Brain injury
News and views
‘It’s priceless to have
your voice heard as a patient’
Through co-production, patients and families work jointly with their clinical team
to determine goals and devise means of achieving them.
Through research, St Andrew’s Healthcare has established just how vital this is to the rehabilitation process - and what more can be done to make co-production even more patient-centric. NR Times learns more
Co-production is not a new term in rehabilitation. But while it is familiar, how widely is it used?
In many settings, while a patient will be involved in some, or even several, aspects of their care and rehab, it is still far from being ‘co produced’ with the patient’s voice - or that of their family - not being heard as it should be.
But for St Andrew’s Healthcare, co-production is something that is keenly felt and understood. By working side-by-side with patients and families, meaningful goals can be set based around personal aspirations, which can lead to better engagement and positive outcomes.
As a provider, which supports with a range of neurological conditions - delivering neuro-rehabilitation to help patients rebuild their lives after brain injury through to bespoke support for those living with Huntington’s disease and dementia - the need for person-centred care, involving the patient and family at every possible opportunity, is a vital part of its care model.
And that commitment is something that is only increasing, with research from Senior Occupational Therapist, Fraser Scatterty whose research into the impact of co-production in brain injury has revealed its crucial importance.
“I think it's probably priceless to have your voice heard as a patient, and that’s why this matters,” he says.
“Co-production is such an important thing to do, and for your patients to be involved in goal-setting and in being able to read and understand their care plans.
“This can lead to better outcomes and better engagement, which ultimately can only be in the patients’ best interests.”
Co-production in practice
By its very definition, co-production revolves around working jointly to create something, which is vital in the delivery of person-centred care.
But getting to the root of what that should mean has been the mission of Fraser through his MSc dissertation, geared around the work at St Andrew’s and based on the feedback of fellow occupational therapists (OTs) in the neuro team.
“I think, generally, everyone agreed it was related to getting more of the patient's voice and being more patient goal directed, rather than therapist goal directed,” he tells NR Times.
“Basically, you create your care plans around what's most important to the patient, getting patient and family advocacy, establishing your treatment programmes, in a more equal partnership rather than it being a traditional medical model.
“From the literature I've read around co-production, it looks at the outcomes as well - when people are working towards their own set goals, motivation is more likely to be there. And then we get better engagement and better outcomes.”
The value of being able to set goals is at the heart of co-production, which the patient can then be guided and supported to achieve.
“We’ll ask them ‘What are your goals’? Typically it’s that they want to go home, so it’s about breaking that down into how we are going to do this,” says Fraser.
“What do you need to do? What do we need to do? What can we be working on together?
“We might have a patient who goes to the art studio once a week, but when you break that down and analyse why, it’s because they want to make presents for their family to maintain the links with them and continue to feel involved. So getting to the heart of that makes everything a lot more clear and person-driven.”
Fraser believes language used in care plans also lies at the heart of ensuring a patient can truly be involved in co-production.
“You’ll have a care plan that says ‘Go to the art studio once a week’ but isn’t capturing why. We’re probably using more global language that fits into the FIM+FAM assessment criteria,” he says.
“I think often care plans aren’t really suitable for our patients, they couldn’t really understand them. And it’s really important that we do that, and put our co-production values into achieving this.
“We use the FIM+FAM outcome measure, but that means nothing to our patients. I have never heard a patient say ‘I’m doing level three on cooking, I’d love to be level five’. That just
doesn’t happen.
“Co-producing is about getting them to understand and develop a goal around what matters to them. I was working with a lady a couple of weeks ago and she wants to look after her children, she wants to be able to be safe in the kitchen. That's a very personal goal for her because it's about looking after her children, it’s not about FIM+FAM level three or four.
“Neither do you want a 17-page care plan a patient can’t understand - you want something that is accessible to them, that they can read and know what we are working with them to achieve. Language is very important in doing that."
As well as personal goals, global goals can also be used to positive effect.
“You can have maybe four of five goals, which are very valuable tools - ‘are you happy with your sleeping pattern?’ for example,”
says Fraser.
“Patients are never going to come forward with concerns about getting better sleep, but when you raise it and ask about the quality of things, it helps them to recognise that maybe improvement can be made. So they can set a personal goal around that, which we can then work towards.”
However, there are some domains in which clinicians should continue to lead, to protect the best interests of the patients, says Fraser.
“In reality, we sit down, we talk to patients, we get their views - but we always have to balance that against best interests and a duty of care,” he says.
“For example, we maybe have a team goal of somebody having a shower twice a week to maintain their skin integrity and their hygiene. But they might not recognise that as a problem at all.
“Getting them to co-produce a care plan around showering is very difficult - but we will do this as far as possible.”
Co-production made even more person-centred
From Fraser’s research, co-production was identified as being a hugely valuable resource in brain injury rehabilitation at St Andrew’s - but one in which improvements can continue to be made.
With recommendations about the training of staff to secure a better understanding, and the improved accessibility of care plans, the willingness and agility of St Andrew’s to adopt new and improved working practices is seeing changes already being made.
“Ultimately, the whole point of the research is that we want to recognise areas where we could or should be doing things better and to improve our own practice - that’s for the benefit of everyone, and there is always more we can do,” says Fraser.
“I think working in a neuro setting, we work with our patients for long enough and work so closely with them that we do get a really, really good understanding of them and what is important to them.
“I think co-production is something that we do and we have done for a long time, but it maybe isn’t always recorded. The value of doing that is huge for the patient, in transferring that into almost a co-production formula, and that’s something we are already looking at.”
New care plans is something, which is also underway, making them more accessible and relevant than ever before to patients.
“One of the big things that came out of my research was around care plans. I think that’s definitely an area we can get our co-production values in a lot more,” says Fraser.
“It needs to be more ‘This is what I want, this is how I'm going to get it, and this is who's going to help me’. So very simple.
“And by doing it that way, we can make it more goal-driven for the patient.
“We are all goal-driven people as human beings, and if you’ve got your own goals and agenda, you’re going to work harder for it and be more engaged for longer.”
For staff too, the benefit of further training could in turn support patients and families to achieve their co-production goals.
“I think some training would be a really good idea, where we look at co-production in the care plans, the positive outcomes we achieve, what more we can do,” says Fraser.
“As neuro professionals, we do have a tacit understanding of our patients anyway, and that’s a very important point - but if we documented that more than we currently do, I think that would have a very positive impact.
“I know we’re looking to move forward with that, after what has been a very busy time I think we’re now getting some headspace to look at this and to involve our patients and their families in what we do even more.”
Richardson Care Restructures to Provide Seamless Care Pathway
Richardson Care has restructured its specialist services for adults with acquired brain injury or learning disabilities and complex needs to provide a seamless and flexible care pathway.
