V isual I mpairment N etwork for C hildren and Y oung P eople

1. Visual ImpairmentNetwork forChildren andYoungPeople Dr Katherine Spowart Lead Clinician

2. Managed Clinical Network • What is an MCN and what does it do? • Why do we need one? • What VINCYP will aim to achieve and how?

3. What is an MCN? • Concept from Acute Health Services Review 1997 • Health driven and funded • National ( can be regional or local) • Set up to ‘get round’ Health Board and professional boundaries • Brings together interested professionals in specialist fields • Aim to improve quality of patient care • Use resources equitably and optimally • Doesn’t deliver services but provides structure, information and standards .

4. MCN’s in Scotland • 28 National MCNs • 14 Paediatric MCNs • Children with cancer • Paediatric epilepsy • Paediatric allergy • Children with exceptional health needs • Paediatric endocrinology • Paediatric Immunology and HIV • Children with cystic fibrosis • Congenital diaphragmatic hernia • Inherited metabolic disease • Paediatric rheumatology • Genital anomaly • Paediatric renal urology network • Gender identity • VINCYP

5. Principles of an MCN • Produce benefits to patients via service improvement • Establish evidence base for care and develop standards from this • Develop protocols and share good practice through training and research • Audit impact of protocols, standards etc • Report annually on progress

6. VI MCN – WHY ? • Concern over inequity of service • Risks to current service • Workforce shortages • Training gaps • Need to improve outcomes • Pressure on all health, local authority and third sector services to improve and link better but with reduced workforce and funding.

7. Workforce • Ophthalmology - 15 out of 88 posts in Scotland vacant • Paediatrics - 77% of community paediatricians >50yrs • Orthoptics - improved recently but still vacancies • VI Teachers - 40% not qualified ( statutory requirement ) • Habilitation Specialists - some LAs have no service or provided by rehab workers with no child training

8. VINCYP - Progress • 2011 /12 - VI paediatricians approached various groups • September 2012 – first steering group • January 2013 - formal proposal submitted • April 2013 – recommended by HB Chief Executives Group for approval by Scottish Government • May 2013 – approved by Scottish Government to commence April 2014 • 30th April 2014 - Conference

9. Steering Group SPROG - Paediatric Ophthalmologists BIOS Scotland - Orthoptists Optometry Scotland VIPS - Paediatricians SCOVI (LAs and 3rd sector) SAVIE ( VI teachers organisation ) Education Scotland RNIB Hospital Optometrists, Fife Blind Society , University of Edinburgh

10. AIMS To improve services and outcomes by : • Ensuring early identification of children • Ensuring appropriate assessment through production of clinical guidelines • Developing care pathways for use nationally • Improving early notification to other agencies • Improving data collection for audit and service planning • Providing information and training to allow improvement in services • Empowering children and parents to manage care better

11. Role Leadership Standards Training Information

12. Initial Priorities Refine definition Ensure wide engagement and involvement Identify what services are available and method of access Develop system of robust data collection Identify training needs

13. Definition Best corrected VA , both eyes open 0.500 or worse Visual field loss, both eyes open, which significantly affects function Any eye movement disorder which significantly affects function Any form of cognitive visual dysfunction due to disorders of the brain which can be demonstrated to significantly affect function N18 print or larger required for comfort reading

14. Progress Discussions with all professional groups and several parents groups Commenced service mapping Draft Standards and QIs Agreed data system and developing fields Information gathering on training needs Input to Sensory Impairment Strategy Agreement to host medical information sections of current VIScotland website

15. MAPPING • Paediatricians Survey Responses received from all Health Boards holding responsibility Provided information on 29 local authority areas missing information: - South Ayrshire - Orkney - Shetland Reflective of paediatricians knowledge of services

16. Local VI Services Yes: 17 out of 29 local authority areas No: East Ayrshire, North Ayrshire, Fife, Aberdeenshire, Aberdeen City, Moray, North Lanarkshire, South Lanarkshire Don’t Know: Borders, Clackmannanshire, Stirling, Falkirk

17. Yes: 25 out of 29 local authority areas No: East Ayrshire, North Ayrshire, Western Isles Don’t know: Moray

18. Yes: 22 out of 29 local authority areas, variable content No: Borders, South Lanarkshire Don’t know: Fife, Clackmannanshire, Falkirk, Stirling, Moray

