Transcript Sarah HughesTVSCN presentation S Hughes Dec 2015

Transition for young people with complex
needs in the West of Berkshire
TVSCN 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)
Number
1
My child had a w ritten health transition plan
2
My child w as betw een 11-13 w hen transition planning started
3
My child had a key person to support them through transition at the
RBH
4
The RBH supported my child w ith all aspects transition, not just
their health transition (e.g. social, emotional, educational).
5
Question
0
I w as satisfied w ith the transition service w e received at the RBH
2
4
6
Agree
Disagree
8
10
1
8
0
9
4
5
2
7
2
7
Engage young people and parents in developing a transition service (cont.)
Adult ward / OP environments
Information giving
•
Unfamiliar adult wards
•
•
Old people can be scary,
Signposting to available services post
18 to be available allowing informed
choice
•
Adult services may not be as caring
•
•
How self advocacy will be encouraged
in an unfamiliar, busy environment
No clear pathway and who they will be
referred to post transition
Other
•
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
•
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
Paediatrician
Urology surgeon
Urology Nurse
Surgeon
Neuromuscular team
Neuromuscular team 2
Education
Spinal team
Gastroenterology
Orthotics – shoes
Orthotics – spinal
Wheelchair services
Respiratory consultant
Respiratory Nurse
Cardiologist
Community Nurse
Community OT
Social Worker
Dermatology
Continuing Care Team
GP
Gynaecologist
Physiotherapy
OT
Dietician
S+L Therapy
Hips
Psychology
Vision
hand splints
Ryeish
Dental
Name
Sarah Hughes
Ian Willetts
Angela Downer
Miss Lakhoo
Stephanie Robb
Saleel Chandratre
()
Mr Nnadi
Peter Sullivan
Nick Gallogly
Nuffield
Louise Phillips
Andrew Ives
Jayne Gallagher
Satish Adwani
Victoria Sturgess
Di Brown
Darren Jones
Caroline Higgins
Claire Thompson
Dr Weaver
Pending
Where?
RBH
JR
JR
JR
GOSH
JR
()
NOC
JR
RBH
NOC
RBH
JR
JR
JR
RBH
DCT
DCT
RBH
CCT
()
JR
()
()
Serena Burgin
RBH
()
Tim Theologis
NOC
Ines Banos
RBH
Orthoptics
RBH
()
()
claire turnbull
ryeish
Community dentist ()
When Who to
Where
17?Faraz Jeddi RBH
Continues JR
16
JR
16
18
JR
25
Continues NOC
16
JR
Continues RBH
Continues NOC
Continues RBH
16-18
RBH
16-18
RBH
16
RBH
18
Comm
18/25
18/25
continues RBH
18/25
Continues
Continues
18
??
18
??
18
??
18
??
Continues?
16nil
Continues
18
??
18
??
Continues
comment
?other - depends upon plans for education
Adult team
Adult team
Adult Neuromuscular team
“
Staying to do A-levels; then Uni for course with EHCP
Adult team
Adult team in Reading or Oxford
Adult team in Reading or Oxford
Adult team in Reading or Oxford
District nurse.
Adult SS
Adult SS
Adult team
Will need to transition? Via LD Nurse??Other?
Will need to transition? Via LD Nurse ??Other?
Will need to transition ? Via LD Nurse ??Other
Will need to transition ?via LD Nurse ??Other
Talking therapies self referral. Issues with access.
Not known ?via LD nurse ? Orthotics
No residential respite provision available.
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.
16 YEAR OLD EPILEPTIC GIRL
Parent/Carers plan
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
Medications:
Sodium valproate 600mg bd
Senna
Callogen 10ml tds
Melatonin 2mg
Ranitidine 150mg bd
Surgical: spine and hip, via NOC
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
• Flagging of YP in transition on
EPR
• Posters to advise parents of
RSGo.
• Development of “Transition
Marketplace” in Spring 2016
• Use of database for forward
planning of transfer clinics
• Aim to provide evidence to
maintain Transition Nurse post
• Continue to build links with
services to gain better
information
• Working with LA (pan berks) to
develop transition strategy
• Development of ACP for
transition
• Supply of information to the
Local Offer
• Re-survey
Any questions?