RNIB survey calls for ideas on how to improve support after sight loss

A new survey is aiming to gather ideas on how to improve support for blind and partially sighted people after diagnosis.

The Royal National Institute of Blind People (RNIB) is hoping to better understand the state of post-diagnostic support across the sight loss sector.

The charity’s Out of Sight report, published in 2024, found that 26% of local authorities have left blind and partially sighted people waiting more than a year for a vision rehabilitation assessment.

Now, the RNIB is calling on professionals, patients and sight loss sector stakeholders for new ideas about how post-diagnostic support for those with sight loss could be more effective.

The charity’s aim is that those diagnosed with sight loss get the support they need, when they need it, in a way that works for them.

The research will also engage people with lived experience of sight loss and their friends and family.

Those who have experienced sight loss, those who work with people with sight loss in the post-diagnostic space, and stakeholders involved in post-diagnostic support or services, are all encouraged to complete the survey.

Those who have recently been given a sight loss diagnosis are particularly welcome to take part in the research.

A long wait for support

Charmaine Ashpole, from Brent, lost most of her sight in 2018 after contracting meningitis.

Ashpole spent four months in hospital, where there was little understanding of sight loss.

After being discharged from hospital she had to wait five months for a home visit from a vision rehabilitation specialist.

“People need support much more quickly than that,” Ashpole said.

She added: “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.

“Once I got support from the vision rehab specialist, though, it was fantastic. She’s brilliant in helping me to get out and about.”

The vision rehabilitation specialist has “done me a massive service,” Ashpole said, “but she is one person for the whole of Brent. There needs to be more of her – four or five of her perhaps.”

Organisations need to collaborate in order to improve the system of support for those with sight loss, Ashpole believes.

The RNIB’s head of strategic innovation, Caroline Beard, said: “Losing your sight can be a very traumatic experience; it can turn your world upside down and affect all aspects of your life.

“Unfortunately, the reality is that too many people are not getting the post diagnostic support they need when they need it most, with some people waiting up to a year for help. This is despite the fantastic work being done by many charities and under-resourced social services teams.”

Beard added: “Those responsible for providing vision rehabilitation are under huge pressure, as are local authority budgets. It’s time to look at how we can do things differently to help make the system work better for everyone.”

The survey is open until 2 April and can be accessed here.