The Northampton-based care provider has six residential care homes and a long proven track record of delivering successful outcomes for service users. It remains an independent family business and Director Laura Richardson-Cheater explained the reasons for the restructure: “We have always placed the service user at the centre of their care and the business has evolved to deliver different types of rehabilitation and therapy. We realised that by making some small changes, we could redefine our services to make them clearer for commissioners and take the business forward to a higher level of excellence.
“With six residential care homes, we have the flexibility to provide a seamless rehabilitation pathway. This enables the individual to progress within the supportive environment of the Richardson Care family.”
The services are:
1. ABI assessment & complex diagnosis unit, The Coach House
2. ABI rehabilitation & transitional service, The Richardson Mews
3. Long-term community neuro-rehabilitation service for men, 144 Boughton Green Road
4. Transitional & long-term LD & complex needs service, 23 Duston Road
5. Long-term community LD & complex needs service, 2 & 8 Kingsthorpe Grove
Laura continues: "Our admissions policy has always been to place an individual in the home that is most appropriate – both for their needs and the needs of the existing residents. This restructure has formalised that process while retaining flexibility."
“We have over 30 years of experience in supporting people with acquired brain injury and complex needs and have found that they need an initial period of stability before we can fully assess their needs. The Coach House is the ideal environment for this because it is self-contained and secure. After this period the individual may stay in the Coach House or move to our transitional or long-term community rehabilitation services. We are also planning to provide high-input supported living accommodation for people with acquired brain injury or learning disabilities.”
Richardson Care combines a unique homely environment with a therapeutic regime devised by an experienced multi-disciplinary team of therapists. The focus on community is clear in
all of the homes where a wide range of activities are on offer. This supportive environment contributes to engagement in therapies with the ultimate goal of service users being able to live a happy and fulfilling life.
For more information call 01604 791266 or
visit www.richardsoncares.co.uk
The Fatigue Management Journal- supporting survivors through the effects of brain injury
Natalie Mackenzie, director of BIS Services, has created a journal to help manage, understand and deal with the effects of fatigue as a result of brain injury. Here, she explains why - and how its impact is being positively felt by survivors
‘We want to deliver those
life-changing moments’
Building on its success as an inpatient unit, Peartree House is now a rapidly-growing community care and neuro-rehab provider, supporting people with brain injury and neurological conditions across the country
to regain independence and quality of life.
NR Times learns more about its ethos, its focus on supporting people and how its specialism
in brain injury care is helping to change lives.
From meeting a need in the local community for specialist neuro-rehabilitation for adults of all ages has come a thriving specialist care provider delivering at-home support nationally, delivering often life-changing outcomes for clients.
Peartree House opened in 1996 in Southampton to help deliver an appropriate pathway for people with brain injury after being discharged from an acute setting.
Since then, the residential unit - under the leadership of managing director Remi Katsande - has grown to support people from a wide geographical area in their rehabilitation, including re-integration back into independent life.
But its most significant and ongoing expansion has been in its community care, with that part of the business continuing to grow strongly on a national basis, delivering at-home care packages to people with brain injury, neurological conditions and complex needs.
And the support it provides to clients, geared around maximising their independence, can deliver outcomes some thought may never be possible.
Such as for the man who had not been out of his home in 20 years, but now visits his local sea front for an ice cream with the support of his Peartree care team.
Or for the teenagers who benefit from Peartree’s vocational rehabilitation, to get them back into the workplace or education after brain injury.
“These are really life-changing moments, but what we do is all about promoting independence and promoting recovery,” says Caroline Watts, community services manager at Peartree.
“Every person we work with is so different, so every package of care is so different and so personalised. We build the package with the right staff, the right support plans, the right risk assessments around the person. It’s totally bespoke and about what is in the best interests of the client - and for us as a team, it’s hugely rewarding.”
Bespoke support for younger people
While clients are of all ages, Peartree’s origins in supporting young people continue to be a particular focus for the provider, with dedicated and bespoke care for that younger age bracket at a premium.
“Provision for younger adults with brain injuries or neuro conditions was a real challenge back when Peartree House opened, but we still hear some of the same things today. There can be a huge age difference in some settings, young people are being put into care homes where there is a very different clientele,” says Caroline, who is from a nursing background and was most recently a matron in a neuro-rehab service before joining Peartree.
“But with our community work, where possible, we want to keep them in their own homes with their parents of families, or get them back to college or work with our vocational rehabilitation.
“We have some really young patients with us at the minute, who are 18 and 19, and we really place focus on what is happening in their lives, what they will want to achieve. These are young people for whom getting their lives back is very important.
“Through our multi-disciplinary packages which help their recovery after being in hospital, we promote independence and can help them reach that stage where they are just a young person who has friends and goes to college. We can help them find normality again, that is a huge part of what we help with, the integration back into daily life.”
Inpatient neuro-rehab
Peartree House was established in 1996 to bring much-needed options to people needing a pathway back into the community and independent living after brain injury.
The 30-bed unit, in Bitterne, has an in-house multi-disciplinary team to deliver the whole spectrum of therapies to clients. Referrals come from across Hampshire,Dorset,Wiltshire and Sussex.
“We have the full MDT on site, so offer that real holistic, integrated approach. Often, providers who offer therapy don't have nursing expertise and inputs, which we do,” says Caroline.
“We have a really good mix of everything - we have psychology, speech and language therapists, physiotherapy, Occupational Therapy, as well as really highly skilled rehab assistants.
“For many of our clients, this is the first step on the journey towards getting back into the community and re-integration.
Peartree House is important in enabling early discharge from hospital, but also we have a role to play in terms of supporting early discharge from Peartree into the community. The flexibility we have here can be really important in the bespoke rehabilitation of each and every individual.”
Peartree House supports people on both rehabilitation and long-term complex care pathways, with dedicated work to enable them to live as independently as possible in the run-up to discharge.
“Once they reach a stage where they can move into the community, that is where our community team can come in, if necessary, and I think that’s the beauty of it,” says Caroline.
“We can continue that support in a setting where they are with their families with a therapist they already know, but having the inpatient unit as the backup also provides a safety net, in case we do need it for clients.”
The growth of community care
Building on the reputation of the Peartree House unit, its community arm, which delivers a wide range of specialist support - from 24-hour live-in care through to a minimum of six hours a day of care, bespoke therapy or both - is gaining a reputation for its specialism in its own right.
“There is a big focus on community care, especially post-COVID with people wanting to stay in their own homes, and the ability
to support early discharge from hospital,” says Caroline.
“There has always been a big need for that, but particularly since COVID. I remember that well from working on the acute side, but the need is only increasing. We provide an option for people to come out of hospital and into the community, where they are supported in a way that is very safe and holistic.”
And the MDT expertise which has been present in the inpatient setting also runs through its community care, with the whole range of therapies available to clients.
“We have all of the specialisms in our team, so we don’t need to outsource anything. We even have construction people in our team, in case any property adaptations are needed, we can
do that too,” says Caroline.
Expanding strongly nationally, the focus of its ongoing recruitment is on adding specialists in neurological care and neuro-rehabilitation to its team.
