27 minute read
THE FUTURE OF BABICM
CASE MANAGEMENT
BABICM - rising to the post-pandemic challenges and opportunities in case management
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Vicki Gilman takes up the post of chair of the British Association of Brain Injury & Complex Case Management (BABICM) at a hugely important time as case management moves into a new post-pandemic chapter, following an unprecedented period where case managers rose to the diverse challenges presented by COVID-19 and helped to create a new future.
One where technology and virtual communication will feature like never before; where the need to work in collaboration has never been greater; and where the creation of the Institute of Registered Case Managers (IRCM) will enable registration of case managers for the first time. While undoubtedly an exciting time with huge potential for case management, the challenges - and opportunities - for BABICM, as it too builds for the future on the foundations of its 25 years of expertise, are plenty. “Becoming chair was something that was first suggested to me about three years ago, and at that time I had no idea, as no-one did, that we would all see such huge change in our lives,” Vicki tells NR Times. “There were several things in the back of my mind then that I thought might be key themes - some of them remain the same despite what has happened since, although by no means all of them. I think a lot has been learned over the past 18 months that I don’t think we will go back from. So, in many ways, this marks a fresh start. “I’m immensely proud of how the whole case management sector responded, how we stepped up to the challenges and with such speed. Case managers are used to looking at complex scenarios in unique circumstances and working to find ways forward within the context of each case, The pandemic served up additional challenges which prompted a lot of innovation and different and new thinking, with plenty of opportunities. “As ever in case management we have taken the learning from everything we do, but this time case managers – along with everyone else - were juggling the unique changes in their own lives such as homeschooling children and supporting friends, neighbours and family members whilst continuing with their highly complex and confidential work to support each individual case by case.” Vicki, managing director of Social Return Case Management, takes over the BABICM chair from Angela
CASE MANAGEMENT
Kerr, who is now chair of the IRCM. BABICM, as a founding member, will continue to play a central role in the ongoing development of the body, which hopes to secure accreditation from the Professional Standards Authority (PSA) in the near future. An experienced case manager, health entrepreneur and clinical specialist neurophysiotherapist, Vicki spent six years on the BABICM Council, returning last year for a preparatory period before taking the chair. Building on her experience of specialist rehabilitation, expert witness work and case management and being part of BABICM, while taking inspiration from the events of the past 18 months and impending future changes, Vicki has identified a number of priorities to address during her time at the helm.
Equity and belonging “I have starting educating myself to a greater degree and have had a lot of conversations with people who know a lot more than me about equality, diversity and inclusion., she says. This is actually quite challenging and I don’t personally know enough yet. I do know that both the organisation and I need to do more. As I go on my journey, it is my aim to find allies and to bring other people into learning more with me. Together we can make BABICM better place.” “It follows that our increasing membership means we have greater diversity, and it is not enough to say ‘We don’t discriminate’. Vicki says equity and belonging must be sentiments which underpin BABICM. “It is a really important to ensure a greater understanding is threaded through the work of BABICM.” "For me, equity means more than equality, and we want to help people feel they belong here. It’s not enough just to say these words."
Collaboration “We need to strengthen links we already have and collaborate with other organisations who are important to our members through the work they do,” says Vicki. “Angela has done an amazing job to strengthen and move the organisation forward, of identifying organisations and allies we should be working in collaboration with and creating links with people at the right level - organisations such as the CQC, Court of Protection, UKABIF, some education establishments, to name but a few.
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“There are lots of ways we can deepen and develop on that, and as we come out of the pandemic there will be more opportunities. Zoom calls are really time-saving and effective, but hopefully we will also have the option to do things in person again going forward.”
The future as a profession with registration One of the most significant changes in case management, the creation of the Institute of Registered Case Managers (IRCM), is set to professionalise and regulate case managers in a sector-changing move. “We will continue to support the goals and development of the IRCM, it is by no means done and we need to continue the work here,” says Vicki. “We are fully supportive of the direction of travel and fully endorse registration for case managers. This is a way for the public to be protected specifically in the realm of case management and for case managers to be able to demonstrate that.”
