Attachment 2
VISION 2020 UK Rehabilitation and Low Vision Committee
Draft Minutes of Meeting, 21/02/17, 12:30 – 15:30 in Meeting Rooms 2 & 3, Lower Ground Floor at RNIB, 105 Judd Street, London, WC1H 9NE
Present: JP Chair – Jenny Pearce, VISION 2020 UK
ES Emma Sands, RNIB Cymru – left 14:00 JF Joshua Feehan, RNIB KR Ken Reid, Scotland VS Group LB Liz Bates, DeafBlind UK – teleconf MBa Mary Bairstow, VISION 2020 UK MBr Matt Broom, VISION 2020 UK – arrived 12:50 MC Matthew Costello, British and Irish Orthoptic Society (BIOS) MJ Mercy Jeyasingham, VISION 2020 UK MB Mike Bell, RNIB – teleconf PL Peter Locke, Blind Children UK (representing NI) PS Philippa Simkiss, RNIB – parts of meeting SM Simmone Miller, RNIB SB Sharon Beckett, Sight Cymru – teleconf SL Simon Labbett, Rehab Workers Professional Network (RWPN)
1 ______VISION 2020 UK 2nd Floor, 105 Judd Street, London WC1H 9NE Reg. Company No. 7850769 Charity No. 1146746/SC046837 Attachment 2 In Attendance: TK Secretary – Tayyaba Kamal, VISION 2020 UK
Apologies: Andy Fisher, Focal Point UK Barry Duncan, ABDO Ben Kitching, RNIB (left committee as moved to different team) Bob Hughes, Sight for Surrey (representing Visionary) Catherine Smith, Blind Veterans UK Marsha de Cordova, Thomas Pocklington Trust Paul Bowerbank, ADASS Will Thornton, Blind Veterans UK (replacing Julie McCarthy)
1. Welcome, introductions and apologies for absence (JP) All attendees were welcomed, especially newcomer MC. Introductions were given. Apologies were read out.
2. Minutes of meeting on 24 November 2016, matters arising not covered elsewhere on the agenda, and progress against Action Log from last meeting (JP) Minutes of meeting on 24 November 2016 The following corrections to be made were highlighted: o page 7, item 4.2(d) Mentoring programme for training providers – progress – To be a member, one ‘must’ be a member of RWPN, ‘but this is not the case to be a mentee’. o page 11, item – item 7 Any other notified business, Boots Opticians Green Paper on children’s eye health – This statement ‘may’ panic parents. The minutes were otherwise approved.
Matters arising Item 6.2, Integrated Care update – Feedback following workshop re. establishing a Programme Board – All to send suggestions for 2 ______VISION 2020 UK 2nd Floor, 105 Judd Street, London WC1H 9NE Reg. Company No. 7850769 Charity No. 1146746/SC046837 Attachment 2 integrated care models to review to MBr. No comments were received. This item is now closed. Otherwise, all actions from the Action Log from the last meeting were complete or were covered on the agenda.
Actions: 2.1 TK to amend minutes and circulate to all.
