NR Times Issue 15

ISSUE 15 Q4 2020

SNI F F TEST Smell loss after serious injury

ZOOM OR BUST Adventures in online conferencing

QUARTERLY

IMAGINING A NEW FUTURE R OC K BOT TO M Bouncing back after devastating blows

Art, science and other interventions helping people with brain injury

DAT I N G GAME Swiping success for vulnerable clients

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E DITO R' S NOT E

Onwards and upwards In a former life in newspapers, it was at this time of year that the dreaded churn of annual reviews and previews came.

Ups and downs of the months gone by and illinformed soothsaying for the year ahead served only to plug the festive news glut.

Pity the junior reporter seeking their highlights of 2020. This year feels less a series of chronological news events and more a mighty tempest that has shaken our entire reality off course.

There are some positives shining through the storm, but their longevity can barely be contemplated before we’ve worked out exactly what 2020 was all about.

There has been much talk of the great technology embrace; and telemedicine and digital health purveyors have certainly been among the winners this year. New ways of working have emerged and now feel like they’re here to stay, with hours spent travelling to meetings replaced by a few moments positioning laptops and checking audio. Other silverlinings of the year include fresh investment in health innovation and greater respect for key workers in all their many roles.

Perhaps the most widely felt positive of 2020, however, is its hammer-blow reminder of the importance of human interaction. Smiles hidden

Andrew Mernin, editor-in-chief andrew@aspectpublishing.co.uk Deborah Johnson, editorial deborah@aspectpublishing.co.uk Gary Wilding, head of sales gary@aspectpublishing.co.uk Chloe Hayward, sales chloe@aspectpublishing.co.uk Paul Newton, operations manager paul@aspectpublishing.co.uk

behind masks. Embraces blocked by glass.

Conversations hindered by dodgy wifi. Each momentary expression of COVID life reminds us of what we’re missing – and hopefully what we can look forward to in 2021.

Neuro-rehab professionals have fought hard to preserve what remnants of direct human interaction they safely can in the lives of their clients. Many facilities have moved heaven and earth to enable safe visiting of family members, and the crucial interactions with the cast of professionals helping them on the road to independence.

And this is no mere sentimentality or what corporate speak terms a ‘nice-to-have’. It is borne out of a recognition of the pivotal input of people, both family members and professionals, in the rehab journey which no amount of machinery or bandwidth can replace.

I wish all our readers the very best for 2021 - a year which is loaded with optimism and an eagerness to move on from 2020's challenges.

As the Blairite anthem goes, things can only get better!

Andrew Mernin andrew@aspectpublishing.co.uk

Design: Euan Underwood, Sophie Dinsdale Social media: Ethan Sisterson Editorial contributors: Johanna Perraudin, Joe Roberts, Sarah Sinclair Published by Aspect Publishing Ltd 11 Lansdowne Terrace, Newcastle Upon Tyne, NE3 1HN. Registered company in England and Wales (no. 10109188).

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CONTENTS

36 M IRRO R M IRRO R Self-reflection among rehab professionals

1 6 C H ARITY B OUNCES BACK Overcoming the challenges of COVID-19

46 S NIFF T E S T Smell loss after serious injury

2 6 ROCK BOTTOM How suicidal thoughts sparked a mission to help others

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C O NTE NT S

3 8 DATING GAME Supporting clients in finding love

5 6 ZOOM OR BUST

58 UNIT E D B Y A RT A ND B RAIN INJ URY

Adventures in online conferencing

The budding Turners of TBI recovery

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N EWS

Shedding new light on a hidden epidemic

The UK Acquired Brain Injury Forum (UKABIF) recently hosted a two-day virtual summit exploring the issues faced by the neuro-rehab community.

The conference brought together academics, politicians and practitioners to discuss topics such as brain injury in sport, domestic abuse, training and education.

Two years after the launch of the All-Party Parliamentary Group (APPG) on Acquired Brain Injury's report, ‘Time for Change’, UKABIF hosted a virtual conference to update on the group’s progress since.

The two-part ‘Time for Change’ summit took place online in November.

Around 200 delegates were welcomed to the virtual event which featured speakers from the USA’s National Institutes of Health, The Walton Centre in Liverpool, St George’s Hospital in London, University College London and the Defence and National Rehabilitation Centre.

The first part of the summit explored new developments in the management of traumatic brain injury (TBI).

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Dr Leighton Chan, chief of the Rehabilitation Medicine Department at the National Institutes of Health (NIH), spoke about the progress in developing biomarkers for TBI, including neurofilament light protein (NFL) which the NIH is currently developing.

A 2018 BMJ literature review called NFL “one of the most promising biomarkers to be used in clinical and research setting in the next future.”

The biomarker can measure neuro-axonal damage (a type of TBI) and distinguish between mild, moderate and severe brain injury up to one year after the injury occurred.

Chan said: “Our NFL findings need to be

reproduced in larger groups, but we think it’s a commercially viable option”.

COVID-19 was also a key talking point with a series of short presentations focused on the impact of the pandemic on neurorehabilitation and how services have adapted to deliver therapy online.

Speakers, including Nicky Ellis, director of Hobbs Rehabilitation, and Dr Margaret Phillips from Royal Derby Hospital, emphasised the need for flexibility and adaptability to ensure those in need of neuro-rehab continue to have access to the treatment they need.

University College London researchers spoke about the development of Neurorehabilitation Online (N-ROL), a

NE W S

telerehabilitation initiative launched this year at the National Hospital for Neurology and Neurosurgery at Queens Square.

The virtual neuro-rehab service was funded

by Hollywood star Emilia Clarke’s charity, Same You. The project at Queens Square concluded in November, however the organisation is now working with East Lancashire Hospitals NHS Trust to roll out ‘N-ROL@ELHT’.

Meanwhile, Dr Mike Dilley, consultant neuropsychiatrist at St George’s Hospital, London, highlighted the barriers between physical and mental health. “No health without mental health has to be the continuing focus going forward; integration is non-negotiable,” he said.

He also discussed the progress being made

by Neurosciences Operational Delivery Networks and suggested that delegates identify their Integrated Care System Lead and lobby them.

An update was also provided on the progress of the National Rehabilitation Centre (NRC), which is part of the overall Defence and National Rehabilitation Centre (DNRC) at Stanford Hall in Nottinghamshire.

The original idea for the centre was proposed by the 6th Duke of Westminster in 2010, who wanted to ensure that seriously injured sailors, soldiers and members of the RAF could get the best possible care.

The DNRC’s defence facility opened and began treating patients in late 2018, transferring staff from the UK’s previous defence rehab centre at Headley Court in Surrey.

Since opening the defence arm of the facility, work has now begun on developing the ‘national’ element of the institution; a project led by the Nottingham University Hospitals Trust (NUH). The first patients are expected to be admitted to the National Rehabilitation Centre in November 2024.

Professor Mark Lewis, NRC board member, said: “The NRC is an opportunity for the UK to continue to be a world leader in neurorehabilitation."

The second part of the summit explored issues including domestic abuse, education and sport.

Kicking off the conference was MP for Rhondda, Chris Bryant, who referred to brain injury as a “hidden epidemic that is real”.

He argued that neurorehabilitation is one of the most cost-effective interventions currently available to the NHS. This set the theme for the remainder of the event, which focused primarily on the progress of the APPG on Acquired Brain Injury's report, titled ‘Acquired Brain Injury and Neurorehabilitation: Time for Change.’

Bryant, chair of the AAPG, also said that COVID-19 had created an opportunity to improve neurorehabilitation as more people require access to services, especially in the community.

He pointed out that rehabilitation prescription remains “patchy” with many not receiving a prescription when they are discharged from hospital.

A significant portion of Bryant’s Q&A was focused on the prevalence of brain injury in UK prisons, which he said is “shockingly high”.

In a 2019 study of over 4,000 prisoners, hospitalised head injury was found in 24.7 per cent of participants.

Bryant said: “We need to work together to support the needs of people with brain injury and the criminal justice system needs to be led by public health approaches that keep people in the right place, with the right kind of support."

In a first study of its kind, the Disabilities Trust set up a service at HMP Drake Hall to identify and rehabilitate female offenders with a history of brain injury.

The study revealed that 64 per cent of female offenders at the Staffordshire prison reported a history indicative of brain injury, and 62 per cent reported that they had sustained a traumatic brain injury due to domestic violence.

Alarmingly, research from the Prison Reform Trust has found that around half of female prisoners have experienced physical, sexual or domestic abuse.

Speaking on behalf of the Disabilities Trust was head of the foundation, Jocelyn Gaynor.

She said: “We need to ensure the screening

is sensitive and trauma-informed.

“We all need to work together to better support these individuals."

The world of sport, especially football, came under fire from Bryant for its response to concussion and brain injury. The Labour MP was critical of sports’ bodies, with the exception of the Rugby Union.

“The Football Association’s response [to concussion and head injury] has been shocking; they have been knowingly negligent,” said Bryant.

“If they don’t get it right, then we’ll have to legislate like the USA.” With proven links between heading footballs and brain injury, the FA has come under scrutiny in recent years for continuing to allow players to direct the ball with their head.

In a 2018 interview with BBC 5 Live, Dr Bennet Omalu, who discovered the brain disease chronic traumatic encephalopathy (CTE), said heading a ball should be restricted in professional football and banned for those under the age of 18.

Speaking to the BBC he said: "It does not make sense to control an object travelling at a high velocity with your head.

"I believe, eventually, at the professional level we need to restrict heading of the ball.

It is dangerous."

This notion was reinforced by Dr Michael Grey, reader in rehabilitation neuroscience at the University of East Anglia who, while speaking at the conference, said: “We need to reduce the risk in football, particularly for young children.

"We need to keep up the campaigns and awareness, as well as pressure on government in order to make change."

Following the confirmation from the Department of Work and Pensions that assessors are being trained in brain injury, Bryant said he is “determined” to ensure that Michael Gove follows through with his promise to bring together a crossdepartmental ministerial committee to address the impact of ABI across government departments. Bryant said: “It’s vital that assessors understand brain injury and how it affects life not only on a day-byday basis, but also in the long-term."

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N EWS

Impact report shows challenges and opportunities

Case managers and service providers across the UK have embraced new ways of working during the COVID-19 pandemic which could become commonplace going forward; but concerns still persist about the lasting effects practically and financially, a new report has found.

Through the adoption of technology and remote means of client engagement, rehabilitation has continued to be provided in ways that will most likely become part of the ‘new normal’.

The Coronavirus – Impact on Rehabilitation report also highlights how, by using ‘telerehab’, clients can feel more connected to their service providers, as more time is freed up for communication by taking out travelling time.

Angela Kerr, managing director of AKA Associates and chair of the British Association of Brain Injury and Complex Case Management (BABICM), highlighted the importance of being able to break traditional sessions down into shorter online ones, to give greater regularity of contact with clients.

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She said that running 10, 20 or 30-minute ‘bitesize’ sessions can help overcome some of the cognitive drain seen in hour-long sessions for someone recovering from a brain injury. However, she added that there can be no substitute for some level of face-to-face interaction.

“Clients may paint a good picture but you can’t see what is being hidden when you’re not there.

Sometimes you feel that things aren’t ringing true. You’ll not get that feeling if you’re not in the environment,” Angela said.

For independent businesses, the financial impact of the pandemic continues to have a significant effect, with the lack of clarity around when it will end, a major ongoing factor. The report found that a quarter of those surveyed expect the industry will still be feeling the impact of the current turbulence two years into the future.

“The big concern is that we don’t see the future clearly yet,” said Toby Carlsson, owner of Pace Rehabilitation.

NE W S

“For independent businesses like Pace, it’s been a big disruption commercially and we have yet to see the full fallout. Thankfully, I do believe that even in six months, we’ll have adjusted to the new normal and look back at this period, which is now hopefully nearing the end, and it will feel like a weird and distant dream.”

The report, from law firm Irwin Mitchell, consulted various key practitioners in rehabilitation from around the country. It showed a consensus that using digital means to interact with clients would remain hugely important into the future, and widespread concerns about the uncertainty of when the COVID-19 restrictions will end.

Reflecting on the report, case managers agreed with the findings. Alison Baker, managing director of ILS Case Management, said: “Our virtual platforms have enabled us to continue to provide client centred case management; including managing care teams for clients. A definite advantage of the technology is the speed with which virtual meetings can be organised for clients, from meet

and greet appointments to multi-disciplinary team meetings. And the clients love not having to ‘tidy up’ beforehand.”

Martin Gascoigne, owner of Neuro Case Management UK (NCMUK), said that while his business and its near 100-staff across four offices have successfully adapted, there have also been significant challenges.

“The main issues that we faced were with the Government changing the rules from one week to the next, and also that all of the personal protective equipment (PPE) was ring fenced and allocated to the NHS frontline staff,” he said. “Due to this, we needed to develop strong links and work in partnership with many manufacturers around the UK so that we were able to build up a panel of specialists who we could go to for advice, support or assistance, ensuring that all of our staff remained as safe as possible. It has been a difficult year for us all and NCMUK is proud to continue to be able to offer all of the same services we could provide at the beginning of the year.”

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TIMES 26/02/2020 20:14

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Wales clinic breaks new ground in care Neuro patients are being supported with pelvic, obstetric and gynaecological matters through a link-up between a clinic and specialist physiotherapist, as NR Times reports.

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NE W S

Kirsten Barrett is part of the team at Neuro Physio Wales and supports its clients with issues including bladder and bowel problems and sexual dysfunction. Access to such specialisms is usually available via separate referrals, but through Kirsten’s partnership with the clinic, patients are able to access the specialist support directly.

Kirsten, who has worked in pelvic, obstetric and gynaecological physiotherapy (POGP) for 15 years, is seeing a growing number of patients with neurological conditions, or those living with a brain injury, spinal cord injury or stroke, as part of her case load.

While most of her work is with women, and she continues to work widely in the NHS to give this support, Kirsten has also worked with men with bladder and bowel incontinence.

