nmcn annual report - vincyp.scot.nhs.uk · 3.4.2 visual impairment training course part 1 this is a...

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Visual Impairment National Managed Clinical Network for Children & Young People

(VINCYP)

ANNUAL REPORT 2019/2020

Lead Clinician: Dr Margot Campbell

Programme Manager: Tassadaque Masood

Programme Support Officer: Christopher Williamson

Data Analyst: Gavin Hallford

Visual Impairment Network for Children & Young People (VINCYP): Annual Report 2019/20

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Contents

1. Executive Summary .................................................................................................................................. 3

2. Introduction ............................................................................................................................................... 5

3. Report on Progress against Network Objectives in 2019/2020 .................................................................. 6

3.1. Effective Network Structure and Governance ..................................................................................... 6

3.1.1 VINCYP Core Team ...................................................................................................................... 7

3.1.2 Network Steering Group ............................................................................................................... 7

3.1.3 VINCYP Working Groups .............................................................................................................. 7

3.1.4 Data Group ................................................................................................................................... 8

3.1.5 Family Engagement Group ........................................................................................................... 8

3.1.6 Services & Standards Group ......................................................................................................... 8

3.1.7 Education and Training Group ...................................................................................................... 9

3.1.8 Network Governance .................................................................................................................... 9

3.2 Service Development and Delivery ...................................................................................................... 9

3.2.1 Mapping Reports .......................................................................................................................... 9

3.2.2 Early Intervention Services ......................................................................................................... 10

3.3 Communication and Engagement ..................................................................................................... 10

3.3.1 Network Branding ....................................................................................................................... 11

3.3.2 Patient Information & Involvement .............................................................................................. 12

3.3.3 Parent Representation ................................................................................................................ 13

3.3.4 VINCYP Social Media ................................................................................................................. 13

3.3.5 VINCYP Website ........................................................................................................................ 15

3.4 Education .......................................................................................................................................... 15

3.4.1 Visual Impairment Training Course ............................................................................................. 15

3.4.2 Visual Impairment Training Course Part 1 ................................................................................... 16



3.4.5 Education Strategy...................................................................................................................... 17

3.5 Audit and Continuous Quality Improvement....................................................................................... 17

3.5.1 VI Scotland Medical Information Documents ............................................................................... 17

3.5.2 Clinical Audit System (CAS) ........................................................................................................ 18

3.5.3 Transition Letters from CAS ........................................................................................................ 20

3.5.4 Scottish Government CAS Reporting .......................................................................................... 20

3.6 Value ................................................................................................................................................. 20

3.7 Network Spend .................................................................................................................................. 20

3.8 Risks ................................................................................................................................................. 20

4. Plans for the Year Ahead ........................................................................................................................ 21


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4.1 Service Development and Delivery .................................................................................................... 21

4.2 Communication and Engagement ..................................................................................................... 21

4.3 Education .......................................................................................................................................... 21

4.4 Audit and Continuous Quality Improvement....................................................................................... 21

4.5 Value ................................................................................................................................................. 22

Appendix 1- Children and Young people in Scotland with a Visual Impairment (2500) ................................ 23

Appendix 2- Network Steering Group Membership ..................................................................................... 24

Appendix 3- National Commissioning Governance for National Networks .................................................. 25

Appendix 4 – (NSD610-001.04) VINCYP NMCN 5 Year Workplan 2017–2020 .......................................... 26

Appendix 5. Detailed Description of Progress in 2019/2020 ........................................................................ 27

Appendix 6. Draft Work Plan for 2020/2021 ................................................................................................ 37

Appendix 7: Stakeholder Map ..................................................................................................................... 48

Appendix 8: Finance ................................................................................................................................... 51


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1. Executive Summary

This report provides an analysis and evaluation on how the VINCYP network has progressed against its

objectives. VINCYP has seen challenges, with limited support from the National Network Management

Service (NNMS) from August 2019, pending the appointment of dedicated Programme Manager and

Programme Support Officer- who were appointed in the last quarter of the reporting period.

But, moving into the new financial year, there is renewed optimism on continuing the successful delivery of

the VINCYP network strategic objectives.

VINCYP identified the following significant achievements:

Reports mapping services for visually impaired (VI) children and young people in each Local

Authority area in Scotland were completed and published on the website along with summary

reports for each Health Board

The specialist training course in childhood VI for health professionals was run by the network in

collaboration with the Scottish Sensory Service (SSC) and Department of Ophthalmology, University

of Edinburgh in June. Following this, four paediatricians with a specific interest in VI commenced the

subsequent mentoring programme in September

The number of children added to the VINCYP clinical audit system (CAS) data base continued to

increase – 1075 have now been notified

A report of CAS data was submitted to Scottish Government. Scottish Government requires this

data on children with VI along with data from the adult certificate of vision impairment (CVI) process

to inform policy and planning

Self-assessment frameworks relating to the VINCYP standards for Education, Habilitation and for

access to specialist assessments, investigations and support were compiled to support individual

professionals and teams providing services to children and young people with VI- to benchmark

where they are with their own service against the VINCYP standard, and to consider how to improve

their practice

An additional VINCYP standard - standard 12 - was agreed by the steering group - in each Local

Authority, Health, Education, Habiltation and VI support agencies, meet on a regular basis to identify

and review the needs of each individual child with VI, and produce an interagency advisory report

for each child within 8 months of identification of VI


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An example interagency advisory report proforma was compiled and will be posted on the

website following final approval by the steering group

The network team also acknowledge the unfortunate circumstances of the current crisis. Since February

2020, understandably NHS Scotland’s priority has been to prepare for and deal with COVID-19 impact and

this has seen clinical and other resource diverted from network activity.

The network has undertaken an exercise to not only capture the impact of this unprecedented situation on

the current reporting period, but also to assess the likely impact on delivery of the 2020/2021 workplan.

This assessment has resulted in a two-pronged approach- where key activities will continue to be

progressed, but certain objectives will be placed on hold.

Looking towards the future workplan, priorities for the coming year will be to:

Re-define and document the content and layout of tools and templates, which is the precursor to

refreshing the mapping reports

Identify good practice for early intervention and produce guidance for professionals

Continue to be visible and integrated into the VI community and its stakeholders

Collate pertinent information for young people and families on the VINCYP website

Deliver and plan the provision of key training courses for staff from a range of professions

Have a fully endorsed education strategy

VINCYP will continue to work with the 14 regional National Health Service (NHS) Boards that report

to the Scottish Government- to ensure data collection and inaccuracies are corrected; and data is

continued to be inputted to the system

Provide CAS data for Scottish Government for publication along with adult registration data

Produce a VINCYP pro-forma for Interagency Advisory Reports (as in Standard 12) to support

professionals in their local interagency teams

Produce a sample/suggested referral form for the ophthalmologist or VI paediatrician diagnosing

visual impairment to refer to community visual impairment services.

It is anticipated that the key steps and objectives this network will take forward, will help improve and

support VI services across Scotland.


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2. Introduction The Visual Impairment Network for Children and Young People (VINCYP) was approved as a National

Managed Clinical Network (NMCN) by the National Specialist Services Committee in June 2013, with

formal designation commencing on 1st April 2014. It was established in response to the recommendations

of the Community Eyecare Review 20061.