Training and learning “I want to continue the development of the high-quality learning and training opportunities available to our membership, but also to those outside,” she says. “We aim to keep it very relevant to current clinical and professional needs, keeping ahead of the curve and making sure that what we are offering is of the highest quality. As professionals working with complex cases, I can only see that need developing further. “In the last few years BABICM has really showed its strength as the leading provider of education and training for case managers working with complex cases. The feedback we’ve received for our courses has been tremendous and that has continued even during the pandemic. Training will remain key and grow in importance.”
Research “I’m very keen to increase the involvement of BABICM and its membership in research around case management related issues. I want us to lead the way in with research into evidence-based practice for people with complex needs,” says Vicki. BABICM has recently been involved in a number of research projects, working alongside the University of Plymouth. In yet to be published findings, the team has studied how case managers and clients alike have adapted to the pandemic. “There is research out there which supports the work of case management, but we are taking greater responsibility to add to that evidence base and that is something I foresee will increase and needs our members to be involved in, she says. “This will of course add even further to our library of resources to support the work of case managers.”
Providing useful resources to members “I see us to stepping up in provision of information to assist across our membership within legal, clinical and professional aspects of their work,” says Vicki. “Those involved in the case management of complexity and those working with case managers need resources that are tailored to their needs. “We already do this in many ways via our website with recorded webinar content, upcoming training and development events, publishing our standards and competencies and signposting and links to other sources of support regular bulletins. Our website is proving a very useful resource library which is seeing growing traffic, as it assists our members and others. “As our members apply for registration with the IRCM there will be an even greater requirement to demonstrate what case managers are doing and whether they are meeting the standards, so we need to continue to build relevant resources to support this need.”
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MATRIX Neurological provides practical help and vital support to children, young people and their families who are living with the effects of an acquired brain injury.
Based in Middlesbrough and serving communities across the Tees Valley, South Durham and North Yorkshire, MATRIX Neurological is a lived experience led, registered charity, established by people that have first-hand experience of childhood acquired brain injury. Founded in 2014 by the mother of a young person who sustained a severe traumatic brain injury, Jan Rock knows all too well what families have experienced. That personal experience means they have a real understanding of acquired brain injuries and the complex ongoing effect it has on learning and everyday life; such as the difficult adjustment back into 'normal life’; the impact on every family unit; the negative effect it has on a child’s academic studies and future employment prospects; and the long-term negative health effects that result from a lack of understanding; and in-effective and uncoordinated support services. In 2010 Jan’s son sustained severe and complex polytrauma injuries that medical professionals considered to be unsurviveable. Incredibly, he did survive and following the standard physiotherapy and occupational therapy focussing on physical re-ablement, provided by the NHS, she realised this fell far short of what was needed; so, she and her husband researched and managed his ongoing rehabilitation needs and created their own rehabilitation interventions. She has been rapidly expanding her knowledge and understanding of acquired brain injury in children and young people ever since. After hearing Jan’s story, both families and medical professionals asked her to help other child brain injury families. In 2014 Matrix Neurological was founded with a paediatric consultant and another third sector colleague. Initially MATRIX provided Family Support for parents and carers because as one parent stated: “Basically, when you leave hospital, you receive very little information about your child. If you are lucky, you might receive some generic acquired brain injury information. I want to know about my child, not someone else’s! You are on your own and it’s a very stressful time. Education and social care professionals expect you to tell them what your child needs. How can you do that when you don’t even understand what has happened inside your own child’s head because nobody has explained it to you?”. Families also say that ‘support’ has a wide range of meanings to different people and organisations. Some think it’s about simply giving them a leaflet or the odd phone call. Many parents are unhappy with current provision; unsuitable mainstream referral pathways; infrequent appointments; and even a lack of understanding, by professionals, of the cognitive, emotional and behavioural impacts of brain injury, are issues frequently highlighted.