“We find that with many of our neuro patients in particular, they want to talk to someone they know, and it can really help that it’s a woman. If they come through Neuro Physio Wales, then there will already be that relationship in place, and myself as part of the team can often be easier to speak to than their own GP,” she says.

“When you make a GP appointment you might not know who you’ll be seeing, but here, you know it will be me, and I think that’s quite reassuring.

“A trusting relationship is important in the kind of work we do, as we are talking about very sensitive subjects, and that’s what we really focus on building.”

While Kirsten’s work is able to help many patients, and revolves around giving advice and support, she will always refer elsewhere if she feels that will be of greater benefit.

“Sometimes, our patients just want some support, someone to talk to about what’s happening, and it may be a couple of appointments before they let me examine them,” says Kirsten, who has a Postgraduate Diploma in Physiotherapy (women’s health) and is currently on her way to completing a Postgraduate Diploma in Psychosexual Medicine.

“We have a lot of neuro patients with bladder and bowel problems, and we can help them in a variety of ways, from which pads will be best for them to showing them positioning for passing a bowel motion. Likewise with sexual dysfunction, which can also be common, we can explore issues around tightness of the pelvic floor.

“But if we feel there is something else going on, or if a patient comes in with something complex which isn’t just a physiotherapy need, we will always suggest they go and speak to their doctor. It’s really important they see a GP at the earliest stage possible, as many problems can be very treatable as long as you get them early.

“Sometimes, our patients don’t want to talk to their GP about very sensitive matters, such as discussing their bowel motions, but I will ask them if it’s OK for me to write to their GP and explain their situation.

That can really help.”

Despite the challenges brought about by the COVID-19 lockdown - which Wales was experiencing at the time of our interview - Kirsten continues to work, and keeps in touch with clients by email and phone. The Neuro Physio Wales clinic remained open during the firebreak.

“It’s really important that people know you’re there to answer any questions, and I’m always just at the end of the phone. It can be that people get really stressed through their uncertainty, and this contributes to their existing problems, so by being there, that can play a big part,” adds Kirsten.

Sometimes our patients don't want to talk to their GP ab ou t ver y sensitive matters, such as discu ssing their bowel motions...It's really impor tant that people know we're here to answer any questions.

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OPIN ION

'Our charity was made homeless during lockdown, but our support won’t stop’ While trying to adapt to the many challenges of lockdown and ensure its support for people continued, Neuro Drop In was dealt the blow of having to move out of its premises.

Founder Sharon Jackson explains how, despite the ongoing social restrictions, the Lancaster-based group pulled through the unprecedented situation.

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Next year will mark the 21st anniversary of me being diagnosed with multiple sclerosis (MS). It was a massive shock as I had a career and a family, I wasn’t ready to be disabled. I’m 62 now and have learnt to deal with it while still being able to live my life, but I know what a devastating thing it is to be given this diagnosis and the impact it can have on you and your loved ones.

That was a big part of why, in 2011, I founded Neuro Drop In. I didn’t want it to just be for people who had MS. I believed that if someone had a brain-related condition or injury, then we’re all in it together.

I wanted us all to be able to come together, there’s no point keeping us apart in separate groups, we can all help each other. It’s a group for people with neuro conditions, run by people with neuro conditions.

O PINIO N

Our charity is for patients and their families, who come from right across the Lancaster and Morecambe area. The family part is very important, as I know first-hand the impact an injury or condition can have on those closest to you.

We’ve established strong links with the NHS, who regularly direct people to us from GPs and the stroke wards at our local hospitals. We’ve worked hard to win their trust and have a close relationship now. We’ve been in the same building since 2013, in Lancaster Farms, and we’ve held many fantastic sessions there over the years. We have everything from art therapy to exercise to music, and at one time we even operated our own catering company, which provided food for visitors to the nearby prison. It was a fantastic opportunity for us, and particularly for our members, who were so invested in building our little not-for-profit operation. It gave all kinds of chances for people to get involved and build their skills and confidence. My strong belief is that there’s nothing I can’t do, and I’m always looking for new things to add to what we offer here at Neuro Drop In. When lockdown came, that was undeniably a huge challenge, but staying true to our ‘can do’ attitude, we were determined we would continue in every way we could. Many of our groups, all run by volunteers, were taken online - we had a choir, a music quiz, chat café, mindfulness sessions and a dance and exercise class; so our members had plenty of things to get involved in, if they wished.

During the period, our volunteers also delivered over 600 wellbeing packs to our families’ homes.

We provide the coffee and tea for a nice relaxing break, alongside something like a mindful colouring book to give a bit of stimulation and creativity, or sometimes an afternoon tea. People’s mental health is suffering in general, but for those with brain injuries and chronic conditions, that is so much worse; and for those who have to shield it can be a dreadful time. So we wanted to do all we could just to give a little boost.

We are building our virtual means even further and are just about to resume our neurophysiotherapy classes via a live Zoom session, as we see that as a really important way to engage people. That will definitely continue.

While restrictions have been lifted a little (at the time of writing) - although who knows what is to come next - we would have been looking forward to returning to Lancaster Farms to start holding

We're ver y resilient and ever y one of ou r memb ers will have b een through bigger challenges than this

sessions, but sadly during lockdown, we lost our building. It was mooted earlier this year that the landlord might need the building back - but at some point in the future. When the pandemic hit and everyone’s plans went out of the window, however, we thought that may have too, or at least may have been delayed. But instead, we were given 10 days' notice to leave by the beginning of August.

We had no means of income as all of our events for the year had been cancelled, so we were in a difficult situation. We’re very resilient and every one of our members will have been through bigger challenges than this, but this was nevertheless very challenging. Our support for those who need it will always be the main thing and we are determined we’ll continue to do that however we can. We have found a venue to hold coffee mornings in, which has been a real lifeline to some people who have had to shield and haven’t seen anyone socially for months.

That has been really important, but the search for a permanent home for Neuro Drop In continues.

We have found some small office space so we can at least get on with some of the logistics, and a local company has very kindly given us some of its storage space for free, as finding a place for all of our equipment without a base to move in to was a big difficulty we faced.

Our focus now is on adapting and keeping on looking to the future. Sadly, people will continue to be diagnosed with neurological conditions and sustain brain injuries, so there will always be a need for Neuro Drop In. We’ll keep on looking for a new building to call our home - but in the meanwhile, we’ll keep going and making sure we support those who need us in every way we can.

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A seamless approach to neuro-rehab Medicotech has a unique approach to neuro-rehab which puts the patient at its heart and provides a seamless experience for professionals.

With a vast range of neuro-rehab applications available, rehab centres and units often find themselves sourcing equipment from various providers.

Medicotech is addressing the often-disjointed nature of neuro-rehab this can cause, by providing a seamless approach.

The company offers “the complete solution for rehabilitation”, with a piece of equipment suitable for every stage of the rehabilitation process, from the most acute stages right through to discharge.

Patients may start their rehabilitation journey with a recently-launched piece of equipment called the bemo, designed by THERA-Trainer.

The bed application allows for the acutely ill to exercise while lying down in intensive care units, helping to mobilise patients through circular passive, assistive or active movement of the upper and lower extremities.

When patients are well enough, they may move onto static bikes which are used from the sitting position. The bikes are utilised by physios in hospitals for all neuro and general rehab.

Once they have the strength to stand up and balance,

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patients may move onto the company’s range of frames, including the THERA-Trainer balo.

Medicotech’s team also enables patients access to the Lyra Gait Trainer, which encourages people to get back on their feet and walking again.

Medicotech’s equipment is tied together by its innovative software which works across the company’s range of devices.

Patients can use the static bike or standing frames, with activity driven by a gaming platform which provides feedback for physios. The software monitors the patient and provides statistics on their progress.

This gives physios the assurance that the therapy is having positive outcomes and adequately supporting their recovery.

Operations manager Kathleen Mansour says: “Many of the big NHS and private hospitals throughout the country turn to us to kit out their whole gym. Rehab centres are looking for this kind of equipment and they want to get it all from a one-touch place.

“Otherwise, they have to source them from a number of different places, which means aftercare services are then staggered and provided from a range of different companies.

“This can become very expensive. Not only are you paying each time you invest in a different application, but you’re also paying for different aftercare services and buying individual software for each device. With our equipment, one software platform works across the entire range.”

Medicotech was founded by Shukri Mansour; whose experience as a paraplegic and of the rehabilitation journey, coupled with his professional connections with physiotherapists, helped to shape the company’s services.

Launched just before the 2008 financial crash, the company grew through the crisis.

Now, as COVID-19 causes innumerable challenges for businesses, individuals and healthcare services, the company says it continues to thrive.

Kathleen says: “Even with the arrival of the coronavirus pandemic, we’ve remained strong and continue to move forward, ultimately because rehabilitation is something that people urgently need no matter what else is happening in the wider world - and, in fact, it is needed even more so today.

“It is very important now with the current situation to have people mobilised quickly, which we can make possible with our range of applications.

“We can also offer equipment that people can use in their own homes, including the static bikes.”

Medicotech offers free loans and demonstrations for medical organisations.

Find out more at www.medicotech.co.uk

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PATH WAY P R OFI L E

INSPIRING A BRIGHTER FUTURE FOR RESIDENTS A neuro-rehab provider which opened its first facility in Worcester shortly before the first lockdown has succeeded against the odds – and now has plans to expand in 2021, as NR Times reports.

Inspire Neurocare provides support for people with a variety of neurological conditions, offering rehabilitation, respite and palliative care.

The firm opened its first specialist care centre in Worcester in February 2020, and this will be followed by further facilities in Basingstoke and Southampton in 2021/22.

Inspire prides itself on a novel model of care that has “no limitations on the possibility of recovery,” all led by director of clinical excellence Michelle Kudhail.

A key element of the centre’s approach is the team’s commitment to understanding that every patient, and the circumstances that led them there, is different.

Whether this means enabling people to leave high dependency hospital units and develop their independence in a modern, home-from-home environment, or providing

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long-term support or end-of-life care, the service is designed to work around the needs of each patient.

Michelle’s background means she is the ideal person to head up the Inspire team, having worked as a neuro physiotherapist in the NHS until 2010, before moving into the private sector.

She takes an holistic approach to patient care, which has led to the creation of a team of life skills facilitators and therapists at the provider, who develop their care around the needs of everyone.

“The life skills facilitators support and assist the residents to do as much as they can for themselves,” she explains.

“As the name suggests, their role is more than a carer; it is to facilitate the residents in all aspects of their care, whether that’s helping them get their

breakfast, choosing what they are going to wear, or taking their medication.

“Their skills are broad because we want them to be involved in all aspects of the residents’ care; and because we want to provide what they need at the time that they need it.

“Roles such as this also enable us to evaluate the outcome of any action. If a resident has been given pain medication, a facilitator can assess whether it’s been effective, rather than a nurse giving the medication and then not seeing them until the next round.

“We also know from a therapy perspective that some patients don’t respond well to having therapy at a fixed time on a particular day; they simply might not feel like doing it. Our facilitators mean we can best provide interventions for the resident when they want them.”

PATHWAY PRO FIL E

Alongside this role, the facility also employs a wellbeing and lifestyle coach, focussing on the health and emotional needs of both residents and their relatives, particularly during a time when COVID has caused a lot of uncertainty.

Michelle says: “We wanted somebody that had relevant experience in working with residents, particularly with neurological conditions but also with a well-rounded experience so that they would not just focus on one aspect. The idea is to have somebody who can offer support in all areas, whether it be psychological, emotional or physical.”

Staff are overseen by experienced rehabilitation consultant Dr Damon Hoad, who shares his clinical oversight with the interdisciplinary team and supports patients on their journeys. The rest of the clinical team have a wealth of experience within neuro services in and around the region.

The design of the Worcester facility draws on Michelle’s years of experience, and she had the opportunity to use her skills to help develop the purpose-built home.

She said: “We’ve had a lot of involvement all the way through from knocking down the pub that was there, to seeing it grow. Having the opportunity to be involved from the ground up was fantastic.

“Within the build itself we try to consider the needs of younger people, and so the inside of the home is very much a contemporary design and a lot of research has gone into its development to ensure it has the correct, up to date, equipment.”

Adding to the sense of autonomy staff are keen to foster, is the independent living flat, which staff are able to support via environmental controls. With soundproofed rooms, residents can enjoy listening to music or watching films without disturbing others.

In common with all care facilities, the impact of COVID means that a lot of thought has had to go into the long-term plans for the property. The recently-built visitation suite – known as the ‘family and friends lounge’ allows visitors to meet their loved ones in a safe and COVID-compliant way.

The suite includes separate access for visitors from outside, and features a large

transparent Perspex screen separating each side of the suite, while an intercom enables contact-free communication.

As well as creating an infection barrier, the screen also assists when it comes to residents who may struggle to understand that they are unable to hug their relatives, while still allowing them to communicate and see each other up close. After each visit, the room is cleaned and decontaminated in preparation for the next visit.

As Michelle explains, human contact is essential for emotional wellbeing, adding: “We’ve tried to create an environment that is as safe as possible, because we know how important visits are to the residents but, more particularly, to their relatives.

“Supporting the residents through this time is vital. We have residents that are used to going out and doing things in the community and we have had to adjust by being creative in the ways in which they can still access things that they enjoy and still communicate with their families.”

And while the pandemic has certainly delivered some challenges, Michelle and the Inspire team have been able to look at some positive outcomes.

She explains: “One of the positives for us is that it gave the team and the residents the opportunity to really get to know each other. We could also develop the life skills

facilitator role to its truest form, because everybody was very much working together dealing with the crisis, supporting each other and supporting the residents.

“It was a testing time but it actually it brought the team together, bearing in mind the facility opened literally as everything was going into lockdown.”

The creation of the COVID-secure visitation suite is just one example of the creativity with which all at Inspire approach care, Michelle says.

By looking to build collaborations with other organisations, Michelle also hopes to share her hard-won knowledge, potentially becoming involved in research and training in the future.

Despite the upheaval of its first few months, the Inspire team has already achieved some successful patient outcomes.