Key achievements of the VINCYP network have been:

In April 2018, further to the introduction of the new Certificate of Visual Impairment for Adults which

meant that children under 16 were no longer registered as sight impaired, Scottish Government

identified the VINCYP pathway and CAS as the mechanism for notifying children / young people

with a VI in Scotland

The VINCYP mapping exercise that was conducted between November 2017 and May 2018;

identified what services are available to children and young people in each geographical area

The network refreshed its well established website

Through its Quality Strategy, VINCYP identified a range of initiatives designed to accelerate

improvement in specific areas. The network is progressing well with reviewing a suite of Medical

Information Documents to explain different eye conditions to parents and professionals supporting

children with a VI

The Services and Standards group refreshes and promotes Scotland-wide VINCYP standards and

pathways for the care of children with VI which were agreed in 2015

Establishing relevant courses that address educational needs for health and non-health care

professionals from all disciplines and agencies

Through its achievements in 2019/2020 and work planned for the coming year, VINCYP is well placed to

achieve its long term objectives and improve levels of care for those living in Scotland with VI.

1 http://www.gov.scot/Publications/2006/12/13102441/0


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3. Report on Progress against Network Objectives in 2019/2020

National networks have agreed core objectives that reflect the Scottish Government’s expectations for

Managed Clinical Networks (MCN), as described in CEL (2012) 292. The network’s core objectives are:

1. Design and ongoing development of an effective network structure that is organised, resourced and

governed to meet requirements in relation to Scottish Government Health and Social Care

Directorates (SGHSCD) Guidance on MCNs (currently CEL (2012) 29) and national commissioning

performance management and reporting arrangements

2. Support the design and delivery of services that are evidence based and aligned with current

strategic and local and regional NHS planning and service priorities

3. Effective Stakeholder Communication and Engagement through design and delivery of a written

strategy that ensures stakeholders from Health, Social Care, Education, the Third Sector and

Service Users are involved in the network and explicitly in the design and delivery of service models

and improvements

4. Improved capability and capacity in care delivered to individuals with VI through design and delivery

of a written education strategy that reflects and meets stakeholder needs

5. Effective systems and processes to facilitate and provide evidence of continuous improvement in

the quality of care, including the development of a written quality improvement strategy

6. Generate better value for money in how services are delivered

This report will now give an update on progress against these objectives in the year 2019/2020. A detailed

report against the annual workplan can be found in Appendix 5.

3.1. Effective Network Structure and Governance

VINCYP has an established network structure in line with National Commissioning Governance for National

Networks.

2 Please see: https://www.sehd.scot.nhs.uk/mels/CEL2012_29.pdf

https://www.sehd.scot.nhs.uk/mels/CEL2012_29.pdf


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3.1.1 VINCYP Core Team

The role of the Lead Clinician is conducted by Dr Margot Campbell, who was appointed in June 2017. Dr

Campbell provides two PA/sessions per week to the network. Dr Campbell, also provides clinical expertise

and leadership in the ongoing development of the network, and is accountable, on behalf of the steering

group, for network performance in meeting agreed aims and objectives.

During the reporting period Dr Campbell’s tenure as Lead Clinician for VINCYP was due to expire in June

2020. An initial proposal from the steering group to extend the period of tenure by six months to facilitate

business continuity, was endorsed by National Services Division (NSD) as commissioners. In light of the

COVID-19 pandemic, this has been extended further to 01st June 2021.

Following the resignation of the Programme Manager in August 2019, efforts to seek a permanent

replacement were complicated by a number of factors. A limited resource was made available through the

NNMS to support delivery of network priorities, In March 2020 the Programme Manager, Mr Tassadaque

Masood and Programme Support Officer, Christopher Williamson were appointed. Mr Gavin Hallford is the

Data Analyst for the network.

3.1.2 Network Steering Group

The steering group provides direction to the network team and is chaired by the Lead Clinician. The

steering group has a wide ranging membership, which enables communication and cross discipline co-

operation. This includes professionals working in health, education, social work, voluntary sector

organisations, parents/carers of children and young people with VI.

They act as a conduit for communication and decision-making between the NMCN and the professional

groups/geographical area/NHS Board and/or other structure/body they represent. Please see Appendix 2

for further information on the steering group.

For VINCYP, the steering group successfully met quarterly; in June-2019, September-2019 and December-

2019. However, during the reporting period, the March-2020 meeting had to be postponed due to the

COVID-19 pandemic. Accordingly, this has resulted in the re-scheduling of all future steering group

meetings.

3.1.3 VINCYP Working Groups

VINCYP has four active sub-groups that aims to meet three times a year. They work closely with the


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steering group, and their aim is to ensure effective delivery of the work plan. The four sub-groups in the

network are:

Data Group

Family Engagement Group

Services and Standards Group

Education and Training Group

The purpose of each group is detailed below:

3.1.4 Data Group

To develop, monitor and update a system of data collection for children with VI which is reliable,

accessible and provides the information required to provide accurate population information,

condition/child specific information and against which standards can be measured

To audit information and provide reports on this

To monitor, report on and update the quality indicators

To link with services and standards subgroup to ensure standards are measurable

3.1.5 Family Engagement Group

To consult with patients/ parents on their views

To consult on website content and make recommendations regarding how the website is used

To ensure true involvement in the direction of the network by capturing what the key challenges are

for children who have a VI

3.1.6 Services & Standards Group

To develop, monitor and update standards of service provision for children across Scotland

To link with the Data Group to ensure standards are measurable

To identify current guidelines available and review these

To identify guidelines and pathways required and their priority

To produce guidance for professionals across agencies and parents related to children with VI,

having reviewed the evidence and consulted upon these

To identify services for VI children available in each area across Scotland

To identify routes and pathways to and within services

To identify what is provided by these services and the qualifications/ experience of professionals

providing them


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To provide reports on above and highlight areas of good practice or concern

To identify changes/ developments which would lead to improvement and equity of access to

services across Scotland

3.1.7 Education and Training Group

To identify current training available to professionals and parents

To identify gaps in current training, identify training needs and prioritise these

To identify and develop training materials/ provision which meets the needs identified

During the current reporting year, the majority of the working group meetings were successfully conducted

as planned. However, at present, developments of COVID-19 in Scotland have resulted in the re-

scheduling of all future sub-group meetings.

3.1.8 Network Governance Performance monitoring for NMCNs is part of national commissioning processes. It is based on effective

ongoing communication between the NMCN and NNMS throughout the year, undertaken within a cycle of

bi-annual formal reporting and an annual performance review meeting between the steering group and

National Services Division (NSD).

Appendix 3 sets out the governance arrangements for NMCNs, which are designated through the national

commissioning processes.

3.2 Service Development and Delivery

3.2.1 Mapping Reports

The VINCYP mapping exercise, was initiated in November 2017 and was finalised in May 2018. These

reports identified what services are available to children and young people in each geographical area- while

also exploring ways to encourage NHS Boards and Local Authorities to address identified gaps, in order to

improve local provision (in line with VINCYP standards).

The Family Engagement Group (FEG) have used the reports to scope current provision and best practice

for early intervention services across Scotland.

Also, during 2019/2020, the network completed highlight reports for each Health Board.


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It was agreed at the network Annual Performance Review (APR), that refreshing the current mapping

reports would be moved from 2019-2020 to 2020-2021 as a more realistic timeframe. This decision was

ratified by the steering group on 20th September 2019.

3.2.2 Early Intervention Services

By March 2020, the network endeavoured to review mapping reports to ascertain what early intervention is

happening in different areas.

The Lead Clinician wrote a paper for the FEG meeting. However, the meeting on the 28th November 2019

was cancelled due to a lack of available resource and support.

However, the FEG group have been tasked with identifying good practice and guidelines for early

intervention and this activity will be taken forward in the 2020/2021 work plan.

3.3 Communication and Engagement

During this year, VINCYP undertook a review of the communication strategy. Similarly, throughout

2019/2020, the network has continued to be visible, integrated and raise its profile during the reporting

period through engaging with families and external NHS stakeholders by attending the following events.

