What do we know about local provision?

The local NHS patient pathway for paediatric brain injury is as follows:

  • Traumatic brain injury – patients are admitted to either James Cook University Hospital or The Great North Children’s Hospital (formerly known as the RVI Newcastle)
  • Non-traumatic acquired brain injury – the majority go to the Great North Children’s Hospital but also to James Cook University Hospital as well as district hospitals
  • After initial stabilisation and acute care, children receive daily in-patient neuro-rehabilitation
  • In-house multidisciplinary team – comprising physiotherapist, occupational therapist, speech and language therapist, neuropsychologist, play therapist, ward teacher, paediatric neurologist
  • There is short-term goal setting and assessment
  • In-house neuro-rehabilitation only focuses on:   mobility, improving speech/communication, swallowing, activities of daily living and self care

Discharge to home:

  • Access to limited community rehabilitation.  e.g. Short blocks of physiotherapy, occupational therapy, speech and language therapy, & intermittent neuropsychology support
  • Engagement with Educational psychologist and Special Educational Needs Coordinator

Problems with community provision across a range of sectors and professions:

  • A lack of understanding and an unfamiliarity with the complexity and challenges of acquired brain injury that leads to incorrect assumptions 
  • No emphasis on ongoing recovery 
  • No cognitive rehabilitation therapy
  • Infrequent and short-term approaches – are not enough to make a difference or deliver any lasting improvements
  • Disjointed and uncoordinated ad-hoc approaches
  • Services and professionals all have different aims and priorities – so no common goal setting
  • Unrealistic expectations and poor outcomes for children and young people

What do children and young people need for better outcomes?

  • Well coordinated, integrated community neuro-rehabilitation – managed by a Case Manager taking on the child and family’s specific needs
  • Increased access to community based therapy which is intensive, individualised and supplements and compliments existing services, such as cognitive rehabilitation therapy (CRT)
  • Individualised and rehabilitative education support which starts at home and then integrates into school
  • Ongoing peer mentoring, education, advocacy and practical support for families aimed at reducing parental burden and improving individual health and wellbeing

This is not provided by public services and why MATRIX Neurological was formed!

Being integral to local public, private and third sector networks is essential to maximise the benefits of local resources to get the best possible outcomes for children, young people and their families; especially in times of austerity.  

We use ‘the lived experience’ to deliver services that fill the gaps, deliver better outcomes, drive improvements, build partnerships, pool resources and save money.

Our innovative work delivers significant benefits to society and savings to the public purse.

"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."
Barbara O'Connell; Ireland
"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"
The Children's Trust; United Kingdom
"More play increases brain plasticity and makes for better recovery post brain injury"
Professor Bryan Kolb; Canada
"Restoration of anatomical functions and relationships must be done within 2 months of brain injury"
Eyzyon Eisentein; Israel
"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"
Dalton Leong; Chief Executive of the Children's Trust
"Poor parenting styles affects children's behavior; increases their learning disability; and has a negative impact on emotions; anxiety; anger management post brain injury"
Andrea Palacio-Navarro; Spain
"New parenting support intervention showed how parenting style is related to executive dysfunction in children and young people post brain injury. With support parents cope better so the child has a better recovery"
Andrea Palacio-Navarro; Spain
"We would like to see earlier identification and support for children with brain injuries to help them succeed in school."
Dalton Leong; Chief Executive of the Children's Trust
"When someone has a brain injury, early access to local, specialist rehabilitation is crucial to ensure the maximum recovery and make significant savings to the state in health costs"
Headway; United Kingdom
"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."
Roberta De Pompeii; USA

OUR MISSION: To work to remove inequalities for children & young people affected by acquired brain injury; and provide effective support to their families that makes a real difference.

Council for Disabled Children Charity Excellence Lottery Funded