3. Feedback from working group to discuss Dr Margrain’s research and what is needed from a larger study on effectiveness of rehabilitation Papers were received from JP and discussed. JP reminded everyone Dr Tom Margrain presented his research 'Effect of a Home Visit-Based Low Vision Rehabilitation Intervention on Visual Function Outcomes: An Exploratory Randomized Controlled Trial’ (http://iovs.arvojournals.org/article.aspx?articleid=2592947) to the committee in September 2016. He also informed the committee he would like to follow up this research with a larger study and would need funding for this. A working group was set up and Chaired by JP to discuss areas of interest for a larger study. The notes from this teleconference meeting in January 2017 had been circulated to all. The working group highlighted similar discussions had been held previously at RNIB’s Research Day in 2014 which focussed on rehabilitation and social care. The main themes identified by the working group and the RNIB Research Day were as follows: o economic impact; o quality of life and social isolation outcomes; o long term impact; and o impact on informal carers / family and support networks. It was agreed Dr Margrain’s study was difficult to read and a plain English version would be useful. SB agreed to speak to the researcher to request this. It was highlighted that Visionary are carrying out research on cost effectiveness of rehabilitation as well as RNIB. JF and SM
3 ______VISION 2020 UK 2nd Floor, 105 Judd Street, London WC1H 9NE Reg. Company No. 7850769 Charity No. 1146746/SC046837 Attachment 2 agreed to contact Alexa Sage about the research to join up and strengthen their research and avoid duplication. SM informed she has a meeting in March with Dr Parvaneh Rabiee, The IRIS project at The University of York and Catherine Dennison, RNIB to discuss the functional outcomes study which shows good outcomes. SM agreed to feedback to SB and TM about the study. It was stated Dr Margrain’s research did not show much benefit for wellbeing. It was agreed that, although quality of life and wellbeing are the right areas for research, it is not realistic to measure at the same time as looking at rehabilitation, as this will take time to develop and it would therefore need to be a longitudinal study. Also, it is difficult to pinpoint a specific cause for change in quality of life and wellbeing. It was suggested the research team at Birmingham City University may do research in rehabilitation. MJ and MBr agreed to draft a letter on behalf of the committee to Birmingham City University to ask if they have considered gaps in research of rehabilitation. PL reported he is involved in research in Northern Ireland with 0 – 4 year olds and how well they are doing with habilitation as well as a movement deficit in children study who have vision impairment from birth – http://www.vision2020uk.org.uk/queens- researchers-collaborate-guide-dogs-ni-pioneer-new-study- children-sight-loss/. MC reported the University of Nottingham are doing a study on the incidence of vision causing falls. MC agreed to find out more information about this including names of researchers to be circulated to everyone. It was agreed that, at this stage, we do not have any clearly defined areas of possible enquiry to report back to Dr Margrain, for inclusion in a larger study on rehabilitation.
Actions: 3.1 SB to contact researcher to request plain English version of Dr Margrain’s study 'Effect of a Home Visit-Based Low Vision Rehabilitation Intervention on Visual Function Outcomes: An Exploratory Randomized Controlled Trial’.
4 ______VISION 2020 UK 2nd Floor, 105 Judd Street, London WC1H 9NE Reg. Company No. 7850769 Charity No. 1146746/SC046837 Attachment 2 3.2 JF / SM to contact Alexa Sage, Visionary about joining up and strengthening their cost effectiveness of rehabilitation study and avoid duplication. 3.3 SM agreed to feedback to SB and TM about the functional outcomes study following her meeting in March with Dr Parvaneh Rabiee, The IRIS project at The University of York and Catherine Dennison. 3.4 MJ and MBr to draft a letter on behalf of the committee to Birmingham City University to ask if they have considered gaps in research of rehabilitation. 3.5 MC to contact researchers at University of Nottingham for information about their study on the incidence of vision causing falls as well as names of researchers and send to TK to be circulated to all.
4. Work plan – reports on progress against objectives: 4.1 Local Authorities a) Progress report on RNIB’s 'See, Plan and Provide' campaign (MB) ‘See, Plan and Provide’ campaign update o Local Authorities have been called on to ensure that rehabilitation is adequately funded and meeting the three steps of ‘See, Plan and Provide’ in the budget. o There is engagement with specific Local Authorities that are under performing. There are 31 Local Authorities that are being worked with closely. o Around 50% of blind and partially sighted people are not receiving rehabilitation, so there is more work to be done, although good progress is being made.