19. Yes: 19 out of 29 local authority areas No: Borders, Falkirk, Aberdeen City, North Lanarkshire Don’t know: Fife, Clackmannanshire, Stirling, Aberdeenshire, Moray, Western Isles

20. 19 of 32 LAs had a Database Database held by? education/ VI teachers health/ specialist services local authority/ social services voluntary agencies Is it reliable ? Yes – 6 No -13 databases within same local authority do not correlate

21. Is there a functional vision clinic? 23 LAs • 22 had QTVI and Paediatrician • 19 also had orthoptist Services / professions available 29 LAs had QTVI 2 HB no paediatric ophthalmologist Most areas had some way of sourcing LVAs Mobility – 26 had some access but variable and fewer for independent living Early Intervention – 2 HBs only Emotional support – rare and variable

22. Standards What is it reasonable to expect all services to provide ? Help clinicians and managers know what they should be aiming for as a minimum Help parents / YP to know what it is reasonable to expect

23. Proposed Service Standards In each eye dept there is an ophthalmologist with an identified role for children/YP with VI In each HB there is a paediatrician with identified role for children/YP with VI Children are seen in a dedicated eye clinic Children have a dedicated eye clinic waiting area

24. There is a clear pathway to access specialist assessments and investigations Written information is given to parents/young people at the time of identification of VI Letters should generally be copied to parents/young people There is a process in place to measure patient satisfaction

25. Each LA has a service for children with VI to be supported by a QTVI Each LA has a service for children with VI to be supported by a habilitation specialist There is a service within each HB which provides early intervention and support on identification of VI

26. Quality Indicators Measures of the standard of services provided Based on service standards and pathways Allow comparison against a minimum standard, against other areas and measure progress over time

27. Proposed Quality Indicators % of children seen in a dedicated childrens eye clinic % of children seen at least once by a QTVI % children seen at least once by a habilitation specialist % of under 2’s and those with acute visual loss referred to early intervention service within 1 week % of children referred to neurodisability team % of children having a VI interagency plan /discussion within 8 months of identification

28. PATHWAYS

29. VISION 2020 UK – Pathway for Children and Young People (0 to 25 years) with Vision Impairment, and their Families Identification of potential vision impairment ↓ Engagement with parent carer (and child / y p where possible) ↓ Assessment of vision impairment and/or related conditions ↓ Certification and Registration (where appropriate) ↓ Statutory assessment (education, health and social care) ↓ Service Provision – Health, Education, Social Care, Voluntary Sector ↓ Regular review and updating of provision ↓ Transition into Adult Pathway Early intervention and key working emotional support

30. Baseline VINCYP Pathway ? Optometrist GP Paediatric team HOSPITAL EYE TEAM Investigations Early intervention service Multiagency referral system Specialist paediatric service VI education service Habilitation service Emotional/ practical support Multiagency review

31. DATA • Clinical audit system • Supported national NHS Scotland system • Basic details fed in from SCI store • Limited flexibility • All children with VI to be entered • Initially 1 identified clinician per eye dept and 1 paediatrician per HB

32. CAS • Referral source • Category of visual diagnosis • Specific visual diagnosis • Co-morbidities • Investigations • Vision testing results • Interventions and Referrals • Opt out system • Access to info by other agencies on opt in basis

33. Patient Involvement • Consultation – Glasgow, Fife, Inverness • Creation of patient involvement subgroup

34. Education and Training Training needs identified via : • Mapping exercise • Professional groups • Parents feedback • Launch workshop

35. Outline Plan Stage 1 • Map current services - what is provided in all areas of health , single service and jointly? - what other services provide? - what links are there between them? • Data - what to collect and how? • Audit - identify quality indicators to measure improvement against

36. Stage 2 • Produce basic pathways of care from existing standards • Organise information and consultation event / events Stage 3 • Develop standards , protocols etc • Develop information for parents/professionals • Provide training and education • Expand/ refine pathways

37. Next Steps Identify all current services provided across HBs and LAs ( mapping group) Finalise fields for datacollection then pilot in one HB ( data group) Communication and Website development Promote basic pathway from early identification of VI , regardless of diagnosis, to supportive services locally

38. Moving Forward • Specific care pathways and guidelines • Bench- marking and measuring quality improvement • Training • Identify research required

39. VINCYP – Thoughts? • Standards? • Quality Indicators? • Pathways? • Data? • Communication, engagement and consultation ? • Training ? • Priorities / Plan ?