Neuro-rehabilitation Support
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
- better long-term outcomes for children and young people, and *
- it decreases levels of distress of carers *
* 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:
- It is delivered by a coordinated and diverse community-based team, who have a sound understanding of acquired brain injury and it’s impact on a child’s developing brain as well as day-to-day life. (Not necessarily professionals)
- Information is gathered from a range of sources
- There is a detailed assessment to identify changes, strengths and support needs – which are often missed
- Appropriate goals support identified needs and are agreed with the child and the family
- There is a knowledgeable Key Worker to communicate and provide advocacy for the child and the family – (not necessarily professionals with limited understanding)
- Support is individually tailored to a clearly identified need – not an assumed need based on a child’s presentation
- It is aspirational, meaningful and continuous
- Appropriate levels of non-clinical interventions are provided using tools that are familiar to children and young people
- Access to knowledgeable and specialist restorative support in education, which is the difference between success or failure in their recovery journey and in life. SEN support is not restorative
- Psychological well-being needs are supported and addressed by knowledgeable people who understand – counselling and child mental health services are not the answer
- It involves and supports the family; particularly single parents
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.
