V
I
N
C
Y
P
isual
mpairment
etwork for
hildren and
oung
eople
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?
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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 identity
VINCYP
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
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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
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
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 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
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
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Each LA has a service for children
with VI to be supported by a QTVI
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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
support
Early intervention and key working
emotional
Identification of potential vision impairment
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Engagement with parent carer (and child / y p where possible)
↓
Assessment of vision impairment and/or related conditions
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Certification and Registration (where appropriate)
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Statutory assessment (education, health and social care)
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Service Provision – Health, Education, Social Care, Voluntary
Sector
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Regular review and updating of provision
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Transition into Adult Pathway
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
Multiagency review
Emotional/
practical support
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
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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
Patient Involvement
• Consultation – Glasgow, Fife, Inverness
• Creation of patient involvement
subgroup
Education and Training
Training needs identified via :
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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?
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Standards?
Quality Indicators?
Pathways?
Data?
Communication, engagement and
consultation ?
• Training ?
• Priorities / Plan ?