We are launching My Info My Way to make accessible health and care information a reality
Blind and partially sighted people have a legal right to NHS and social care information which they can read and understand. Our new campaign explains why this is so important, and how you can request information in your required format.
People with sight loss continue to face serious risks due to inaccessible health and care information, leading to missed medical appointments, delayed test results, misunderstood treatment instructions, unread medication labels and letters from doctors.
As NHS England prepares to update the Accessible Information Standard in July 2023, we are launching the My Info My Way campaign. We are calling on NHS and social care services to make accessible information a reality, and empower blind and partially sighted people to speak up for this important right.
How inaccessible health and care information affects us
Many blind or partially sighted people have shared their experiences with RNIB, showing the impact inaccessible information can have on patient safety, health, wellbeing, independence and privacy.
We’ve heard from people who have thrown away healthcare letters because they hadn’t been able to read them; others have related how they’ve been asked sensitive health questions verbally in front of a full waiting room, rather than being provided with questions in the appropriate alternative format.
Inaccessible information can also stop people accessing vital NHS screening programmes. In particular, we’ve heard from people unable to access screening for bowel cancer, which can help prevent or spot the disease at an early stage, when it's easier to treat.
David Aldwinckle, RNIB’s Director of Insight and Customer Voice, said: “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 and could tell me when I could next take pain relief.”
What My Info My Way is calling for
Accessible information enables blind and partially sighted people to manage their own health and care with the same level of independence and privacy as everyone else. It means being able to receive information from services like GP practices, hospitals and local social care services, in alternative formats including large print, email, audio and braille.
We are saying that if you’re blind or partially sighted: when it’s your information – about your health or social care – it needs to be provided your way.
The NHS Accessible Information Standard
The Standard was first introduced in 2016, and sets out how NHS and social care services in England must provide accessible information to patients with communication needs.
This includes how to record patient information needs, how these should be shared across services, and how to meet these information needs. By following the Standard, NHS and social care services will also be fulfilling patients’ legal rights under the Equality Act 2010.
We expect the updated Standard to address the main hurdles to providing accessible information, so we need to take this opportunity to ensure it is consistently put into practice
How to request accessible information
We’ve created a new guide for blind and partially sighted people, explaining how to request accessible information from NHS and social care services and what to do if you don’t receive it. We have versions for England, Scotland, Wales, and Northern Ireland, so you can refer to the appropriate laws and standards wherever you live.
Share your experience
If you’re blind or partially sighted, you can help us speak up about the importance of accessible health and social care information by sharing your experience – good or bad.
Resources for health and care staff
We’ve put together information and resources for NHS and social care staff, to help them understand and implement accessible information for blind and partially sighted patients and service users. We’re also aiming to work with NHS England to develop training for staff, to meet the needs of patients with sight loss.
The scale of the problem
RNIB has campaigned on this issue for many years, and in 2022 we worked with a coalition of charities to highlight the scale of inaccessible health and care information. In response to our survey:
- 77 per cent of people with accessible information needs reported rarely or never receiving health or care information in alternative formats.
- One in three health and social care providers were unaware or unsure of the existence of the NHS Accessible Information Standard.
- 37 per cent of health and social care professionals reported training on the Standard has never occurred.
On social media, you can follow our campaign with the hashtag #MyInfoMyWay.