Transition for Young People with Complex Needs in West Berkshire

1. Transition for young people with complex needs in the West of BerkshireTVSCN Meeting December 2015 Dr. Sarah Hughes, Paediatric Consultant in Neurodisability

2. Outline • Where we were • What was changed • End result • Ongoing questions to be resolved

3. West of Berkshire 600,000 population • Reading – highest non-UK born population / highest immigration rates in 2012 • West Berkshire – high levels of rural poverty • Wokingham – most expensive houses and best QOL in surveys 2014.

4. 2012 • Previous ND transfer clinic had stopped with staffing retirement around 2008 • No formal trust strategy for transition • By 2012, • Re-engagement with adult counterparts. • Start of twice yearly ND transfer clinic. • Selected by Paediatricians • At 17/18 years old • Clinic: • Medical information shared • Paed/Adult consultant • Patient and family present

5. 2013 • Epilepsy transition clinic established • Patients selected from any Paediatric clinic with a diagnosis of Epilepsy • Patients referred into Epilepsy transition clinic • Clinic: • Paed/Adult Consultants • Epilepsy Nurse • Patient and family • Transition Nurse (2015+)

6. Change • Impetuous for change: • National agenda • Evolution of services/desire to improve • TVSCN implementation of Nurse post • Patient feedback

7. Patient feedback • Cohort A: Neurodisability +/or Epilepsy, • Cohort B: Diabetes Benchmarking questionnaires: • 72 questionnaire sent to ‘post-transition’ patients • Cohorts A&B

9. Adult ward / OP environments Unfamiliar adult wards Old people can be scary, Adult services may not be as caring How self advocacy will be encouraged in an unfamiliar, busy environment Different consultants at every appointment in adult service Transfer clinics Not enough joint clinics with adults and paediatric consultants Transferred to adults without support and proper planning Information giving Signposting to available services post 18 to be available allowing informed choice No clear pathway and who they will be referred to post transition Other There is uncertainty about the future Worried about changes to funding of services such as OT not enough regular appointments in the adult service Engage young people and parents in developing a transition service (cont.)

11. Current Setting - ND • Referred in by Paediatric Consultant • Preparation: Parent and child aware; template of information • Setting: Familiar clinic room • Patient, Family, Paediatrician, Physician, • More recently: Transition Nurse, Adult LD Nurse (Social Services)

14. Case 2 • 16 year old girl with epilepsy (JME) • Offered RSGo questionnaires at the clinic prior to transfer clinic. • September Epilepsy transfer clinic – 50% of the young people could not explain their diagnosis • November Epilepsy Transfer clinic – reduced numbers of questions about their diagnosis.

15. 16 YEAR OLD EPILEPTIC GIRL Parent/Carers plan

16. 16 YEAR OLD EPILEPTIC GIRL

17. Case 3 • 14 year old girl • Mitochondrial disease • Family history – Mother and sister have symptoms. • Father completed questionnaires in School clinic

18. 14 YEAR OLD GIRL WITH MITOCHONDRIAL DISORDER AND COMPLEX NEEDS

19. Case Study 4 18 year old male Complex Neurodisability Cerebral palsy GMFCS Level 5 Severe learning difficulties Epilepsy Motor issues: scoliosis, dislocated hip Vision: left convergent squint Sleep difficulties Gastrointestinal problems: reflux

20. Case – current management Attends local school for children with special needs, with services including: PT OT SALT Surgical: spine and hip, via NOC Medications: Sodium valproate 600mg bd Senna Callogen 10ml tds Melatonin 2mg Ranitidine 150mg bd Diazepam 10mg for emergencies

21. Case – transition to adult care • Attended transition clinic in June 2015 • Not exposed to RSGo. • Referrals arranged for adult PT/OT/SALT in clinic • Lots of discussion regarding long term placements in the clinic • Introduction to adult neurorehabilitation physician • Issues: • Family arrived relatively recently from outside UK • Insufficient time to prepare family for transition • Referrals to SALT etc. unsuccessful since Pt still attending school • Mother was unhappy with the process

22. Lessons Early transition planning and RSGo programme could have offered: • Reduced anxiety for mother and son • Improved signposting adult services (pathway mapping) • Improved preparation for adulthood • Improved continuity of care • Improved communication between services • Patient and parents expectations better managed through education and gradual preparation for transition

23. Current Issues and Proposed plans • Increased use of RSGo by all team members • Posters to advise parents of RSGo. • Use of database for forward planning of transfer clinics • Continue to build links with services to gain better information • Development of ACP for transition • Flagging of YP in transition on EPR • Development of “Transition Marketplace” in Spring 2016 • Aim to provide evidence to maintain Transition Nurse post • Working with LA (pan berks) to develop transition strategy • Supply of information to the Local Offer • Re-survey

24. Any questions?