“Our team is skilled and experienced specifically in brain injury, whether that be challenging behaviour or the medical challenges that come with that. We have a real understanding of this, which is vital,” says Caroline.
“All of our staff our specifically trained and we offer very comprehensive induction and training in brain injury and other neuro conditions, to ensure we have the staff with the right skills and experience to support all of our clients with a range of challenges.
“We are committed to offering really high standards of care and boosting quality of life. Whether that is for those people who are thriving in their recovery, or for those who may not make a full recovery, we will do our utmost to ensure their quality of life.
“There is a gentleman who springs to mind who had a lot of care companies who weren’t specialists in brain injury, and maybe weren’t as understanding of his behaviour and needs, who in the last six months has left his house for the first time in 20 years to go to the sea front. That is because our team are committed to achieving the best possible quality of life they can.
“Will this man get better in terms of his recovery? Sadly not. But can we still really support their families and give back quality
of life and allow them to be a family again, and build trust and give reassurance? Yes, absolutely.
“And that is the importance of specialist care by specialists.”
The future
Going forward, recruitment is a priority as the business continues to grow, adding national resource to its community team, while maintaining the service delivered by Peartree House itself.
“There is absolutely the need for the inpatient unit, we have 30 beds and they are all full, and we are providing a specialist, intensive service to those people,” says Caroline.
“But there is a great demand for community-based care, so people can stay in their own homes and with their families. We are seeing the community service as the fastest-growing and biggest demand currently, but there's definitely a need for both.
“We are also looking at the possibility of having smaller, independent living flats that are appropriate for some of our clients, for example, some of the younger clients who may want to move out from their parents and experience some independent living, but need to do that in a supportive way.”
But for Peartree, alongside its ongoing growth, the focus will continue to be on achieving the life-changing outcomes for clients.
“We see some people who live in the community, who have lived with brain injury for years and we wish we had been able to support them sooner. The window for effective neuro-rehab is so small, but if you can work with people during that, you can achieve so much in a short space of time,” says Caroline.
“What we do is life-changing, and very rewarding for us as a team. Whether it is getting someone out for the first time in 20 years for an ice cream, or whether it's watching someone take their first steps or be able to sit on the floor and play with their child again, or say their first words or eat their first meal.
“There are all of these things that we take for granted day in, day out, but when we can help our clients achieve this is a massive step in their lives. It’s so rewarding to be part of that.”
Those working in the field of neuro-rehabilitation, I hope, will all share the understanding of the debilitating effects of fatigue post brain injury. Fatigue exacerbates the other effects of brain injury and can hit at any time, often without warning, and have long lasting effects.
A good night's sleep simply isn’t enough and clients simply do not have enough energy to tackle any of the tasks they need to complete, let alone even contemplate the things they WANT to do, often moved to the bottom of the pile, seen as a luxury.
No matter the severity of the injury, fatigue after ABI is nothing like any of us will have experienced before. The closest I think I have come myself is that post-newborn sleep deprived madness, where little makes sense, and decisions really shouldn’t be made!
For our clients, it is all encompassing and can come and sideswipe from nowhere. Even for the most educated and insightful. I’ve lost count of how many times it's been termed the “descending fog” to me. The complication of course in brain injury is the challenge of lack of insight and awareness, often leading to a boom or bust approach, a push back against the therapy team who seem to constantly bring up this issue of tiredness (this being the client perspective of course), and the apparent lack of motivation and initiation.
All too often though, fatigue management is overlooked, or at times, seen as a reason to cease input to allow ‘rest’ without attempts at an actual fatigue management plan.
Over the past few years, I’ve provided more and more tailored individual fatigue management programs, for new and existing clients, and issues around engagement and motivation due to fatigue had been coming up frequently in staff supervisions.
So, we increased internal training, for our rehabilitation assistants and simultaneously, I was being contacted directly from family members and online groups to provide training and education in a variety of formats. Although I’d always been interested in fatigue in particular, I now had an itch to develop something for those who aren’t able to use our services directly, or those who may fall below the threshold for statutory support but who desperately need help with understanding and managing their fatigue.
When I came across a planner designer who is part of a women in business coaching group that I am part of, I reached out to her to discuss my idea of creating the Fatigue Management Journal. We clicked straight away, as she had a personal friend who had sustained a TBI and she could see for herself the challenges he was facing.
She told me what I needed to do, gave me complete free rein on format and design, then she went off and worked her magic in terms of making it into a beautifully designed planner and taught me how to self-publish. It took a lot of edits to get it just right!
The biggest issue I had was making it make sense to a wide audience, with varying severity of brain injury (from mTBI to severe) and cognitive challenges, those with fluctuating fatigue, and individuals who could self-manage and maintain, but also creating a tool that others can use with their support team. I’m pleased to say that since its publication I’ve had a number of case managers, OTs and psychologists use it in their work with their clients, with extremely positive outcomes, and neurologists recommending in outpatient settings. I just love it when I come across another professional who tells me their client has the book!
This journal is designed as a self-management tool (or with support from family or teams) to enable individuals to manage fatigue experience in a controlled and measured manner, allowing self-monitoring skills to be initiated, as well as
self-identification of triggers and strategies that can reduce the impact on daily function.
The six-month journal is packed with strategies, reflections and trackers that is completed with the clients' own words and insights. So many times clients will become frustrated that
someone is telling them they are making improvements, but they can’t see them, or they simply feel that person is being kind, rather than honest.
There is great benefit to self-completion, even with support, and the fatigue tracker at the back of the book can show clear data of improvements over time. It also helps with the understanding that recovery is never linear, but that trends are generally upwards, over a prolonged period. This is not a six-month quick
fix, it is the start of the fatigue management journey. We all know there isn’t a quick fix for anything in neuro-rehabilitation.
In the journal individuals can:
> Learn how to identify triggers and vulnerabilities
> Implement the strategies of planning, pacing and prioritising
> Understand the impact of different environments and activities
> Monitor fatigue daily with a scoring scale
> Observe patterns of thoughts and mood
> Understand their own optimal recharge methods to manage their cognitive battery
> Learn to celebrate success
> Adjust and predict schedules more effectively
> Have an increased understanding of their own needs and Every brain injury is different, every recovery is unique. The journal allows clients that individual journey on their own terms.
There are some strategies that I know work successfully across the board, when they are implemented with guidance and prompts, which is what I provide throughout.
Monitoring the battery
We discuss the analogy of a battery discharge post injury, in a similar manner to the Spoonie Theory or the Pomodoro Method, often used in chronic fatigue and host to millions of social media hashtags. I wanted to add a new method in terms of battery management, as this has worked really effectively with a lot of my clients, and whilst the other methods are fantastic for their followers, brain injury really does add some unique challenges and adjustments.
