Blind people are being put "at risk" when the NHS provides them with "inaccessible" information about their health, a charity has warned.
People with sight loss have missed appointments, cancer screenings, or have been unable to use home test kits because of a lack of clear instructions in an accessible format, according to the sight loss charity RNIB. It warned that denying people access to their information can also "cause embarrassment and loss of dignity".
One patient said it was easier for her to get a bank statement or gas bill in an accessible format compared with getting private information from the NHS. Linda Hansen, from Bradford, who is severely sight-impaired, said that she needed to get her daughter to read her the results of a medical exam which was sent to her in print format.
Ms Hansen, 62, said: "Last week I received the results of a smear test and the letter came in print format. I had to get my daughter to read it out to me, so she had to find out the result before even I could.
"I can get my bank statement or a gas bill in accessible formats, but yet I still receive health information that I can’t read. What could be more personal than your health status?"
Meanwhile, she described how the NHS had cancelled a separate appointment but only informed her by letter. Not knowing the appointment was cancelled, she still made her way to the hospital via taxi. When Ms Hansen arrived she was told the appointment had been cancelled and said she was asked, "Did you not see the letter?".
New Legal Requirement for the NHS Communication
A new RNIB campaign – My Info My Way – has been launched calling for all blind and partially sighted people to be given accessible information. The charity said that a failure to provide information in an accessible format is putting blind and partially sighted people "at risk". It called on NHS England to ensure that blind and partially sighted patients can have their information in an accessible format.
A new poll of 477 people who are blind or have sight loss conducted by the charity found that 6 in 10 (63%) people with sight loss believe receiving healthcare information in the format they need would have a "hugely positive impact" on their quality of life.
There is a legal requirement for NHS organisations to ensure people receive information in a format they understand and are given appropriate communication support. But the RNIB said implementation of the Accessible Information Standard is "patchy" across England. It said an updated version of the standard is due to be published in the summer and called for it to be "prioritised and fully implemented" so people get appropriate support.
David Aldwinckle, from the RNIB, said: "Making healthcare information accessible isn’t a luxury or an add-on, it's every patient's right. As a person with sight loss, Mr Aldwinckle shared that he had also received information from the NHS that he could not review.
"I don't want other people with sight loss to experience what I did after I had an operation under anaesthetic," he explained. "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."
Another patient, Angela Millgate, 55, from Birmingham, who has nystagmus – a condition where the eyes move rapidly and uncontrollably – 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."
Legal Duty to Provide Clear and Appropriate Communication
Last year, Healthwatch England published results of a poll among people with extra communication needs, including deaf and blind people, which found that 1 in 4 had been "refused" communication support while accessing NHS care. The survey of 605 people in England found 28% said they had been refused a request for support to understand healthcare information – including requests for information being provided in formats such as Braille, British Sign Language, and Easy Read.
Commenting on the RNIB campaign, Louise Ansari, chief executive of Healthwatch England, said: "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."
An NHS spokesperson said: "All NHS services have a legal duty to provide clear and appropriate methods of communication to ensure that patients, service users and carers can fully understand everything they need to about their treatment and care.
"NHS England has worked with partners to review the Accessible Information Standard, including how to ensure that people's communication needs are met, and we are committed to publishing the revised standard this summer."