Scottish Vision Strategy Conference 2020: A Scottish Sight Loss Sector Conference, Towards a

Scottish Vision Strategy, 3 March 2020

Education and Children's Services Workshop - this workshop will cover support available to children

and young people with vision impairment, their families and the professionals who work with them

International Symposium on Physical Activity and Individuals with Visual Impairments or

Deaf/blindness May 19th 2019 Overview of Visual Impairment in Scotland. VINCYP, Edinburgh

Invited Speaker on Cerebral Visual Impairment. AER Louisville Kentucky. 17th June. Brain Based

Visual Impairment in Scotland. VINCYP USA

Invited Speaker, Visual Impairment Paediatricans Scotland Group. Overview of Visual Impairment in

Scotland. VINCYP, Edinburgh 6th December 2019

Invited Speaker Scottish Government 18th March 2020. Overview of Visual Impairment in Scotland.

VINCYP, Edinburgh (Postponed due to Covid-19 to October 2020)


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VINCYP Data presented on University of Edinburgh Teaching Courses

o Cerebral Visual Impairment. (September to December 2019)

o Inclusion on Policy and Practice (January 2020 – May 2020)

UK-EGG Conference, Glasgow 8th November 2019

Visual Impairment Network for Children & Young People - Overview of causes of childhood visual

impairment in Scotland with a focus on genetic disorders

SAVIE meeting, Edinburgh, 7th June 2019- VINCYP minimum detection test- VINCYP CAS data

Poster presentation at BIPOSA- British Isles Paediatric Ophthalmology & Strabismus Association

conference, Edinburgh, 4th October 2019.

Title- Structured Visual Assessment of Children with Severe Visual Impairment and/or Multiple

Disability (included video demonstration of the use of the VINCYP Minimum Size Detection Test)

Scottish Paediatric Ophthalmology Group annual meeting, Perth, 8th March 2019

Title – VINCYP - Access to VI Services, Benefits for VI children and CAS Data

Visual Impairment Paediatricians Scotland Meeting 6th December 2019, Edinburgh

Title- VINCYP Update

British Academy of Childhood Disability Annual Conference, Sheffield, 13th March 2020

Title - VINCYP - Supporting Visually Impaired Children from Identification to Post School Transition

Scottish Disability Sport Meeting- VINCYP continued to take part in the Scottish Disability Sport

Meetings. The Programme Manager provided updates on network work and continued to act as a

channel between these two groups for information sharing on upcoming events and activities which

were shared on the network website.

A full stakeholder map is available in Appendix 7.

3.3.1 Network Branding

This year VINCYP took the decision to re-brand in line with anticipated changes to legislative requirements,

this included updating all VINCYP communications materials which were created in conjunction with


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National Services Scotland (NSS) communications team. All materials have been accessibility checked to

ensure they are readable on screen readers and for those with a VI.

Below are some photos of the postcards and poster:

3.3.2 Patient Information & Involvement Throughout this reporting year VINCYP continued to collate examples of good practice for young people

transitioning to adult services- key successes included:

Ongoing collaboration with Third Sector Organisations to continue to strengthen links

Reviewed personal project framework for young people at transition used in Tayside

Identified links to relevant documents relating to ‘transition' to adult services


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3.3.3 Parent Representation

It is hoped that there will be an increase in direct parent and young people input to the group, by extending

the membership. It was agreed parent membership of the FEG group would be the starting point.

3.3.4 VINCYP Social Media

The VINCYP network has started the process to increase its social media presence, specifically on the

twitter page. These posts are mainly done through the National Managed Clinical Children and Young

People Networks at @CYPNMCN. Posts relevant to the work of VINCYP are highlighted using the hashtag

“VINCYPScotland”.

As a direct result of work completed by our new Programme Support Officer, our Twitter account has seen

considerable growth in interactions in the first quarter of 2020; from 7,900 impressions in December 2019 to

20,000 by March 2020. During the same period our following grew with 76 new professionals and

organisations interacting with us on this site.

We are also posting regular information and published helpful links to official sources of information and

guidance. Below is a selection of online tweets, which include tweets related to COVID-19:

https://twitter.com/CYPNMCN


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3.3.5 VINCYP Website VINCYP continues to communicate with stakeholders through our well-established website, which is used

by parents and professionals to search for up to date relevant information. (https://www.vincyp.scot.nhs.uk).

During 2019/2020 total page views for the VINCYP website was 16,413, which is a 129% increase from the

previous year. A full list of website statistics can be found below:

3.4 Education

3.4.1 Visual Impairment Training Course

During the reporting period VINCYP progressed development of their specialist course in childhood VI in

collaboration with the University of Edinburgh, SSC and Department of Ophthalmology at the University of

Edinburgh. This course takes the format of 3 parts.

https://www.vincyp.scot.nhs.uk/


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3.4.2 Visual Impairment Training Course Part 1

This is a three-day course which is available to health and non-health care professionals from all disciplines

and agencies (social work), that work with children and young people with VI. Part 1 of the course has been

prepared to enable it to be delivered in 2020.


This course is available to health professionals with an interest in VI; the first cohort commenced in June

2019 and was full. Also, 31 professionals attended the course and all the delegates completed an

evaluation as to how relevant the course had been for their educational needs.

Feedback received recorded an average score of 4.57 in the relevance of training for their educational

needs. The course was rated on a scale of 1-5; with 1 being not relevant and 5 being Excellent.

The following qualitative feedback was also received:

‘Absolutely hugely valuable’

‘Excellent Course.’

‘Really enjoyed practical sessions with course’


This training course is available to health professionals who are actively involved in the assessment,

diagnosis and management of children and young people with VI. This mentoring training runs over a year,

and includes the opportunity for work based mentorship and three monthly tutorials, alongside online

resources. Four participants enrolled on Part 3 of the course which began in September 2019.

At the VINCYP APR, it was recommended moving the generic training course from 2019 to 2020; and

running the specialist course in 2021 instead of 2020.

The recommended changes were agreed by the VINCYP steering group in September 2019 and will be

reflected in the annual work plan for 2020/2021 (further information can be found in Appendix 6).

Finally, the network will continue to communicate details of all training courses to members on the VINCYP

website.


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3.4.5 Education Strategy There were plans to write an education strategy and implementation plan that develops and enriches the

education opportunities for the wider professionals, working within VI.

These key documents have been drafted and are awaiting modifications and finally endorsement by the

steering group. However, due to resource challenges the Coronavirus (COVID-19) conditions in Scotland,

future key stakeholder engagement events and meetings are postponed.

Furthermore, this objective will require further work to explore and identify what can be delivered in

2020/2021

3.5 Audit and Continuous Quality Improvement

3.5.1 VI Scotland Medical Information Documents At inception, VINCYP took responsibility for 80 information documents produced by Visual Impairment

Scotland (VIS) for parents and professionals who support children with a VI. The Assistant Programme

Manager within NNMS has taken strategic oversight of the network objective to have all the documents

reviewed and updated by 2020. As at October 2019, initial work has identified a number of documents that

are no longer required and some 30 remain outstanding.

However, further evaluation has identified the following five documents have been ‘updated’ and ‘reviewed’

by the relevant clinicians, Nystagmus

Ocular Motor Apraxia

Uveitis

Lebers Con am

Retinal Detachment

The following 8 documents have been ‘updated’ but have yet to be ‘reviewed’ by the relevant clinicians

Macular Dystrophy

Retinoblastoma

Corneal Dystrophy

Glaucoma

CHARGE Syndrome

Coloboma

Retinopathy of Prematurity


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Astigmatism

Finally, there are 36 other VIS documents listed that are still to begin the process.

All documents have been improved in terms of accessibility and standard alternative text had been agreed

to be added to the images contained within the documents.

