What do we know about local provision?


Prevalence of traumatic brain injury in the Tees Valley

In 2018/19 almost 2000 children and young people who attended A&E with a head injury had sustained a traumatic brain injury.

  • 1,418 were children under the age if 16 and the majority had no loss of consciousness and were discharged
  • 580 were aged 16-25 and the majority had no loss of consciousness and were discharged
  • Less than 10% were admitted  to a ward

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

  • Severe 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 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 limited daily in-patient neuro-rehabilitation
  • The in-house multidisciplinary team – comprises physiotherapist, occupational therapist, speech and language therapist, neuropsychologist, play therapist, ward teacher, paediatric neurologist
  • Treatment
  • There is short-term goal setting and assessment to facilitate discharge
  • In-house neuro-rehabilitation only focuses on mobility, improving speech/communication, swallowing, activities of daily living and self care
  • Cognitive Rehabilitation Therapy is not provided
  • Once a child is considered medically stable, they are discharged to home.
  • Very few are admitted to a specialist unit

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 who are often lack understanding of acquired brain injury as a complex hidden disability  
  • Commonly neither are trained in neuro-rehabilitation techniques.

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 for children
  • 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

Impact

Traumatic brain injury alone costs the state £15 bn a year!

What do children and young people need for better outcomes?

  • Well coordinated, integrated community neuro-rehabilitation support – managed by a knowledgeable Case Manager/ Care Coordinator, taking on both the child and family’s specific needs
  • Increased access to community based support which is intensive, individualised and supplements and compliments existing services
  • Non-clinical cognitive rehabilitation therapy (CRT) (not currently provided)
  • Individualised and rehabilitative education support which starts at home and then integrates into school – currently not provided
  • Detailed assessments to determine their changed and emerging needs post brain injury with ongoing cognitive development support
  • 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
"Healthy teens are better at identifying strategies to deal with barriers. KIDS WITH ABI'S CAN'T!"
Shari Wade; USA
"Parent-supported interventions after pediatric ABI bring reductions to the cost to society"
Eric Hermans; Netherlands
"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"
Claire Willis; Australia
"Often families don't have the financial capability to access services. We need to rethink how we deliver neuro-rehab services to children and young people"
Vicki Anderson; Australia
"Strength-based family intervention after pediatric ABI is essential. Parents need to be equipped with the skills to cope and advocate for the child."
Caron Gan; Canada
"We are medical practitioners. The real experts are the parents. Over the last 35 years they have taught me everything I know"
Lucia Braga; Brazil
"Positive and coordinated neuro-rehab interventions for children and young people is proven to bring health improvements; improve independence; reduces the need for sheltered living; decreases vulnerability; decreases drop-out rates in schools; decreases youth offending"
Eric Hermans; Netherlands
"When different organisations assess different aspects of a child's neuro-rehabilitation needs, everyone looks at things from a different perspective and highlight needs and conflicting priorities"
Cathy Jonson; Rehab without Walls; United Kingdom.
"Intensive and individualized approaches work. A one-size-fits-all approach doesn't. You have to make it relevant to the child."
Recolo; United Kingdom

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 Community Funded Charity Excellence Lottery Funded