I’m sure you’ve often found yourself seeing the ‘low battery’ alert come up on your mobile phone. If you don’t plug it in then, you notice that the speed becomes quite sluggish, things take longer to load and systems become a bit glitchy. If you have a more modern phone, you may have a low battery feature that automatically kicks in when it’s needed.
When this happens the background functions close down, and only the really important functions remain, on minimal function. Then you’re on ‘red’, and you know you don’t have long before the battery goes completely. You always think you have a bit longer to finish a message or a call. But you never do, it just shuts down.
No matter how many times it has happened, you always think you can squeeze our more than you actually do.
This is what is happening with fatigue. Before they can get in front of it that’s it, clients are on shutdown and then completely flat!
The journal teaches individuals how to monitor and manage that battery, so that they are less likely to suddenly find themselves depleted entirely, they can predict when the low battery is coming, what depletes them quickly and how to recharge quicker. Metacognitive skills are sprinkled all over the book.
Journaling works to create conscious awareness around patterns, behaviours and thoughts. By being more aware of triggers and patterns of how we cope, we can make moves to adjust and plan with them, rather than against them. I’ve had many people contact me to simply say that once that reframed the idea of just wanting fatigue to go away, and they learnt to ‘manage’ it, as they would another symptom, that they really started to feel more in control. Acknowledging the permanence of some level of fatigue is a great step for many in their rehabilitation journey.
"Acknowledging the permanence of some level of fatigue is a great step for many in their rehabilitation journey."
Educate to understand
There are a number of things to consider when embarking on understanding fatigue, and the first 50 or so pages of the book are all about fatigue education, teaching individuals the causes, examples of co-existing conditions that can impact, the effects of medication and environmental factors and more. I suggest that they take at least four weeks in the beginning to log and learn what their triggers and vulnerabilities are, what the look like, and probably most importantly, what they FEEL like. Those of us experienced in working within the complexities understand, but here the key is to find a balance between educating and overwhelming. It’s not designed to be an encyclopaedia after all.
There are pages at the back of the journal to jot down ideas and thoughts as well to refer back to in daily review. These spaces are also useful for brain dumps at any time of day., as well as a serving as a memory aid.
Learning what doesn’t work
Being aware of unhelpful responses to situations, or feelings of fatigue takes practice, and we don’t want to dwell too much long term on the negatives. In order to learn what does work, we first need to explore what doesn't
I encourage the readers to think of this stage as gaining an understanding as to what maintains the fatigue rather than what reduces it. The comment I hear most often is "I just power on through". It doesn’t work.
Individuals are encouraged to consider these responses that might not be acting in their best interests. Are they becoming short tempered? Are they withdrawing, cancelling social events? Are people around you telling them that they are doing things that they don't notice or cannot recognise in the moment? The journal allows this reflection and learning that can be noted, monitored, and most importantly referred back to when things may seem more challenging, due a number of factors.
The importance of smaller steps
Planning, prioritising and pacing form the basis of the planning. However here we take a long period to learn what this looks like and how to anticipate, which is really tricky. I encourage individuals to really pull back and start planning in time blocks, and sticking to them with timers and alerts, only increasing as fatigue improved. Education around chunking and other strategies is provided, as well as the benefits of much smaller short term attainable goals. We want to encourage task completion, not a sense of failure looking back at what hasn’t been achieved that day.
Prioritisation and family delegation is important in the process, and there are worksheets to enable the reader to take time with their unit to delegate tasks and responsibilities clearly, so that prioritisation can begin.
Planning how to manage the battery in advance is key here, and the period of learning triggers and challenges allows this part of the process to come in to its own. Here we look slightly further ahead to large tasks and can work backwards in a visual manner, which is much easier for our client group.
Individuals can learn, for example, not to plan a dinner out with friends on a Friday evening after a day of attending a heavy medical appointment. They begin to gather information and increase understanding that rest and recharge after the appointment in order to turn up to that event with energy to enjoy and participate.
Readers begin to learn that those types of appointments are cognitively demanding, especially if they are novel or if there is a significant amount of travel. Individuals are prompted to plan accordingly, keeping the Wednesday and Thursday light on activity with low level tasks, so their battery is as optimal as possible for Friday. This tapering, where you pull back where possible on tasks in order to be at your best for the big event, will have a positive impact on fatigue scoring and prompts to do this are included in the weekly plan.
It is also important to plan appropriate goals. Ones that are achievable rather than insurmountable. SMART goal planning is an effective means of doing this, and in many ways is a whole new journal in itself. However, an overview is provided to ensure individuals understand the benefits of such goal planning, and prompts and templates are provided.
Points
I am a big fan of this approach, and have used it with many clients, and her it is particularly useful in the early days when individuals are discovering the activities that use more cognitive energy. There is a page in the journal for tasks and assigned points. Points change as fatigue improves and people become more able to integrate the Ps into routines. It also helps understand the benefits of rest or recharge for winning back points.
Tracking
I love a graph. So, I provided space at the back of the journal to track your fatigue. This is a really powerful technique, as it is there clear in black and white how things are progressing over time. I can be easy to become stuck in a pattern of negative thought that nothing is changing. The only way you can see change sometimes is through tracking.
Each day the reader tracks their average daily fatigue score. Patterns begin to emerge and there are the daily and weekly reviews to refer back to, to see why there was a change, and what made that period more fatiguing or more energised.
Sleep hygiene and recharge education to enable the reader to learn about setting down good habits, as well as understanding that rest does not always mean lying in a dark room runs through the journal. Its so important that users can see what works for them, and that what works for one person might not for them, again the individual nature of the journal is paramount. I’ve included some mindful colouring each month as well, to encourage such practice. Some clients involved their children or spouses here, which is a wonderful collaboration, and a perfect reminder of their support network on those tougher days.
The journal provides 6 months' worth of daily diaries, weekly reviews and weekly planners. It’s a big book but it means that there can be consistency, there’s less likelihood of it going missing under a pile and there is a good amount of data available to the user. Each week has a motivation quote and
the reflective practice becomes one of the most important elements. A benefit of self-publishing too is that changes can be made, and new editions created based on the readers needs and feedback. When purchased there is a link to an audio version for those who struggle with large amounts of text. I’m in the process of creating a version for children, which will be full of fun and engaging activities to allow the whole family to be involved!
It has been a privilege to provide the resource and hear about the impact it is having on individuals living with the challenges of brain injury fatigue, any progress to me, no matter how small is huge progress.
The journal is available to buy directly from Natalie or on Amazon: www.amazon.co.uk/dp/B09B3LS6Z6
FND:
Updated research
and the optimal rehabilitation pathway
H. Batey, S. Glen, K. Dawson
Introduction
As a neuro-rehabilitation organisation, we are seeing more and more cases of FND being referred to our clinical teams. These referrals are coming to us directly from insurers, lawyers and case managers, as there is a need for a rehabilitative approach to enable progression on the pathway to recovery. FND manifests in both cognitive, psychological and physical presentations, hence the presence of functional deficits, so the holistic approach of a neuro-rehabilitation team is compelling. From our own reviews, we can see that we are making great progress through our interventions, resulting in some outstanding functional outcomes. We are always keen to understand the research and outcomes that contribute to a growing body of evidence for FND, and to establish through case and literature reviews whether a functional approach does indeed give the best possible outcomes for these clients. We thought the outcome of our findings may be of interest to NR Times subscribers, as we will all see more of this client group in need of our particular skills and experience.
