The Child Brain Injury Trust has working alongside other charities and UKABIF, with the All Party Parliamentary Group to get ABI higher up the government Agenda. Chris Bryant the MP leading the APPG managed to get a debate tabled in the House of Commons for 9pm yesterday evening.
This was a historic event – never before has brain injury been the subject of a debate in the Commons. Louise Wilkinson, Head of Information and Learning for the Trust prepared the following briefing document.
The impact of ABI in childhood
This brief is in addition to the details provided by UKABIF on 13th June.
An Acquired Brain Injury (ABI) is any injury to the brain which has occurred following birth. It includes Traumatic Brain Injuries (TBIs) such as those caused by trauma (e.g. from a road traffic accident, fall or assault) and non-Traumatic Brain Injuries(non-TBIs) related to illness or medical conditions (e.g. encephalitis, meningitis, stroke, substance abuse, brain tumour, poisoning and hypoxia).
Children are very different to adults following ABI – their brains are still developing and will continue to do so until mid 20’s. Therefore we do not know full extent of their injury/difficulties until the brain has fully matured
Chapman et al 2010
- Majority (up to 70%) of children and young people return to mainstream education following their ABI however there is a lack of interim access to rehab both residential and community – community being the main issue for most CYP. This means schools/teachers are the main rehabilitators for CYP, however there is NO formal training for ABI for teaching professionals (including Educational Psychologists, Special Educational Needs Coordinators etc.). So the majority of children and young people affected by ABI are being rehabilitated by professionals who have no specialist knowledge.
- For young people who have no formal diagnosis of ABI they are often either misdiagnosed within Autistic Spectrum or having ADHD and other common learning difficulties, which can be detrimental to their outcomes and future potential.
- ABI is actually more prevalent in the in general population than many other more well-known neurological disorders, see below.
ABI per se is not considered as a disability under the Special Education Needs Disability Discrimination – if the child has a hearing impairment for example, that would be included. However commonly occurring issues such as fatigue, processing, planning and other cognitive difficulties would not be included.
IMPACT ON FAMILIES
- Many families face emotional and psychological turmoil as their normal world is changed in an instant.
- Due to lack of community services, families identify isolation, access to funding, access to support, access to information, and access to counselling as issues they particularly struggle with.
- Families can get “bounced” between Child and Adolescent Mental Services and other non-neurological services, as specialist neurological services for children (paediatrics) are scarce.
- Level of services is very much a post code lottery, with just a few areas of excellence throughout the UK, mostly based around Major Trauma Units.
- Department of Health data shows that in a 4 year period
- 39,000 children under 5 admitted to hospital as a result of falls
- Many of these will be discharged as “fully recovered” however as their brains are still maturing, we will not know full outcomes of TBI until brain fully matured.
- Despite Early Years being a key point in brain development, it is also when children are most vulnerable to injury, yet it is the least supported age group.
Current support for families affected by childhood acquired brain injury – call to action
At this point in time the Child Brain Injury Trust is the only organisation in UK that is delivering a fully integrated support intervention, with our team of Child and Family Support Coordinators, who are part our model of integrated support. The model aims to complement clinical services within the acute hospital setting of major trauma units, through into the community setting such as provision of support in school, and finally in the heart of the family, at their home if required. This model is making the biggest impact across the UK for families of children following ABI.
Currently that charity has to raise in excess of £1,000,000 per year to deliver this service, and receives no funding from central government to do this work in England, Scotland and Wales. (A small amount of funding is received from the Health and Social Care Boards in Northern Ireland)
There is a plethora of research supporting the fact that key worker model, early intervention and whole family support intervention produces the best long term outcomes.
With funding for these services, including training for education and related professionals, currently provided by the third sector, there is no doubt that the societal and economic costs to central government budgets, across long term justice and health care and could be vastly reduced by supporting the 60,000+ families affected each year through the model of intervention outlined above.
Prepared by Louise Wilkinson – Head of Information & Learning
14th June 2018