Charities and blind and partially sighted people join forces to produce guide for those newly diagnosed with sight loss

Post date: 
Wednesday, 25 May 2016
CVI Information Pack

A group of leading sight loss organisations are today launching a trial of a new, free information booklet to help those newly diagnosed with sight loss.

The booklet, Sight Loss: What we needed to know, has been co-produced with 12 people who are living with sight loss and four carers, with the goal of answering the questions, and addressing the concerns, they felt they had when first coming to terms with their sight loss.
It also offers practical advice about the type of help and support that is out there for those who have lost or are losing their sight.
One co-producer, Isa, says in the booklet: “I was diagnosed with macular degeneration. It was a trying and frightening time for me. I was not given any information and what I needed was a guide to where to find answers to my questions. If I’d had this booklet at the time, it would have helped me. I hope it helps you to find the support you need.”

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Every day 100 people in the UK are told they’re losing their sight, many of whom have to manage for years without any help or support. This booklet provides information about the specialist organisations who can provide the necessary practical and emotional support to promote independence and help people with sight loss face the future with confidence.
The information booklet is being launched at The Royal College of Ophthalmologists’ Annual Congress 2016 at the ICC in Birmingham and piloted in Whipps Cross, York and Moorfields hospitals later this year. You can download a copy below:
Professor Caroline MacEwen, President of the Royal College of Ophthalmologists, said: “This information booklet has been written by those who are best qualified to do so – people who have experienced visual loss. It 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.”

The Association of Directors of Adult Social Services, Blind Veterans UK, Guide Dogs, RNIB, the Royal College of Ophthalmologists, VISION 2020 UK and Visionary teamed up to produce Sight Loss: What we needed to know, in collaboration with blind and partially sighted people. The team has been shortlisted for a Vision Pioneer Award 2016 in the category of ‘Team of the Year’. 

Further information

  • Ophthalmologists and other eye health professionals are encouraged to send their feedback on the booklet to [email protected]
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