One such success story is the case of Adrian, who came to the centre for specialist neurorehab following a car accident in which he suffered a severe brain injury. In the months that followed, Adrian’s* journey enabled him to walk out of the service and return home to his wife and children.

While the coming months may bring more challenges, as COVID lingers and vaccinations are rolled out, the Inspire team seemingly has the skills, approach and dedication to rise to whatever the future holds. *Find this story online at nrtimes.co.uk to read more about Adrian’s journey. www.inspireneurocare.co.uk

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N EWS

Outdoor rehab approach to kick off in 2021

A new neuro-rehab centre which uses outdoor activities as a basis for its rehab has confirmed its long-awaited opening date.

Calvert Reconnections is the UK’s first intensive acquired brain injury (ABI) rehabilitation centre which offers a unique approach to rehab for its residents.

Based on the outskirts of Keswick, in the Lake District, it takes advantage of its location by offering a programme of outdoor-based activities, all tailored around the needs of the individual.

Ongoing COVID-19 restrictions have meant the opening of Calvert Reconnections has been delayed on two occasions this year, but it has now been confirmed that the centre will finally open its doors in spring.

“We can’t wait to open in Spring 2021,” says centre director, Sean Day. “2020 has been immensely difficult for everyone, but better times are on the horizon.

“We are continuing to take referrals in advance of our opening and would like to thank the whole brain injury community for their support and understanding.”

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The purpose-built centre has been taking referrals in advance of its opening, and continues to do so, with high levels of interest in its new service.

It has also developed the UK’s first COVID-19 compliant residential brain injury rehabilitation programme, which combines traditional clinical therapies with physical activity in the outdoors.

Led by an interdisciplinary team, the six-month residential programme offered at Calvert Reconnections will motivate and inspire ABI survivors through vocational activity and encouraging outdoor adventure. It believes it will also deliver tangible social benefits including self-confidence, independence and motivation.

Its unique approach has been hailed throughout the neuro world as being a huge positive for patients in their recovery and a much-needed resource within the UK.

Calvert Reconnections is part of The Lake District Calvert Trust, a pioneering charity which has challenged disability through outdoor adventure for over 40 years.

With the development of its new centre, that support is now being extended even further, with professionals across the UK keen to access its services for their clients.

Recent research by the charity found that 91 per cent of case managers believe brain injury rehabilitation post-pandemic is going to be more reliant on the private and charitable sectors due to stretched NHS resources, while 86 per cent anticipate an increase in the use of outdoor activities in rehabilitation plans for brain injured patients. A further 89 per cent expect the UK to face a “tidal wave” of brain injury rehabilitation need, while the majority of case managers will look to resume faceto-face rehabilitation as soon as it is safe to do so.

T HE RAPY

How art unlocked a new future for brain injury survivor Artist and art therapist Carl Arroyo, from therapy provider Chroma, shares the story of brain injury survivor Ricky, whose interest in tattoo art began a path towards a life with more possibilities.

I’ve been an art therapist for more than a decade now, and it’s an incredible way of drawing people out and allowing them to express themselves.

I started working with Ricky (not his real name) in the Spring of 2020, about a year and a half after his injury. He already had a multidisciplinary team around him, and it was felt that he needed something else to support him in adjusting to his experience and his injuries. To be honest, Ricky wasn’t particularly interested in art as a whole, but he had a specific desire to design some tattoos based on his experience of his injury.

And that’s very much one of the skills that you have to have as an art therapist; that means of making a connection at some level and seeing where it takes you.

Tattoos are culturally acceptable and accessible - most towns have got tattoo parlours - so people of a certain generation find them appealing, and that certainly was the case with Ricky.

Initially, it was all about reflection, talking about the artwork, what that might relate to and then towards the end, we were looking at where he wanted to go and what he could do with his life.

And through all this was threaded the idea was that he was going to take the design he produced to a tattoo parlour and have it made into a tattoo.

One of the fascinating things that came through the design process was how he was relating it to his life, his injuries, and also his new place in the world.

His design was a skull with a crown on it, which was significant to Ricky both physically and emotionally. For example, as part of his immediate treatment following his accident, he had to have the top of his skull removed, because the brain was so swollen. He was telling me about having this plate and the materials that they were using, and from that we had the idea to place a crown on there. And then that segued into

talking about what the crown represents, in terms of Ricky being in charge of his own kingdom, and how his injury had changed how people viewed him.

One of the aspects of his injury he found hardest to deal with was being the centre of attention, surrounded by carers all the time, because in his life, in his family, he’d never had that attention. He’d not been listened to.

While he found it frustrating at times, paradoxically he came to accept that he was a king of this world and the attention was on him. The idea of the crown allowed Ricky to focus on some of the less tangible effects of his condition.

In the end, we had about 15 sessions, but, with lockdown, we were never able to meet physically and, sadly, by the time we could, he’d somewhat disengaged from the process. However, prior to that, he was getting to the point where he could see that, if he wanted to create this new life, he was going to have to be more assertive and actually start asking for what he wanted.

And that wasn’t going to be an easy process.

That’s what art therapy does; it’s about encouraging the creative process to give the patient a voice, and helping them find ways to cope with their new way of life. www.wearechroma.com

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TECH N OLOGY

ROBOTS AND

RESILIENCE NR Times reports on a new rehabilitation approach taking place in Cambridgeshire.

Despite a year of relentless change and upheaval for all involved in neuro-rehab, one provider in Cambridgeshire has been able to keep its ongoing development on track.

Askham Rehab, part of the Askham Village Community, is a recently-launched specialist rehabilitation service incorporating the latest in rehab robotics and sensor assisted technology. While the firm has invested in state-of-the-art technology to do the heavy lifting, however, its rehab services remain person-centred, as director Aliyyah-Begum Nasser explains.

“We’re a specialist rehab centre in essence, and so, although the robotic technology helps us to get the most out of our patients and staff, we are very much

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family-focused. The equipment is obviously fantastic but we know from experience that a person’s mindset, and their ability to sustain whatever improvements they make, comes down to the people who are supporting them - their family members.

“We’ve been on some real journeys with many of our family members who just didn’t understand the impact of a brain injury in terms of how it can impact behaviour or what it can do for cognition.

“Once they understand that, suddenly they become a lot more compassionate, and a lot more supportive; they become part of the recovery process, rather than being a frustrated observer.”

With recognition of the family’s paramount importance to recovery, Askham Rehab does

T E C HNO LO GY

everything within its power to harness this force – including by enabling families to stay together in specially-designed apartments on site. AliyyahBegum says: “The flats are fully adapted, with cantilever cupboards, height-adjustable sinks in the bathroom and full wet room with turning spaces.

“We have the patients themselves participating in rehab, specifically to their programme, but relatives are also there from the beginning, seeing the improvement and being part of our process from the outset.

“We think of the centre as more of a rehab environment; it’s not a just care home with therapy as an added extra.

“So from the minute our patients wake up to the minute they go to bed, everything is based around their recovery goals, and everyone is working together towards achieving them.”

And robotics are an important tool in pursuing these goals through patient exercise. They help therapists to achieve the repetitions and intensity needed to progress their clients, as Aliyyah-Begum explains.

“The point of the robotics is that they respond to the patient. For example, if you set the machine on a left lower limb, but it senses that there is more pressure being exerted through the right limb than the left, it will automatically respond to make sure the patient is moving the correct part of their body.”

The centre’s head of rehab and nursing, Priscilla Masvipurwa, says: “This is a real a game changer in our approach to rehabilitation.

“Robotics help to bridge the gap, increasing the frequency and repetitiveness of treatment, something that’s an essential part of the process.

“We anticipate that this will enable us to support our patients in reaching their goals in a more efficient and sustainable way.

“The centre has so far invested in four items from robotic rehabilitation firm Tyromotion, but is looking to add more over time, as the benefit to both staff and patients becomes ever more evident.

Aliyyah-Begum says: “It’s really important to the team at the centre that the robotics aren’t just seen as an add on.

“There is a lot of nervousness about robots replacing therapists, but our service is still very much therapy-led.

“What this means in practice is that, where a resident would previously have had maybe an hour of therapy time in an afternoon, now you have an hour of therapy time, and then you can carry on exercising if you want to, or carry on playing games with other residents.

“For example, one of our machines, the Myro, enables patients to play games like bat and ball, or perform virtual tasks like sweeping leaves.

“However, because it is all sensor-assisted, if it senses that the patient needs to work a certain hand, it will alter what it is asking them to do accordingly, while

Rob otics help to b ridge the gap, increasing the frequency and repetitiveness.

they won’t even necessarily feel they’re having therapy – it’s all part of the game, and part of their socialising with other residents.”

Askham Rehab forms part of the Askham Village Community, on the edge of Doddington village, in Cambridgeshire. It provides specialist care for people of all ages, offering day visits, respite care and continuing long-term support, both on-site or at home.

The site consists of five homes, three of which are specialist neurological facilities. In total, the neurorehab team can look after up to 52 patients at any one time, with 120 staff made up of rehab professionals and specialists. The team comprises carers nurses, physiotherapists, occupational therapists, speech and language therapists and psychologists. AliyyahBegum believes that the introduction of the robotic rehab services, combined with the patient-led therapy the group has been offering for 30 years, can only enhance the centre’s outcomes.She adds: “We know that there is an increasing number of care homes that offer specialist therapy, but the difference with Askham Rehab is that we have embedded it into the whole culture of our setting – and the outcomes really speak for themselves.

“We often discharge people earlier than planned, and that’s a testament to the fact that the patients are really working hard with the team throughout their stay with us to achieve their goals - and that is the key.”

For more information about Askham Rehab, visit www.askhamrehab.com

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PATIENT S TOR Y

My brain injury ruined my life – I wanted to end it all Having suffered a traumatic brain injury in an assault aged only 24, Martin’s life was changed forever. Here, he tells NR Times how his personality was changed beyond recognition, and why he is now relieved his suicide attempt failed.

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PATIE NT S TO RY

It was a Wednesday morning. The sun was shining, children walked past my house on their way to school, it was a day like any other. But for me, today was different. Today was the day I decided I no longer wanted to be in this world.

I took one last look at the sun from my window, closed the blinds, then went to my bedroom with a cocktail of pills to hopefully make it all just end…

Having suffered a brain injury two years previously in a violent assault, which left me with a personality even I didn’t recognise, my life was in ruins.

I had a job I enjoyed prior to that. I didn’t have a lot of money but it was enough. I had a circle of friends I’d known since childhood and we went out together every weekend. Life was good.

But since that fateful night, when I lost the person I was, things have been very different. I often say the old me died there and then on the pavement, having been attacked by a coward outside a nightclub. In reality, paramedics saved my life, and I woke up in hospital with no memory of what happened.

But while I could thankfully not recall the assault – which I’m told was totally unprovoked – I also had no memory of much of my life previously. I couldn’t remember my address, my mum’s name, and many other details you just take for granted that you know.

And that was just the start of it. As well as the memory loss, I became angry, furiously angry. I would lose my temper with the TV, the ticking of the clock, if my ready meal hadn’t cooked quickly enough. It could be anything.

But what was worse was the vicious things I would say. One of my friends came round to visit one day, who had been with me on the night of the attack and who had stayed with me while I was unconscious, he was a great and loyal friend.

‘Your ears really stick out, you look like Dumbo, you look absolutely stupid,’ I said, completely without any reason. I’d known since our school days that he had been conscious of his ears, and at one time was really badly bullied about them. Why did I make such a horrible remark out of nowhere, particularly to someone I valued so much?

That, sadly, was not a one-off, and so often, I tell the absolute truth about people and situations.

I know that really puts my mum off going places with me, she has been horribly embarrassed so many times.

The culmination of these factors, which impact your life more than you could ever imagine if you haven’t experienced them for yourself, made me think I just didn’t want this anymore. This was my life and

Today was different. Today was the day I decided I no longer wanted to be in this world

it was terrible. I wished so many times I had died on that pavement outside the nightclub, along with the person I used to be.

After closing my eyes on that Wednesday morning and deciding it was now time to end it all, I woke up in hospital for a second time. My mum never visited my house on a Wednesday, but on this particular week she decided to pop by. She called an ambulance and got me to hospital in time.

I remember so distinctly waking up, my mum by my bedside, looking absolutely distraught. That isn’t something I ever wanted to put her through, and by being so stuck in my misery, I hadn’t even contemplated the consequences for those I loved.

I realised I had to make changes.

I’m now living with my parents again, having decided to give up my desperate attempts to live independently. I’m getting proper support after admitting I can’t cope and instead of insisting I’m fine, and becoming really angry when no-one believed me, I have said I need some help.

Asking for help is not something I have ever done, but having reached the bottom, I realised that was the only way. I have come to realise that is not a weak thing to do and am now proud of myself for doing that. I have to accept I’m not the same person I was, and while that is a horrible realisation, it’s the only way I can ever hope to move forward.

The only thing I could say to anyone else who feels they can’t cope is that it’s fine to feel like that – but please tell someone. Whether it’s someone in your family, friends, medical professionals, whoever it is. Don’t be too proud to say ‘I’m struggling’. Don’t make the mistakes I did. Thankfully for me, it’s not too late to try and get some of my life back – but it so nearly was.

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PATIENT S TOR Y

A middle-aged man with MS on the job scrap heap Michael was a high-flying company director when he was diagnosed with multiple sclerosis earlier this year. Only shortly afterwards, amidst the economic impact of the pandemic, he lost his job. Here, he describes the devastating reality of the double blow, and why he is determined to find the confidence to get him through.

I was diagnosed with multiple sclerosis just before lockdown. Five months later, I was made redundant.

The two events weren’t linked, but both have been central to the real uphill battle I feel I’m fighting at present.

Prior to my diagnosis, I had a senior commercial role in a national company. It was a very demanding and stressful job, and often I’d work very long hours in a high-pressured environment. Travelling around the country was a staple of the job, so it was routine for me to be extremely tired. Amidst that, little things came and went, health niggles which obviously weren’t right, but I thought little of at first.