b) Action to enable local societies to monitor Local Authority Care Act compliance and hold commissioners to account (MB / SM) See above, item 4.1(a) Progress report on RNIB’s ‘See, Plan and Provide’ campaign. SM reported she met with Marsha de Cordova (MdC) further to the action at the previous meeting for them to discuss mutual areas of interest in their work. Marsha agreed to
5 ______VISION 2020 UK 2nd Floor, 105 Judd Street, London WC1H 9NE Reg. Company No. 7850769 Charity No. 1146746/SC046837 Attachment 2 provide SM with a list of Local Authorities she has approached so that duplication can be avoided. It was suggested it may be useful to have regular meetings with MB, SM, JF, MdC, someone from TPT/EVS such as Sharon Billingham, someone from Visionary such as Emma Cruickshank and someone from Guide Dogs. MBr agreed to contact Shaun Basham for his recommendation about someone being represented from Guide Dogs in this meeting and on the committee. It was also suggested it would be useful to find out how rehabilitation is being drawn into Local Eye Health Network plans. SM agreed to contact Phil Ambler at Thomas Pocklington Trust about this. SM also stated MdC will be creating a one page document to explain rehabilitation. It was agreed by all the document should be reviewed by the committee.
Actions: 4.1(b).1 MBr to contact Shaun Basham, Guide Dogs to request a representative from Guide Dogs join regular meetings with; MB, SM, JF, MdC, TPT/EVS and Visionary as well as this committee. 4.1(b).2 SM to contact Phil Ambler at Thomas Pocklington Trust to find out how rehabilitation is being drawn into Local Eye Health Network plans. 4.1(b).3 MdC to show the committee her one page document explaining rehabilitation, so that the Committee can comment before it is finalised.
c) Any reports of interest in this area from Scotland, Wales, Northern Ireland / Isle of Man (NI) (KR / SB / ES / PL) Isle of Man There was no report for Isle of Man.
Northern Ireland (PL) There is a huge deficit in Northern Ireland’s health budget. There are 10 Rehabilitation Workers completing a Deaf/Blind Online Diploma (2-year online course) by Gerard Swan.
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There is work to be done on the children’s eye health and sight loss pathway. There is approximately 4 – 5 months waiting list but people are being seen.
Scotland (KR) Local Authorities are experiencing budget cuts but they are being encouraged to keep rehabilitation services. West Scotland has good coverage. Most Local Authorities are commissioning joint/bi-sensory rehabilitation services. There is a good dialogue with ministers but this is not true at the local level as most local societies lack a campaigns team. MJ mentioned the Visual Impairment Network for Children & Young People (VINCYP) have highlighted there is a lack of paediatricians in Scotland and ophthalmology is under great deal of strain. SL reported he met with the Course Co-ordinator and students enrolled on Glasgow Caledonian University’s graduate diploma in Rehabilitation Studies course. SL will go back in one year to provide additional training.
Wales (ES / SB) Welsh Government is still looking for the next Chief Optometric Adviser. Newport lost their rehabilitation officer but with assistance and pressure from charities including Guide Dogs and RNIB, a rehabilitation officer has been recruited. However, the post is split with hearing loss. The Health Care Inspectorate report on ophthalmology has highlighted capacity issues, including failure for clinic treatment times, especially for second appointments, which means people are probably losing their sight. It also picked up on the importance of the Eye Clinic Liaision Officer role. MJ reported VISION 2020 UK has agreed to host on the website the updated eye health and sight loss pathway for children.
7 ______VISION 2020 UK 2nd Floor, 105 Judd Street, London WC1H 9NE Reg. Company No. 7850769 Charity No. 1146746/SC046837 Attachment 2 4.2 RNIB early intervention and rehabilitation project (JF / SM / SL) a) ‘Principles of Good Practice in Rehab’ – anything further to report JF reported the the ‘10 principles of good practice in rehabilitation’ (http://www.rnib.org.uk/rehab-principles) was delivered last year and work is ongoing to promote it. There have been 12,000 downloads of the principles. JF will be presenting the principles at the Visionary conference. Case studies demonstrating the principles and good aspects of service will be finalised in the next few months.
b) Progress with ‘Sight loss: what we needed to know’ Information pack There have been more than 3,000 downloads of the information pack. A survey of the pilot was carried out between September 2016 and January 2017. A cohort of 134 people were contacted four weeks after being given the information pack. The information received has been positive with most people stating the language and tone of the information pack are easy to understand, they understood the benefits of certification and they have sought support after reading the information pack. On average, people spent 46 minutes reading the information booklet. The next step is to gain funding from the Department of Health in order to roll out the information pack across the country.
c) Cost avoidance study – progress Cost avoidance study is being commissioned with Office for Public Management (OPM) to demonstrate the value of Vision Rehabilitation services. The second draft of the report has just been completed. OPM will run a session with RNIB on how to present the report.