Unfortunately, due to staffing this project has been slow to progress however will continue to be progressed

in 2020-21. It is likely that the after effects of COVID-19 will impact the ability of clinicians to complete this

work further.

3.5.2 Clinical Audit System (CAS) Throughout the reporting period training of CAS users in all NHS Boards has been completed and the

number of patients now in the CAS system is 1075.

Further information can be found below:

Figure 1

Figure 2 shows new patients overlaid with review patients- highlighting the new patients being a much

younger population:


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Figure 2

Correspondingly, we can see that the majority of VI patients are in NHS Greater Glasgow and NHS Lothian.

This is to be expected though as they are the biggest Health Boards. Further information on other Health

Boards can be found below:

Figure 3


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Therefore, further progress has been made towards providing NHS Scotland and subsequently the Scottish

Government, with up to date, accurate figures for the incidence and prevalence of VI in children and young

people in Scotland.

3.5.3 Transition Letters from CAS

When children on the CAS system reach age 15 ½ years, the CAS system generates written information,

which is issued from VINCYP about the adult registration process and how to access this system. It was

identified during the reporting period that due to staff changes and process inefficiencies, no VINCYP

letters had been sent.

However, to manage this in the new financial year, the programme team will be improving the current

planning and procedures- which will ensure future risks and issues are managed more efficiently.

3.5.4 Scottish Government CAS Reporting

During the reporting period VINCYP provided CAS data to the Scottish Government for publication along

with adult registration data. This will now be an ongoing yearly task.

3.6 Value

This VINCYP pathway aims to support NHS services in providing better value. The Services and Standards

group refreshes and promotes Scotland-wide VINCYP standards and pathways for the care of children with

VI, which were agreed in 2015. In September 2019, the steering group agreed that the current VINCYP

standards and quality indicators were still current and relevant- with the addition of standard 12, which is

related to collaborative interagency working.

3.7 Network Spend All national managed clinical and diagnostic networks receive an annual budget of £5,000 undertake

network activity, which can include facilitating annual events and developing promotional material.

During the reporting period the network spent £2,464.08. Please see Appendix 8 for further information.

3.8 Risks

There is a risk that due to COVID-19 in Scotland, key objectives will not be progressed as planned.

To mitigate this, the network has undertaken an exercise to not only capture the impact of this


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unprecedented situation on the current reporting period, but also to assess the likely impact on

delivery of the 2020/2021 workplan. This assessment has resulted in a two-pronged approach-

where key activities will continue to be progressed, but those that require significant clinical input,

will be placed on hold

There is a risk to the delivery of the practical aspects (requiring face to face/ hands on experience)

of the VINCYP training course and mentoring programme

There is a risk that the network will not be able to increase direct parent/YP input to the group by

extending the membership. To mitigate this, the network will engage with key stakeholders to

discuss the best method/channels to increase direct parent/YP input

4. Plans for the Year Ahead

Below are key plans and priorities for year ahead for VINCYP. For further information, please refer to the

current draft VINCYP NMCN 2020/2021 work plan under Appendix 6.

4.1 Service Development and Delivery

Re-define and document the content and layout of tools and templates, which is the precursor to

refreshing the mapping reports.

The Family Engagement Group will identify good practice for early intervention and will produce

guidance for professionals

4.2 Communication and Engagement

VINCYP will continue to be visible and integrated into the VI community and its stakeholders

Collate pertinent information for young people and families on the VINCYP website

4.3 Education

Deliver and plan the provision of key training courses for staff from a range of professions

VINCYP will have a fully endorsed education strategy and implementation plan by the network

steering group

4.4 Audit and Continuous Quality Improvement


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VINCYP will continue to work with the 14 regional National Health Service (NHS) Boards that report

to the Scottish Government- to ensure data collection and inaccuracies are corrected; and data is

continued to be inputted to the system

Provide CAS data for Scottish Government for publication along with adult registration data

4.5 Value

Produce a VINCYP pro-forma for Interagency Advisory Reports (as in Standard 12) to support

professionals in their local interagency teams

Produce a sample/suggested referral form for the ophthalmologist or VI paediatrician diagnosing VI

to use for referral to community VI services via the central contact


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Appendix 1- Children and Young people in Scotland with a Visual Impairment (2500)

Cerebral

( brain )

1500 There are two main sub-groups - those with a reduced level of clarity of vision (often having

additional disabilities) and those with normal/near normal clarity of vision but difficulties in visual field

or higher processing functions. Causes within these groups however are varied including prematurity,

hydrocephalus and other congenital brain abnormalities, cerebral tumours and acute head injury. At

present treatment for this group is not possible in the main, other than that for the primary brain

injury.

Early support for babies is important to promote development and for acute visual loss at any age it is

vital. These children often attend hospital eye departments for follow up , however if there were

reliable joined up services available from paediatrics, optometry and education this would not always

be necessary resulting in services being focussed on those most requiring them

Eye 750 Retinal Dystrophy / damage. ( 240 )

- this includes in the main, a variety of individually rare retinal disorders but also retinopathy of

prematurity and retinal detachment - the two latter conditions can be treated successfully but not

always leaving these numbers with permanent visual loss. As gene therapy progresses this group

are particularly important to identify as treatment may become available and genetic counselling

should be offered

Cataract ( 95 )

- Treatment is available and successful in many but this number remain with permanent visual loss.

Complications occur and monitoring is reauired

Congenital malformation ( 178 )

-this includes a wide variety of conditions involving all structures of the eye itself for which at present

there is no treatment but genetic counselling should be offered in some cases

Albinism ( 183 )

- this is genetic condition affecting the pigment in the eye reducing vision and also can affect skin

pigment . It is not treatable but advice from dermatology and genetics should be offered. A static

condition usually not requiring longterm hospital follow up , but often given this at present

Glaucoma ( 21 )

- damage is caused to vision from increased pressure within the eye . Medical and surgical treatment

is available but some children are left with visual loss. Early treatment and monitoring are essential

Uveitis ( 19 )

- an inflammatory process within the eye which can leave a small number of children with permanent

visual loss. Monitoring of these children is important

Retinoblastoma ( 13 )

- a malignant tumour of the eye which is treatable in the early stages but treatment can result in

significant visual loss and may involve removal of the eyes.

Optic nerve 250 Children may be born with under development of the optic nerve, may develop inflammation of it or

suffer damage to it. All result in reduced vision. Some treatment of inflammation ( optic neuritis ) is

successful; This can be associated with other illness which requires treatment and follow up from a

paediatrician


NSD603-001.04 V1 Page 24 of 52

Appendix 2- Network Steering Group Membership

Name Job Title Represnting

Alan Mulvihill

Consultant Ophthalmologist

Scottish Paediatric Ophthalmology Group (SPROGS)

Andrew Blaikie Consultant Ophthalmologist


Annemarie Fleming Education, CYPF (Children, young people and families) and Transitions Lead RNIB

Christopher Scott Consultant Ophthalmologist


Gillian Coyle Advanced Orthoptist

Scottish Orthoptist Group

Gillian Syme Professional Development Director Optometry Scotland

Grant Smith Habilitation Specialist

Guide Dogs Scotland

Jacqueline McGuire

Principal Teacher

Scottish Association for Visual Impairment Education (SAVIE)

Jonathan Reid Sensory Impairment Co-ordinator Alliance Scotland

Kathryn Weed Consultant Optometrist

Hospital Optometrists

Kathy Spowart Consultant Community Paediatrician

Visual Impairment Paediatricians Scotland (VIPS)