The background, research and clinical evidence
The study of what we now call Functional Neurological Disorder may date back millennia. In fact, its roots stem from ancient Egypt, when it was believed that movement of the uterus would lead to hysterical disorders, while the ancient Greeks were moved to name the condition for the Greek word for the womb, hustera. Scholarly thinking didn’t change for some time, with the father of modern medicine also holding the belief that hysteria was a uterine disorder, but one that originated from the lack of sexual intercourse which caused the release of toxins into the body. Thankfully, medical thinking has leapt ahead and men may no longer fall upon the weak lines of Hippocrates to persuade their potential suitors, but the traumatic hysteria label persisted well into the 20th century, perpetuated by some of the great names in the annals of neurology, such as Charcot and Freud.
Even in relatively contemporaneous times, FND has had a difficult road to proper recognition. The labels changed but diagnoses of conversion disorder followed almost identical criteria to those of hysteria, further justifying the characterisation of a preponderance of symptoms as psychosomatic, or patients as simply malingering, not indifferent to the way that many were treated when presenting with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME), or ‘Yuppie Flu’ to give it its proper pejorative.
In recent decades there has been some serious investment and research into FND and it has become a much more widely recognised and accepted disorder within the neuropsychology community. Whilst it is still listed (perhaps without merit) as a rare disease, staggeringly, in 2020 the Department of Neuropsychology at NHS Grampian reported that approximately one third of all patients attending their general neurology clinic would go on to receive a diagnosis of FND.
What remains rare is that FND is one of a small number of disorders that is categorised in the International Classification of Diseases (ICD-11) as both a psychological disorder and a neurological disorder. We feel that this is of benefit to both clients with FND and to the clinicians that treat it, as it aids multi-disciplinary team collaboration across neurology and psychiatry specialisms, and specialist clinics that exemplify this collaborative approach are growing in number across the UK.
Whilst Prof. Selma Aybek and Dr David L. Perez note that duality of classification “creates coding problems between mental health and neurological disorders that affect which clinical services will be reimbursed, or by which expert patients should be evaluated in medico-legal cases” in their excellent review, ‘Diagnosis and management of functional neurological disorder’, this issue may be of less relevance in jurisdictions that do not reference the DSM-5 model. Besides this, the increase in specialist FND services may render the issue of which service to reimburse a moot one.
FND is in a category of functional disorders that primarily comes from within the functioning of the nervous system, as opposed to any identifiable pathophysiological disease, which is something it shares with both irritable bowel syndrome and fibromyalgia. Dr Bichard of The Walton Centre describes it as “a problem with the functioning of the nervous system in a structurally normal brain”. Prof. Jon Stone et al use the relatable analogy, in their highly recommended paper ‘Recognising and explaining functional neurological disorder’, of calling it a “Software rather than a hardware problem”.
Diagnosis was previously one of exclusion, which left questions looking for answers, some of which could be provided by psychoanalysis. Relatively recent developments that have increased our understanding of FND have meant that diagnosis is now arrived at from positive, rule-in signs that can be determined by tests performed under the direct supervision of a neurologist or a neuropsychiatrist, with the presence of psychological stressors being recorded as an adjunct to any of the accepted criteria. All of the accepted positive motor signs for FND are neatly presented in tabular form
in the Aybek and Perez review. Prof. Stone (Stone et al, 2009) also highlight the low misdiagnosis rate of less than 5%, cautioning against fear of misdiagnosis.
What are the signs and symptoms we need to be looking for?
Since classification is clearer and patients can now gain an unequivocal FND diagnosis, how does this look in practical terms?
As we have seen across Reach, FND clients can experience a wide range and combination of symptoms that are physical, sensory and/or cognitive. This is where the rehab approach needs to be focussed and the assessment needs to be very specific to gain an accurate baseline.
Typical symptoms
There are a range of typical signs and symptoms within the disorder, the more common ones come under three clinical headings.
Motor Dysfunction
> Functional limb weakness and paralysis.
> Functional movement disorders including tremor, spasms and jerky movements – all leading to problems with walking.
> Functional speech symptoms including slurred or stuttering speech in addition to whispering speech (dysphonia).
Sensory Dysfunction
> Functional sensory disturbance which includes altered touch sensation including numbness, tingling or pain in the face, torso
or limbs, (this often occurs unilaterally, which has been the case with several Reach FND patients).
> Functional visual disturbances, including loss of vision or double vision.
Cognitive symptoms
> Dissociative (non-epileptic) seizures presenting as blackouts and faints.
> Fatigue – cognitive and physical.
> Sleep problems.
> Anxiety
> Memory problems.
> Low mood.
> Problems with planning/organising.
It is important to remember that these symptoms are quite real and often very disabling, and can co-exist alongside a diagnosable neurological condition (in around 10 – 20% of cases).
Some key points:
> Neurological disease is one of the main risk factors for FND
> About one sixth of neurological outpatient diagnoses are for FND, this is second only to headache and migraine.
> FND is one of the commonest diagnoses in neurology. (Stone et al)
Amongst other concerns for clients are that functional problems often result in issues within work settings, and they can also experience difficulties in social settings and encounter problems in their relationships.
As we have seen within our clinical practice at Reach, symptoms can vary and fluctuate, and we have frequently observed clients in remission, followed by sudden relapse.
It is therefore prudent to identify the ongoing difficulties for FND patients, and to establish an appropriate treatment pathway, whilst carefully managing their expectations to ensure that they are able to achieve realistic goals.
Best practice – the rehabilitation pathway
We do not make the claim that Reach are FND experts in a medical, or a medico-legal sense. However, we are gaining more and more clinical experience of this disorder, with a number of our clinicians having worked with FND patients on both a community basis and on an inpatient basis within the NHS. We are drawing from our clinical experience and the available research evidence to provide the high-quality rehabilitation service these clients need and deserve. I’m keen to share our practical knowledge and experience, so that we may contribute in any way we can to advance our clinical practice and support
other providers within this sector.
As we have discussed, FND manifests itself in a multitude of ways and symptoms can vary in severity. The capricious nature of the disorder often makes it very difficult for clients to plan and manage their day-to-day lives, which can be very disabling, but also where our rehabilitation treatment pathways can be of most benefit. It is well noted that neuro-occupational therapists are a good fit in the treatment toolkit of a multi-disciplinary team co-ordinating the complex needs of those with FND.
