting point, or baseline, of the patient’s communication. In Helen’s case, she was very able to participate in conversation, but on testing, she had to concentrate hard when listening to information and was sometimes hesitant when saying words.

During the surgery, Helen’s language underwent very little change and she was able to perform all the tests. Postoperatively, as described by Helen, her communication ability dipped markedly, as can often happen due to swelling of the brain. It was obvious that she was finding it difficult to understand the words I was saying and to express herself. Again, Helen was calm and I hoped that this was in part due to the preparation we had done before the surgery about changes that can occur post-op. I was optimistic that her communication would improve and, despite her initial difficulties, she was keen to get home to her husband and children as soon as she could. Helen had the help of her family, which meant she could be safely discharged home from hospital with a referral to her community neurorehabilitation team to support her recovery.

98

UK

UK Aquatherapy Specialists Aquatherapy Specialists

Aquasure UK design build and maintain Aquatherapy pools nationwide.

Aquasure poolsnationwide. nationwide.

AquasureUK UKdesign designbuild buildand andmaintain maintain Aquatherapy Aquatherapy pools We pools.

Wehave haveover over20 20years yearsexperience experiencein inAquatherapy/Hydrotherapy Aquatherapy/Hydrotherapy pools.

We have over 20 years experience in Aquatherapy/Hydrotherapy pools.

•Nationwide Nationwide design service design andand buildbuild service

Nationwide design and build service

•Bespoke Bespoke Aquatherapy pools tailored Aquatherapy Bespoke Aquatherapypools poolstailored tailored clients individual needs totothe clients individual needs tothe the clients individual needs • Underwater massage equipment

Underwater massageequipment equipment Underwater massage

Underwater treadmills treadmills •Underwater Underwater Coloured LEDtreadmills lighting

LED lighting •Coloured Coloured LED lighting Wellness products

products •Wellness Wellness products Nationwide maintenance service for all Aquatherapy poolsservice •Nationwide Nationwide maintenance service for all Aquatherapy pools maintenance

for all Aquatherapy pools

UK

Unit 13, Portland Ind.Est. Portland Street, Bury, Lancs. BL9 6EY

Tel: 0161 764 5530

UK Mob: 07887630071

Unit 13, Portland Ind.Est. Portland Street, Bury, Lancs. BL9 6EY

Email: info@aquasureuk.com Web:www.aquasureuk.com

Tel: 0161 764 Tel:5530 0161 764 Mob: 553007887630071

Email: info@aquasureuk.com info@aquasureuk.com Web: Web:www.aquasureuk.com Email: www.aquasureuk.com