Lisa Petrie Operations Manager / Habilitation Specialist

Guide Dogs Scotland

Lyn Cresswell Consultant Community Paediatrician


Margot Campbell Associate Specialist in Community Child Health


Monica McGeever HM Inspector Education Scotland

Prof. John Ravenscroft Director of the Scottish Sensory Centre

University of Edinburgh

mailto:[email protected]

mailto:[email protected]


NSD603-001.04 V1 Page 25 of 52

Appendix 3- National Commissioning Governance for National Networks (NSD610-001.05)


NSD603-001.04 V1 Page 26 of 52

Appendix 4 – (NSD610-001.04) VINCYP NMCN 5 Year Workplan 2017–2020


NSD603-001.04 V1 Page 27 of 52

Appendix 5. Detailed Description of Progress in 2019/2020 VINCYP Annual Workplan for 2019/2020 (as of 31 March 2020)

RAG status key

RAG status Description

RED (R) The network is unlikely to achieve the objective/standard within the agreed timescale

AMBER (A) There is a risk that the network will not achieve the objective/standard within the agreed timescale, however progress has been made

GREEN (G) The network is on track to achieve the objective/standard within the agreed timescale

BLUE (B) The network has been successful in achieving the network objective/standard to plan

The Institute of Medicine’s six dimensions of quality are central to NHS Scotland’s approach to systems-based healthcare quality improvement; therefore, objectives should be linked to these dimensions:

1. Person-centred: providing care that is responsive to individual personal preferences, needs and values and assuring that patient values guide

all clinical decisions;

2. Safe: avoiding injuries to patients from healthcare that is intended to help them;

3. Effective: providing services based on scientific knowledge;

4. Efficient: avoiding waste, including waste of equipment, supplies, ideas, and energy;

5. Equitable: providing care that does not vary in quality because of personal characteristics such as gender, ethnicity, geographic location or

socio-economic status; and

6. Timely: reducing waits and sometimes harmful delays for both those who receive care and those who give care.


NSD603-001.04 V1 Page 28 of 52

Objective Number

Smart Objective Planned start/ end dates

Detailed Plan Available /

Owner

Description of progress towards meeting objective as at 31.03.2020

Anticipated Outcome

RAGB status

1. Effective Network Structure and Governance [linked to Quality Dimensions 3,4,5,6]

2019-01

The network will organise four Network Steering Groups and three each sub-group meetings by 2020 to ensure effective delivery of the 2019-2020 work plan.

01/04/2019

Steering Group and sub-group

member-ship

Network Steering Group meetings are planned for 2019-20 and sub-groups are arranged throughout the year.

For VINCYP, the Network Steering Group meets quarterly- these took place in June-2019, September-2019 and December-2019. March-2020 Network Steering Group

The four active sub-groups- each meet as stated below:

- Data Group- May-2019, August 2019, October 2019 & January 2020

- Family Engagement Group- sub-group meeting took place on June-2019. Subsequent meetings were placed on hold because of support team vacancies within the network. During the Steering Group on 13th December 2019- there was some discussion around the need to further increase parent involvement in the group. It was agreed that the group members would liaise regarding further proposals for parent /YP involvement by email. The group will meet again once a new network manager is in post. Grant Smith will continue as the chair of the group.

- Services and Standards- April 2019, August 2019, November

Effective delivery of the VINCYP network work plan to ensure continuation of progress.

G


NSD603-001.04 V1 Page 29 of 52

Objective Number



Owner


Anticipated Outcome

RAGB status

2019 & February 2020,

- Education Group- first meeting of the reinstated Education and Training group took place January 2020- the main task of this group at present is to plan an education day focussed on children and young people with VI and complex disabilities.

- It was agreed with Catriona Johnson that this interagency group would step down whilst the smaller training Course group (Health only) worked with the University of Edinburgh and the SSC to organise the Specialist Training Course in Childhood Visual Impairment and subsequent mentoring programme. The Specialist Training Course was held in June 2019 and the mentoring programme commenced in September 2019 (due to run until August 2020 but has been suspended because of Covid 19). Although now delayed, the interagency Education and Training Group was reinstated before March 2020 as agreed

However, updated guidance and interim national arrangements that reflect the recent developments of Coronavirus (COVID-19) in Scotland- have resulted in the delay of key documentation and re-scheduling all future Network Steering Group and sub-group meetings.

It is proposed that the Network continues progresses of this objective


NSD603-001.04 V1 Page 30 of 52

Objective Number



Owner


Anticipated Outcome

RAGB status

(that was planned for 2019/20) and move it into the annual workplan for 2020/21.

2. Service Development and Delivery [linked to Quality Dimensions 1,2,3,4,5,6]

2019-02

By May 2019 the network will have finalised the mapping reports and will review and highlight the changes from the initial Mapping and identify and highlight areas of improvement.

Start

01/03/2017

Ongoing through 2019

Dr Margot Campbell

Martina Mungall

Philippa Cottam

The network has compiled the report for each local authority and health board. The reports have been updated as per usual procedures via the website.

It was agreed at the network annual performance review that refreshing the current mapping reports would be moved from 2020 to 2021, this was also ratified by the SG 20/9/19

There will be a clear picture of what services are available in what parts of the country which have been communicate to Local Authorities.

B

2019-03

By March 2020 the network will map early intervention services.

01/04/2019

Dr Margot Campbell

Services and Standards

Group

Martina Mungall

Philippa Cottam

Review Mapping reports to ascertain what Early Intervention is happening in different areas. The Lead Clinician did write a paper for the FEG meeting. However, this meeting on 28th November was cancelled (because of lack of available resource/support).

The FEG group have been tasked with identifying good practice and guidelines for early intervention which will be on the 2020/21 work plan

VINCYP will have greater clarity around what early intervention happening following review of Mapping Reports to address next steps.

A

3. Stakeholder Communication and Engagement [linked to Quality Dimensions 1,3,4,5,6]

2019-04 By May 2019 review and update the Communication Strategy to meet the needs of all stakeholders, including the provision of information.

01/04/2019 Martina Mungall

Dr Margot

Current review of communication Strategy.

Rebranding of all VINCYP

Stakeholders across Scotland will inform the annual workplan to ensure a

B


NSD603-001.04 V1 Page 31 of 52

Objective Number



Owner


Anticipated Outcome

RAGB status

Campbell

Steering Group

Communications materials.

VINCYP poster had been created by the NSS communications team with the same accessibility standards as the VINCYP postcards. This was also ratified by the SG 13/12/19.

personalised approach to care.

2019-05

By March 2020 VINCYP will collate examples of good practice for young people transitioning to adult services.

01/05/2018 ongoing

Dr Margot Campbell

Family engagement group (FEG)

Martina Mungall

Philippa Cottam

Current collaboration with Third Sector Organisations to continue to strengthen links.

Reviewed personal project framework for young people at transition used in Tayside

Identified links to relevant documents relating to Transition to adult services

Currently when children on the CAS system reach age 15 ½ years, they will receive information from VINCYP about the adult registration process and how to access this system. IMS has supported the network to issue transition letters from CAS.

As of March 2020, due to resource difficulties and process inefficiencies, no VINCYP letters had been sent.

However, to manage this in the new financial year, the programme team will be improving the current planning and procedures- which will ensure future risks and issues are managed more efficiently.

This objective will be moved to the 2020/21 annual workplan.

Through shared decision making VINCYP will deliver what matters most to patients. Patients and families involved in shared decision-making while maximising value for money and realising cost savings.

R


NSD603-001.04 V1 Page 32 of 52

Objective Number



Owner


Anticipated Outcome

RAGB status

4. Education [linked to Quality Dimensions 1,2,3,4,5,6]

2019-06

By March 2020 the network with deliver training for staff from a range of professions in collaboration with the University of Edinburgh, Scottish Sensory Centre (SSC) and Clinical Ophthalmology at the University of Edinburgh.

