Make It Accessible now to end healthcare information drought for blind and partially sighted people, urges RNIB

• Inaccessible healthcare information putting the health of blind and partially sighted people at risk
• More than half of people with sight loss surveyed said it would have a hugely positive impact on quality of life to be able to receive health information in the format they need, which is their legal right
• RNIB launches new campaign calling on NHS England to provide accessible information so that more than one million vision impaired people can receive #MyInfoMyWay

New research by the Royal National Institute of Blind People (RNIB) found that more than 60 percent of people with sight loss surveyed said it would have a hugely positive impact on quality of life to receive healthcare information in the format they need.

Research from 2022 found that 77 per cent of people with accessible information needs reported rarely, or never, receiving information in alternative formats.

The consequences of not getting information that people can read and understand can result in serious harm and safety issues. People have missed vital appointments, cancer screenings or been unable to use home test kits because of lack of clear instructions in an accessible format.

Missed GP appointments cost the NHS around £216m a year, and delays because of inaccessible patient information further compound waiting list problems. Not being able to access personal health information can also cause embarrassment and loss of dignity. Blind and partially sighted people said they’d had to ask a child or friend to read out their most personal medical details. Others said they compromised their treatment because identification and dosage information on medication could not be read.

The NHS ‘Accessible Information Standard’ was introduced in England in 2016 and should have ensured that blind and partially sighted people receive all health and social care information in their required format. For blind and partially sighted people this could include large print, braille or audio.

However, implementation of the Standard has varied significantly across the country. RNIB and Signhealth research from 2021 revealed that just 35 per cent of healthcare professionals reported their organisation as providing regular training around the Standard.

With an updated version of the Standard due to be published by NHS England in July, RNIB welcome the opportunity to ensure the right of blind and partially sighted people to receive health and care information in their required format is upheld. For this right to be a reality for everyone, the updated Standard needs to be prioritised and fully implemented.

David Aldwinckle, RNIB’s Director of Insight and Customer Voice, said: “Making healthcare information accessible isn’t a luxury or an add-on, it’s every patient’s right. I don’t want other people with sight loss to experience what I did after I had an operation under anaesthetic.

“Following the procedure, I was given a bundle of leaflets about pain management, which as someone with sight loss I couldn’t read. Getting that information in an alternative format would have prevented me from waiting at home in increasing agony until my wife returned home and could tell me when I could next take pain relief.”

Angela Millgate, 55, from Birmingham, who has nystagmus, said: “It can be stressful enough having a hospital procedure or a medical appointment, without the added complexity of not getting information about the treatment in a format I can read. I ask for everything to be provided to me by email so I can enlarge the text on my phone to be able to read it, but I still get many letters in standard print.

“I have been told to look up information on the internet, but that’s not okay because this can lead to medical misinformation. I was taking tablets and some of the side effects are tiredness and dry eye, and I already have dry eye which could be made worse, but I wasn’t aware as I didn’t have links to up-to-date information.”

People with sight loss shared with RNIB how they had thrown away healthcare letters because they hadn’t been able to read them or had been asked private healthcare questions verbally in front of a waiting room full of other people because paperwork was not accessible for them to complete independently. A braille reader told RNIB how pharmacists often put stickers over the top of essential braille information on medication packets such as the name and dosage which hugely impacts on patient safety.

There are positive experiences, which emphasise the difference effective implementation of the Standard can make, with one person telling the charity they felt more confident when reassured they would have a longer breast cancer screening appointment through information provided accessibly.

Louise Ansari, Chief Executive of Healthwatch England, said: “RNIB’s research mirrors our own findings4 which show the many barriers people with communication needs face to accessing health and social care because they do not receive information in the format they need. And this is despite the fact that their rights to accessible information are protected in law.

“NHS England has undertaken a review of the Accessible Information Standard and welcomed the recommendations patients and services said would help to ensure that people get accessible health and care information.

“While we anticipate the new Standard will bring strengthened accountability for health and services to meet people’s communication needs, it’s vital services are supported to put it into practice, and that there’s a continued national focus on ensuring equitable access to healthcare for everyone.”

RNIB is working closely with NHS providers to ensure the Standard is more consistently implemented across England. In Wales, Scotland and Northern Ireland, the charity is also working with providers to ensure they meet their legal obligations to provide blind and partially sighted people with accessible healthcare information.

For more information about RNIB’s #MyInfoMyWay campaign to make healthcare information accessible for blind and partially sighted people in health in social care settings, see the RNIB website.

1. RNIB carried out a study in 2022 into the quality of life and wellbeing for blind or partially sighted people on a broad range of topics, including healthcare. Receiving healthcare information in a preferred format was overwhelmingly endorsed as being important by the 477 respondents, with 63% reporting it has a huge positive impact on their quality of life. However only 40% of respondents reported always being able to receive healthcare information in a format they are happy with.
2. Sign Health Review of the NHS Accessible Information Standard, which RNIB was among contributors to, February 2022
3. Cost of missed GP appointments NHS England, 2 January 2019
4. Last year, Healthwatch England uncovered that only a third, 35%, of health and social care providers that replied to their Freedom of Information request fully complied with the Accessible Information Standard, including asking about people’s communication needs and then acting on this information. : https://www.healthwatch.co.uk/news/2022-02-21/accessible-information-standard-findings-our-foi-requests

The Accessible Information Standard covers England, and although frameworks for ensuring patients communication needs are met differ across the devolved nations, similar issues are being encountered by blind and partially sighted health service users in Wales, Scotland and Northern Ireland.

All media enquiries to Richard Wevill on 07749 455653 or [email protected]. For urgent enquiries out-of-hours, please call 07968 482812.

We are the Royal National Institute of Blind People (RNIB).

Every six minutes, someone in the UK begins to lose their sight. RNIB is taking a stand against exclusion, inequality, and isolation to create a world without barriers where people with sight loss can lead full lives. A different world where society values blind and partially sighted people not for the disabilities they’ve overcome, but for the people they are.

RNIB. See differently.

Call the RNIB Helpline on 0303 123 9999 or visit www.rnib.org.uk