1. Acquired Brain Injury in Childhood – Back to the beginning Anna Maw Consultant Paediatric Neurologist CUH/CPFT

2. Overview Acquired brain injury in childhood Background to this project (what I thought I was going to learn) Project method Findings and thoughts Where next ?

3. Acquired Brain Injury in childhood – Background Lifelong condition with lifelong implications Recovery and rehabilitation have different aims in childhood – “back to normal” is never enough Many consequences remain hidden or unrecognised for many years –silent disability

4. DEVELOPMENT Impairment Physical disability Mood Cognition Behaviour Impulsivity Poor concentration Social judgement Planning and organisation Consequences Loss of social participation Family strain School failure Offending behaviour Acquired Brain Injury – Complex needs in a complex system Increased contact with services Youth Justice Education Social CareHealth Third Sector

5. Who gets severe acquired brain injury? How do they injure their brains? What problems and deficits are they left with? What is their service user journey? What service needs do they have? What is the best configuration of services to meet those needs? www.inclusivedesigntoolkit.com

6. Paediatric Intensive Care Unit (PICU) Data Aim to identify – children with first presentation of a condition which carries a significant risk of acquired brain injury. – PICU admission as a proxy marker of severity. Admission data from 2007-2011 2723 admissions Phase 1 – exclude all children with clearly unrelated conditions Phase 2 – exclude re-admissions, elective admissions, children who died on PICU and children with primary oncology diagnosis Phase 3 – group children into broad diagnostic categories Phase 4 – review electronic medical records, lab results, imaging – CT, MRI of each case to ensure correct diagnosis. Further exclusions Final cohort 253 children age 0-16 154 boys, 99 girls

7. Acquired Brain Injury by diagnosis

8. Young patients Very severely injured High mortality – 10 died Global brain injury High level of physical need 13 of 19 patients are aged 2 or under.

9. Lancet Neurol.Lancet Neurol. 2012 Sep;11(9):774-83. Epub 2012 Aug 3. Outcomes of invasive meningococcal serogroup B disease in children and adolescents (MOSAIC): a case-control study. Viner RMViner RM, Booy R, Johnson H, Edmunds WJ, Hudson L, Bedford H, Kaczmarski E, Rajput K, Ramsay M, Christie DBooy RJohnson HEdmunds WJHudson L Bedford HKaczmarski ERajput KRamsay MChristie D about a tenth have major disabling deficits more than a third have one or more deficits in physical, cognitive, and psychological functioning, with the additional burden of memory deficits and executive function problems

10. Traumatic Brain Injury - 130 cases

11. 30% are under 1 year 46% are age 4 or under What do we tell them about the lifetime risk of problems? How do we keep track of them over time?

12. Severe global brain injury Complex medical and nursing needs. Special educational needs. Regular ongoing multi-disciplinary care. Good early physical recovery. High risk of “hidden”focal injury Change in behavioural, educational and emotional profile. Initial surveillance and information. Brain injury passport Pre-school children with early brain injury Very vulnerable.Poor institutional memory. Loss of diagnosis over time Flagging of health records. Parent- held passport.

13. Who gets severe acquired brain injury? How do they injure their brains? What problems and deficits are they left with? What service needs do they have? What is their service user journey? What is the best configuration of services to meet those needs?

14. Many thanks to: Andrew Bateman Tony Holland Fergus Gracey Terry Dickerson Cecily Morrison

15. Acquired Brain Injury Pathway for Children PICUWard Local rehabilitation provision Local team or specialist rehab centre Follow-up School, training Jobs Discuss with local team - named contact for each locality Initial high intensity nursing care Ongoing specialist therapy input Discuss with commissioners ABI Passport Community Paediatrics Neurology Endocrine CCPNR Third sector Adult services Assessment and Discharge Planning tool – Pilot MDT with 2-3 weeks notice, involving local team CBIT child and family worker

18. Usually focal brain injury May make a good early physical recovery Risk of significant cognitive difficulties Lots of research data on stroke No reports in the literature relating to outcome following abscesses in children. Persona samples

20. CLAHRC NIHR Project 9 collaborations around the country research focused on the needs of patients and service users to support the translation of research evidence into practice in the NHS Emphasis on Mental Health