12.04.2024

Half of blind people left off NHS register they need to access vital help

Thousands of blind people are missing out on NHS services that are essential for helping them with everyday tasks such as cooking and reading, campaigners have warned.

Many patients have told The Mail on Sunday that, as a result, they are stuck at home and have to rely on the help of family and friends.

In order to access vital help – such as white cane training, adaptations to their homes and machines to help with reading – patients must be officially certified as blind. Typically, patients are considered blind if they struggle to read the top row of an optician’s letter chart. They are then added to an official Government register of partially sighted people.

The process, known as a certification of vision impairment – or a CVI – also entitles them to disabled parking spaces and employment protection under the Equality Act.

But, according to research seen by the MoS, half of eligible people are uncertified. ‘It is sadly common that many people who are blind and partially sighted are not told they are eligible for a CVI,’ says Cathie Burke, of the Royal National Institute of Blind People.

In order to access vital help – such as white cane training, adaptations to their homes and machines to help with reading – patients must be officially certified as blind

Typically, patients are considered blind if they struggle to read the top row of an optician¿s letter chart

Typically, patients are considered blind if they struggle to read the top row of an optician’s letter chart

In order to access vital help ¿ such as white cane training, adaptations to their homes and machines to help with reading ¿ patients must be officially certified as blind

‘It’s really important that people are registered as blind when eligible and we want to see clinicians being more active in helping patients access certificates.’

More than two million people in the UK are living with sight loss, around 340,000 of whom are registered blind. About half of all cases of severe sight loss are triggered by age-related macular degeneration (AMD). The condition affects the middle part of the eye, called the macula, and while it does not cause total blindness it can make everyday activities near-impossible.

More than 500,000 people in the UK suffer from glaucoma, where the nerve which connects the eye to the brain becomes damaged, and often end up partially sighted in older age.

Other causes of sight-loss include cataracts – where the lens inside the eye becomes cloudy – and diabetes-related sight loss.

If a patient’s vision has deteriorated to the stage where doctors believe it cannot be improved, they are eligible for a CVI. Whether their vision has reached this point has to be judged by an eye specialist who measures their ability to see detail at a distance and their vision from the side of their eye.

The certificate allows blind people to register with their local social services and apply for help, such as house adaptations – for example, rails fitted in their bathroom to guide them and stop them falling.

The certificates also protect blind people under the Equality Act, which means employers can’t fire them for their disability and must make adjustments to ensure they can continue working.

However, a UK study, published in the medical journal Nature in 2020, found that just 49 per cent of those eligible for a CVI had one.

‘Sometimes new NHS doctors, or those who have come from overseas, are less aware or confident regarding certification,’ says Ms Burke. ‘Often patients do not know they are eligible, so do not push to get the certificate.’

Record-long NHS waiting lists means there’s little time to carry out the certification, doctors say.

‘These certificates are very helpful, but they have to completed by consultants and we have less time than ever,’ says Dr Christiana Dinah, the ophthalmology research lead at London North West University Healthcare NHS Trust.

‘With our current workload, it’s easy to see why there are delays in getting patients registered.’

Dr Dinah points out that some hospitals employ staff members, known as eye clinic liaison officers, who are helping get people registered. ‘They’ve made a massive difference and more should be employed across the UK.’

One patient who understands the importance of a CVI is 76-year-old Simon Mahoney, from Derbyshire, who is blind due to glaucoma.

The former social care worker’s condition deteriorated to the point where he became blind in 2012, but it took two years to get a CVI.

He says: ‘No one ever mentioned that I needed one. When I finally found out what a CVI was, I went to my consultant and asked for one. He asked me, “Why would you need one of those?” He clearly didn’t understand the importance of it for someone like myself.’

Mr Mahoney says he’s far from alone, adding: ‘One friend was told the wait to get one would be six months, despite the fact her eyesight had completely gone.

‘I have friends who get their advice on blindness from the social media app TikTok, rather than go to clinics where they think they won’t be helped.

‘The NHS must get better at registering blind people.’

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