‘A person’s injury never goes away - and neither does the need for highly specialist neuro rehabilitation’

Who would have known? Who would have thought? Who would have believed?

Hindsight is a wonderful thing, but foresight is better - William Blake

Kate Russell sets out in her programme foreword at the very recent Community Case Management Services National Conference ‘If only we had known – these thoughts will have crossed many people’s minds, particularly over the last three to four years, but even prior to this, as case managers we were seeing the inadequacy of our clients’ funding for them to fulfil their lives and increase their functioning to engage with life’.

Although a claim may have settled and a person has lived with their injury for many years, their changing needs and life circumstances mean that rehabilitation and therapeutic interventions will need to be revisited - even decades down the line.

The CCMS November 2023 conference, held in London, explored how to predict, as far as anyone can, future needs, by reflecting on the trends and data which were simply not available in our early years.

Some of the outcomes of the case studies presented at the conference far exceed those expectations of some 30 years ago. Children who had suffered severe birth injuries were not expected to reach most, if any, of their milestones.

Tracheostomy clients – swimming!

This would have generally been considered far too risky! New relationships and sustaining former ones after being severely disabled were not discussed or explored openly.

Parenting – well how would ‘they’ manage - let's find out. Travel opportunities have increased phenomenally for the severely disabled and the increase in confidence, social skills and new relationships, is a joy to behold.

As Kate Russell explained: “However, this all requires funding, and a number of our clients sustained their injuries and had their cases settled 15 to 20 years ago and by today’s standards are inadequately funded.

“If we go back 30 years, many of the clients that we manage today would have been admitted, on discharge from hospital to long term basic care provision with bleak futures and would have sadly developed a number of preventable complications, often shortening their lives or at least severely reducing further their quality of life.”

Case management did not exist in the UK until the1990s and BABICM was established in 1996.

Maggie Sargent and Kate Russell, Directors of CCMS Ltd, met through a mutual colleague in 1999 and this was simply a meeting of minds in relation to wanting to improve the lives of our severely injured clients and acknowledge that “Life is for Living” - well the rest is history.

All in all, the advances in care provision, therapies, aids equipment and technology have not been matched by parallel funding.

Thirty years later we know and can demonstrate that it is adequate and appropriate rehabilitation that puts people's lives back together again after catastrophic injury. Therefore, let us try to turn hindsight into foresight, which will give us insight into what will probably be needed for the next 30 years.

Nikki Hopkins and Thamara Raju, Advanced Practitioner Case Managers at Community Case Management Services, discuss the ongoing need for continual review and reassessment for clients, in particular ‘Paul’.

Having lived with brain injury for more than ten years, Paul was supported by 2:1 care day and night, in a routine that showed little signs of changing.

As a result of his injury, he was often mistakenly perceived to be aggressive and, as a physically tall and strong man, appear intimidating, particularly as he experienced issues with dystonic movement.

“We were told that a number of professionals and services had not retained their involvement with Paul over the years, mainly because of his physical presence and communication, and assumptions being made that he was aggressive. We welcomed the opportunity to work with Paul, we hoped we could make a positive difference to his life,” said Nikki.

Since being appointed to work with Paul nearly six years ago, CCMS have indeed made a positive difference, by drawing on their belief that rehabilitation opportunity should be revisited, no matter how long since the injury.

Pioneering data collected via incident logging and CCMS’ clinical governance team over the last 5 years, is helping to articulate the necessity of revisiting rehabilitation considering changing circumstances for all clients, and especially those within the 25-45 age group - associated with evolving life circumstances. This is also evident for clients more than 10-, 20- and 30-years post injury.

“Paul had a key catchphrase he often shared with his case manager and his therapy team, and this was often adopted at key stages of significant change, resulting in Paul reaching his goals over time” explained Thamara,

“Paul has been instrumental in driving his own rehabilitation, identifying what he valued, what was and is important to him now and for his future”.

Whether a person was injured five, ten, 20 years ago, whatever it might be, or whether they’ve already settled their claim - we should always be looking at ways we can improve their rehabilitation and quality of life. It is important for any brain-injured client to have choice and having the funds gives them that choice.

There are so many new interventions, and new approaches and practices, which may not have existed when clients were first injured, but which could make a big difference to their lives now.

“We absolutely believe in doing everything we can to optimise quality of life for our clients, no matter how small… sometimes the smallest changes, can have the biggest impact for each person”.