The day I was sitting on a train and my paperwork became so blurred I could barely see it. The time I was in a meeting and realised my left arm had gone completely numb. The awful occasion I was about to go into a presentation and my carefully-planned speech became alphabet spaghetti in my head. The growing realisation I had decreasing strength in the

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same arm which went numb previously.

These were all completely new and scary things for me, but I put it all down to the fact I was shattered. That is, until they started to happen more often. I cancelled my doctor’s appointment twice due to my schedule, but when I did eventually go, it quickly became apparent there was something to worry about. I was referred to the hospital where I underwent a series of tests, including an MRI scan, and was told in a subsequent appointment I had MS. It was not what I was expecting, and in truth it was devastating. I had a director-level role with unrelenting demands, and as someone in my mid40s, I wasn’t ready for my life to be over just yet.

I didn’t regard myself as an old man until that day, but the road ahead all of a sudden didn’t look so great.

With a young family to support and enjoy my life with, things looked very bleak.

In the weeks following, as COVID-19 hit the country and lockdown came, I was put onto furlough leave

PATIE NT S TO RY

and had plenty of time to research MS and its effects.

I realised it was still possible to live a full life. My immediate terror of being disabled and not being able to enjoy my son growing up was made much better by reading the stories of other people, who had similarly received the utterly traumatic diagnosis of having such an illness, but who continued to live their lives despite the odd blip along the way.

I chose not to tell my employer as there didn’t seem much point. I was on furlough leave, which I thought may give me the time I so badly needed to rest and recover from my exhaustion, plus when I did return to work, I may not need to tell them at all if I continued to generally function and feel well. I didn’t feel the need to tell anyone apart from my close family, and that is exactly the way I wanted it.

Just as I felt I was beginning to cope with the reality of having MS, the call came to tell me I was being made redundant. Being told you’ve lost your job during a pandemic, in which hundreds of thousands of other people are also out of work, is bad enough. But being

made redundant with MS was a double blow.

A middle aged man with MS on the scrap heap. Who would want to employ me? Absolutely, I have skills and experience and a great track record. But balance that with the fact I don’t know what lies ahead with my illness and what effect it will have on me into the future, and it’s not a great proposition. It can’t be the most appealing prospect for a potential employer.

Despite that, and the undeniable anxiety I feel every day, I can only look to the future with confidence and hope. The job search continues, and while that is a continuing weight on my shoulders and one which does terrify me, I want to try and keep as happy and healthy as is possible, to give me the best chance of managing my MS. It’s still all very new, so I’m coping as best I can, with the support of my family. I don’t feel ready to access any professional support just yet, or go to any groups or anything of that kind, but I hope that once I’ve learned to deal with it myself, then I’ll be able to reach out to others.

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TECH N OLOGY

Holistic activation of the senses Soothing sounds and relaxing vibrations are incorporated into the innovative inmu™ sound cushion, activating the senses of people with brain injuries.

The human body responds to music. What feels like a healing sound to some can be unbearable noise to others. After suffering brain injuries or a stroke, music and sounds can put tremendous strain on patients. In such cases, even something as subtle as a birdsong can become intolerable. These findings are the reason that in recent years, music therapy has become increasingly significant in the process of neurological rehabilitation of brain injuries.

Meditational Soundscapes Regulate the Nervous System The Attruphøj residential facility, located in Denmark, has recently been testing a new and unique therapy tool called inmu. The facility houses 28 patients with acquired brain injuries and is an institution provided by the municipality; employing 90 professionals from the fields of pedagogy, nursing and occupational therapy.Specialists work on the rehabilitation of the residents with the help of music therapy. Attruphøj applies neuropathic methods within their rehabilitation programme. “Most of Attruphøj’s residents suffer from an increased sensory arousal level. This means that they have difficulty regulating environmental stimuli. They are exposed to a steady stream of sensations and the nervous system is not able to regulate the reaction,” explains Gitte Hundstrup Nielsen, head of the facility.

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Closeness and Communication Without Words inmu, which is the abbreviation for ‘interactive music’, is a noninvasive tool to help making a patient’s everyday life easier. In developing the inmu, different perspectives were taken into account: those of the users, the nurses and the relatives. This created a new type of aid that supports holistic, body-related communication and promotes perception, communication and movement skills. “inmuRELAX promotes tranquility and joy. The music helps the resident to remain balanced, avoiding conflict as a result. This is a dignified method to help people and above all it is versatile in its application.” inmuRELAX can be used to lower or increase the sensory arousal level (activation level). The soft sounds, pleasant vibrations and smooth fabric of the sound cushion have a relaxing and soothing effect on the body. By moving and touching the sound cushion, the user activates the musical soundscapes, which stimulate the senses. When asked how inmu improves patients’ everyday lives, Hundstrup Nielsen explains: “We work with systematic risk assessment. This means that we respond on the basis of the signs that the residents exhibit. If a resident raises their voice, screams or tries to threaten someone, it is due to them experiencing discomfort. For example, we have one particular resident for whom our employees ensure to avoid sensory overstimulation. But in case of staff being unable to

T E C HNO LO GY

personally tend to the patient we resort to inmu. As soon as they hold inmu, we can observe a state of relaxation and tranquillity. The level of comfort and well-being, which are achieved through the meditational soundscapes, becomes visible and it also aids many residents in falling asleep.”

Musical Stimulation for a Self-determined Everyday Life Depending on the severity of brain damage, tremendous restrictions to everyday life can occur. Psychological changes and disorders can have a significant effect on a person’s perception, lead to motor disorders as well as speech impediments. The person cannot participate in regular everyday life, which affects them and the people around them. The self-image of the affected individual often deviates from reality – a discrepancy that is difficult to accept.

The recovery process is tedious, accompanied by a strong desire for a normal life. Recovery and inner balance can be promoted by music and vibrations: “We receive regular visits from a music therapist who incorporates inmuDANCE into their work, using it as a ball to play catch. While inmuRELAX has soothing and low sounds, inmuDANCE uses cheerful and animating music – the residents automatically dance, move or sing along. The results are impressive: inmu elicits an alert gaze, more relaxed facial expressions and improved posture.” With 25 years of experience in the Danish health sector, Gitte Hundstrup Nielsen has yet to come across anything she can compare to inmu: “I would recommend inmu to all professionals working within rehabilitation. This includes work with elderly people, psychiatric patients, people with physical and mental disabilities and acquired brain injuries.”

Intelligent Interaction of Human and AI The practical handling of aids plays an important role. The adaptive design of the inmu is decisive, because it takes into account the need for intuitive usability of technical devices as well as the requirement to adapt individually to each situation. The handling is simple and intuitive. Especially weak people or people with a disability benefit from it. There are no confusing switches, nor is a remote control or app required. Pleasant vibrations – precisely matched to the music – enable even people with severely impaired hearing to use the inmu.

cushion is an advanced software with artificial intelligence (AI), which reacts actively to touch and movement. No matter how gentle the interaction is, a meditative world of sound unfolds, which changes and intensifies constantly depending on movement.

The award-winning design was developed to be suitable for every hand and body. Small haptic elements invite to be explored.

Helping People Help Themselves The residents of Attruphøj are adults aged 18 to 85, with different types of and often severe acquired brain injuries. They all share a common wish and goal that reflects basic human needs: a self-determined life and the recovery of their identity. inmu treads a new path within the rehabilitation sector. Dependence and the need for constant care decreases and sensory abilities increase without external support. Mobility is another key factor: inmu is easy to handle, lightweight and hence can be effortlessly incorporated into everyday life; whether for use during the night, in critical situations or while travelling.

Usage During COVID-19 Isolation, restlessness and fear are shaping the current situation more than ever. The inmuRELAX can help to find moments of peace and relaxation in loneliness. In this particular time, good hygiene is the priority. The inmu is designed to be touched and in close physical contact with the user, which is why it is also easy to wash and maintain.

The interactive sound cushion inmu is available online: www.inmutouch.com/webshop For further information contact: info@inmutouch.com

Functioning The inmu works with multisensory stimulation. It offers the possibility to regulate the stimulation of the senses as well as the level of arousal – by the user himself. Inside the round, soft sound

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TECH N OLOGY

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T E C HNO LO GY

Tackling the selfreport shortfall How new technology could revolutionise the way patients self-report their symptoms - improving outcomes and research capabilities in neuro-rehab and other fields. ‘Patient-centred’ has become a well-worn phrase in neuro-rehab in recent years. In fact, so often is it mentioned by care and therapy providers, that it is starting to mean different things to different people, running the risk of becoming meaningless.

Of course, in healthcare the patient should, indeed, be at the heart of everything.

If self-report mechanisms are flawed, however, can we really say that this is the case? A new platform is

addressing this by changing how patients are able to self-report their symptoms, adopting a real-time approach and presenting new possibilities for rehab teams.

Self-reporting in neuro-rehab can be vitally important.

Without it, multidisciplinary teams (MDTs) may struggle to accurately assess a patient’s pain levels or discover key aspects of their wellbeing. It can be particularly challenging in brain conditions, however;

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TECH N OLOGY

with behavioural changes, fatigue and memory problems among several factors that might affect an individual’s ability to relay how they are feeling. With stroke diagnosis, for instance, studies have found that while self-reporting ‘may be a useful screening tool to identify potential stroke disease in prospective studies, it is not accurate enough on its own to confirm cases.’ (Woodfield et al, 2015).

Furthermore, a 2010 study into self-reported cognitive symptoms following mild traumatic brain injury in US veterans found that ‘self-reported cognitive functioning is significantly related to psychiatric symptoms and clinicians should appreciate this limitation’ (Spencer et al, 2010).

A new platform has been borne out of recognition of such challenges, harnessing digital tech to allow realtime and accurate self-reporting.

It could help to improve the way the progress of neuro-rehab patients is tracked and the ease at which vital neurological research can be carried out.

Tiyga, an acronym for Time Is Your Greatest Asset, is a cloud-based system that enables clinicians to capture patient diary data and monitor progress of symptoms over days, weeks and months - via an easy-to-use application. So far it has successfully been used by the Arthritis Support Group (MSK) and the Pelvic Pain Support Network, amongst others. The platform helps to bring patient knowledge to healthcare professionals in a timely way. The aim is for healthcare professionals to receive information in near-real time, allowing them to use their knowledge and experience to facilitate problem-solving.

The Tiyga dashboard allows each healthcare professional to create app accounts which are tailored to their patient. These can be configured remotely by clinicians so that their patients are able to report symptoms experienced at any time of day.

They also help to encourage conversations in a language that is relatable and understandable to a greater number of patients.

With all of the data managed in the UK, clinicians can customise the platform for each individual patient, who can then, in turn, report using a bespoke rating.

The option to add free text, explaining in their own words anything else that they consider to be relevant, allows the patient to feel in control and not controlled by a disease.

Neuro patients may have less energy or cognitive ability to navigate complex apps or forms, so Tiyga is specifically designed for ease of use, including for infrequent users of technology.

The patient needs only 20-30 seconds to report how

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they feel without having the burden of remembering all the details for the next consultation.

The reports are easily shared with members of an MDT, removing the need for the patient to repeat themselves. As a result, clinicians are able to view a unique, visual diary pattern that helps them to establish timelines and summarise statistics over different time periods.

MDTs spend a high proportion of consultation time on discussing the history of a patient, and the process can be further extended depending on how well the patient recalls their experience or time since the last consultation. Clinicians can only do their best with information given to them and cannot manage something they are unable to measure – or unaware of. Real-time input can enhance health outcomes, especially in a neuro-rehab scenario where it isn’t simply a one-off situation involving taking a pill and reporting back at a later date with the results.

This remote connection to professionals with a full understanding of the best treatment options, gives more confidence, helps to reduce anxieties and enables the patient with pre-existing or newly emerging conditions, to respond to the challenges they face. Experiences such as a migraine flare-up, for example, where there is a sudden and extremely distressing intensity at a certain period of time, may be easier to relay back to physicians accurately at a later date. Similarly other symptoms that are subjective, such as fatigue or brain fog, may be more difficult to measure in a traditional way.

In these situations, where symptoms vary over time, self-reporting through the app helps to mitigate this obstacle and reduce the potential for recall error that

It is especially hard for them to give the doctor a clear pictu re of exactly what happened

T E C HNO LO GY

Th is coul d be used

by M DTs , or as a to ol a s pa r t o f c l i ni c al re s e a rch

could affect a number of neuro patients.

Katrina Delargy, managing director of Tiyga Health, tells NR Times: “There are a number of symptoms that normally rely on the patient telling the doctor how they have been since their previous appointment.

One of the problems in the neuro area is, if the disease affects somebody’s memory, then it is especially hard for them to remember clearly to give the doctor a clear picture of exactly what has happened.

“Remembering the exact detail is why potential recall error is something that would affect a number of neuro patients.

“This could be used by MDTs, or as a tool as part of clinical research in gathering the data needed from the patient cohort.”

It could also help to capture data from patients during periods when healthcare resources are most stretched such as during the winter, or under the ongoing challenges of COVID-19. In the case of long Covid, where lingering symptoms such as brain fog and the deterioration of cognitive functioning can last over six months, CT scans may initially look normal or show only slight abnormalities. Allowing patients’ real-time feedback on these symptoms that are not yet calibrated on medical devices, may help experts identify and explain patterns.

At a time where remote appointments are the norm, self-reporting is another digital tool helping rehab teams to better engage with their patients.

In assisting those who require help re-learning to walk or swallow, for example, real-time, remote feedback could prove invaluable.

While Tiyga may not be the definitive answer to every aspect of the self-report challenge neuro-rehab, it certainly shows lots of promise in delivering truly patient-centred care. NR Times will be monitoring its development in the coming months as healthcare’s digital revolution accelerates.

To find out more email katrina@tiygahealth.eu

CASE STUDY: The Greater Manchester Neuro Alliance (GMNA) The GMNA is one of several organisations piloting the Tiyga platform. Here its chair, Deb Troops, explains why she believes it is a much-needed addition to the neuro-rehab professionals’ toolkit.

For us at the GMNA, one of the most exciting things about the platform is that, not only is it extremely clear in its approach to the patient or the client, it also offers the opportunity for the people supporting them to learn how to use it and understand what it’s actually for.