01/05/2019

Dr Margot Campbell

(Lead Clinician)

Martina Mungall

Steering Group

Members

The network has taken forward the National Course on Childhood Visual Impairment using secured funding from Scottish Government.

An Introduction to Childhood VI for all professionals (generic training) – this 3-day course was completed in Feb 2018

The Specialist Training Course in Childhood Visual Impairment (specialist course for health professionals) – this 3-day course took place in June 2019

Mentoring programme – commenced September 2019 as planned (suspended at present due to Covid 19)

The network will also communicate details of other training courses to members and include these on the VINCYP website.

It was agreed by commissioners at the network annual performance review that the re- running of the generic training course would move from 2019 to 2020 and running the specialist course in 2021 instead of 2020-this was ratified by the SG 20/9/19.

Professionals across Scotland that are well trained and appropriately skilled to work with children with VI.

B

2019-07 By May 2019 VINCYP will write an education strategy and implementation plan that increases the education opportunities for the wider professionals working with Visual Impairment.

01/05/2018 to May 2019

Martina Mungall

Dr Margot

Education Strategy written and awaiting endorsement by the Network Steering Group.

All professionals across Scotland share and increase their skills and

A


NSD603-001.04 V1 Page 33 of 52

Objective Number



Owner


Anticipated Outcome

RAGB status

Campbell Over the last financial year, there were plans to write an education strategy and implementation plan that develops and enriches the education opportunities for the wider professionals, working within Visual Impairment.

These key documents have been drafted and are awaiting modifications and finally endorsement by the Network Steering Group. However, due to the Coronavirus (COVID-19) conditions in Scotland, future key stakeholder engagement events and meetings are postponed

Similar, VINCYP has seen certain resource challenges, the new financial year will witness additional resource from NNMS advance the education strategy and implementation plan.

Accordingly, to continue to innovate, develop and enrich the education experiences and opportunities for professionals, this objective will be moved from 2019/2020 to the next financial year 2020/21.

knowledge of Visual Impairment. Evidence and guidance is readily available to support the workforce and embrace innovation.

5. Audit and Continuous Quality Improvement [linked to Quality Dimensions 1,2,3,4,5,6]

2019-08

CAS rollout: By 2020 VINCYP will ensure data is continued to be inputted to the system.

Start 03/04/2017 ongoing through

2018/2019

James Thom

Dr Andrew Blaikie

Dr Margot Campbell

The training of CAS users in all NHS Boards has been completed and the number of patients in the CAS system exceeds 1075 over 2019-2020 and there were 82 new patients in VINCYP over 2019-2020.

Alerter reports have continued to be sent to health boards to encourage

For the first time, a true picture of children/young people with VI will emerge and be available across Scotland. Clinicians are able to access their data and audit

B


NSD603-001.04 V1 Page 34 of 52

Objective Number



Owner


Anticipated Outcome

RAGB status

Martina Mungall

greater data input. Areas where data is incomplete, the clinician will be contacted to request the information.

Equally, during the December 2019 Network Steering Group, it was highlighted that there are potential data inaccuracies in the CAS data. However, since then the data inaccuracies have been resolved by the Chair of the Data Group; and information has been submitted to the Scottish Government. Accordingly, this objective is on-going and will be moved from 2019/2020 to the next financial year 2020/21 (further information can be found in Appendix 6).

patient outcomes to drive improvements.

2019-09

By March 2020 VINCYP will have reviewed and developed a further 20 medical information documents

Start 03/04/2017 ongoing through

2018/2019

Dr Margot Campbell

Dr Andrew Blaikie

Martina Mungall

There is a risk that the network will not achieve the objective/standard within the agreed timescale, however progress has been made.

As at 2019 end there is –

27 still to be done

8 in process of being reviewed

6 – done dusted already (will need alt text added to images but are on website)

6 – done just waiting on approval from the steering group that they are final (and need alt text added to images)

Meaning that out of 80 – we should be at 40 still to be done by now if the target was 20 a year – (27 to be done + 8 currently under review) = 35 left so

To ensure documents are up to date and accessible on the website.

Patients and families are supported to manage their condition and to share in informed decision-making.

A


NSD603-001.04 V1 Page 35 of 52

Objective Number



Owner


Anticipated Outcome

RAGB status

I’d say we had met the target for this year.

Further plans to review the remaining documents in next year’s work plan 2020/21.

6. Value [linked to Quality Dimensions 1,2,3,4,5,6]

2019-10

By May 2019 the network will develop standards against which Visual Impairment services in Scotland can be monitored.

Dr Margot Campbell

Martina Mungall


The standards are on the website and have been highlighted through the regional planning groups and at all VINCYP meetings and events. The VINCYP pathway and central contacts continue to be available on the website. The promotion of VINCYP standards was carried out through the mapping reports as the reports have standards integral within the reports.

Also, a self-evaluation tool, which is a stepped approach to achieving each standard, has now been progressed and is available on the website.

The self-evaluation tools have been compiled to support individual

- The VINCYP pathway will be used in all areas to ensure appropriate referral. - Equity of access to high quality care across Scotland to reduce harm and unwarranted variation.

B


NSD603-001.04 V1 Page 36 of 52

Objective Number



Owner


Anticipated Outcome

RAGB status

professionals and teams providing services to benchmark, where they are with their own service against the VINCYP standards. The standards are available on the website.

Additionally, in the September 2019 Network Steering Group, the group agreed that the current VINCYP standards and quality indicators were still current and relevant.

An additional standard (standard 12) relating to collaborative interagency working was agreed.


NSD603-001.04 V1 Page 37 of 52

Appendix 6. Draft Work Plan for 2020/2021 VINCYP Draft Annual Workplan for 2020/2021 (as of 31 March 2020)

RAG status key

RAG status Description

RED (R) The network is unlikely to achieve the objective/standard within the agreed timescale

AMBER (A) There is a risk that the network will not achieve the objective/standard within the agreed timescale, however progress has been made

GREEN (G) The network is on track to achieve the objective/standard within the agreed timescale

BLUE (B) The network has been successful in achieving the network objective/standard to plan

The Institute of Medicine’s six dimensions of quality are central to NHS Scotland’s approach to systems-based healthcare quality improvement; therefore, objectives should be linked to these dimensions:

1. Person-centred: providing care that is responsive to individual personal preferences, needs and values and assuring that patient values guide

all clinical decisions;

2. Safe: avoiding injuries to patients from healthcare that is intended to help them;

3. Effective: providing services based on scientific knowledge;

4. Efficient: avoiding waste, including waste of equipment, supplies, ideas, and energy;

5. Equitable: providing care that does not vary in quality because of personal characteristics such as gender, ethnicity, geographic location or

socio-economic status; and

6. Timely: reducing waits and sometimes harmful delays for both those who receive care and those who give care.


NSD603-001.04 V1 Page 38 of 52

Objective Number



Owner

Description of progress towards meeting objective as at

31.03.2020

Anticipated Outcome

RAGB status

1. Effective Network Structure and Governance [linked to Quality Dimensions 3,4,5,6]

2020-01

The network will endeavour to organise four Network Steering Groups and three each sub-group meetings throughout 2020-2021, to ensure effective delivery of the work plan.

01/04/2020-31/03/2021

Steering Group and sub-group member-ship

Review and examine macro-environment, with the aim to ensure continuity and consistency of service- ensuring stakeholder engagement, effective network structure and governance are in place.

During the COVID-19 crisis, the Network will continue to monitor the development and progress of this objective.

Effective delivery of the VINCYP network work plan to ensure continuation of progress.

