What does neuro-rehabilitation do?
‘Rehabilitation aims to reduce the impact of (brain) injury by the restoration of damaged function, or compensation for lost function, within the limitations of underlying disease, to optimise physical, cognitive, psychological and social function.’ (Seeley & Hutchinson, 2006)
What do we know?
In our lived-experience and from extensive research, ‘optimisation’ does not happen in the UK, because the necessary ongoing practical support to help them to recover is not provided for children and young people. This means families are left to cope on their own with very little knowledge and understanding of what they are facing and brain injured children are subsequently lost in mental health services.
The real life impact of these decades of failures are now being evidenced in research reports which highlight some shocking statistics across the child population within education, youth offending and the prison population, homelessness, youth unemployment, mental health services, drug and alcohol abuse and domestic violence.
Yet we know that ongoing good quality neuro-rehabilitation support is associated with
* This is is the main focus of our charitable work and where we add value to existing provision by filling a distinct gap.
Additionally, professionals states that the outcome of a paediatric acquired brain injury is related to family function, economic factors and social support. When families are left without the information and support they need – they are simply set up to fail – which then increases family stress!
Our charity operates in an area of high deprivation, and research highlights that there is a direct link between poverty and poor socio-economic resources and poor long term outcomes post brain injury.
Neuro-rehabilitation is therefore not just about physiotherapy, occupational therapy, speech and language therapy and psychological assessments etc. to facilitate self-care and activities of daily living (ADL’s), it must be an intensive multi faceted approach that also addresses sensory and cognitive needs, education, employment, housing, social care, socio-economic problems as well as state benefits and welfare support.
Children, young people and their families need lots of ongoing support during the lengthy recovery journey; and for long after any NHS interventions have ended. Single parents families also need additional support to help them to cope and share the burden and battles they often face alone.
What does work?
Our own research shows a child’s ongoing recovery is most effective if their recovery needs are addressed holistically, which it seems is far more complex than even medical professionals are aware of. To have a positive life-long impact rehabilitation will only ever be successful if:
Sadly, we know from our own experiences and those of our families that this is not provided to the majority of brain injured children and young people in our area. Community professionals often have little or no understanding of the effects of an acquired brain injury on a child’s developing brain and how their emerging difficulties impact on learning and everyday life; which is extremely frustrating for parents. Even worse it has a negative impact on child, adolescent and young people’s physical, psychological and social well-being.
Post discharge Support
Less than 10% of all brain injured children that attend A&E are admitted to hospital. The majority are discharged with time limited or no follow-up because they are presumed to be ‘ok’. However it may be months or years later before the problems start to emerge. It is therefore in the community where these very vulnerable children are most at risk of not receiving the help and support they need.
Sadly there still exists a huge lack of understanding of acquired brain injury as a hidden disability across a range of professional fields; despite it being the biggest cause of death and disability in children and young people in the UK. (Currently estimated to be close to 1/3 of the child/young person population and estimated to affect 1 in 5 children in every classroom, in every school, across the UK!
Unfortunately, brain injured children and young people are often referred to the wrong services, mis-diagnosed as being on the Autism Spectrum or having ADHD, and subsequently treated for the wrong thing – which in some cases has caused serious complications.
Upon their return to school, brain injured children and young people quickly fall behind their peers and when assessed using standard psychological assessment methods, are often diagnosed as having ‘low intellectual ability’ which is often incorrect. This diagnosis appears to create negative mindsets within educational professionals who then lower targets and academic expectations – often assuming ‘they can’t do it anymore’. ‘Strategies’ are then implemented, which do not help the child to recover and by the time they leave school, they still have the same hidden disabilities that continue to affect their day-to-day life and limit their future employment prospects!
Wherever possible, we work in partnership with the child, parents and professionals, to ensure their ongoing and often changing needs continue to be recognised as part of their hidden disability.
Without Matrix, this does not happen and the needs of this vulnerable cohort continue to be unrecognised and unsupported.
"Too often children and young people with ABI are discharged from hospital without specialist brain support that they and their families need to overcome lifelong challenges"
"Case management for children and young people post acquired brain injury is 'pivotal' to successful outcomes and must be local"
"Intensive and individualized approaches work. A one-size-fits-all approach doesn't. You have to make it relevant to the child."
"Children and young people have poor social competence post brain injury due to reduced cognition, executive functions, and emotional control. As a result they are twice as likely to have mental health issues in the future"
"Rehabilitation interventions can lead to positive outcomes for children and their families if delivered in the familiar home environment and applied to everyday situations"
"When different organisations assess different aspects of a child's neuro-rehabilitation needs, everyone looks at things from a different perspective and have conflicting priorities"
"Our 10 year study proves that family-led home-based neuro-rehab interventions deliver the best outcomes for children and young people"
"We are medical practitioners. The real experts are the parents. Over the last 35 years they have taught me everything I know"
"Strength-based family intervention after pediatric ABI is essential. Parents need to be equipped with the skills to cope and advocate for the child."
"NHS clinicians struggle with what intervention to prioritise in paediatric neuro-rehabilitation due to limited clinical time and the complexity of needs. Children, clinicians, parents and schools all have different neuro-rehabilitation priorities"