Within all of the literature reviewed, it states that communication is key”. Presenting a positive diagnosis is a crucial part of the treatment, whilst not forgetting that it is equally important to supply an explanation of how the diagnosis was made. It was found in a study (Duncan et al, 2011) that proper communication of the diagnosis was followed by cessation of functional seizures in greater than 40% of new-onset patients. This is a staggering percentage.
What is the evidence-based prognosis of this neurological condition?
As one may expect, it is noted that outcomes vary considerably and so confident statements about prognosis are ill advised. Primarily, clinical outcomes are dependent upon many biopsychosocial factors and it is currently unclear how prognosis varies if a client is afforded optimal care and their pathway takes advantage of some of the newer treatments available. The research in this area is ongoing and we follow progress with interest.
There are however, some trends on outcomes:
> Good outcomes are more likely where the patient is younger and/or symptoms are of shorter duration; longer duration
of symptoms predicts poorer outcomes
> Co-morbid anxiety and depression predict worse outcomes in some studies
An important point to note is that, like any other condition, a rehab team can only predict accurate outcomes once rehabilitation sessions have started and even then, you can never be totally confident. It is stated that, even if clinical studies are not totally confident on predicting outcomes, every FND client deserves the opportunity to maximise their functional performance through rehabilitation.
Key principles of the optimal treatment approach Clinical assessment (subjective and objective)
As with all conditions it is import to complete a thorough assessment, being clear and transparent about any observations and ensuring the use of appropriate terminology.
Clearly explain the diagnosis
Take time to ensure that the client understands the diagnosis, explore what the diagnosis means to them, and demonstrate how the diagnosis was arrived at.
Set realistic goals
Setting goals is important, this enables patients to be at the centre of their treatment, to feel seen and heard, and for them to see the progress that they are making. Goals should be realistic and they should be achievable, in terms of both the ability of the client and the available time for therapeutic treatment.
Grade treatment/activity
Treatment should be graded in order that goals can be met. The best approach is to start easy and slowly build complexity, so that achievements are noted and progress is easily measurable.
Regularly communicate progress
It is really important to be honest about progress, if goals are not being achieved it might not be the right time for treatment and continuing to strive towards them may put clients under additional pressure.
Educate and empower self-management
As with most conditions, empowering patients to understand their own condition and enable them to manage it effectively is paramount, so providing education is vital. A patient will learn what works and doesn’t work for them, our role is to provide them with the information they will use to develop their management strategies and to supply them with guidance where it is needed. Some examples of self-management strategies include: grounding techniques; breathing exercises; relaxation; physical activity.
Technology can also provide support for a number of patients, for example, the highly recommended MyFND app.
An historic case of misdiagnosis
Here we briefly discuss a case of misdiagnosis, selected because it highlights the challenges that arose when there were no rule-in signs for the clarity of diagnosis. This young man was working as a gamekeeper prior to his injury and was living independently. Some of the main features of his case are:
> He was a young man (23 years old)
> Admitted to hospital with a TBI
> Developed a new movement disorder
> There was a lack of understanding of FND
> Client had a mistrust of professionals
> Diagnosed with FND post-discharge
He was an inpatient around 15 years ago, which was before we had an in-depth understanding of FND. He presented with a pattern of symptoms that were not in keeping with his brain injury, which resulted in confusion amongst the professionals who lacked the knowledge of, and exposure to FND. The subsequent lack of understanding lead to a breakdown in relationships due to the client feeling that he was not believed. This would not happen today, now that we have clear classification of symptoms.
Subsequently, this patient was given an FND diagnosis once he was seen in the community and he went on to work well with the team of neuro-occupational and physio therapists to achieve his personal and functional goals.
With the continual increase in awareness of FND and with access to clear treatment plans, cases like this will no longer occur.
Concluding themes
In summary, some of the main take-aways from our clinical work and literature reviews are that:
> FND is a common condition and can be hugely disabling
> FND is real and should be diagnosed using positive signs
> FND is thought to result from a combination of biopsychosocial factors
> FND diagnosis should be clearly explained to the client and reinforced by the MDT
Recommended themes to treatment
Current guidance for the treatment of clients with FND advises practitioners to duly consider the following:
> To educate the client and the family/carers
> To seek automatic/normal movement strategies and integrate them into function
> To avoid compensatory strategies, aids and adaptations where it is safe to do so
> To develop self-management strategies including building awareness of triggers
It’s important to acknowledge that the body of research is growing, creating an ever-evolving picture, and our team of experienced clinical specialists work closely alongside multi-disciplinary teams to ensure that our clients have access to innovative treatments for FND.
1. Cecilia Tasca et al, Women And Hysteria In The History Of Mental Health’, Clinical Practice & Epidemiology in Mental Health, 7 August 2012, PubMed [Online] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3480686/ Accessed 7 July 2022 /
2. Nicholson TRJ, Stone J, Kanaan RAA, Conversion disorder: a problematic diagnosis Journal of Neurology, Neurosurgery & Psychiatry, 2011, BMJ [Online] https://jnnp.bmj.com/content/82/11/1267 Accessed 9 July 2022 / 3. Selma Aybek and David L Perez, Diagnosis and management of functional neurological disorder, 24 January 2022, BMJ [Online] https://doi.org/10.1136/bmj.o64 Accessed 7 July 2022 4. Stone J, Burton C, Carson A. Recognising and explaining functional neurological disorder, BMJ 2020 [Online] https://www.bmj.com/content/371/bmj.m3745 Accessed 9 July 2022 / 5. Stone J, Warlow C, Sharpe M (2010). The symptom of functional weakness: a controlled study of 107 patients. Brain 133: 1537–1551 / 6. Stone J, Warlow C, Carson A et al. (2005). Eliot Slater’s myth of the non-existence of hysteria. J R Soc Med 98: 547–548 / 7. Stone J. Functional symptoms in neurology: The bare essentials. Pract. Neurol. 2009;9:179–189 / 8. Aybek & Perez, Diagnosis and management of functional neurological disorder, BMJ 2022;376:o64 https://www.bmj.com/content/bmj/376/bmj.o64.full.pdf9. Monzoni CM, Duncan R, Grünewald R, et al.: How do neurologists discuss functional symptoms with their patients: a conversation analytic study. J Psychosom Res 2011; 71:377–383 / 10. Gelauff J, Stone J, Edwards M, et al. . The prognosis of functional (psychogenic) motor symptoms: a systematic review. J Neurol Neurosurg Psychiatry 2014; 85:220–6. / 11. Pareés I, Saifee TA, Kassavetis P et al (2012) Believing is perceiving: mismatch between self-report and actigraphy in psychogenic tremor. Brain 135:117–123 / 12. Nicholson C, Edwards MJ, Carson AJ, et al Occupational therapy consensus recommendations for functional neurological disorder Journal of Neurology, Neurosurgery & Psychiatry 2020;91:1037-1045 / 13. Yam, A., Rickards, T., Pawlowski, C. A., Harris, O., Karandikar, N., & Yutsis, M. V. (2015, December 21). Interdisciplinary Rehabilitation Approach for Functional Neurological Symptom (Conversion) Disorder: A Case Study. Rehabilitation Psychology. Advance online publication. http://dx.doi.org/10.1037/rep0000063 / 14. Nielsen, G., Stone, J., Buszewicz, M. et al. Physio4FMD: protocol for a multicentre randomised controlled trial of specialist physiotherapy for functional motor disorder. BMC Neurol 19, 242 (2019). https://doi.org/10.1186/s12883-019-1461-9 / 15. The MyFND mobile application https://myfnd.co.uk/ / 16. Functional Neurological Disorders, NHS, Sheffield: https://www.sth.nhs.uk/services/a-z-of-services?id=115&page=293
We’ve seen the lack of support first-hand - that’s why After
Matters exists’
When Matthew Hayden and Aidan Lees sustained brain injury through violent attacks, their lives - and those of their families - changed beyond recognition. Yet with an absence of support after their return home, their battle to rebuild their lives was made more difficult.
