Visual

Impairment

Network for

Children and

Young

People

Dr Katherine Spowart Lead Clinician

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?

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 .

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 identityVINCYP

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

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.

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

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

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

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

Role

• Leadership

• Standards

• Training

• Information

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

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

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

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

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

Local VI Services

Yes: 25 out of 29 local authority areas

No: East Ayrshire, North Ayrshire, Western Isles

Don’t know: Moray

Yes: 22 out of 29 local authority areas, variable content

No: Borders, South Lanarkshire

Don’t know: Fife, Clackmannanshire, Falkirk, Stirling, Moray

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

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

Is there a functional vision clinic? 23 LAs• 22 had QTVI and Paediatrician • 19 also had orthoptist

Services / professions available 29 LAs had QTVI2 HB no paediatric ophthalmologistMost areas had some way of sourcing LVAsMobility – 26 had some access but variable and

fewer for independent livingEarly Intervention – 2 HBs onlyEmotional support – rare and variable

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

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

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

• 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

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

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

PATHWAYS

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

emotional support

Early intervention and key w

orking

Baseline VINCYP Pathway ?

HOSPITAL EYE TEAM

Paediatric teamGP

Early intervention serviceInvestigations

Multiagency referral system

Specialist paediatric service

VI education service

Habilitation service

Emotional/ practical support

Multiagency review

Optometrist

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

CAS

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

basis basis

Patient Involvement

• Consultation – Glasgow, Fife, Inverness

• Creation of patient involvement subgroup

Education and Training

Training needs identified via :

• Mapping exercise

• Professional groups

• Parents feedback

• Launch workshop

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

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

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

Moving Forward

• Specific care pathways and guidelines

• Bench- marking and measuring quality improvement

• Training

• Identify research required

VINCYP – Thoughts?

• Standards?• Quality Indicators?• Pathways?• Data?• Communication, engagement and

consultation ?• Training ?• Priorities / Plan ?