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In the absence of any other meaningful support, Families very quickly started asking MATRIX to support their children too. At the same time, other emerging research reports highlighted some shocking statistics and the prevalence of traumatic brain injury in young offenders within the secure estate and homelessness. Analysis shows that over 90% of diagnosed brain injuries are discharged from Accident and Emergency Departments, with no follow up. MATRIX therefore wanted to provide services that made ‘a real difference’ to people, rather than just ‘signpost’ or ‘tick a box’, following Jan’s own experience. Research also demonstrates that far more children and young people are left unsupported because their injuries were not caused by a road traffic accident, where a legal claim can be made. Jan explained “a whole market-place has emerged to support insurance claim cases, but as in our son’s case, there was nobody to sue, so we received no support. Far more families find themselves in the same position as us, and when they live in deprived communities, the outcomes for these children and their families are very poor. As parents who live with acquired brain injury, we know it continues to affect a child’s life, long after medical professionals have discharged them. Families need support with ‘real life’ from people who understand the needs of their child, as opposed to those with only a clinical perspective. Families are also becoming increasingly angry that it always seems to be professionals who take the lead and make recommendations about what they need. A recurring theme is emerging: “What would they know, they don’t live with it. They just walk away at the end of the day and go back to their own lives.” In response to the requests of families, in 2019 MATRIX established a Case Management Service with Big Lottery Funding, enabling the team to assess, navigate and advocate for the needs of these forgotten children and young people who would otherwise receive nothing. They support families with issues ranging from debt, domestic abuse; marital problems; family relationships; housing; mental health, welfare benefits, Education Health & Care Plans; Education and Social Care issues. Helping these families takes a concerted sustained effort. During the COVID19 lockdowns, MATRIX rapidly adapted services and continued to support children, young people and their families, when many others completely shut down service delivery. In 2019 MATRIX were awarded BBC Children in Need funding to develop a dedicated service for brain injured children and young people. Then in 2020 with additional funding from BBC Children in Need and Youth Futures, this service was expanded to include some Specialist SEN Staff, who combine SEN support with targeted cognitive stimulation interventions. Jan explained, “even though our staff received specialist cognitive stimulation training, we realised that what worked for adults was not appropriate for children and their ongoing development needs. We know there are lots of different factors to consider; so we created our own resources that form part of a comprehensive rehabilitation programme. This can be readily adapted to meet assessed need, age and functional age”. She said, “we don’t use standardised neuropsychological testing, because we are not trained to use it. Also, research is showing that standardised tests are not sensitive enough to identify the hidden needs of brain injured children; nor do teaching professionals understand the results. This is evident as so many of the kids we work with have struggled at school, even with SEN support. Their needs are far more complex than where they sit in a
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classroom or ‘reasonable adjustments’ being made within schools, which seems to have been the mantra for the last 20 years! Had this approach worked the homeless and prison statistics wouldn’t be so bad! These kids leave school with the same cognitive impairments they returned to school with post injury; this then affects further academic study and future employment opportunities.” Jan highlighted; “when a young person tells us they wished they had died when they had their brain injury”, or that “nobody understands them, wants them or cares about them”, tells us there is something very wrong with current approaches. Over a period of 10 years, some of these kids have seen 20 to 30 professionals, who simply assess and re-assess them. Young people are angry that nobody has actually done anything to help them. To us that’s simply not good enough because opportunities are being wasted and young lives are being ruined! When medical professionals try to advise on educational needs for these children and young people, this can often lead to further issues. Senior Teaching staff tell us, “We are not medical professionals and we don’t understand all of these neurological disabilities and the very different needs of these kids. We don’t know what it all means for their education”. A head teacher stated, “I don’t even fully understand neuro-psychological reports. They are not very clear. The work MATRIX does, makes it understandable”. MATRIX agrees with them! It is their job to educate children; not rehabilitate them and understand confusing neuropsychological terms. Without in-depth knowledge of both the child or young person, what has changed since the injury, and a complete understanding of all the hidden and complex effects of ABI’s, many professionals, including Key Workers, will still struggle to provide appropriate support for acquired brain injury. To evidence the impact their support is having, MATRIX have sourced an assessment programme that is more suited to the needs of the kids they work with, and examines a whole range of cognitive skills in more depth. The model is still based on standard neuropsychological testing, but tests, analyses and scores up to 23 key skills across five cognitive domains, that are essential for life, learning and future employment. It also measures their physical, psychological and social wellbeing which are important issues for young people. Using this assessment model as a baseline, the Team prioritise and target their interventions as part of a detailed support plan which is reviewed every three months, integrating with, rather than duplicating, work being done in school. Each child receives one to two hours of individualised 1-1 support every week, together with a range of homework activities. The aim is to give these children better longterm outcomes and brighter futures. MATRIX take a long-term view and as these results show, it appears to be working!