In terms of professional learning tools, it provides data that can be shared – and be part of their personal development. In the past we have had lots of pieces of paper but nothing with a joined up approach. An app which enables us to share that data with clinicians, social workers and case managers, really does enable a person-centred approach.

When people go to a clinic appointment, instead of having to remember or turn up with diaries and loads of bits of paper, the clinician sitting opposite them can actually have a record that that person has shared with them for the last six or twelve months.

That’s really important because so many times a vulnerable person or someone with cognitive problems can turn up to a clinic appointment and they might sit and become agitated or frustrated if they were to forget things.

The app could change everything when it comes to patient care. Before they even sit down with a clinician or even if they are not well enough to attend, the clinician would know how a person was feeling and could change or recommend new medication. If we could do that for people living with long-term health conditions like ME or brain injuries like Parkinson’s, imagine what a wealth of information we can share right across the board.

It puts the patient in control. I am really excited about the possibilities that this could present.

It absolutely puts the patient at the centre, so often the client is never asked for their input to MDT’s, clinical meetings and assessments.

Why not? Because they are the people who experience what is happening on a daily basis.

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CLINICAL P R ACTI CE

Taking time to look back and reflect so that the view looking forward is clearer Reflective practice within healthcare settings is widely talked about, but not always so easy to implement in the workplace. NR Times speaks to one neurological centre about how it benefits patients and staff there.

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Reflective practice and discussion in healthcare settings is a professional requirement for nurses, as laid out by the Royal College of Nursing revalidation requirements as part of their continuous professional development.

It allows professionals to take time to pause and reflect, communicate and plan, which undoubtedly leads to better outcomes for patients and staff.

But in reality, reflective practice can often be left to the bottom of the pile, underneath many of the competing responsibilities facing staff who are often pressed for time. It could be argued that this is also why reflective practice is so important – healthcare staff are facing so many pressures that it actually makes less sense to neglect the important work of individual and team reflection.

The Royal College of Nursing defines reflective practice as: A conscious effort to think about an activity or incident that allows us to consider what was positive or challenging and if appropriate plan how it might be enhanced, improved or done differently in the future.

Staff at Elysium St Neots Neurological Centre in Cambridgeshire started doing regular, weekly

C L INICAL PRACT IC E

reflective practices when its new hospital director, Fiona Box, came into the role a few months ago.

The nurses and healthcare assistants from a ward are invited into the meetings and in their absence the therapy staff monitor patients and provide activities.

“We thought it would be helpful for team members to give them the opportunity to think, learn, and to hear their opinions,” says charge nurse Jemima Vincent.

“If we have an incident with a patient, we discuss it in the session” she says.

Sessions are led by the management team, with added input from psychology teams on each ward.

They will talk through any strengths, weaknesses and opportunities, and work through an analysis to learn from the incident and create an action plan.

They talk about the worst-case scenario in relation to an individual situation and discuss how staff would manage that, so they’re better prepared in the event of it happening.

While they focus on one patient at a time, issues arise during conversations that bring in their wider experiences.

In an article published in the Nursing Times in 2019, Andrea Sutcliffe, chief executive of the Nursing and Midwifery Council said: “In these challenging times for health and social care, it’s so important that collectively we do all we can to support our health and care professionals, and their employers, in devoting time to individual, reflective, personal and honest thinking.”

Fiona has received encouraging feedback from staff, who say the meetings help the staff feel much more involved in a patient’s care and allow the team to increase their knowledge and understanding resulting in a more consistent way of working.

“Healthcare workers often don’t fully understand patients’ diagnoses or why they're reacting in a certain way, for example,” Jemima says.

“They know a patient presents with certain behaviours and may be taking medicine to help them cope but they’re not aware why the patient is showing signs of aggression and the best response to deescalate the situation,” she says.

“It’s a learning opportunity for staff, because reflective practice means that they can understand a patient’s diagnosis and why they behave how they do,” Jemima says.

“Reflective practice answers their ‘why’ questions, and gives them a more open mind.”

Jemima also benefits from the meetings; it’s a way for her to get to know staff better, especially when it comes to learning opportunities.

“I’m able to understand what level of support each member of the team requires, including training needs and if they need more knowledge on a specific topic.”

In her final year as a mental health nurse student on extended clinical placement at Elysium St. Neots, Jo took part in a reflective practice session.

She had just finished her dissertation, in which she looked at how settings can increase the opportunities and variety of reflective practices within hospital settings.

The aim of Jo’s session was to reflect on the recent deterioration in a patient’s mental state and the resulting impact on their well-being to ensure staff had a consistent approach to support the patient.

The hospital’s director Fiona asked the team about the patient’s care plan, diagnoses and needs and wishes.

Where staff were unsure of the answers to questions, Jo says Fiona gave them answers and encouraged the team to share their knowledge of the patient, problem solve and come up with an agreed plan to move forward with.

Jo found the session helpful and was impressed with how the healthcare assistants were so involved in the discussions about all aspects of the patient’s care, including the more clinical elements.

Healthcare assistants told her they found the session helpful too and that it made them feel like they had a better understanding of the patient’s changing mental state, behaviours and needs.

Jo says having the opportunity to reflect on practice is a crucial skill for all healthcare workers to help them learn from their experiences and increase self-awareness, which, in turn, can improve individual professional standards, strengthen teams and enhance patient-centred care and clinical outcomes.

For referrals to Elysium St Neots Neurological Centre or other Elysium centres visit: www.elysiumhealthcare.co.uk/neurological

Reference source: https://www.nursingtimes.net/news/ professional-regulation/nmc-highlights-importance-of-nursesreflection-on-practice-18-06-2019/

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DATING XXX

What was once a ‘hell no’ is now a ‘yes please’ Eky Popat, of BIS Services, on supporting people with brain injury in the daunting world of online dating.

Isolation, loneliness, lack of social interaction and intimacy – the social norm following the pandemic, right? Even more so for the vulnerable, including individuals with brain injury, living independently in the community.

The dating scene has always been an extremely daunting and challenging step with individuals battling loss of self, low self-esteem, and then on the other side of the spectrum egocentric, inappropriate behaviours, and disinhibition.

What this pandemic has quickly shown us is that social interaction and relationships are the backbone of our sense of belonging. When it was forced upon us that we could no longer reach out or interact with friends and families, it soon dawned on us what we were missing and what we once took for granted.

As a result, over the last few months, we have had a huge number of requests from clients to support them to research and actively join dating apps. What once was a ”hell no!” turned into a “help, please”.

It seemed that clients that once refused the idea of dating and use of apps had now been cornered into the only option available - entering the web of dating in 2020.

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What crossed our minds instantly, while supporting our clients, was how the vulnerable were becoming even more vulnerable as they became entwined in this web of dating.

There were a few clients that were already users of dating apps, who were delighted that the pandemic meant a natural increase in sign-ups and more chances of them meeting ‘the one’.

Before the pandemic, most of our clients had a criterion, a specification or a list of what Mr or Mrs Right looks like.

Suddenly, these lists were out the window and the mindset had changed dramatically. It could be said that the clients showed a lack of selection now due to the overriding need for any form of interaction or attention.

We started to see an increase in risk taking behaviours and impulsivity to break government guidelines to meet potential matches made on these sites.

Despite still receiving rehab support, the loss of social routine, lack of ‘normality’ and just the simple kind exchanges from a familiar face in the pub, were sorely missed.

We are not here to remove choice, liberty and the natural urges of the clients we

support. After all, prior to their injury there may not have been anything else, other than a concerned parent putting the brakes on a relationship.

Now, they find themselves feeling they need to justify and explain their choices.

This is personal - and intrusive at times.

Of course, our role, and that of the MDT is to maintain safety, and it is of course all the more complicated by issues of capacity and consent.

Our own values and what we deem a ‘suitable match’ might not be the same as our client, and that must be respected.

The focus is on information gathering, education of risk, ensuring safety but most of all, allowing.

As we know, we cannot monitor our clients 24/7 in this ever-evolving web of dating, but what we can do is have an open dialogue with our clients, support and minimise spontaneous meet ups.

We must be there to support when and if things go wrong, but not judge or recoil.

By taking this approach we will not be walking into a web that we cannot get out of but redefining what it feels like to walk into the web.

Eky Popat is operations director of rehabilitation provider BIS Services.

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TECH N OLOGY

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T E C HNO LO GY

THE WAY AHEAD FOR REHAB TECH NR Times invited three experts for a virtual discussion on the changing role of technology in rehab after brain injury.

Neuro-rehab specialists Anna Wilkinson and Rebecca Bancroft, of physiotherapy provider More Rehab, are joined by Louise Jenkins, partner and serious injury specialist at Irwin Mitchell.

Anna Wilkinson (AW): Using tech gives us a different way of rehabilitating someone; it keeps patients attentive, keeps them concentrated and keeps them motivated to reach their goals.

The key to neuroplasticity is the amount of repetition. This is where the technology plays a vital role.

As therapists, it is extremely hard and laborious to achieve the amount of repetition you can achieve with technology.

Technology and hands on work should go together for example, therapists may work on alignment in a therapy session to help the patient achieve a normal movement pattern.

Once they have established that, we can put them on the tech to repeat and practice.

Rebecca Bancroft (RB): What’s also very important with the technology is the quality of repetition and the feedback we receive. We could give somebody an exercise sheet and tell them to go home and do one hundred repetitions of lifting their arm in the air, but this can be mind-numbing, especially when they get to day three or four.

What’s more, we don’t know if they’re doing the movements correctly. Technology gives us the control of feedback; it alerts both the patient and the therapist if they’re getting the movement wrong so we can intervene and keep them on track.

AW: Our clients tend to be very excited about using the tech because it means they are getting more practice within a

week than they would with traditional therapy. This additional practice and repetition results in quicker and better recovery which is the ultimate aim.

I think a big component of it is related to their interest and their engagement; technology really helps make it fun for them. Some of the equipment has games installed, some of it has a feedback function.

These features make it possible for them to track their progress and makes the therapy much more interactive.

RB: Some people get a little nervous around tech, but for other people it really makes them tick. It all depends on the kind of exposure they’ve had to technology before.

A client that’s very in tune with using an iPad or an iPhone tends to love the technology we use. There are other clients that potentially aren’t as familiar with technology so tend to be more hesitant.

The tech may or may not be for them, but we always try it out and see whether they like it.

AW: Deciding which tech we use is about gathering knowledge of what’s out there, as well as getting to know the clients and what they want and what motivates them.

Clients are motivated by very different things. For example, people have very different attitudes towards technology; some love it whereas others find it quite frightening.

Louise Jenkins (LJ): At Irwin Mitchell, we’re committed to understanding the latest options available and the full range of technology that is out there, whatever the cost might be.

This is why we make sure we’re connecting with companies like More Rehab very closely so we can find the right solutions for our clients and give them rehab choices including access to

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TECH N OLOGY

the best available technology and equipment to facilitate their recovery. Some of the new equipment coming onto the market can be incredibly expensive, but within the legal process, we are entitled to claim what is reasonably required to restore someone’s quality of life to how it was prior to their injury.

We aim to build these innovative items of equipment into our legal claims in order to keep pushing the legal process to keep pace with developments in therapy developments.

AW: Louise is right that the technology can be very expensive, and it takes a good lawyer to justify it and demonstrate the fact that it will improve the patient’s life. The justification process is very much interwoven.

As professional therapists we can explain how the technology is going to make the patient more independent, give them better movement, which will then give them better function, improve quality of life and ultimately may reduce other costs.

It’s not just about giving them the best treatment that they can get, it’s about achieving the best outcome. From there, legal experts can explain why we’re using the technology and how we balance up the costs.

LJ: For people who have legal claims, we can receive interim payments to trial new technology.

This gives us the evidence that shows the benefits it has brought to the client, which helps to justify the cost.

Gone are the days where you simply put in a claim for 10 to 20 sessions of physio. This does have its place in many cases but we also look more broadly and holistically at a client’s needs.

We think about what we can do to really give them the best chance of recovery, to restore the best function possible and the highest levels of independence.

AW: If you take the Indego, our ‘walking robot’, as an example, we can achieve more walking in 10 sessions with the walking robot than 20 to 30 sessions with a physio in a lot of cases.

This is because if you’re trying to walk somebody with two pairs of hands, it’s heavy, so you might only get two metres in one session.

With the robot, they can be doing hundreds or thousands of steps. So, although technology might look more expensive as an upfront cost, in the long term it could end up less expensive.

RB: The Indego Exoskeleton is a fantastic piece of kit. It makes it possible to walk somebody who is completely paralysed or has an incomplete spinal injury or a mild to severe brain injury.

We can use it as part of a therapy session to improve gait patterning.

You can adjust the settings to give the patient what they need and allow them to use the function they have.

This is called ‘variable assist’, which is the real beauty of the

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technology. You can tweak it little-by-little as the patient progresses.

AW: We also have the AlterG, which is a really interesting concept; it’s an anti-gravity treadmill. Essentially, the patient’s lower body is zipped into a pressurised chamber which surrounds the treadmill and eliminates gravity.

This allows us to get people walking and running much sooner than if they were holding their own weight.

Particularly if pain is a factor. Both the Indego and the AlterG allow us to make adaptations to people so that they can achieve better gait for a longer period of time than they would do on ‘dry land’.

BR: The anti-gravity treadmill is great for managing neuropathic pain and it’s also very good for improving balance because the patient is de-weighted and completely safe.

Our latest piece of kit is called ICone. It’s a totally interactive computer game-orientated arm robot for upper limb rehab.

The client sits with their forearm supported and holds onto a cone.

They can then interact with games that can either be passive, active, assisted or resisted. This incorporates the trunk and the whole shoulder complex.

We also have the GripAble device which is a smart mobile device for assessment and training of hand functions.

AW: We’re inspired by the approach to neuro-rehab in other countries. In the UK, the evidence shows many acute centres barely look at arm rehabilitation in the hospital; it’s all about getting people functional so they can be at home.

Whereas in countries like Italy, they send their neuro clients home with these technologies and the outcomes that come from that are much better.