Here, their mothers Maxine Hayden and Louise Bird reveal the reality of the situation they faced, how peer support was vital, and why the creation of After Matters - a specialist charity to support 16-to-25 year old brain injury survivors and their families - will help others escape the loneliness and helplessness felt by so many after brain injury.
“The care we had in hospital was absolutely fantastic. But then we were discharged home to nothing. And that’s when the reality of brain injury really hit.”
The story is all too familiar to survivors of brain injury and their families, and the impact of the lack of support in the community is profound.
Too often, families reveal their struggles to cope, the cascades of emotion, the loneliness and isolation - but in the absence of any tailored support post-discharge from hospital, these problems can escalate into a huge additional burden for survivors and their loved ones to carry, as they try to move on with their lives.
For Maxine Hayden and Louise Bird, their experience was the same as that of countless others - but by discovering the reality that confronts so many families came their inspiration to make change.
Life-changing traumatic injury
Maxine and Louise met in 2018 when their sons - 17-year-old Matthew Hayden and Aidan Lees, 18 - experienced separate violent assaults and were in neighbouring beds in Salford Royal Hospital’s intensive care as they battled for survival after brain injury.
Matthew and a friend had been viciously assaulted in an unprovoked attack by a gang of youths, leaving Matthew needing emergency life-saving surgery and with a significant traumatic brain injury.
In an attack by a then-friend, Aidan - who had only recently become old enough to visit the pub - had his skull shattered by a pool cue while enjoying a night out, which was embedded two centimetres inside his brain. He was left paralysed down his left side.
While happily - and miraculously - both Matthew and Aidan survived, their stay in hospital and hugely positive experience of the support of medics sadly was not a pre-cursor of things to come.
“The hospital were brilliant, absolutely amazing. They saved our boys’ lives. The team at Salford Royal were first class. But then we went home to nothing. Absolutely nothing,” reveals Maxine.
“We were probably a bit naive because we thought we’d get our boys back, we’d go back to our lives. But you quickly realise that isn’t going to be the case.”
“We were given a hospital discharge pack with some information in, but that was it,” continues Louise.
“Nobody came. Nobody checked to see how we were getting on. Nobody said ‘Do this, do that’. And it’s at that point you realise you’re all on your own.”
Brain injury - the ongoing impact
As young men in the prime of their lives, the impact on both Matthew and Aidan has been seismic.
Matthew, who turned 18 shortly after being discharged from hospital, had a commercial apprenticeship at a local engineering company but earlier in the day that he was attacked, he had just been awarded a scholarship to play
rugby in America. Rugby was his passion and his dream had come true - before his life was changed forever hours later.
As a result of brain injury, he now lives with ongoing fatigue, insomnia, cognitive issues, as well as PTSD from the horror of what happened to him.
Aidan, who had also secured an apprenticeship, was left with left-side paralysis from his attack and needed extensive physiotherapy to regain the ability to walk.
Their injury at such a formative point in their lives added further to the impact of brain injury.
“For Matthew and Aidan, they’d not long left school, they'd just started on the journey of starting their new work, career paths, college, learning to drive. It’s such an important time in young people’s lives, starting the next chapter and getting their independence, and then suddenly it was taken away from both of them,” says Maxine.
“As well as the physical and cognitive effects, their mental health suffers a lot because of this.”
Lack of awareness of brain injury from wider society adds further to the challenges they face.
“Matthew and Aidan are both what you would class as higher functioning brain injury survivors, because to look at them, you
probably wouldn’t realise they had a brain injury,” says Maxine.
Louise added “Aidan’s scars are more visible than Matthew’s, but other than that, you wouldn’t know and that’s when you have to deal with the questions. Why are you so tired? What’s wrong with you? You look fine, why can’t you do this? Why is this taking you so long?”
Trying to return to the working lives they hoped for has also posed significant challenges.
Maxine says: “We saw that with Matthew trying to go back to work, when he retrurned to his apprenticeship, he did struggle. He had problems with his memory, concentration, he was very fatigued and taking too long and getting things wrong.”
“He never managed to keep all the jobs he tried afterwards because he couldn’t keep up with the workload and was making mistakes under the pressure. It’s been so disappointing how few employers seem to be disability friendly.
“He tried so hard and got up everyday to go into work but then I’d often get phone calls from him during the day where he was breaking down in tears as he was struggling to cope.
He felt isolated and that nobody understood why he was struggling and I would have to collect him to bring him home.
“He also developed anxiety attacks at this point and although we tried to encourage him to keep going and keep trying, we came to realise, being under that pressure to keep up and ‘get back to normality’ was actually making him worse.
“He has tried quite a few jobs since then but now he’s found something that really suits him. The employer is very understanding and carries out extra risk assessments and let Matthew have rest breaks and things like that. They even let him stay overnight in a hotel nearby if he’s very tired. So they’ve been brilliant, but it has been a long journey to get here.”
Aidan had similar struggles in trying to go back to the electrical engineering apprenticeship he had previously started.
“He went back to work part-time and I had meetings with the HR team, saying it’s going to take him a while, and they were understanding. But because he looked fine, I think a lot of people expected more from him than he was able to give,” says Louise.
“He had terrible OCD after his injury, which was a struggle for him in the workplace and he kept getting into trouble. He ended up quitting and went into some other jobs, but didn’t want to
tell them the extent of his injury. Through him being paralysed on his left side, the nerve damage in his brain which works his fine motor skills in his left arm has been badly affected,
so he does struggle.
“But now, Aidan has started doing bricklaying with a view to doing construction management. He’s having to start at rock bottom and work his way up, and has had to adapt his bricklaying technique to take into account his left arm.
He does it his own way but has just passed his level one with a distinction.”
While Matthew and Aidan have both made progress in their lives and careers - probably exceeding that which their mothers hoped for or expected in the very early days - the lack of any forum for support meant they have had to enter the unknown alone.