8 ______VISION 2020 UK 2nd Floor, 105 Judd Street, London WC1H 9NE Reg. Company No. 7850769 Charity No. 1146746/SC046837 Attachment 2 d) Mentoring programme for training providers – progress SL explained that the mentoring programme was launched in January 2017. There are mentors on the programme and Visionary is assisting to identify mentees. Peer group discussions have begun. JF informed the Sensory Managers Network which is managed by Occupational Therapists is now open. The aim is to increase quality and inform them of continuing professional development. JF agreed to send MBr details for this to be promoted via the Association of Directors Adult Social Services (ADASS).
Actions: 4.2(d).1 JF to send MBr details for the Sensory Managers Network to be promoted via ADASS.
4.3 The Workforce a) Progress with development of Trailblazer Apprenticeship Standard (SL / JF) There was a delay in submitting the standard in January but it was submitted the previous day. The next step will be to develop an assessment framework. The qualification of level 5 is strongly recommended but it is not mandated. There is a possibility students can enrol from September 2017 but this is a tight deadline. Organisations have already expressed an interest in enrolling people on the course, including SB who it was recommended speak to Peter Cooke at Birmingham City University to flag up her interest.
b) Proposals for continuing professional development (CPD) (SL) See above, item 4.2(d) Mentoring programme for training providers – progress. SL stated mostly younger people are joining the RWPN and some organisations are sending staff. It would be good to get 9 ______VISION 2020 UK 2nd Floor, 105 Judd Street, London WC1H 9NE Reg. Company No. 7850769 Charity No. 1146746/SC046837 Attachment 2 Guide Dogs on board too. It was suggested SL speak to Carl Freeman, Guide Dogs to get them on board. PL stated despite SL and himself meeting with the Rehabilitation Workers in Northern Ireland, he is the only Northern Irish member. Information has been sent to managers but they have not circulated it to the Rehabilitation Workers. MJ offered to contact Patricia Higgins, Northern Ireland Social Care Council to encourage the Rehabilitation Workers to join RWPN.
Actions: 4.3(b).1 MJ to contact Patricia Higgins, Northern Ireland Social Care Council to encourage the Rehabilitation Workers to join RWPN.
4.4 NICE guidance for ‘Adults with lifelong or very severe hearing or visual impairment: health, well being and social care’ (MB) MB reported NICE are yet to publish a timetable for developing new guidance on 'Adults with lifelong or very severe hearing or visual impairment: health, well being and social care'.
5. Updates from other related work streams or VISION 2020 UK Committees (if relevant) Low Vision – formation of sub-group and mapping low vision committee structure / Helen Hamlyn report - http://www.pocklington-trust.org.uk/project/design-low-vision- aids-youth-perspective/ (MBa) o MBa informed that those invited to the VISION 2020 UK Low Vision Priority Setting Workshop held in April 2016 were sent an update the previous week. They were informed that the Clinical Council for Eye Health Commissioning is producing frameworks for commissioners on how to commission low vision services. Also the Integrated Care project will focus on low vision services. As NICE are no longer providing accreditation, it is not possible to produce accredited guidance for low vision.
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o The VISION 2020 UK Children Low Vision Sub-Committee has reviewed its Terms of Reference and created a work plan with 5 main priorities. o The Helen Hamlyn report has been published (see link above) which was funded by Thomas Pocklington Trust to design accessibility devices for managing day-to-day life. The feedback from the VISION 2020 UK Children Low Vision Sub-Committee was they were pleased the focus was on low vision but wanted to know how it was being taken forwards and wanted a product produced.
Integrated Care update (JP / MJ) o MJ informed the Committee that the VISION 2020 UK Integrated Care Programme Board meeting due to be held in March 2016 has been postponed until June 2016.