A lot of our clients don’t have the tech at home and come to clinic to use it more regularly, currently due to the associated costs, but it is something that we’d like to look forward to doing in the future which we’re very excited about.

Find this story on www.nrtimes.co.uk for a video of More Rehab’s technology in action.

Louise Jenkins is a partner and heads up the specialist serious injury team at Irwin Mitchell’s Sheffield office. Anna Wilkinson is managing director of More Rehab, while Rebecca Bancroft is clinical manager of More Rehab.

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NRTIMES

PATIENT S TOR Y

The stroke survivor turned rehab provider When Mark Fricker suffered a stroke aged just 32, the lack of access to dedicated rehabilitation inspired him to retrain as a stroke rehab specialist. Here, he shares his story.

Mark Fricker is very matter-of-fact about the impact of his stroke.

“I view it as a positive moment in my life,” he says.

“I now help people walk again, which is very rewarding, and I feel I have been given this chance in life to help others.”

In 2002, when Mark suffered a devastating stroke while on holiday, the outlook seemed bleak. With nowhere near the access to specialist rehab he knew he needed, he resolved to do it himself.

Eighteen years later, Mark is now helping others going through the same challenges, showing them how it is possible to rebuild your life and achieve your aspirations.

Having gone back to university to retrain, he has become an ARNI stroke rehabilitation specialist, supporting scores of people each year to rediscover new possibilities in their recoveries.

As the founder of Destination Fit, a studio in Weybridge, Surrey, Mark supports stroke survivors,

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alongside people with neurological conditions including Parkinson’s and multiple sclerosis, on their journey to recovery. He has also established Mark Fricker Neuro Rehab, which extends that specialist support into at-home rehabilitation.

“With limited NHS aftercare or resources once a stroke survivor has left hospital, I wanted to offer help to people who were in the same position that I was and to show them with hard work, determination and a commitment to succeed they can progress towards regaining some or all of their lives back,” says Mark.

Mark’s dedication to supporting stroke survivors came from his own experience of recovery.

His major stroke happened while on a motorbike on holiday. He was just 32 at the time.

“I was with a group of friends on holiday riding our motorcycles back from Germany when I collapsed and passed out,” he recalls.

“I crashed into a friend in front of me and we both fell off at high speed. I don’t remember this, in fact, I

PATIE NT S TO RY

don’t have any memory for around six months prior to the stroke.

“I remember waking in a small Belgium hospital with a broken right arm and dislocated shoulder and not being able to move the entire left side of my body, I had blurred vision and could hardly talk.

“I was then flown back to the UK and it was only then that we discovered I had had a haemorrhage on the brain.

“I spent six weeks in a stroke unit in London before being discharged, still paralysed and unable to walk or use my hands and arms.”

Mark’s realisation that access to specialist rehab

was not readily available was devastating, but also inspiring.

“The aftercare for stroke survivors then, as it still is now, was a 30-minute physio session once a week for six weeks,” he says.

“I attended one of these sessions for the first week, realised that it would be nowhere near enough rehabilitation to get me walking again, and decided I would research stroke rehab and do it myself.

“I set myself a long term goal of completing an ironman triathlon within five years. I knew I had a long road ahead of me as I couldn’t even stand unaided, but was determined I wouldn’t stay in a wheelchair at the age of 32.”

Mark set aside six hours each day for his

rehabilitation exercises, and refused to be deterred by the fact he could not move his left side.

“The first time I was able to pick up a marble was when I knew I would overcome my disability,” remembers Mark.

“I cried with joy and that one action motivated me more than anything else.

“I spent the next two years working on my rehabilitation. I could eventually walk with a stick, hold a knife and fork and drink from a cup.”

Mark’s hard-earned recovery then made him realise his desire to help others who faced a similar long and difficult journey ahead.

“I decided to retrain and went back to university to study sports science and in 2007, five years after my stroke, I completed an ironman triathlon,” he says.

“I also passed the level three personal training qualifications and set up Destination Fit in 2011 to help others become active and healthy. I became an ARNI stroke rehabilitation specialist and am trained in Parkinson’s and MS conditions.

“I wanted to give people hope and to prove to them that with determination and support they can achieve their own personal goals."

In the nine years since Destination Fit has been operating, Mark and his team have helped people of all ages and with a variety of conditions, improving their lives and, importantly, vastly increasing their belief in their own ability.

One client, Issy, suffered a stroke aged only nine, whilst at school. She was left completely paralysed on her right side and with some cognitive issues. Her parents were told she would never walk again, or have the use of her right arm.

She has attended Destination Fit twice a week for 18 months, and her sessions have enabled her to dance, run and rediscover many activities which previously seemed impossible.

Another client, Doug, is 71 years old, and suffered a stroke 15 years ago.

He has been working with Mark for two years now, initially to improve his walking. As a result, he was able to walk around his local garden centre – an unthinkable accomplishment prior to his rehabilitation work.

“Having been through this gruelling experience of recovery myself, I am committed to giving people hope and belief that they will get through it and can achieve their goals.

"That is what we are doing with so many clients, who are achieving fantastic results, and what we will continue to support people to do,” adds Mark.

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INSIGH T

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INS IG HT

“It’s like watching life from behind a pane of glass” making sense of smell loss after head injury

Up to three and a half million people in the UK could be experiencing smell loss, with head injury among the top four causes. But often it goes untreated for years, despite having a profound impact on a person’s quality of life.

Sarah Sinclair reports on a webinar on the topic.

Duncan Boak can’t tell when the milk has gone off.

Nor can he remember the smell of fresh basil, even though he chops it every time he cooks a tomato sauce.

After suffering a head injury in 2005, Duncan

lost his sense of smell.

“I was in hospital for a week after the accident, eating very little. It was when I came out of the hospital and had the first meal since the accident at my parent’s house when I realised I couldn’t smell anything,” he says.

“I went to see my doctor and was told nothing can be done, he said to give it time, that it might come back on its own accord and if it doesn’t ‘you will just have to live with it’.”

At the time Duncan felt that he had gotten off lightly, but in the months after the accident he began to experience depression.

Without his sense of smell he lost his appetite and, as a result, a lot of weight.

“I’m a pretty slim guy anyway, but I was a bag of bones for a while,” he says.

“The thing with loss of smell is that there is a lasting, ongoing loss of quality of life. We’re not just talking about the eating experience, it’s the removal of a really important emotional connection to the world around us and to people in it.

“There is an ongoing feeling of disconnection, of being removed from the world. It can be a bit like watching life from behind a pane of glass.”

In 2012, Duncan founded Fifth Sense, the

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INSIGH T

charity for people with smell and taste disorders.

A survey of its members published in 2014 as the Impact of Olfactory Disorders in the UK, found 92 per cent of respondents had found their enjoyment of food and drink had been reduced since losing their sense of smell.

In addition, 54 per cent had had relationship difficulties and 43 per cent experienced depression.

“It has a huge range of impacts, not only on the eating experience, but much more widely,” continues Duncan.

“You lose memories of smells and tastes, but some of the other dangers and difficulties include loss of confidence in your own abilities and there's the safety aspect - the fact you can’t smell gas or burning, or if food has gone off”.

“If I’m worried about the milk I have to rely on my flatmate to smell it for me, but the safety aspects can be a greater concern for people who live alone."

Making sense of it Research has shown that at least one percent of people in the UK lack the ability to smell, with potentially five per cent (up to 3.5 million) reporting an impaired ability to smell.

But some studies suggest that experiences of smell loss could affect up to a quarter of the population.

There are various ways in which smell disorders can present: anosmia, where a person has no sense of smell; hyposmia, a reduced sense of smell; phantosmia, smelling smells that aren’t there and parosmia, having a distorted sense of smell, sometimes described as a smell of burning rubber or a pungent chemical smell or raw sewage.

According to Professor Carl Philpott, director of research and medical affairs for Fifth Sense, and Professor of rhinology and olfactology at the University of East Anglia, smell loss is as prevalent as sight loss and hearing loss in the UK, but often goes unreported.

“If it affects about five percent of the population, that is more than sight loss in the UK [three percent], and also profound

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hearing loss [one per cent], yet as things stand we don’t have a Royal National Institute to consider and account for patients with these disorders,” he says.

Head injury is among the top four causes of smell loss, along with chronic sinusitis and respiratory tract infections such as common colds, the influenza virus and, more recently of course, the coronavirus.

But it can also be caused by comorbidities or long-term conditions such as Parkinson’s Disease or cancer.

“For those of us that run specialist clinics, head injury is a much more common presentation and post-traumatic olfactory loss (PTOL) is one of the most common reasons for people to present at my smell and taste clinic,” Prof. Philpott continues.

“It is thought that about one in three motor vehicle accidents involve the head neck region, and therefore it’s not surprising that loss of smell may accompany that.

“The other key thing is whether there’s any associated facial injuries, such as after an assault that results in a blockage to the nose.

“It can also be caused by a bruising of the brain - what we call a contra-coup injury or due to shearing of the fine olfactory nerve fibres as they cross the skull base from the nose into the brain.

“Occasionally, it could be that an individual patient already has a pre-existing problem with their nose and sinuses and the head injury exacerbates that underlying disorder.”

“In cases where the TBI is thought to be a grade one, then the chance of olfactory dysfunction is around 18 per cent, but in cases where the injury is grades two and three, this goes up to 57 per cent."

“We think in head injury clinics around 10 percent of patients are reporting smell loss and probably not really getting much further action from there,” he adds, but believes this is an underestimate, with several reasons why patients might not speak up about smell loss.

For those who have suffered an accident, they may spend a long period of time in intensive care and are therefore not in a position to be aware, or may be dealing with much more severe injuries, and so a loss of smell is not a priority.

Those who are conscious but in hospital may assume that the lack of ability to smell is down to the poor quality of hospital food.

However, early recognition is key for treatment, with any recovery most likely to occur within two years after the head injury.

“Smell training is really a very simple but key thing that patients can do,” says Prof.

Philpott.

“Those who benefit tend to be younger, have a shorter duration of the disorder and less severe trauma, so getting people to see a specialist sooner rather than later is always beneficial.”

He continues: “We can see partial recovery in about one in three people after head injury related smell loss, but complete recovery probably only occurs in about 10 to 15 percent of cases.

“The greatest chance of improvement is in that first period between up to 12 months.

There is a potential for improvement after that period, but it becomes much lower.”

Earlier this year, Fifth Sense developed SmellAbility – a toolkit to enable people to build their own smell training resources and provide physiotherapy for the nose.

SmellAbility provides information about the science behind smell training, tests to establish baseline ability, record sheets to measure how this changes over time and a diary log to record training, all of which can be downloaded or printed for use. “It is important that people create their own smell training resources whether it is following the science and using essential oils, or using everyday items they have at home.

"We encourage people to choose a range of smells that they are familiar with so that they will recognise any changes or improvements,” says Nina Bleasdale, director of development and operations.

She goes on “we encourage people to use their other senses to support them. Take a real orange, grate the skin (which actually releases the natural oil used in creating essential oil), use your sight to enjoy how the orange looks, touch it to stimulate its full appeal and use your memory of what an orange smelled like to you – all of which can help to get the most from smell training”.

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‘It’s only smell’ Fifth Sense has lots of resources on its website to provide support and guidance for people experiencing smell and taste disorders, as well as running regional support hubs around the country in partnership with specialist smell and taste and rhinology clinics.

“We’ve done a lot of work over the years to bring the people we represent and their families together, alongside clinicians and scientists, and give them the opportunity to share their stories and challenges.

“This can be really beneficial for people, and encourages wider understanding,” says Duncan.

More recently Fifth Sense has been running successful ‘Let’s Talk Smell and Taste’ virtual conversations, supported by funding from the National Lottery Community Fund and the British Rhinological Society.

The charity also does a huge amount of work to raise awareness, and works to promote, support and facilitate research in an area where much more is needed.

Fifth Sense is working with others to change this. It is collaborating with the James Lind Alliance, part of the National Institute of Health Research, to undertake a Smell and Taste Disorders Priority Setting Partnership, which will give patients, their families and clinicians the opportunity to set out their priorities for future research.

“There is nothing more powerful than hearing a patient’s voice explain what might be important to them,” says Nina, who has experienced phantosmia on and off throughout her life.

“There’s relatively little clinical research being undertaken and a lack of awareness of

the deep and profound role that smell plays in our lives.

“Quite often people are told by their GP that there’s nothing that can be done and ‘it’s only smell, it could be worse, at least you can still walk’.”

Ironically, Nina believes the fact that loss of smell has become a common symptom of the coronavirus has helped improve awareness of its importance among the public and medical profession.

“I’d like to think as a result of the pandemic awareness in the medical profession certainly has improved,” she says.

“As people’s smell isn’t returning as quickly as they thought it would following Covid, a lot of people are saying they didn’t realise how important smell was until they no longer had it.

“A lot of the research currently being conducted is around smell loss associated with Covid, which ironically, is a good thing for people with smell and taste disorders.

Awareness is being raised as a result of it becoming a much more common health condition.”

Nina adds: “For many it could be an invisible disability, you can’t tell it would affect a person’s ability to do things, but a chef may feel they can no longer cook to high standards because they cannot smell and taste their food properly, and a gas engineer may be at risk if they weren’t able to smell gas. It certainly prevents people from doing certain jobs.”

Food for thought A loss of smell can have a much greater impact on a person’s physical and mental

health, according to Sian Riley (pictured), a registered dietitian and director of Red Pepper Nutrition, specialising in nutrition following a traumatic injury.

“Before foods even touch your mouth, you will smell it.

"All those molecules from the food form a communication signal to the olfactory bulb, which continues the same signal on to the amygdala and the hippocampus which are areas in our brain involved in emotion, memory and learning.

“That smell is communicating an emotional message to us and from there the brain sends signals which regulate our appetite.”

Sian continues: “Quite often, with a brain injury, many of those olfactory receptors are lost, therefore you’re not getting this communication before the food has entered the mouth. You’re not building a picture of the food.

“Food is complex. The psychological and emotional side of food is really important, as is the social side.”

