Transition for young people with complex needs in the West of BerkshireTVSCN Meeting December 2015

Dr. Sarah Hughes,

Paediatric Consultant in Neurodisability

Outline

• Where we were

• What was changed

• End result

• Ongoing questions to be resolved

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.

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

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+)

Change

• Impetuous for change:

– National agenda

– Evolution of services/desire to improve

– TVSCN implementation of Nurse post

• Patient feedback

Patient feedback

-Cohort A: Neurodisability +/or Epilepsy,

-Cohort B: Diabetes

Benchmarking questionnaires:

-72 questionnaire sent to ‘post-transition’ patients

-Cohorts A&B

Cohort A: Post Transition Questionnaire Feedback (Parents)

1

0

4

2

2

8

9

5

7

7

0 2 4 6 8 10

My child had a w ritten health transition plan

My child w as betw een 11-13 w hen transition planning started

My child had a key person to support them through transition at theRBH

The RBH supported my child w ith all aspects transition, not justtheir health transition (e.g. social, emotional, educational).

I w as satisf ied w ith the transition service w e received at the RBH

12

34

5

Que

stio

n

NumberAgree

Disagree

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

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)

Professional Name Where? When Who to Where commentPaediatrician Sarah Hughes RBH 17?Faraz Jeddi RBH ?other - depends upon plans for educationUrology surgeon Ian Willetts JR - Continues JR Urology Nurse Angela Downer JR 16 JR Adult teamSurgeon Miss Lakhoo JR 16 Adult teamNeuromuscular team Stephanie Robb GOSH 18 JR Adult Neuromuscular teamNeuromuscular team 2 Saleel Chandratre JR - - - “

Education () () 25 Staying to do A-levels; then Uni for course with EHCP

Spinal team Mr Nnadi NOC - Continues NOC Gastroenterology Peter Sullivan JR 16 JR Adult teamOrthotics – shoes Nick Gallogly RBH - Continues RBH Orthotics – spinal Nuffield NOC - Continues NOC Wheelchair services Louise Phillips RBH - Continues RBH Respiratory consultant Andrew Ives JR 16-18 RBH Adult team in Reading or OxfordRespiratory Nurse Jayne Gallagher JR 16-18 RBH Adult team in Reading or OxfordCardiologist Satish Adwani JR 16 RBH Adult team in Reading or OxfordCommunity Nurse Victoria Sturgess RBH 18 Comm District nurse.Community OT Di Brown DCT 18/25 Adult SSSocial Worker Darren Jones DCT 18/25 Adult SSDermatology Caroline Higgins RBH - continues RBH Continuing Care Team Claire Thompson CCT 18/25 Adult teamGP Dr Weaver () Continues Gynaecologist Pending JR - Continues Physiotherapy () 18 ?? Will need to transition? Via LD Nurse??Other?OT () 18 ?? Will need to transition? Via LD Nurse ??Other?Dietician Serena Burgin RBH 18 ?? Will need to transition ? Via LD Nurse ??OtherS+L Therapy () 18 ?? Will need to transition ?via LD Nurse ??OtherHips Tim Theologis NOC - Continues? Psychology Ines Banos RBH 16nil Talking therapies self referral. Issues with access.Vision Orthoptics RBH - Continues hand splints () () 18 ?? Not known ?via LD nurse ? OrthoticsRyeish claire turnbull ryeish 18 ?? No residential respite provision available.Dental Community dentist () - Continues

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.

Parent/Carers plan

16 YEAR OLD EPILEPTIC GIRL

16 YEAR OLD EPILEPTIC GIRL

Case 3

• 14 year old girl

• Mitochondrial disease

• Family history – Mother and sister have symptoms.

• Father completed questionnaires in School clinic

14 YEAR OLD GIRL WITH MITOCHONDRIAL DISORDER AND COMPLEX NEEDS

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

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

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

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

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

Any questions?