1. Transition for young people with complex needs in the West of Berkshire TVSCN 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. -Cohort A: Neurodisability +/or Epilepsy, -Cohort B: Diabetes Benchmarking questionnaires: -72 questionnaire sent to ‘post-transition’ patients -Cohorts A&B

9. Engage young people and parents in developing a transition service (cont.) 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

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)

13. ProfessionalNameWhere?WhenWho toWherecomment PaediatricianSarah HughesRBH17?Faraz JeddiRBH?other - depends upon plans for education Urology surgeonIan WillettsJR -ContinuesJR Urology NurseAngela DownerJR16JRAdult team SurgeonMiss LakhooJR16 Adult team Neuromuscular teamStephanie RobbGOSH18 JRAdult Neuromuscular team Neuromuscular team 2Saleel ChandratreJR---“ Education() 25 Staying to do A-levels; then Uni for course with EHCP Spinal teamMr NnadiNOC -ContinuesNOC GastroenterologyPeter SullivanJR16 JRAdult team Orthotics – shoesNick GalloglyRBH-ContinuesRBH Orthotics – spinalNuffieldNOC-ContinuesNOC Wheelchair servicesLouise PhillipsRBH-ContinuesRBH Respiratory consultantAndrew IvesJR16-18 RBHAdult team in Reading or Oxford Respiratory NurseJayne GallagherJR16-18 RBHAdult team in Reading or Oxford CardiologistSatish AdwaniJR16 RBHAdult team in Reading or Oxford Community NurseVictoria SturgessRBH18 CommDistrict nurse. Community OTDi BrownDCT18/25 Adult SS Social WorkerDarren JonesDCT 18/25 Adult SS DermatologyCaroline HigginsRBH-continuesRBH Continuing Care TeamClaire ThompsonCCT18/25 Adult team GPDr Weaver() Continues GynaecologistPendingJR-Continues Physiotherapy ()18 ??Will need to transition? Via LD Nurse??Other? OT ()18 ??Will need to transition? Via LD Nurse ??Other? DieticianSerena BurginRBH18 ??Will need to transition ? Via LD Nurse ??Other S+L Therapy ()18 ??Will need to transition ?via LD Nurse ??Other HipsTim TheologisNOC-Continues? PsychologyInes BanosRBH16nil Talking therapies self referral. Issues with access. VisionOrthopticsRBH-Continues hand splints() 18 ??Not known ?via LD nurse ? Orthotics Ryeishclaire turnbullryeish18 ??No residential respite provision available. DentalCommunity dentist()-Continues

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. Parent/Carers plan 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?