Anything relevant for the cross sector VISION 2020 UK Public Affairs Committee as they engage with Parliament? (MJ) o MJ explained that the VISION 2020 UK Public Affairs Committee is making MPs aware of eye health and sight loss by producing a constituency briefing each term. o The first constituency briefing was distributed in January 2017. There were good open rates. One MP completed all the asks in the briefing. Another MP used the information from the briefing in his newsletter. o The next constituency briefing will be in June 2017 which can include information about rehabilitation. Generic information can be added but having constituency based data will engage MPs more. o SM commented that the Sight Loss Data Tool does not have data on the number of Rehabilitation Workers at constituency level. The data provided on Freedom of Information requests is unreliable and inconsistent. However, JF is collating data on Sensory Managers and SL informed RWPN may be able to provide some information. o LB reported on the Disability Fight Back meeting which was held at the House of Lords on the previous day. They are lobbying government around issues, and employment 11 ______VISION 2020 UK 2nd Floor, 105 Judd Street, London WC1H 9NE Reg. Company No. 7850769 Charity No. 1146746/SC046837 Attachment 2 was the first issue. This may be something keep an eye on. LB offered to send the minutes of the meeting and paper about the group to TK to circulate to all. o PS announced that the PIP report by RNIB, TPT and Sense would be launched on 6 March. The report shows the assessment tool needs to change. PS offered to produce a paragraph summary of the report to be circulated to all.
Actions: 5.1 LB to send the minutes of the Disability Fight Back meeting held at the House of Lords yesterday and a paper about the group to TK to circulate to all. 5.2 PS to send TK a paragraph summary of the PIP report by RNIB, TPP and Sense being launched on 6 March for circulation to all.
6. Consultation on NHS England Accessible Information Standard – http://www.rnib.org.uk/campaigning- current-campaigns-accessible-information- campaign/nhs-campaign (MBr) The paper was received from MBr. The NHS England Accessible Information Standard came into effect on 1 August 2016 and aims to ensure that organisations providing NHS care or adult social care to people with a disability, impairment or sensory loss provide them with information in a format which they can easily read and understand. The standard is now being reviewed. MBr encouraged everyone to promote the consultation in their organisations and complete the response by the deadline of 10 March 2017. SM stated that Maria Chadwick, RNIB is producing a toolkit on how to implement the standard. SM offered to put Maria in touch with MBr.
Actions: 6.1 All to promote the NHS England Accessible Information Standard consultation in their organisations and complete the response by the deadline of 10 March 2017 – 12 ______VISION 2020 UK 2nd Floor, 105 Judd Street, London WC1H 9NE Reg. Company No. 7850769 Charity No. 1146746/SC046837 Attachment 2 http://www.rnib.org.uk/campaigning-current-campaigns- accessible-information-campaign/nhs-campaign 6.2 SM to put Maria Chadwick, RNIB in touch with MBr as she is producing a toolkit on implementing the standard.
7. Any other notified business Henshaw’s ‘7 Steps’ Document (MBr) o MBr informed the Committee that Henshaws have produced a simplified version of the eye health and sight loss pathway called ‘7 Steps’. However, the stage of the pathway involving transition from health services to social care lacks clarity, with a failure to highlight the registration process. o It was suggested the committee work collaboratively with Henshaws to propose changes to the document which has the potential to be a very useful tool. MBr agreed to contact Robert Cooper.
Actions: 7.1 MBr to contact Robert Cooper, Henshaws to suggest the committee works collaboratively with them to make changes and develop their document ‘7 Steps’.
