Improving the information provided to people losing their sight at the time of certification

Research Lower feelings of wellbeing amongst people with sight loss compared to rest of population (My Voice 2015) People feel less optimistic about the future (My Voice 2015) Lack of information given to people when first diagnosed (Thetford et al 2009)

Background RNIB, Blind Veterans and ADASS had a series of meetings over two/three years with DH regarding the CVI form and process DH added a question to the Care Act consultation, asking if RNIB should have access to contact details of newly certified people RNIB, Guide Dogs and the Certification office met to consider a revised process and agreed the need for a non- branded information pack RNIB sponsored establishment of Cross Sector Working Group to develop an information booklet

Principles agreed The booklet should be ‘non branded’ It should be co-produced with people who have recent experience of the CVI process We should take the best of what is already available The focus should be on NHS England initially

Cross Sector Working Group Project Sponsor:Philippa Simkiss, RNIB Project Lead: Mark Godfrey Project Members:Carl Freeman, Guide Dogs Lara King, Blind Veterans UK Alison Oliver, Visionary Richard Wormald, VISION 2020 UK Josh Feehan, RNIB Rea Mattocks, RCopht Pete Fahy, ADASS Other groups to be kept informed, provide information, and comment on the draft information pack

Methodology People with recent experience of the CVI process identified by voluntary organisations Twelve people with sight loss and four partners/carers participated in three workshops Cross Sector Working Group held weekly teleconferences and telephone, and postal correspondence with people with sight loss Draft document shared with many other people with sight loss, groups and professionals

Uniqueness and strength of collaboration and co-production Key principal and biggest strength People with sight loss had varying knowledge and experience Group sessions, shared stories, what was important to people and what was likely to be important for others in similar circumstances Reviewed information resources from other sectors regarding language and tone people preferred Benefits people perceived for themselves, as well as contributing to something they felt was extremely valuable for other people

‘Sight Loss – What we needed to know’ To be launched at The Royal College of Ophthalmologists Congress 25 May On-line version available from Wednesday 25 May at 10am Stand at Vision UK Conference 14 June

Comments from people with sight loss who have written the booklet “It’s a pleasure and a privilege to have been involved in this most worthy and badly needed project. I only wish I’d been given the benefit of all the information when I was first diagnosed” “Wow, this is a document that I’m proud to be part of. It really sounds like it has been written by visually impaired people for visually impaired people” “It’s everything you need to know” “Having comments from people who have been through similar situations is reassuring to know that you are not the only one. I was pleased to be a part of it, and I hope it will be useful to others as it was to me”

Carrie MacEwan, President, The Royal College of Ophthalmologists “This information booklet has been written by those who are best qualified to do so – people who have experienced visual loss. It therefore contains information that they collectively agree will be helpful for anyone who is experiencing a new diagnosis of sight loss. Currently a comprehensive guide has been lacking and this booklet is much needed and will be appreciated for its supportive and practical advice”

Other comments received from people across the eye health sector “Outstanding” “Reading the booklet was just like unexpectedly discovering a chocolate bar that has been left in your cagoule pocket by your mum when you are on an arduous Gold Duke of Edinburgh expedition and your tent has just blown away” “This is to be extremely warmly welcomed” “A very useful resource” “The booklet is excellent and needed”

Pilot and Evaluation Pilot over three sites – Moorfields, Whipps Cross and York, led by Richard Wormald, to gain patient views on the value of the booklet Possible pilot in Scotland and Northern Ireland Voluntary organisations to distribute and gain views about the booklet Different methods of dissemination to be tested

Next steps Undertake pilots Evaluation Discussion with Department of Health regarding dissemination The aim is that the booklet will be available for 20,000 people e ach year who go through the CVI process

Updating the CVI Sub-group of The Royal College of Ophthalmologists Professional Standards Sub-Committee established to update the CVI, raise awareness amongst Ophthalmologists and improve patient information and experience DH updating explanatory notes for CVI Meeting with DH – welcomed sub-group of Professional Standards Sub-Committee updating the CVI Examined updated forms for Wales and Scotland, alongside existing forms for England and Northern Ireland Draft updated CVI for England and Northern Ireland developed Share for comments across the sector prior to further consultation