The Royal National Institute of Blind People (RNIB) is launching a new research study to better understand post diagnostic support across the sight loss sector.
People who have experienced being diagnosed with a sight condition know it’s not always easy to get the right help.
A wide range of organisations including local councils, the NHS, charities, including The Royal National Institute of Blind People (RNIB), offer various forms of support, but overall it remains a postcode lottery with experience varying greatly in different parts of the UK.
RNIB’s 2024 Out of Sight report found that 26 per cent of local authorities leave blind and partially sighted people waiting more than a year for a vision rehabilitation assessment.
RNIB is reaching out to professionals and partners right across the sight loss sector to gather new ideas about the way post diagnostic support can be more effective.
Insight from the online survey will shape post diagnostic support, so that people diagnosed with sight conditions get the support they need at the time they need it most and in a way that works for them.
The Charity needs people to take part who:
· Work directly with people with sight loss in the post-diagnostic space;
· Are stakeholders who are active or involved in post-diagnostic support or services;
· Have experienced sight loss, especially those who have recently been given a sight loss diagnosis;
· Are friends and family of the above group.
To take part in the survey visit https://www.thiscovery.org/rnib/improve-post-diagnostic-support-sight-loss-landing
Mother of two Charmaine Ashpole (pictured above) from West London lost most of her sight in 2018 following a serious illness. She experienced severe sight and hearing loss and was in hospital for four months.
“The general hospital care was fantastic but there was nothing at all at that stage about the sight loss,” said Charmaine.
“My occupational therapist was great, but had no real understanding of the sight loss element so was trying to do things like get me into a kitchen to make a sandwich which was very difficult and was putting extra pressure on me. In the end I almost felt stigmatised for having sight loss on the hospital ward.
“Then I came home from hospital – it was four days before my youngest daughter’s third birthday - and all I knew was that there was a really long wait for a vision rehabilitation specialist. I had to wait about five months for a home visit, but people need support much more quickly than that.
“When I attended an NHS eye clinic, I found the wait for appointments could be hours long and a few times I’ve had to leave without being seen to pick up my kids from school."
To find out more about the survey visit https://www.thiscovery.org/project/improve-post-diagnostic-support-sight-loss
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