Our Interim Outcomes are shown on the following pages.
Severe traumatic brain injury at aged 14 with midline shift *Interventions commenced three years post brain injury
800 600 400 200 0
Improvement from baseline assessment in 2019 in two years
2019 2020 2021
Impact: When this young person returned to school post injury, they could only attend for two hours per week, focussing on one subject – Basic Maths. By 2021 they had completed a City & Guilds qualification Level 1&2 and are about to commence Level 3.
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A-Traumatic brain injury at aged 4 from Chemotherapy treatment *Interventions commenced therapy 4 years post A-TBI Young person with three TBI’s aged 2, 12 + 13 *Interventions commenced 10 years post last TBI
500 400 300 200 100 0
Improvement by Domain
REASONING MEMORY ATTENTION 2019 2020 2021
Impact: During this last year the focus of our support has been on the four key skills relating to Attention. We also learned this primary aged child is having significant sensory issues which create behavioural problems. Whilst the graph shows that this child is still functioning below their peers in all areas, Memory and Attention have both improved significantly. During the same period, the child made significant improvements in Maths and moved from an SEN maths class into a mainstream maths class. Teachers stated they were delighted with the progress made in 12 months.
19-year-old – 10 years post Stroke
Baseline Assessment
800 600 400 200 0
REASONING MEMORY ATTENTION COORDINATION PERCEPTION
This young person has received very little meaningful and knowledgeable help and support from statutory services. Despite receiving SEN support at school, they didn’t have an EHC Plan and left with very poor exam results. Attending college has failed and social care want to place them in a day unit facility. This lack of understanding has had a significant negative impact on their mental health and self-esteem. In addition, this young person received very little intervention from health services, to address their physical re-ablement, aphasia and other communication deficits. This is a real-life example of a brain injured child being failed under the Children Act for over 10 years by statutory services, despite being under the care of 25-30 multi-agency professionals! Our interventions prioritised developing self-confidence and self-esteem. In the short time we have been working with this young person, they have read a book for the first time in 10 years; speech has improved to the extent that they can formulate 7-to-10-word sentences and can now write the alphabet and send simple text messages to friends and family. The next steps of our support plan will focus on developing skills relating to Attention.
600 Improvement from Baseline Assessment in 12 months
500 400 300 200 100 0 REASONING MEMORY ATTENTION COORDINATION PERCEPTION
Score/800 2019 Score/800 2020
Impact: To date, we are seeing evidence of improved psychological wellbeing and self-confidence.
22-year-old – 13 years post Stroke
400 300 200 100 0 Baseline Assessment
REASONING MEMORY ATTENTION COORDINATION PERCEPTION
MATRIX take a holistic co-ordinated approach, creating an individual profile for each child and young person we work with. This young person suffered a stroke in primary school. They were bullied and socially excluded in mainstream school for their SEN needs. They attended college with SEN Support and intensive 1-1 Teaching intervention. This person left college with a Level 3 qualification. They could gain employment but could not sustain employment due to their cognitive difficulties. They had been bullied at work due to their severe memory problems. The individual had been treated for mental health issues during adolescence, but they told us this did not work because they did not understand. Also, the individual themselves, a) did not understand what had happened inside their own head; b) how this had affected them; and c) the impact this was having on their life. As such they couldn’t tell anyone else. Then combined with a lack of understanding within the family; they were self-harming. This is a typical example of a persons needs not being understood and receiving the wrong treatment. Despite being seen by almost 30 professionals in statutory services, they have been failed under The Children Act. Our support plan is focussing on their immediate needs and will then focus on development of the seven key skills relating to Memory.
