An acquired brain injury is any damage to the brain that occurs after birth.
Road traffic accidents are the most common cause of ABI in older children and adolescents, whilst falls, being dropped or non-accidental injuries are more common in younger children and infants. (Ref: West, J; Cerebra; 2010)
“The NHS’s Draft Service Specification for Paediatric Neuro-rehabilitation, published in December 2012, estimated that around 40,000 children in the UK suffer a brain injury each Year” This is the most comprehensive estimate from an official source for some time.
The document states : the incidence of hospitalisation for Traumatic Brain Injury (TBI) in England has been reported as ranging from 280-500 per 100,000 children aged under 16. This equation implies that the total number of children admitted to hospital for TBI per annum in the UK is at least 35,000.
Of these, approximately:
(Middleton, JA (2001); Brain Injury in children and adolescents: Advances in Psychiatric Treatment, 7, p257-265)
MATRIX Neurological has therefore been formed to enable children and young people who have sustained an acquired brain injury, before the age of 19, to have immediate access upon discharge to high quality community-based services and support tailored specifically to their needs. These services are currently not available nationally. People supported by us will continue to have access to services from MATRIX Neurological until they are 25.
ABI is often referred to as a ‘hidden disability’, as survivors may have no physical evidence of their injury. Many of the impairments are not visible to others and it is only over time that the longer term effects may become apparent. The negative consequences of ABI can severely and permanently change a child’s life, as well as have a profound impact on the child’s family as a whole.
Impact on the child:
ABI can cause a range of long term disabilities such as communication and cognitive deficits, sleep disturbance, physical impairments such as post-traumatic epilepsy, depression and high rates of behaviour problems. The more severe the ABI, the greater the impairments of neuro-behavioural functions.
It is usually the cognitive, behavioural and personaity deficits that produce the greatest disruption to their quality of life. However, the long term effects often arise when childrn move into adolescence and adulthood and the true extent of these impairments may only become apparent when the child or adolescent returns to education and fails to meet develomental milestones.
Impact on the family:
It is well recognised that ABI affects both the injured individual and the family as a whole. Families experience panic and fear; shock and denial; anger; guilt and isolation and often no hope for the future. Although they eventually adapt to the increased demands of the brain injured child, it is also common for parents of children with an ABI to experience:
MATRIX Neurological was primarily set up to work with children, young people and their families who are living with the effects of an acquired brain injury who are in need of help or support. We are aware of the difficulties faced by parents and other community professionals in understanding what has happened and the effects of brain injury on the child or young person. Our services also aim to help parents understand a new way of living and advocate for the on-going rehabilitation needs of the child or young person.
"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."
"Case management for children and young people post acquired brain injury is 'pivotal' to successful outcomes and must be local"
"Pediatric neuro-rehabilitation cannot be delivered in isolation. The needs of the child have to be looked at both holistically and within the context of the family unit. Parents need to be empowered to be parents in post-acute pediatric neuro-rehabilitation following brain injury"
"Often families don't have the financial capability to access services. We need to rethink how we delivery neuro-rehab services to children and young people"
"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."
"Restoration of anatomical functions and relationships must be done within 2 months of brain injury"
"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"
"We are medical practitioners. The real experts are the parents. Over the last 35 years they have taught me everything I know"
"More play increases brain plasticity and makes for better recovery post brain injury"
"Intensive and individualized approaches work. A one-size-fits-all approach doesn't. You have to make it relevant to the child."