Rebuilding Quality of Life Through Rehabilitation

For Paul, a man in his 30s who had lived with brain injury for many years, the most obvious thing that first struck Paul’s case manager, was that frustration was very evident. That and his bubbling potential to do more, to have opportunity and choice and to reach for goals that meant something to him.

“You could just see how frustrated he was. He had 2:1 care but there was nothing really going on in his life,” explained Thamara.

“A lot of the time, he was taken to a local pub, to play darts, watch sport and although he was ‘allowed’ two pints, he often had more, and then became more disinhibited with his communication, and his balance, mobility and physical presentation changed.

“His carers would report it as incidents, concerns, but had continued the same pattern of taking him to the pub, for a few years.

“We could see that there had not been a ‘refresh’, ‘reassessment’ or any action really to see what else might be on the table for him. He was bored and frustrated.”

Although Paul was very injured, he was very clearly able to articulate and identify his interests in boxing, health and wellbeing - he enjoyed going to the gym, and really wanted to be strong and healthy. He wanted to date and to find a girlfriend. We saw the potential for Paul to be supported to be able to do so much more.

The case manager recognised the need for Paul to have the involvement of a specialist neuro multi-disciplinary team (MDT), and the road to reaching his key goals commenced.

“We saw the need for neuropsychology input, which he was really open to, and has been really instrumental in educating Paul around the impact of alcohol on an injured brain, the benefits of healthy eating, exercise, good sleep - all things he was really interested in,” said Thamara.

His sessions also focused on his own brain injury, and how it impacted him, why he struggled with some things and supported in identifying strategies and ideas to try new ways to live and to communicate his thoughts, feelings and choices.

“The case manager introduced a neuro physiotherapist, whose input and programme really focused on movement control, with an overall goal of Paul being able to safely hold his newborn baby,” she said.

With a revised approach inclusive of reassessment, a highly specialist neuro MDT in place, Paul reached his goals – he met someone, and became a father. His formal care was successfully reduced to one person during daytime hours only.

Paul and his team (including case management, his neuro MDT, and his Deputy) are now focusing on ensuring he is key in his role as a father going forward and he does not miss out on opportunities to be involved at all key stages for his child.

“We have done a lot of work with how he can cope in a school setting, what support he may need in having a young child,” said Thamara.

“That was important when his son was a baby, and the input of his team now, is crucial still to ensure he is understood, included, and supported whilst functioning as a dad, at school meetings, with other parents, supporting his son in having a dad with a very visible injury as well – there are still many day to day hurdles and challenges to come, but Paul and his team are ready and planning.”

Paul’s situation really does evidence the need for ongoing assessment, review and changing things up to ensure he isn’t ‘left behind’ and to ensure that assumptions are not made that everything has plateaued, and neuro input is no longer needed.

Adapting To Changing Needs

As Paul’s case illustrates, someone who has lived with brain injury for many years can still maximise their potential through bespoke rehabilitation and reassessment, years after injury and years after settlement.

“It’s important that funding is secured - not just for the first five to 10 years, but on a much longer-term basis. There does need to be allowance for the fact that people’s needs can and will change, and that will be much further down the line,” says Nikki.

Funding plays a huge part in the delivery of this, with many clients’ current settlement funding not able to stretch to the delivery of an array of much needed, highly specialist interventions now and ongoing.

With Paul, it was the case manager’s ability to work within his annual budget, working closely with the Deputy, to ensure she could secure the highly specialist neuro MDT, to revisit care provision to better meet Paul’s needs – a complete re-jig and use of his funding to optimise his quality of life and think longer term.

Another key factor many of us working in case management face is that statutory funding can be very difficult to secure for clients with brain injury and will often require very experienced brain injury case managers to navigate this.

Some highly specialist therapies weren’t allowed for in settlements from a number of years ago - aquatic therapy, neuro music / drama / art therapies, intensive therapies, so it does make sense that we revisit injury related needs with clients, particularly in light of more current interventions that are now available and are evidenced based on their suitability.

Thamara and Nikki spoke on the importance of “sourcing the right professionals, with the right level of expertise, being crucial - it’s not just about who is the most local, it is about skill mix, qualifications, additional specialist training to be able to meet client need – needs that are highly complex”.

The impact of highly specialist intervention is visible in progress, quality of life, opportunities and choice, for all clients, including those who are several years post injury and post settlement, we realise the value of securing this for all clients.