What does neuro-rehabilitation do?
‘Rehabilitation aims to reduce the impact of (brain) injury by 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 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 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, youth offending, the prison population, homelessness, youth unemployment, mental health services, drug and alcohol abuse and domestic violence.
Yet we know that good quality and ongoing neuro-rehabilitation support is associated with
* This is is the main focus of our charitable work and where we add value to existing provision.
Additionally, 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 there is a direct link between poverty and poor socio-economic resources and poor long term outcomes post brain injury (as research is showing).
Neuro-rehabilitation is therefore not just about physiotherapy, occupational therapy, speech and language therapy etc. to facilitate self-care and activities of daily living (ADL’s), it must be an intensive multi faceted approach that also addresses education, housing, and socio-economic problems.
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.
Our own research shows a child’s ongoing recovery is most effective if their recovery needs are addressed holistically, which is far more complex than even medical professionals have experience 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.
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 problems start to emerge.
It is in the community where these very vulnerable children are most at risk of not receiving the help and support they need. There still exists a huge lack of understanding of their hidden disabilities across a range of professional fields, which exacerbates problems further.
Wherever possible, we work in partnership with parents and professionals, by coordinating and advocating for the ongoing needs of brain injured children and young people across a range of community organisations; ensuring their ongoing and often changing needs continue to be recognised as part of their hidden disability.
Without us, this does not happen and the needs of this vulnerable cohort go unrecognised, misdiagnosed and unsupported, as research studies are now evidencing.
"Families and professionals spend time focusing on the negative aspects of ABI. Families need to be properly supported as 'resilience' is key to delivering successful outcomes for children and young people."
"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"
"Thousands of children and young people living in the UK today without the help and support that can make a huge difference to their lives"
"We need to harness the power of brain plasticity for treating children and young people with brain injury. Stressful experiences alter brain development of a child, especially at the key ages of 0-3 and at ages 10-16"
"Different 'experts' involved in pediatric neuro-rehabilitation come from different organisational cultures which causes conflict and has a negative effect on the outcomes for the child."
"Case management for children and young people post acquired brain injury is 'pivotal' to successful outcomes and must be local"
"Participation in teen sports and normal activities leads to improved quality of life for children and young people post brain injury and helps to maximise outcomes"
"There are problems with getting people into neuro-rehab centres. Those most in need are often those most excluded due to a lack of socio-economic resources."
"Taking brain injured children home causes high stress for families. Disjointed services exacerbate family stress levels."
"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"