This was true in Duncan’s case. He no longer found pleasure in food and as a result not only felt his appetite slipping away, but his connection to the world too.

“One of the hardest things is this feeling of detachment from the world around us and from life’s pleasurable experiences,” he says.

“So many of our social interactions take place around a meal, if you take away the pleasure of eating and drinking then sometimes people don’t want to go out for meals anymore, they don’t want to have food with friends and family. It can be very difficult.

“It really impacted on my ability to form close relationships with girlfriends for a long time.”

This is something Sian sees a lot with clients who are experiencing smell loss. But as well as their mental health, it has huge risks for their physical health too.

“Smell disorders will decrease the enjoyment of food and decrease our appetite and this will have a knock-on effect on the nutrition we’re getting,” says Sian.

But not just in terms of weight-loss and malnutrition. The need to feel satisfied by a

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meal, may lead people to add too much salt or sugar to compensate for the loss of smell or taste.

“After a meal we need to feel satisfied and if we’re not feeling satisfied by the food, then we need to find a way of using our other senses to make it more satisfying,” she explains.

“We might add more salt, so that we can taste it, more sugar, or more fat, because that feels good in our mouth, all this is increasing the risk of obesity and heart disease.”

Instead, Sian recommends that her clients practice ‘mindful eating’ and stimulate their other senses when it comes to food, focusing on the colours, textures, appearances and temperatures in their meal.

Duncan has become finely tuned at detecting subtle differences in whether food is sweet, sour or salty and uses mindfulness techniques to be more aware and appreciative of what he enjoys.

“I might not be able to get the flavour of basil, but I still use it, because it’s about creating visual contrast, making the food more stimulating given that I don’t have the smell of it to stimulate my appetite,” he says “Experimentation is really important, trying things that you’ve never tried before, even things that you once disliked, and paying attention to the elements that you’re still able to detect.”

Everyone at Fifth Sense would agree that recognising and talking about smell disorders and sharing these experiences with friends and family is vital to avoid the sense of isolation and ‘living behind a pane of glass’ that Duncan felt.

“Talking about it is really important,” he adds.

“This is something that people find very hard to do, but I would encourage anyone affected by a smell disorder to talk about how you feel and the impact your condition has on your life.

“When it comes to food, talk about the elements of a meal that you are still able to appreciate and enjoy with your partner, family and friends to help them understand, and to help them create meals that work for you.”

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Smell and taste loss following head and brain injury can be common and it’s important to obtain specialist legal advice when there is a possible personal injury claim. This is so that interim payments can be obtained to fund the very best treatment, rehabilitation and care as quickly as possible.

Paul Brown, senior associate solicitor within the serious injury team at Burnetts Solicitors, says: “Due to the complex nature of head and brain injury claims and the multitude of different symptoms that patients can suffer smell and taste loss can be something which isn’t always fully addressed.

“However smell and taste loss can not only impact on care provision due to safety issues such as not being to smell gas for example but also, importantly, on quality of life.

“One of the things we wanted to achieve by arranging a webinar on this topic was to highlight not only the affect that this can have on the individual but also the benefits of having access to specialist treatment and support.

“Not many people may be aware of the specialist treatment service that Professor Carl Philpott provides but also the support available from smell loss charity Fifth Sense.

“Then when looking at forming the multidisciplinary team of therapists whom support of brain injured clients, I’m always acutely aware of involving specialist dietitians like Sian Riley who provide such a valued contribution to the Brain Injury rehabilitation team.

“The webinar was produced so that it was free and could be shared widely.

“All we would ask that if sharing on social media to please use #AnosmiaAwareness so that the conversation can continue and patients can be made aware of the support, advice and treatment that is available.”

The webinar has been uploaded to You Tube and can be accessed and shared on social media with any patients or colleagues who may be interested.

Find this story on nrtimes.co.uk to view it.

Further details of the help and support that Fifth Sense, the charity for people affected by smell and taste disorders provides can be found at: www.fifthsense.org.uk and full details of the rehabilitation dietetic services provided by Red Pepper Nutrition can be found at www.redpeppernutrition.com Further details of Burnetts Solicitors’ specialist brain injury legal service can also be found at: www.burnetts.co.uk/personal/ serious-injury/head-and-braininjury

‘It’s my wife who had the stroke – do I have the right to feel like I’m suffering too?

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When James’ wife suffered a stroke, both of their lives changed as a result.

Here, he talks openly about how the ongoing impact of her illness affects them both, and how he in particular struggles to cope.

It’s been two years now since my wife had a stroke. She has done so well in getting some of her old self back, but in truth I think it’s me who continues to struggle the most.

We’re a couple in our early 40s who have always loved to travel, enjoy the outdoors, eat out in nice restaurants, and just enjoy our lives. We’ve been together since we were teenagers, and while we haven’t been blessed with children, our adventures have always ensured we had plenty to keep us occupied.

It was while shopping for our latest adventure, a trip to Cuba, that both of our lives changed, probably forever. We were in a supermarket stocking up on sun cream when, all of a sudden, my wife complained of feeling dizzy. As I put my arm around her to prop her up, I noticed the left side of her face had fallen.

Instantly, I knew she must be having a stroke. People in the supermarket were fantastic, they called the ambulance and we got to hospital really quickly, but in my mind, I was preoccupied with worst case scenarios. I had Googled it once when a colleague experienced a stroke, and there is some pretty terrible stuff on the internet, most of which stuck in my mind and I now believed was going to happen to my wife.

After the hospital confirmed it was indeed

a stroke she had suffered, my wife was allowed home after a few days. Until that point, I’d felt quite positive about everything - that she was alive being the main thing, and also the effects hadn’t seemed profound at all when I visited her.

It was only once she got home that we realised the full extent of what had happened. Her left side, the side on which she first experienced the face drop, had become very weak. Walking was an issue and she needed help to get dressed.

These were alien concepts to such an independent person as my wife, and she really struggled. I found it very difficult to feel so powerless to help. Although I did try to support with practical activities, I was continually pushed away.

In the two years since, her physiotherapy has been excellent, and she has recovered a great deal. She still cannot walk as she used to, and continues to experience weakness in her left side, but the physical recovery has been very positive, aside from an ongoing fatigue which does create problems.

Emotionally, however, is very different.

Her personality has changed and now has an undercurrent of anger, any quite simple situation can prompt a really angry reaction. I would never say I was scared of her behaviour, but ‘walking on eggshells’ is my daily task from getting up to going

to bed. She also swears a lot too, which is something she never did at all prior to the stroke, and actively disapproved of.

I feel we’re in a bit of a vicious circle here – she is so frustrated at her behaviour, which I think makes things worse, particularly the anger. My wife was one of the most calm and placid people you could meet, but her change in behaviour has become noticeable to everyone. I try to help and offer comfort, but am usually met with anger, which I do find difficult to deal with.

I am now accepting of the fact these new traits are probably permanent, given that it has been two years. Our house is now a very different place to live to what it used to be. We don’t really go out that much anymore – the change in her personality is something she is very conscious of, so she prefers to be at home as much as possible.

Having lived such a full life previously, it now feels empty in so many ways.

As a husband who tries to be supportive and understanding, it is a terrible thing to admit your resent and unhappiness at how your life has turned out. Clearly, I don’t blame her and know her behaviour is beyond her control, but I feel very alone in my own home a lot of the time.

How I wish things were different – but they aren’t. And I’ll continue to get through life the best I can, being the best husband I can too.

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There are two types of Parkinson’s disease, and each may require different treatment, a leading researcher has found.

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It's long been understood that the disease could start in the nervous system of the gut and spread to the brain via the vagus nerve. But Per Borghammer, professor and consultant of nuclear medicine at Aarhus University Hospital in Denmark, says there is another way Parkinson’s starts.

Over the last six years, Borghammer has explored this theory.

“Our previous studies support that this gut-start idea could be right. In short, that Parkinson’s starts in the gut and spreads through the brain via the vagus nerve,” he says.

In one Danish study, and a similar Swedish study that later reproduced their results, Borghammer found out that patients who had their vagus nerve cut showed a 50 per cent reduced risk of developing Parkinson’s.

“This finding makes sense, since patients with a surgically severed vagus nerve should be protected against Parkinson’s because the main gut-to-brain spreading highway is no longer there,” he says.

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However, the risk reduction was only 50 per cent.

This led him to wonder – what about the other 50 per cent?

Borghammer knew that all Parkinson’s cases probably didn’t start in the gut, because scans show that, in some early-stage Parkinson patients, their nerves to the heart and gut are damaged, but in others they are not.

“I wanted to design a study that showed that the right way to think about Parkinson’s is that it can start in the gut and move to the brain, but it can also start in the brain and move down through the brain stem into the peripheral nervous system,” he says.

This would mean that, in both group of people, the disease eventually looks the same – but in the early stages it looks completely different. The motor symptoms of Parkinson’s disease only become apparent when the dopamine system is damaged – which would probably occur much earlier if the disease starts in the brain, not the gut.

“The body-first disease seems to be the worst one,” Borghammer says. “It has the poorest prognosis and these patients have a larger symptom burden than those where it starts in the brain. In body-first patients, you see a lot of early symptoms from the damaged peripheral nervous system.”

Such patients will experience symptoms including constipation, sexual dysfunction and orthostatic hypertension. And when the disease has advanced far enough it will reach the middle of the brain stem, giving rise to REM sleep behaviour disorder.

“This particular sleep disorder often has a detrimental effect on patients’ quality of life,” Borghammer says.

Normally, when we enter REM sleep, which is when we dream, the body is paralysed. But in the fraction of Parkinson’s patients who develop the sleep disorder, Borghammer says, this paralysis stops working and the person will thrash around in the night.

“We know that patients who get the sleep disorder early will progress through cognitive decline and dementia faster than other patients. We don’t know exactly why, but statistically, that’s a fact.”

In Borghammer’s latest study, he set out to see if there were two types of the disease – a brain-first and body-first. The first starts in the brain and spreads to the peripheral autonomic nervous system, and the second starts in the peripheral autonomic nervous system and spreads to the brain via the vagus nerve.

In the body-first type of Parkinson’s, he says, the

disease damages the heart and gut early, then spreads to the brain stem, where at which time the patient will get the Parkinson’s diagnosis.

“In the brain first subtype, the pathology starts inside the brain, probably most often in the amygdala, where it’s clinically silent and the person doesn’t know there’s anything wrong.”

“From there, it spreads in all directions, into the dopamine system, down through the brainstem and eventually into the peripheral nerves, which likely takes five to 10 years,” Borghammer says.

It's too early to know the implications of this, he says, but it’s likely the type types of Parkinson’s should be treated differently. He urges researchers looking into Parkinson’s to consider these findings.

“If we want to cure the disease, and eventually prevent it, we likely need two different strategies,” he says. “One tailored to the body-first and one for the brain-first types.”

In recent years there has been a huge increase in studies looking at the gut microbiome. It’s likely that, if the gut can give someone Parkinson’s, this will result in the body-first type, Borghammer says.

For example, there are several studies currently looking at faecal transplants, which Borghammer guesses will help more in body-first patients of Parkinson’s.

“This is important knowledge, because studies might benefit from including only body-first patients, but that’s not what’s being done. All Parkinson’s patients are put into one big pot.”

But, he says, there needs to be focus on both types of the disease.

If it turns out that certain bacteria in the gut put people at a higher risk of developing Parkinson’s, for example, Borghammer says in an ideal world there would be efforts to ensure people don’t have these bacteria. But this might only prevent body-first Parkinson’s.

Borghammer plans to double the number of patients and repeat the study again on a larger scale, and hopes other researchers will replicate his research in other countries.

"Hopefully the entire field will realise there are these two different types of patients. We’ve shown how they can be identified. If we’re lucky, maybe we can discover the genetic risk factor that predisposes people to the gut-first or brain-first Parkinson’s.”

Lastly, Borghammer clarifies that not all Parkinson’s patients will necessarily fall into one of the two groups, and there could be rare cases that fall outside of these two main categories.

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Concussion is a huge concern across the US military and in sport. In 2018, 19,000 military personnel were diagnosed with a traumatic brain injury, while college athletes in the US had an average of 10,500 concussions annually over the past five years.

Despite such numbers, many say there’s a lack of research to inform ways that government and industry can best tackle this problem.

In response, the largest prospective concussion study was formed to fill the gaps in understanding, to see what recovery from a concussion looks like in athletes and cadets.

More than 44,000 people have since enrolled in the CARE (concussion assessment, research and education) consortium since its inception in 2014, across 30 universities and four military service academies in the US. It has so far captured data on more than 4,300 concussions. The study is funded by the National Collegiate Athletic Association (NCAA) and the Department of Defence.

It is believed that NCAA athletes represent the best model for what happens with concussion in the military.

Researchers involved in the study hope their findings will allow them to predict what happens to people after a concussion; information which can then help inform protocols that could become the standard for universities and the military.

Steve Broglio, associate professor at the University of Michigan’s School of Kinesiology and departments of neurology and physical medicine and rehabilitation, and one of the project’s leaders, says the initial aim was to be able to define the acute history of concussion, and see what happens to people after they have a concussion, establishing both a clinical arm and a research arm.

“In the first days of the project, we enrolled 35,000 civilian athletes and military service cadets to try to understand what was going on,” he says.

“We captured this by understanding their clinical natural history,” such as if they went to the doctor about their symptoms.

“The second arm of the project was to understand what’s going on, on a biological level, using genetics and biomarkers and advanced imaging, to see if recovery on a

biological level reflects the medical level,” Broglio says.

In 2018, the team moved on to the second phase of the project, which was to understand the persistent and long-term effects of concussion.

“We continued to enrol people and we now have 55,000 participants. Each one receives a baseline exam when they enter institutions.

“The second phase is now starting to get exit data as graduates do another evaluation to see if their concussion has had any effect on their brain functioning.

“In parallel, we’re also reaching out to people who graduated from institutions, so they can do online evaluations to see the long-term effects just after they graduate, and within the first five years of graduation.