INPATIENT REHAB
Delivering life changing rehab – the step by step approach taken at Askham
From meeting people at their most vulnerable, facing an uncertain future after devastating injury or illness, Askham Rehab has a stellar track record in supporting them to achieve positive life-changing outcomes.
From the very start of their rehabilitation journey, the Askham team unite behind each resident, helping them to achieve their personal goals and look to a more positive future than the one they believed lay ahead when they arrived. Such is the reputation of Askham, based near Doddington, Cambridgeshire, that residents come from across the nation, with the compelling combination of person-centred rehabilitation - which includes hydrotherapy and the latest in robotic innovation - helping to deliver significant results, often within a 12week placement. And at the heart of the service Askham delivers is its team. From the care, nursing and therapy teams, through to the housekeepers and facilities support, everyone has a role in ensuring the Askham journey is the best it can be for each and every resident. “What we do here starts with one person and ends with one person (the resident), but it goes so far beyond that during their time with us. The team we have here is incredible and we couldn’t achieve what we do without them,” says Luke Cook, head of rehab and nursing at Askham Rehab. “Our care team have the most time with the residents, more eyes and hands on our residents than anyone else, the role of carer is impossible to define and they do one million roles rolled into one. They support with; personal care, mobilisation, therapy, personal issues, they holistically support our residents with absolutely everything (and more). “Often they will be the first and last person a resident will talk to most days. Care teams don’t get mentioned as much as they should, and I don’t think even they realise how much their involvement influences everything else. From sharing past experiences, to being about the encourage participation in certain activities as of the relationships formed, through to making the ‘best cup of tea’ - it’s sometimes the little things that have a really big impact. “Our nursing team, with the support they provide with pain management, corresponding with MDTs and enhanced levels of care, alongside our therapy team - so the SLTs, OTs, physios and neuropsychologist - are crucial in the support, leadership and expertise they give our residents. “But around that is our support services. We have a seven-acre tranquil environment, but it wouldn’t be that if not for the facilities team. If the boilers didn’t work and
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the lightbulbs weren’t changed, we wouldn’t function as we do. Likewise with our housekeepers, without them the service doesn’t work - and after 18 months where infection control was absolutely paramount, without them, we couldn’t have done the job during the pandemic we have done. “Importantly, these are very relatable people, someone for our residents to have ‘normal’ or ’non-clinical’ conversations with. We know our residents really value that. “Our team all support each other, they very much rely on each other, their roles are interlinked and we all work together to make sure everything we do is as meaningful as possible for the residents. I’m so proud of the role they all play.” While many people may not have heard of Askham until such time they need its specialist support, its dedication to securing the best possible outcomes means its work begins as soon as they arrive – with discharge already planned for even before that time. “The sad truth is that people don’t know about us until they need us. People come from far and wide, because of our nursing-led support as well as the rehabilitation we provide. We are very niche and with a strong reputation, which is increasingly growing with the outstanding work the team consistently delivers” says Luke. “It all starts with an illness or injury, a life-changing event which, after discharge from hospitalisation, will enable us to work with that individual and support them. We make sure we have all the information we need to commence the pathway and start to create what they want the outcomes to be and what that journey will look like. “The discharge planning starts as soon as we do the pre-admission assessment, and what that may look like - whether they will go home, if their home needs to be adapted, or whether they will need longer-term care. “Residents have a finite amount of time here, so it’s important we commence their plan at the earliest opportunity, which is then reviewed after eight weeks, but again it’s very personalised and there is no set timeframe for recovery. You could have two people of the same age with a brain injury, but it could impact them very, very differently. It is all about the individual and how they progress during their time with us.” Upon transition to Askham, each resident is assessed by its in-house therapy team - comprising speech and language therapy, physiotherapy, occupational therapy and neuropsychiatry - to set out the goals during their time there, with support given on a daily basis in making them possible. “It can sometimes be a challenging conversation to talk about what is realistic to achieve,” says Luke. “We want to give people hope, but not false hope. They will have as much time, support and therapy as they need, which is tailor-made to help them achieve the results they want. “But without the resident and their desire to achieve,
