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.

"We need to harness the power of brain plasticity for treating children and young people with brain injury, especially at the key ages of 0-3 and at ages 10-16"
Professor Bryan Kolb; Canada
"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
"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"
James Tonks; University of London
This is the best support plan we have ever seen that will deliver the best outcomes for this young person.  The costings are 'spot on' and realistic'.  Direct Payments Team.  
"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
"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
"With support parents cope better so the child has a better recovery"
Andrea Palacio-Navarro; Spain
"When different organisations assess different aspects of a child's neuro-rehabilitation needs, everyone looks at things from a different perspective and have conflicting priorities"
Cathy Jonson; Rehab without Walls; United Kingdom.
"NHS clinicians struggle with what intervention to prioritise in paediatric neuro-rehabilitation due to limited clinical time and the complexity of needs. Children, clinicians, parents and schools all have different neuro-rehabilitation priorities"
Recolo; United Kingdom
"Different 'experts' involved in paediatric 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

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 Youth Foundation BBC CiN