G

2. Service Development and Delivery [linked to Quality Dimensions 1,2,3,4,5,6]

2020-02

By March 2021, start the process to re-define and document the content and layout of tools and templates, which is the precursor to refreshing the mapping reports.

01/04/2020-31/03/2021

Dr Margot Campbell

Tassadaque Masood

The VINCYP mapping exercise, which was initiated in November 2017 and finalised on May 2018. These reports identified what services are available to children and young people in each geographical area- while also exploring ways to encourage NHS Boards and Local Authorities to address identified gaps, in order to improve local provision in line with VINCYP standards.

The Family Engagement Group (FEG) have used the reports to scope current provision for Early Intervention services across

Highlight any changes from the initial mapping exercise on May 2018.

There will be a clear picture of what services are available in what parts of the country, which have been communicated to Local Authorities

G


NSD603-001.04 V1 Page 39 of 52

Scotland.

During 2019/2020 annual work plan, the mapping reports were reviewed, so any enhancements could be recommended (based on the initial mapping exercise). It was agreed at the network annual performance review that refreshing the current mapping reports would be moved from 2020 to 2021. This was also ratified by the SG 20/09/2019. Further information will not be available from VINCYP until the mapping exercise is refreshed in 2021.

A key focus for the 2020/2021 annual workplan will be to re-define and document the content and layout of tools and templates, which is the precursor which enable refreshing of the current mapping reports.


2020-03

By March 2021 the network will have produced good practice guidelines for early intervention

01/04/2020-31/03/2021

Dr Margot Campbell


Tassadaque Masood

Early Intervention Services

The Family Engagement Group (FEG) have used the reports to scope current provision for Early Intervention Services across Scotland.

The Family Engagement Group will identify good practice for early intervention and will produce guidance for professionals

During the COVID-19 crisis, the Network will continue to monitor the development and progress of

VINCYP will have greater clarity around what early intervention happening following review of Mapping Reports and will produce good practice guidelines.

G


NSD603-001.04 V1 Page 40 of 52

this objective.

2020-04 Situation, Background, Assessment, Recommendation (SBAR) paper- shortage of paediatric ophthalmologists

01/04/2020-31/03/2021

Dr Margot Campbell


Tassadaque Masood

The concerns regarding the shortage of paediatric ophthalmologists, particularly in the west of the country, were raised with the VINCYP steering group and it was agreed that there should be a formal response to the situation. It has been noted that plans have been moving forward to improve the situation particularly in GG&C, but that there are still gaps in services.

To address this a team of stakeholders, including Alan Mulvihill wrote a Situation, Background, Assessment, Recommendation (SBAR) paper.

Situation, Background, Assessment, Recommendation (SBAR) paper.

3. Stakeholder Communication and Engagement [linked to Quality Dimensions 1,3,4,5,6]

2020-05 By 2021 VINCYP will continue to be visible and integrated into the Visual Impairment community and its stakeholders.

01/04/2020-31/12/2020

Dr Margot Campbell


Family Engagement Group

Tassadaque Masood

Ensure network achievements are shared

Promote consistency in the delivery of effective VI services across Scotland

Engage with professionals, patients and patient groups/voluntary sector organisations to discuss services and inform best practice


- Continue publication of the newsletter, which is delivered up to 4 times a year by March 2021 - Enhance Number of #VINCYP Tweets exponentially (during 2019/2020- the number of #VINCYP Tweets was 1) - 36 useful links webpage will be re-designed and updated - Continue to be

G


NSD603-001.04 V1 Page 41 of 52

visible and integrated into the Visual Impairment community

2020-06

By March 2021 VINCYP will endeavour to review and develop up to 5 medical information documents

01/04/2020-31/03/2021

Dr Margot Campbell

There is a VIS document Short Life Working Group comprised of appropriate clinicians plus John Ravenscroft from the SSC

Tassadaque Masood

This will continue to next year’s work plan 2020/21- with the aim to review up to 5 medical information documents.


To ensure documents are up to date and accessible on the website.

Patients and families are supported to manage their condition and to share in informed decision-making

G

2020-07

By March 2021, VINCYP will collate pertinent information for young people transitioning to adult services including examples of good practice; and ensure these are updated on the VINCYP website

01/04/2020-31/03/2021

Dr Margot Campbell

Family engagement group (FEG) Tassadaque Masood

Next Step by March 2021, in regards to young people transitioning to adult services- all related and relevant documentation to be updated and put onto the VINCYP website.


- Through shared decision making VINCYP will deliver what matters most to patients. Patients and families involved in shared decision-making while maximising value for money and realising cost savings. - To ensure documents are up to date and accessible on the website.

- Patients and families are supported to manage their condition and to share in informed

G


NSD603-001.04 V1 Page 42 of 52

decision-making

2020-08 By March 2021, VINCYP continue to issue letters from CAS to young people transitioning to adult services

01/04/2020-31/03/2021

Dr Margot Campbell


Currently when children on the CAS system reach age 15 ½ years, they will receive information from VINCYP about the adult registration process and how to access this system. IMS has supported the network to issue transition letters from CAS.


- Through shared decision making VINCYP will deliver what matters most to patients. Patients and families involved in shared decision-making while maximising value for money and realising cost savings. - To ensure documents are up to date and accessible on the website.

- Patients and families are supported to manage their condition and to share in informed decision-making

2020-09

By March 2021, increase direct parent/YP input to the group by extending the membership.

01/04/2020-31/03/2021

Dr Margot Campbell


Promote consistency in the delivery of effective VI services across Scotland

Engage with professionals, patients and patient groups/voluntary sector organisations to discuss services and inform best practice


- The network priorities will be driven by patients and family members. The network will have met key objectives to increase patient and family involvement and reinvigorate the FEG group by introducing additional members. Patients and family

G


NSD603-001.04 V1 Page 43 of 52

members will input to and influence the priorities of the network.

2020-10

By March 2021, compiling information for the website to explain how a parent or young person can evidence their VI when applying for government support.

01/04/2020-31/03/2021

Dr Margot Campbell


Tassadaque Masood

By March 2021, compiling information for the website to explain how a parent or young person can evidence their VI when applying for government support. For example, for applying for benefits and other services (since children are no longer registered B/PS)- this would be an achievable objective to add to the work plan.

- The network priorities will be driven by patients and family members. The network will have met key objectives to increase patient and family involvement

- Patients and family members will input to and influence the priorities of the network.

- To ensure documents are up to date and accessible on the website.

- Patients and families are supported to manage their condition and to share in informed decision-making

G

4. Education [linked to Quality Dimensions 1,2,3,4,5,6]

2020-11

By March 2021, the network with deliver training for the generic training course for staff from a range of professions in collaboration with the University of Edinburgh, Scottish Sensory Centre (SSC) and Clinical Ophthalmology at the University of

01/04/2020-31/12/2020

Dr Margot Campbell

Dr Kathy Spowart (Education sub-

It was agreed by commissioners at the network annual performance review that undertaking of the second run of the generic training course would move from 2019 to 2020. This was ratified by the SG

Professionals across Scotland that are well trained and appropriately skilled to work with children and young

G


NSD603-001.04 V1 Page 44 of 52

Edinburgh. group lead)

Tassadaque Masood

Steering Group Members

20/9/19.



people with VI.

2020-12

By March 2021, the network will start to plan the delivery of the training specialist course, enabling a further 20 attendees to complete the course. This will be applicable for staff from a range of professions in collaboration with the University of Edinburgh, Scottish Sensory Centre (SSC) and Clinical Ophthalmology at the University of Edinburgh.

01/04/2020-31/03/2021

Dr Kathy Spowart Margot Campbell (Education sub-group lead)

Tassadaque Masood

Steering Group Members

It was agreed by commissioners at the network annual performance review that re-running the specialist course would run in 2021 instead of 2020 this was ratified by the SG 20/9/19.