8. Date of next meeting Date: Thursday 8 June 2017 Time: 12:30 – 15:30 (Note: earlier time, changed from 13:00 – 16:00) Venue: Pocklington Hub, Entrance D, Tavistock House South, BMA House, Tavistock Square, London, WC1H 9LG – https://www.google.co.uk/maps/place/BMA+House/
Future meeting dates (Note: all new earlier start and finish times 12:30 – 15:30) Monday 4 September 2017, Pocklington Hub, Tavistock Square Tuesday 28 November 2017, RNB
13 ______VISION 2020 UK 2nd Floor, 105 Judd Street, London WC1H 9NE Reg. Company No. 7850769 Charity No. 1146746/SC046837 Attachment 2 Summary of actions table
Item Action Member Minutes of meeting on 24 November 2016, matters arising not covered elsewhere on the agenda, and progress against Action Log from last meeting 2.1 TK to amend minutes and circulate to all. TK Feedback from working group to discuss Dr Margrain’s research and what is needed from a larger study on effectiveness of rehabilitation 3.1 SB to contact researcher to request plain English SB version of Dr Margrain’s study 'Effect of a Home Visit- Based Low Vision Rehabilitation Intervention on Visual Function Outcomes: An Exploratory Randomized Controlled Trial’. 3.2 JF / SM to contact Alexa Sage, Visionary about JF / SM joining up and strengthening their cost effectiveness of rehabilitation study and avoid duplication. 3.3 SM agreed to feedback to SB and TM about the SM functional outcomes study following her meeting in March with Dr Parvaneh Rabiee, The IRIS project at The University of York and Catherine Dennison. 3.4 MJ and MBa to draft a letter on behalf of the MJ / committee to Birmingham City University to ask if they MBa have considered gaps in research of rehabilitation. 3.5 MC to contact researchers at University of Nottingham MC / TK for information about their study on the incidence of vision causing falls as well as names of researchers and send to TK to be circulated to all. Workplan 4.1 Local Authorities: (b) Action to enable local societies to monitor Local Authority Care Act compliance and hold commissioners to account 4.1(b).1 MBr to contact Shaun Basham, Guide Dogs to MBr request a representative from Guide Dogs join regular meetings with; MB, SM, JF, MdC, TPT/EVS and Visionary as well as this committee.
14 ______VISION 2020 UK 2nd Floor, 105 Judd Street, London WC1H 9NE Reg. Company No. 7850769 Charity No. 1146746/SC046837 Attachment 2 Item Action Member 4.1(b).2 SM to contact Phil Ambler at Thomas Pocklington SM Trust to find out how rehabilitation is being drawn into Local Eye Health Network plans. 4.1(b).3 MdC to show the committee her one page document MdC explaining rehabilitation, so that the Committee can comment before it is finalised.
4.2 RNIB early intervention and rehabilitation project (d) Mentoring programme for training providers – progress 4.2(d).1 JF agreed to send MBr details for the Sensory JF Managers Network to be promoted via ADASS.
4.3 The Workforce (b) Proposals for continuing professional development 4.3(b).1 MJ to contact Patricia Higgins, Northern Ireland Social MJ Care Council to encourage the Rehabilitation Workers to join RWPN. Updates from other related workstreams or VISION 2020 UK Committees (if relevant) Anything relevant for the cross sector VISION 2020 UK Public Affairs Committee as they engage with Parliament? 5.1 LB to send the minutes of the Disability Fight Back LB / TK meeting held at the House of Lords yesterday and a paper about the group to TK to circulate to all. 5.2 PS to send TK a paragraph summary of the PIP PS / TK report by RNIB, TPP and Sense being launched on 6 March for circulation to all. Consultation on NHS England Accessible Information Standard 6.1 All to promote the NHS England Accessible ALL Information Standard consultation in their organisations and complete the response by the deadline of 10 March 2017 – http://www.rnib.org.uk/campaigning-current- 15 ______VISION 2020 UK 2nd Floor, 105 Judd Street, London WC1H 9NE Reg. Company No. 7850769 Charity No. 1146746/SC046837 Attachment 2 Item Action Member campaigns-accessible-information-campaign/nhs- campaign 6.2 SM to put Maria Chadwick, RNIB in touch with MBr as SM she is producing a toolkit on implementing the standard. Any other notified business Henshaw’s ‘7 Steps’ Document 7.1 MBr to contact Robert Cooper, Henshaws to suggest MBr the committee works collaboratively with them to make changes and develop their document ‘7 Steps’.
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