Although some support groups did exist, sadly they were not suitable for their needs, says Louise.
“There was one group, which was at 7pm and an hour’s drive there and an hour home, which is a long journey and late meeting for people living with brain injury who struggle with fatigue anyway,” she says.
“And we found that these groups were often mainly older people - our sons were 18 and 17 when they were attacked with their whole lives ahead of them, and were now having to deal with the fact that had been ripped away from them. There was absolutely nothing for that age group.”
Without the provision of any formal support, Matthew and Aidan were able to find some support in each other.
“It has been important, they have spoken to each other about some of their struggles, they’ve got that connection where they understand in ways others don’t,” says Maxine.
“I think if they hadn’t met, they wouldn’t have come across another young brain injury survivor, I don’t think. But so many young people will be in that position, where they don’t have anyone.”
The absence of support for the family
Having swapped numbers while in hospital, Maxine and Louise quickly realised that in each other they had found some support.
“We had no idea how valuable it would be when we swapped numbers. We were so focused on Aidan and Matthew in hospital rather than making any sort of friendship or even speaking that much, it just wasn’t on our minds at the time,” says Maxine.
“It didn’t really evolve until probably about three or four weeks after Matthew came home, because once family and friends have visited to welcome you back, that dwindles away and you’re on your own. That’s when it’s the most lonely time as a parent, and also for Aidan and Matthew as survivors. That’s when you realise that this is your life now.
“It’s like a bereavement as you try to come to terms with what’s happened. It is so hard to come to terms with, we didn’t know where to start.”
It's only as the weeks start going by and they start presenting with new challenges you realise the reality is very different from what you’d hoped, that it would be back to normal soon.
You think ‘Why are you behaving like that?
Why can’t you remember what you were told two minutes ago?’ You aren’t told to expect anything like this, you just don’t know, and you don’t know who to turn to.”
“But in Louise, I had someone who understood exactly what we were going through. The trauma we’d been through. The impact on Matthew and the change that had made to us as a family. The everyday challenges we faced and the fact we didn’t fully understand the impact of brain injury.”
Louise continues: “No-one tells you what’s normal, what is going to happen, what to expect, you’re just expected to get on with it. Without having Maxine to speak to about these kinds of things, just the little concerns you have, it would have been an even bigger struggle.”
“At first it would just be the odd text, such as to wish Matthew a happy 18th not long after his discharge. But once the reality set in, we started texting each other saying Aidan is struggling with this, and Matthew would be too, and we started helping each other with bits of information we’d found ourselves.
“That was so valuable, especially because there was no-one else who understood exactly what we were going through.”
The significant mental health impact on Maxine and Louise - whose daughters were aged 11 and 12 at that time - also grew over time, again without any support or signposting for help.
“We were struggling mentally with it and accepting what had happened,” says Maxine.
“Our daughters were seeing what had happened to their brothers, and that’s very hard for them to cope with, and again there is no support there to help with that.
“First of all, I think you get shock, then you get anger. There’s so many questions about why it happened, it shouldn’t have happened. And I think that’s when the depression sets in. And that can be hard to get out of.”
“This massive change to your lives, and the lives of Matthew and Aidan and what they should have been looking forward to and achieving, is very hard to take. And I think the fact it was a deliberate, violent act that had caused this impacted very deeply. It was senseless, we struggled to make any sense
of what had happened.”
"We’d never exclude anyone based on age, we know how isolated people can feel at any age"
After Matters - turning trauma into a positive legacy
Having seen first-hand the absence of support for the 16 to 25-year-old age group, as well as for their families, Maxine and Louise decided to take action themselves.
“It was just through chance really that Louise and I met the way we did and kept in touch. But through the experience we both shared, we realised that other families must be going through this as well,” says Maxine.
“We wanted to do something to help other people, something constructive, something positive to come out of such a traumatic situation.”
After Matters was created to help address the lack of support for young people and families, with Matthew and Aidan both actively involved as trustees.
Targeted specifically at young people, the charity provides a forum for survivors and their families from across Greater Manchester to meet and share experiences, and its website offers advice and signposting for families unsure where to turn.
Its fundraising will also enable young people to access cutting-edge therapies at BASIC in Salford, which many are sadly excluded from financing themselves due to the cost.
“When you’re at that age, 16 to 25, you want to mix with people in your own age groups and circles - but for young people with brain injury, there was nothing for that transitional age group,” says Louise.
“You're going from childhood to adulthood and something like that happens to you, You do feel that the only person in the world that that's happened to. But when you have the chance to meet other people your age, who are in the same position as you and actually understand what you’re going through, that’s a massive moment.”
Maxine adds: “We’d never exclude anyone based on age, we know how isolated people can feel at any age, but it’s that age group with their unique challenges we are really focused on. I think that’s where support is very badly needed, this age group is vulnerable enough at such a time of change in their lives, even without brain injury being part of the equation.
“I would love them to see Matthew and Aidan and feel a connection and inspiration. Obviously nothing is guaranteed with a brain injury, you don't know what the outcome is going to be, but I hope it can give young people hope and something to work towards.”
Louise adds: “I think it also shows parents, because our boys are involved in it, how far they've come. And it gives them hope as well. It shows that brain injury isn’t the end. It’s certainly a rollercoaster of a journey - sometimes it’s going right, but sometimes you hit rock bottom - but it shows why you should never give up and never lose hope.”
As After Matters continues to grow, with sessions held at BASIC and growing interaction on social media and through the website, Maxine and Louise are delighted with the response to something their own experience revealed was so badly needed.
“Because of the kind of parents that Louise and I are, we would have done anything to find the help we needed, because we’re determined as mums to get the best for our sons,” says Maxine.
“I’m not sure we ever imagined we’d have to create something ourselves because there was nothing suitable, but I’m really pleased we have. We don’t want other families to feel alone in the way that we did.”
“We did this to help other people, but by creating After Matters, it has actually ended up helping us to feel better ourselves,” says Louise.
“Both Aidan and Matthew are involved, and I know that helps them, and they are really pleased that the work we are doing is helping other young people and their families.”
Maxine adds: “We want to show people that there is still chance to have a good life after brain injury. It’s just going to be a different life, but you learn to follow a different path, but it can still be a good one and that’s what we want to let our young brain injury survivors know, and hopefully they will see that when they see how far Matthew and Aidan have come.
“Both Matthew and Aidan have had their best year in terms of how far they've come and how they have overcome their struggles. Seeing their confidence grow and their acceptance of their new life has been massive for us as parents too.
“It has now been almost four-and-a-half years since they sustained their brain injuries but this last 12 months seems to have been their best year in terms of their mental health and we have both seen improvements in the boys generally, long after the ‘two year’ window that you often get told will be the best they will get to.
“They do still have their struggles, but we really want other survivors and parents to be aware of that, to let them know there is always hope and improvements and gains can be continued to be achieved, no matter how small, it’s so important people are aware of that.”
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