The goal now is to start tracking people for their whole life to see the trajectory, and to see what percentage of people have issues,” he says.

Thanks to its findings so far, the consortium has participated in setting the concussion policy for the NCA, which outlines how concussions are managed.

So far, CARE has published around 60 papers relating to various findings, and Broglio says some of the consortium’s findings have had more impact than others.

In general, he says, findings that chime with a wider body of research that came to the same conclusions are more likely to help enact changes in policy because they will carry more weight.

“Some of what we’ve found doesn’t match what other people have found. Some things have been consistent with other studies. When it matches, we can say, ‘Right, we need to change something’."

This research is unlike any other, he says, partly because of its far-reaching nature.

“We were interested in getting a broad understanding of what’s going on across all cohorts.

"The very first goal is to understand the natural history of concussions, and the recovery rate of athletes and cadets

participating in multiple levels and across different sports and different sexes.

“Prior to the project, most of the literature focused on male contact collision sport athletes, such as American football, maybe ice hockey and lacrosse. We have close to 50 per cent women in the study, across every NCA sport.”

These sports include basketball, baseball, ice hockey, water polo and cross country running. The areas with the most reported concussions, according to the NCAA, are women’s soccer, football, ice hockey and wrestling. CARE’s most recent research, which is yet unpublished, shows that there are different recovery rates based on the sport.

“No one has ever shown this,” Broglio says.

“There’s almost an identical recovery rate between men and women that hasn’t been found before, and which we didn’t anticipate. It’s largely been recorded that women take longer to recover, but when matched with equivalent sports, men and women’s recovery rates are virtually identical, which is a pretty significant finding.

“We’ve also had a series of papers looking at the cognitive performance of contact athletes relative to non-contact. They perform the same, if not better. This, he says, runs counter to the school of thought that repeated blows to the head cause chronic traumatic encephalopathy, a neurodegenerative disease which leads to severe and irreparable brain damage.”

Some of those things are different to what’s been previously reported, which also opens the door for more research and conversation,” he says.

As well as research, the project is also focused on education for athletes, trainers, coaches and families.

Funding for CARE expires in 2021, and the consortium is in the process of submitting for the next five-year cycle.

“We could be around for as short as 12 months, or it could be another five years.

Ideally, it would be another 50 years, so we can track participants,” he says.

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Adventures in online conferencing Thank you for your email. I am away at a (virtual) conference until Wednesday so I will have limited access to my emails. I will reply as soon as possible after I have closed that browser window and reopened my emails...

Just in case you hadn’t noticed, 2020 has been a little bit different from previous years and by ‘different’ I, of course, mean ‘online’.

Conferences have been no exception. Instead of arriving at a large hall, picking up the first of the day’s seven coffees and scanning the room for the best pens on offer, we are finishing off our morning routines and setting our out-of-office email only to sit in the same chair and log in to an online virtual conference. In March we may have hoped that these conferences would actually happen in person and that the world would quickly get back on its axis but we soon realised that this would not be the case.

We were to access it all from our computers, perched wherever we can manage in our homes.

In August, I had my first taste of this unprecedented, sociallydistanced, new-normal approach to conferences by logging on to that of the American Psychological Association (APA). For many, a previously inaccessible conference due to travel and registration fees, this year it was beamed on to my laptop at a comparatively low cost. Not only that but, unlike at physical conferences, I did not have worry about rushing from room to room, all of my belongings slung over my arm (including a tote bag of the aforementioned pens), hoping to make it on time to the next talk I had circled in the programme. I was able to click freely between ‘rooms’, catching the end of the talks while the kettle boiled in anticipation of the next speaker. I made notes from the comfort of my desk, no balancing a free notepad on my knee. It

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Merryn Dowson, of rehab goal-setting platform Goal Manager, on why the virtual conference should endure long after COVID-19’s limitations are gone.

was refreshing. Even if I missed a talk because I dipped back into some work (another luxury of the online conference), I was safe in the knowledge that it remains online for the rest of the year to be viewed at my leisure.

I had the privilege of seeing this from the presenter side too. In October, Dr Penny Trayner, Dr Andrew Bateman and I delivered an instructional course on best-practice goal setting in clinical practice at the annual conference of the American Congress of Rehabilitation Medicine (ACRM). Although a complex presentation involving multiple presenters and real-world video examples, unusually, there was no sense of trepidation about everything going to plan because, like the other presenters, we had already submitted a video of the entire workshop to be broadcast right on time. There was simply a sense of calm excitement. We were able to join the attendees in the live discussion chat, respond immediately to questions and follow the buzz on Twitter. We were even able to ask participants to log in to Goal Manager, a cloud-based platform for facilitating the key processes of goal setting, and ‘follow along’ with a case example by filling out a patient profile using the knowledge and skills developed during the course. This would not have been as accessible had everyone been gathered in a room, rather than sat at their computers. At the end, we hosted a live Q+A with the workshop participants and it truly had that sense of community that we all attend conferences for, connecting everyone with a shared interest live from their living rooms across the globe.

This continued throughout the conference including the poster presentations. As we well know, posters are often presented in the same room as a substantial lunch and, occasionally, complementary wine. This can make it slightly difficult to having

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a meaningful discussion with someone about their life’s work and the next huge contribution to neurorehabilitation. Instead, this year’s posters were displayed on screen with a short pre-recorded narration of key themes and findings.

Dr Trayner and I presented an evaluation of real world systemic interventions run within Clinical Neuropsychology Services and we were able to give much more of an insight into the bootcamp we ran, the parenting course we delivered, and the DJ skills programme that Dr Trayner has helped to coordinate. We were able to answer questions on these interventions both during the poster presentation and for a while afterwards on social media as people continued to revisit all of the posters long after each session. This meant that we too were able to see others’ posters and ask them questions. Everything was at our fingertips.

Of course, I describe all of this understanding its overwhelming sense of novelty. While I have very much enjoyed learning about the latest developments in our field while wearing considerably more comfortable trousers than I would permit myself to wear in public, I would love to be in a room with the innovators, pioneers and trailblazers of neurorehabilitation, each eager to share new ideas (not forgetting the free pens – have I mentioned those?).

Networks are built at these events that go on to forge lasting collaborations and amazing developments. Whereas academia

and specialised clinical work can often exist in silos across the country, continent and world, conferences bring everyone together.

I look forward to the next event that is held in person however I do hope that not everything from this new world is discarded too quickly. This year has shown us how so many barriers to access can be broken down just by a few additions. The option for online attendance has provided entry to previously inaccessible events; the ability to re-watch talks for months afterwards has taken away the pressure of cramming hours of content into a few days while abandoning all other commitments. More people have access to the discussions and ideas shared than ever before. I hope the concessions that allow this to happen remain long after the many advantages to physical conferences resume.

In the meantime, however, I enjoy the literal home comforts that this new age of conferences brings. As this article is posted online or published in the magazine in your hands, I will have recently attended the Time For Change Online Summit by the UK Acquired Brain Injury Forum (UKABIF) with my cat on my lap and my favourite mug in hand. At least for the time being, that is something to be enjoyed. Until I run out of pens. www.goalmanager.co.uk

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INSIGH T

United by art – and brain injury

Affiong Day

Photographer Leon Foggitt tells NR Times about his experience capturing artists with traumatic brain injuries.

Mark Taylor

Five years ago photographer Leon Foggitt spotted an article about a collective of artists who’d survived a brain injury; and the charity which enabled them to learn to be artists.

He was intrigued.

He got in touch with Submit to Love studios, a programme at brain injury charity Headway East London, and they invited him in to visit.

The programme supports artists in developing their skills and building a portfolio of work.

Foggitt didn’t have any experience of brain injury, but he was into BMX, so he was vaguely aware of the prevalence of brain injuries in the sport.

“From that point, it was a learning experience,” he says. “A lot of these things, you get into without knowing too much about it first.”

Foggitt is a portrait photographer, and he’s especially interested in groups of people who are perhaps considered a

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bit different from those conforming to societal norms.

On his first visit, he got on well with the people there and the staff. He knew straight away he wanted to take some portraits of the people he’d met.

“The studio struck me as a positive place – it had a good atmosphere about it.”

He set up a little photo studio within their studio, and staff explained to the group what Foggitt was doing, and asked if anyone wanted to take part.

“Anyone who was interested came in front of the camera, I spoke to them, directed them a bit, explained what I needed and took their picture – the same process I normally use with portraits,” he says.

Foggitt always finds that some people are more comfortable in front of the camera than others.

“Some people find it easy, for others, it’s a big thing.”

Foggitt went through his photos to select the ones he

INS IG HT

He knew straight away that he wanted to take some portraits of the people he met

Tirzah Mileham

Diana Takyi

Terry Bruce

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Billy Mann

Chris Miller

Tony Brooks

With portraiture, you go through all the pictures trying to find a moment that feels quieter, where there’s something going on.

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INS IG HT

wanted to use. With portraiture, you go through all the pictures trying to find a moment that feels quieter, where there’s something going on there,” he says.

“Essentially, I look for a picture where it doesn’t necessarily look like they’re posing for the camera, it’s a moment where they let their guard down, or they’ve opened up a bit – it gives the picture something about it.”

The studio asked Foggitt to come back, and commissioned him to do some more portraits, with the aim of them going in an exhibition at the Autograph gallery in London.

He photographed everyone in front of a blank background, so it would draw more attention to the subject.

Marcus Mann

“They liked the portraits I did last time. They’re going to have an exhibition and they thought it would help to add faces to give context to their work,” Foggitt says.

Foggitt enjoyed going back to the studio – he could see how going to the studio was a big, positive part of people’s lives.

And he took a lot away from the experience.

“It makes you aware,” he says.

“Having a brain injury can affect you in so many ways. I learnt that it’s so complicated, and depending on which part of the brain gets injured depends on how it affects you.”

He met some people who, he says, if he didn’t know had a brain injury, he wouldn’t have guessed they did.

“I was chatting to some of the staff about this and they said that you might not know from talking to someone that they had a brain injury, but then that person might not be able to find their way home afterwards.”

While he didn’t get to know the people in the studio really well, he did get to spend some time with them.

He says it was ‘eye-opening’ to see people dealing with their injuries.

“The majority of people I talked to in the studio were really positive. They’d come to understand whatever had happened to them as a positive thing because it changed their life in ways that they think needed to happen,” he says.

“As times, it was humbling, because I was talking to people who’d been through a huge trauma in life that had completely changed them, and they’d got to a point where they’d accepted it.”

He says his subjects all had a good sense of humour and were very open to what Foggitt was doing; which was important, because the most important thing for Foggitt, in order to do a good job, was building a connection with everyone in the studio.

“It’s really important to have a connection with people and a level of trust. Every photographer is different, and some don’t want to make a connection with people – but I need to have a certain level of connection and trust, and empathy.“ “When I’m looking through my pictures, there’s an intimacy to it, people put themselves in a vulnerable place – I like the pictures where you can see a shared humanity, where there’s a bit of them that you recognise in yourself.”

Foggitt says he found a middle ground, where he didn’t know his subjects really well, but they weren’t total strangers, either.

“Sometimes, that connection can be fleeting. Some photographers want to live with people, spend time with them and really get to know them.

“I’m not like that. I like to go somewhere and then leave it. During that time of being there, you can have that connection.”

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EVENTS

Dates for your diary To list your event in NR Times contact editor@aspectpublishing.co.uk.

Please check with contacts beforehand that arrangements haven’t changed.

Events organisers are also asked to notify us at the above address of any changes or cancellations.

JAN 21 25

Introduction to Motivational Interviewing in Brain Injury Rehabilitation Online interactive training Motivational Interviewing is an effective, evidence based and deeply client centred approach aimed at helping people achieve positive behaviour change. This course is suitable for any practitioner working in the brain injury field who would like to learn about motivational interviewing and how it can be integrated into brain injury rehabilitation. This is a “live” small-group training experience aimed at people who are new to motivational interviewing. At this level, participants learn about MI (e.g. key concepts), reflect on its application for their practice and gain some practical understanding of how to apply it.

This course provides 6 CPD points consists of 4 x weekly sessions (4 x 2 hours)(25th Jan - 28th Feb). The focus is on fun, interactive learning in a safe and supported atmosphere. The learning content is equivalent to a 1-Day introductory workshop in motivational interviewing.

See www.abisolutions.org.uk for full details.

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FEB 21

3 to 5 / 11 to 12 SMART Assessor Online Training The SMART (Sensory Modality & Rehabilitation Technique) is a standardised investigative and assessment tool specially designed for patients with prolonged disorders of consciousness (PDoC). SMART is recommended as a tool of choice in the Royal College of Physicians (RCP) Guidelines 2020. This four-and-a-half-day online training course is for senior neurological clinicians (AHPs, clinical psychologists, nurses and doctors) and will enable the delegate to meet the person specification for PDoC assessors as outlined in the RCP guidelines.

The delegate will further develop their skills and knowledge of PDoC and the SMART investigative process, gain skills in the analysis of the investigative process, identifying where the client is currently placed on the diagnostic spectrum and possess the skills to create a bespoke intervention plan.

Days two, three and four will require the delegate to complete 30-minute learning tasks, preparatory reading and video views.

Following completion of the online training, the delegate will be required to complete one clinical SMART assessment, with full support from a mentor, in order to complete the SMART accreditation process.

The SMART Manual, Technique Guidebook and all forms are provided free of charge.

Re-accreditation is required every four years.

This course will be provided with full additional support from a dedicated SMART mentor throughout the process

and to accreditation. The lead facilitators are Helen Gill and Dr Karen Elliott, SMART Developers & Consultants at the Royal Hospital for Neuro-disability.

The event runs on Wednesday 3 – Friday 5 February and Thursday 11 – Friday 12 February 2021.

Cost: £730 (early bird rate £695 until 31 December 2020) Website: https://www.rhn.org.uk/ events/smart-assessor-online-training/

FEB 21

25

World Congress for the Management of Post-Stroke Spasticity Okinawa, Japan www.wcpss2020.com

MAR 21

3

14th World Congress on Brain Injury Dublin, Ireland www.ibia2021.org

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