Figure of 20 attendees extracted from the current VINCYP NMCN overarching 5-year work plan (2017-2021) - 31 participants attended the Specialist Training Course in June 2019


Professionals across Scotland that are well trained and appropriately skilled to work with children and young people with VI.

G

2020-13

By March 2021, VINCYP will have a fully endorsed education strategy and implementation plan by the Network Steering Group.

01/04/2020-31/03/2021


Tassadaque Masood

Over the last financial year, there were plans to write an education strategy and implementation plan, that develops and enriches the education opportunities for the wider professionals, working within Visual Impairment.

These key documents have been

All professionals across Scotland share and increase their skills and knowledge of Visual Impairment. Evidence and guidance is readily available to support

G


NSD603-001.04 V1 Page 45 of 52

drafted and are awaiting modifications and finally endorsement by the Network Steering Group. Although, VINCYP has seen certain resource challenges, the new financial year will witness additional resource from NNMS advance the education strategy and implementation plan.

Accordingly, to continue to innovate, develop and enrich the education experiences and opportunities for professionals, this objective will be moved from 2019/2020 to the next financial year 2020/21.


the workforce and embrace innovation.

2020-14

By March 2021, link CAS Data information including deprivation to educational attainment of children and YP with VI and develop for reporting/publication

01/04/2020-31/03/2021

Professor John Ravenscroft

Data Group

Tassadaque Masood

Objective extracted from the current VINCYP NMCN overarching 5-year work plan (2017-2021).


The first clear picture of the number of children with VI in Scotland and the breakdown in different regions in Scotland will be produced. The VINCYP CAS will be the source of reliable national information on children and young people with VI in Scotland. It will provide a clear picture of the incidence and services in different areas and highlight any gaps or pressures. Data will be used to support services in quality

G


NSD603-001.04 V1 Page 46 of 52

improvement.

2020-15

By March 2021, in response to the training need highlighted by VI professionals from Education and Habilitation services, develop a plan on delivering a training day on VI and complex needs.

01/04/2020-31/03/2021


Tassadaque Masood

The Network will achieve this by arranging the Complex needs and VI training day.

Arranging the Complex needs and VI training day

G

5. Audit and Continuous Quality Improvement [linked to Quality Dimensions 1,2,3,4,5,6]

2020-16

CAS rollout: By March 2021, VINCYP will continue to work with the 14 regional National Health Service (NHS) Boards that report to the Scottish Government- to ensure data collection and inaccuracies are corrected; and data is continued to be inputted to the system

01/04/2020-31/03/2021


Tassadaque Masood

Mr Gavin Halford (Data Analyst, NSS IMS)

This objective has been moved from 2019/2020 to the next financial year 2020/21.


A true picture of children/young people with VI will emerge and be available across Scotland. Clinicians are able to access their data and audit patient outcomes to drive improvements

G

2020-17 By March 2021, provide CAS data for Scottish Government for publication along with adult registration data

01/04/2020-31/03/2021


Data Group

Tassadaque Masood

This is an annual task for us now that children under age 16 years in Scotland are no longer registered blind/partially sighted.

The VINCYP CAS will be the source of reliable national information on children and young people with VI in Scotland. It will provide a clear picture of the incidence and services in different areas and highlight any gaps or pressures. Data will be used to support services in quality


NSD603-001.04 V1 Page 47 of 52

improvement.

6. Value [linked to Quality Dimensions 1,2,3,4,5,6]

2020-18

By March 2021, produce a VINCYP pro-forma for Interagency Advisory Reports (as in Standard 12) to support professionals in their local interagency teams

01/04/2020-31/03/2021

Dr Margot Campbell

Tassadaque Masood


The standards are on the website and have been highlighted through the regional planning groups and at all VINCYP meetings and events. The VINCYP pathway and central contacts continue to be available on the website. The promotion of VINCYP standards was carried out through the mapping reports as the reports have standards integral within the reports.

Additionally, in the September 2019 Network Steering Group, the group agreed that the current VINCYP standards and quality indicators were still current and relevant.

An additional standard (standard 12) relating to collaborative interagency working was agreed.

- Pro-forma for Interagency Advisory Reports (as in Standard 12) to support professionals in their local interagency teams

- The VINCYP pathway will be used in all areas to ensure appropriate referral.

- Equity of access to high quality care across Scotland to reduce harm and unwarranted variation.

G

2020-19

By March 2021, produce a sample/suggested referral form for the ophthalmologist or VI paediatrician diagnosing VI to use for referral to community VI services via the central contact

01/04/2020-31/03/2021

Dr Margot Campbell

Tassadaque Masood


- S&S group are working on a word version and the data group are working on a version to be generated by CAS

Sample/suggested referral form for the ophthalmologist or VI paediatrician diagnosing VI to use for referral to community VI services via the central contact


NSD603-001.04 V1 Page 48 of 52

Appendix 7: Stakeholder Map A map listing all of the current Stakeholder groups and their current position:

Stakeholder Current Position Desired Position Risk/Issues

Staff involved with Network:

Lead Clinician

Steering Group

Working Groups

Good awareness of the Network, its aims and objectives and its current work priorities

Good awareness of patient care guidelines

As current

Timeliness of communication to ensure all members maintain awareness of and involvement in Network

Other NHS staff:

Paediatricians with an interest in Visual Impairment

General Paediatricians

Ophthalmologists

Orthoptists

Opticians/Optometrists

Health Visitors

NHS Staff directly involved in the Network have good awareness, others have some or no awareness of the Network

Increased awareness of the Network

Increased referral to central referral point

Increased awareness of the VINCYP standards and guidance around Cerebral visual impairment (CVI)


Visual Impairment Teachers

VI teachers directly involved in the Network have good awareness.


Increased awareness of central referral contacts, VINCYP pathway and improved communication around referrals


Habilitation service providers

Habilitation specialists directly involved in the Network have good awareness,

Increased awareness of the Network.

Improved referral to specialist services.


National Services Division

(NSD)

Good awareness of VINCYP and its work

Improved links to other Networks and share best practice

Requires working across Network boundaries

Third Sector

Voluntary sector organisations directly involved in the Network have

Increased awareness of the Network. Use posters, postcards,

Timeliness of communication to ensure all members


NSD603-001.04 V1 Page 49 of 52

good awareness, others have some or little awareness of the Network

websites .Consider use of Twitter.

maintain awareness of and involvement in Network

Patients, families and general public

Increase awareness of the Network

Increased awareness of the Network, using posters in the eye clinics and postcards

To ensure this has a priority in a clinical network.

Public Health Consultants

Little awareness of the Network

Increased awareness of the Network. Use newsletters, websites and the blogs

May be challenging to raise the profile of the Network with this group

Chief Medical Officer

Some awareness of the Network


Increased awareness of central referral contacts, the VINCYP pathway and improved communication around referrals

Using, the website and newsletters to raise the profile

May be challenging to raise the profile of the Network with this stakeholder group as they have a range of priorities

Directors of Planning



Increased awareness of central referral contacts, the VINCYP pathway and improved communication around referrals

Using blogs, the website and newsletters to raise the profile

Can be difficult to raise the profile of the Network in each health board

Social Workers



May be challenging to raise the profile of the Network with staff who


NSD603-001.04 V1 Page 50 of 52

Increased awareness of central referral contacts, VINCYP pathway and improved communication around referrals

Using, the website, presentations at national meetings and posters to raise the profile

have a range of priorities,

Scottish Government

Good awareness of VINCYP and its work

As current



NSD603-001.04 V1 Page 51 of 52

Appendix 8: Finance