More than 115k blind and partially sighted people left without skills to thrive after sight loss
More than 115,000 blind and partially sighted adults across the UK have been left without the crucial support they are entitled to after being diagnosed with sight loss, according to research by the Royal National Institute of Blind People (RNIB).
At what can be an extremely traumatic moment in people’s lives, gaps and inconsistencies in the provision of local authority vision rehabilitation services mean people who’ve just been told they’ve lost their sight aren’t getting the support they need to rebuild their lives.
Vision rehabilitation sessions, which must by law be provided by local authorities, offer a vital first line of assistance in supporting blind or partially sighted people to stay in work, to live in their home safely and to get out and about with confidence.
New RNIB research reveals an under-resourced, forgotten system, with a postcode lottery of care across the country – which is also long overdue for reinvention in a changing, digital era. It is also the only social service not monitored by care regulators, meaning there is no effective tracking of the level and quality of service being provided.
As party conference season approaches, RNIB is calling on UK governments to take immediate action to invest in and modernise the service and make sure no one is left behind.
Vivienne Francis, RNIB’s Chief Social Change Officer, said: “When delivered well, vision rehabilitation can be a life-changing first step to rebuild confidence, offer emotional support and practical skills.
"RNIB receives tens of thousands of calls a year from people struggling with diagnosis. We see people quitting their jobs unnecessarily, afraid to go out and about, losing their relationships; our counselling service is oversubscribed. It is simply inexcusable that people are missing out on the support they need, based on where they live, because their right to receive it is loosely upheld or they are unaware of the statutory support they’re entitled to. Even more worrying, even when pushing for support, they are just not receiving it.
"While vision rehabilitation may not currently meet all needs, as long as so many blind and partially sighted people fail to receive even a basic level of support, they are on their own. We, ultimately, want to work with Government, business and society at large to ensure blind and partially sighted people participate on their terms, but we need to see the fundamentals in place now.”
Charmaine Ashphole from West London was suddenly taken ill in 2018 with meningitis. This led to a stroke which left her totally blind in her right eye and with little residual vision in her left eye. She spent four months in hospital and once she contacted her local authority rehabilitation service, she had to wait about five months for an appointment.
Charmaine said: “The physiotherapy at the hospital was excellent in getting me back on my feet but there wasn’t really a focus on my sight loss.
“I was on the waiting list for the vision rehabilitation specialist from May to October. I had two very young daughters at home and I had been knocked for six by the whole thing. At first I just had to sleep a lot.
“There is a phenomenal waiting list and like any local authority, mine is massively under-resourced. It is really worrying and concerning. I’ve had to fight for everything I’ve got.”
Once the rehabilitation started, Charmaine says her vision rehabilitation specialist was “absolutely brilliant” and sings her praises. Living on a steep hill in an area with uneven street paving, she received help getting to grips with her white cane which she describes as her “magic wand”.
She said: “The white cane training was an absolute lifeline and the rehabilitation officer was extremely good, it’s done me a massive service.”
Charmaine had weekly appointments for about six months but says it would be much better if people could tap into the services for longer as and when they are required.
Just over half (56 per cent) of blind and partially sighted people surveyed by RNIB had received vision rehabilitation support. More than a third had not, with the remainder saying they were currently awaiting support, and a small number saying they had declined the offer.
If this figure is representative of the total UK adult population who are registered blind and partially sighted, it means at least 115,000 people have been left without the support they’re entitled to. To make matters worse, 58 per cent of those who didn’t receive support said they had not been made aware support was available.
Where the service is being offered, it often doesn’t fully meet people’s needs due to pressures on resources. Less than half of those RNIB questioned were confidently able to move around outdoors (43 per cent) or within the home (42 per cent), and even less felt they could travel independently (28 per cent) after support received. Only 25 per cent felt they could independently complete daily living tasks, and half did not feel vision rehabilitation sufficiently addressed the emotional and psychological impact of sight loss.
The charity is calling for urgent action to make sure blind and partially sighted people are made aware of the services they are entitled to and more understanding of the emotional impact to be considered within local authority pathways; so anyone who initially refuses help is followed up and supported over time.
As people are registered blind or partially sighted, they should be offered an assessment within 28 days so they have a realistic picture of what their future life will be like and how adaptations can help them continue to live independently; preventing people from quitting their jobs and reducing the impact on mental health.
Services need reform to ensure they are adequately reflecting the emotional needs of those diagnosed, as well as enabling blind and partially sighted people to take advantage of the latest technology to equip them to live in today’s world.
The government need to grasp this issue, ensuring national oversight through the CQC to ensure local authorities are providing a consistent, quality service which people deserve.
RNIB’s full policy recommendations:
- Blind and partially sighted people must be made aware of their rights and the services they are entitled to expect.
- Local authorities should ensure everyone with a visual impairment is offered a specialist vision rehabilitation assessment within 28 days of initial contact with the local authority.
- Local authorities should modernise vision rehabilitation training, to reflect the increased use of technology, enabling people with sight loss to be equipped with digital skills so they can take advantage of the benefits technology can bring.
- The UK Government should improve legislation to hold local authorities to account via bodies such as the CQC. CQC should have its remit extended to include rehabilitation services.
- The UK Government should commission the National Institute for Health and Care Excellence to develop guidelines and quality standards, with performance data published annually by each local authority.