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we wouldn’t be able to make the progress. We offer the tools and they do the work. There aren’t always good days in rehab, a patient could regress or feel they’ve taken steps backwards, but they are always outweighed by the positives.” To increase its support for residents nearing their time at Askham, and in preparation for their return to home, four apartments have been created on site to help the transition, which also offer the opportunity for residents to be joined by loved ones. “We make the flats as much like home as we can so we aren’t setting people up to fail,” says Luke. “If someone is going to succeed at home, they need to experience what it will be like, so we try and make it as similar and user-friendly as we can - the benches in the kitchen are the same height as they would be back at home, for example, but it’s in a supported safe environment. “We have one resident at present who is living there with her husband, she’s someone not from a million miles away but this is definitely a step in the right direction for her. She has been there with her partner for two months and this is an invaluable opportunity for them both to see what life will be like beyond Askham. “Having a loved one on site with a resident is wonderful, and it’s another string to our bow to be able to offer this.” As a small and very close community, inevitably many of Askham’s former residents keep in touch with the team post-discharge, such is the bonds that are routinely created during a person’s time there. Indeed, Askham has recently named its first ambassadors, four former residents who are now Experts by Experience, who will share their experience with current residents to help inspire them through what may seem a long and difficult journey. “By the time they leave, some people see us as an extension to their family. After such an experience, you cannot help but form a positive relationship with our team,” says Luke. “It is wonderful for our staff to see where that person is now, and we hope to go back to being as open as we were in 2018 at some point, so we can welcome many more former residents back. “Some of our residents have had outstanding outcomes and some are now our first Experts by Experience, who are invited back in to share their stories directly. It is probably the most empathised conversation you could imagine, hearing from someone who has lived that reality. “Every lesson not learned is a lesson lost, and those who have lived it are now sharing it, which is for the benefit of everyone.”
COMMUNITY REHAB
A vocational rehabilitation programme in the North East aimed at getting those living with a brain injury back into working life has been resurrected by a community charity.
Headway Tyneside worked closely with the NHS and fellow charities, Headway County Durham and Headway Darlington & District, to ensure the programme could continue following last year’s closure of Newcastle-based providers, Momentum Skills.
‘Headway to Work’ is the newly-branded service which will support around 14 people per year living in Durham and Darlington. Each participant will be individually assessed by therapists to gain an understanding of their difficulties, enabling the team to offer personalised support throughout the programme. The training focuses on improving self-management skills such as self-care, goal setting, productivity, sleep and fatigue management, as well as technical skills such as IT and literacy. The final phase of the programme will involve voluntary placements for participants to ensure they feel comfortable, confident and have the relevant vocational skills before seeking paid employment. In the future, the group hopes to deliver the ‘Headway to Work’ programme across more parts of the North East, within Gateshead, Newcastle, South and North Tyneside. Alistair McDonald, chairman at Headway Tyneside, explains: “We all know how incredibly difficult the past 18 months have been. Those with disabilities or long-term health conditions have been especially vulnerable. The Momentum programme was well received and helped lots of individuals with a brain injury plan a route into employment, education or training and it’s fantastic that we can continue to deliver this type of service. “The service will now be delivered closer to where participants live rather than having to travel to Tyneside. Less travel and being in a more familiar place should help people feel less fatigued and provide an opportunity to socialise and development friendships with other learners local to them. “Currently, we have around 10 staff, including Julie Meighan our clinical service development manager, who will oversee training sessions run by a neuropsychologist and job coach. Julie worked as a specialist brain injury occupational therapist for many years so has the clinical knowledge and experience this programme needs. “Our fantastic team of committed volunteers will support the delivery of this vital work to those who want to prepare for a return to work or plan a route into employment, training or education.” Headway Tyneside is an independent charity providing support services to brain injury survivors and their families. In recent years, the board of trustees has developed a strategy to grow the scale and scope of services to provide more diverse and specialist services to their members. For information, contact Julie Meighan, clinical service development manager, on headwaytowork@headwaytyneside.com or 07572 041789
