Vision2020UK Children and Young People’s Special Interest Group
Minutes of the meeting held on 1 November 2016 at Friends House, Euston Road, London.
Present:
Chris Lloyd - Chair of Paediatric Sub Committee of Royal College Ophthalmologists (Great Ormond Street)
Fiona Brown – Guide Dogs (Northern Ireland)
Gillian Coles - VIEW
Jackie Webster – Guide Dogs – Group Secretariat
Jenny Cook – Guide Dogs – Chair of Group
John Harris - RLSB
Laura Christie – SeeAbility
Laura Hughes – Visionary (Moorvision)
Lindsey Jane Rousseau – NatSIP
Lynn Stow – Kent Local Authority
Matthew Carr – England Vision Strategy (TPT)
Mercy Jeysingham – Vision2020UK
Mike Brace - Havering Strategy Group
Nicola Crews – RNIB Cymru
Rowena Mcnamara - British and Irish Orthoptic Society
Tracie Tappenden – VICTA
Tracy de Bernhardt Dunkin – WESC Foundation
Wendy Sainsbury – Blind Children UK
Apologies:
Bernadette Dawes – Birmingham Vision
Laura Tuff – BIOS (Rowena Mcnamara in attendance)
Lesley Inganni – Action for Blind People
Mary Bairstow – Vision2020UK
Michael Bowen – College of Optometrists
Steve Rose - Sense
Wendy Rankin – Guide Dogs (Scotland) & Blind Children UK
Sally Harvey – RNIB
1. Welcome, introductions and Apologies
2. Minutes and Actions from last meeting:
· Amendment to title - to ensure Vision2020UK is written correctly.
· Review of CYP safe stats. - Jenny emailed Phillippa Simkiss (new chair of Social Research Group) it is on the agenda for the March SRG meeting to discuss. Item to be added to our next agenda for update. Mercy has suggested a cross working group with members of the CYP and SRG. It was noted that John Harris sits on both groups and will raise at the March SRG meeting.
· All other actions complete or on the agenda
3. Review of UK vision strategy
Mercy gave an overview of the interim results of the evaluation of the UK Vision Strategy.
836 responses were received overall. 315 were individual responses of which 42% were from people with a VI and 209 were professional responses.
The top 4 priorities identified were:
· Practical support to live independently
· Information on where to go for help
· Public understanding of sight loss
· Emotional support
Next steps:
· Workshop is being set up to look at the data in more detail to group together recommendations 15 November.
· Full report with recommendations will be out on the 8th of December
· Interim programme working group has been established to take the report recommendations forward with and on behalf of the sector.
4. Review of Vision2020 CYP pathway
The working group is developing a UK wide pathway, looking at nuances between different pathways, and overlaying the relevant priority actions from the UK Vision Strategy. The group have updated the pathway and are now discussing the supporting documentation.
Jenny and Mercy (Chair of group and CEO of Vision2020UK) have identified 4 priorities for the group that have emerged as themes from the last three years of the groups discussions they are:
· Screening and eye tests
· CVI and registration
· Secondary school education
· Transition (specifically into Adulthood)
Jenny asked for feedback on the four areas:
The group raised the following points.
· All themes were very relevant and hard to find preferences
· Screening and eye tests has the most profound implication for UK finances. We need to support the robust evidence based national screening committee recommendations so that all children from 4-5 are screened for vision loss and then enter the appropriate pathway.
· With everything being Devolved the UK pathway will have to be very general with the three Nations and an England pathway.
· Transitions potentially be joined to secondary school education
· Two working groups be set up to look at each theme
To help inform the transition point, Lindsey highlighted a piece of work due out in February called ‘Just enough support’ in which young people talk about the support they want at further education to operationalise it.
Birmingham University are doing some research in to Transitions which will also be relevant – Contact, Graham Douglas
It was suggested that the pathway could be shared at the VIEW conference 2017 will be on 16-17 March 2017. The conference will take place at the Hallmark Hotel Birmingham,
CVI and Registration is being addressed within broader Vision2020UK work which has included a recent round table event on this topic (for all ages). There was a good turnout from the Vision2020UKCYP group at this meeting. See Agenda Item 7 below.
Action:
Chair - to set up three working groups, one to look at Screening & eye tests, one on secondary school education and a third on transitions. Note (eye screening/tests) may already be covered by a working group at RCOpth, Mercy/Jenny to discuss with Chris.
5. Review of TOR and CYP group priorities
A review of ToR’s is being effected across all groups to ensure sub groups come together across committees so as not to work in silos. Our ToR’s need to reflect the impact we want as a committee.
Action:
Mercy - to circulate ToR’s with tracked changes for group to review and comment. And talk to ABDO and Michael Bowen (College of Optometrists) for added representation.
6. Starting Point
Starting Point leaflet has been created and published and distributed to Hospitals and Orthoptics departments. The question is where to distribute them next? It was agreed that a plan would need to be put in place to ensure that that they were distributed effectually, maintained and updated. I was asked that the plan be presented back to the next meeting in the 2017 for information and support.
Thanks were given to the paediatric committee for highlighting the need for the document and special thanks to all involved, TPT for the funding and to Mary Bairstow for being the driving force behind it.
Actions:
· Mercy - to arrange for the document to be downloadable in leaflet form.
· Working group - to create a business plan for review at next meeting to cover, monitoring/updating/distribution/translation/funding/social media etc. To be added to next meeting’s agenda for info and support.
· All – include link to each organisations websites
7. Feedback on the Vision2020UK CYP CVI round table event.
Mercy gave an overview of the event. Write up of the day to follow.
It was a very positive event of which people would like a follow up to.
Action:
Mercy – Recommendation that the guidance produced by the Paediatric Committee at the RCOpth on Notifications needs to be promoted through Vision2020UK. Mercy to provide a briefing paper re Notifications for next meeting to take back to organisations.
8. Seeability’s equal right to sight paper
SeeAbility’s Equal Right to Sight report can be found here https://www.seeability.org/our-services/advisory-services/campaigning-for-an-equal-right-to-sight
The link to share and sign the petition to change NHS sight tests to meet the needs of people with a learning disability is https://petition.parliament.uk/petitions/133239
SeeAbility has also been nominated for an Association of Optometrists award as charity of the year for our sight testing work in schools if people could take a minute to vote for us and share with others https://www.aop.org.uk/education-and-events/aop-awards/2017
9. 2017 Childrens Conference
Mercy asked the group, if Vision2020UK did an event, what would the focus be and who would we want to influence? This could be a conference, seminar, round table etc. Discussion included:
· Do we want to influence the department of education? Local authority heads of service?
· Make sure we agree key messages
· Would it be a one off event or regional? A one off event would be very difficult to cover all areas, but the barrier to doing regional events is funding!
· The power is in having the young people being up front.
Actions:
It was agreed that until the working groups are established content will not be clear, therefore agreed to keep this as a standing agenda item until appropriate topics are put forward.
10. Progress on the contract work with DfE
The NatSIP report to the DfE on work carried out in the second quarter of the contract for 2016-17 has now been published. Which means that NatSIP are half way through their activities to meet the objectives of the contract, which are being monitored by Brian Lamb.
The time has gone very quickly. NatSIP would like to thank all affiliates and partners who have contributed to the work so far.
NatSIP currently has 24 events running across regions and while some are oversubscribed it has been difficult raising awareness to the right people for some of the others, so would appreciate help promoting them.
Actions:
Mercy - Please ensure Link is put on the CYP page of Vision2020UK website.
11. WESC Paper
It has been recognised that neurological visual impairment such as CVI (cerebral visual impairment) is the single largest category of visual impairment in children living in the developed world.
Chris Lloyd referred to some stats from J.Rahi paper ‘Severe visual impairment and blindness in children in the UK’ which can be viewed and downloaded here http://www.download.thelancet.com/journals/lancet/article/PIIS0140-6736(03)14631-4/fulltext
WESC has identified a gap in research in how children with a developmental visual impairment (CVI), learn differently. Looking at how to more effectively engage with them and to understand their learning process in order to make learning more accessible and to take to main stream schools.
They now have an approach in its third year which is starting to be rolled out to Local authorities. Devon have a one-year pilot starting in January, to use in main stream schools.
The Project runs up to December next year which is when the evidence will be qualified and papers will be published and potentially be rolled out to QTVIs throughout the UK. Contact Tracy directly for further details.
Action – to be a standing agenda item so Tracy can keep us updated as to progress made.
12. Boots ‘Green Paper’
Paper copies were handed to the group. Mercy and Rowena briefed on sector concerns over the commercial sector providing schools with equipment for school staff to test children, BIOS met with Boots to discuss concerns at which point they revealed they were producing the Green paper (discussion paper).
BIOS was able to have some input such as some basic terminology change, however BIOS frustrated that they are still promoting the project as a replacement for what the local authority should be providing. The programme has a number of asks which demands funding by the government, and so felt it potentially won’t be successful.
Though some progress was made it was a missed opportunity to get the messages out there. It is clear that there is still work to do as a sector to educate the general public including boots, vision express etc.
It was suggested to contact Ben Fletcher, Managing Director, Boots to work with in the future.
13. Vision2020UK Low vision group feedback.
· October meeting was postponed.
· Work on Medically unexplained sightloss continues Annegret Dahlmann Noor (Paediatric Ophthalmologist) has been taking forward this matter on our behalf. She has conducted some scoping research at Moorfields.
(See Poster attached).
· The final draft report is nearing completion and will be available by early December. The research team at Pocklington have suggested a meeting with Mary B to discuss how to take outcomes forward
14. Paediatric committee feedback
Covered in other items.
Items 15 and 16 more relevant at working group level.
AOB
· Nicola introduced the group to the two following resources
- RNIB’s play guide.
http://www.rnib.org.uk/family-friends-and-carers-resources-parents-blind-or-partially-sighted-children/lets-play
- and a guide for parents
http://www.rnib.org.uk/information-everyday-living-family-friends-and-carers/resources-parents-blind-or-partially-sighted
· National Eye survey, looking at doing the survey in schools.
· Jenny is doing a podcast for Vision2020UK and will highlight the 4 priority areas if group is happy.
Date of next meeting: Thursday 20 April 2017. 1030hrs to 1330hrs Thomas Pocklington Hub – TBC.