Nine out of ten blind people denied access to health information
New research by Sight Loss Councils has found that as many as nine in ten blind people do not receive essential information about appointments, medical treatment and medications in an accessible format.
The Accessible Information Standard (AIS), introduced by NHS England in 2016, states that people who need healthcare information in an alternative format, such as large print, braille or easy read, should be provided with it. However, five years on, 90% of blind and partially sighted people still do not receive information in the format they need and more than half of local NHS bodies have not developed local policies to deliver on the standard’s requirements.
Mike Bell, Sight Loss Councils’ National Public Affairs and Campaigns Lead, said:
“It is shocking that so many blind and partially sighted people still do not get medical information in accessible formats such as braille or large print – even when they’ve expressly asked for it. Some local NHS bodies, such as hospital trusts and GP practices, have ensured visually impaired patients get the support and information they need, but too many have not. Our research found that barely half of NHS trusts have thorough policies in place to deliver accessible information and many have implemented no local training for staff on how to meet the accessible information needs of patients. More than two-thirds of NHS bodies are not recording whether or not they successfully met the needs of their blind and partially sighted patients. So, how can they even know if their policies are implemented or not?”
Sight Loss Councils (SLC), which advocates for blind and partially sighted people in the UK, has launched an accessible information campaign, calling on local NHS bodies and NHS England to strengthen the accessible information standard and ensure it is properly implemented across the country.
Eamon from Greater Manchester SLC said: “I advise my GP and hospitals of my need for accessible information on contact with them. There are times this request hasn’t been met. I missed an urgent scan once and on another occasion was chasing an appointment I was expecting only to be told I had missed it.”
Rosie from Essex added:
“My GP practice is excellent as they use email and text. However, as for getting accessible Information from hospitals is concerned – it is Impossible. Even though I have had consultants ask for letters to be sent to me in large print. NHS England blames the CCGs – who tell you to contact the Local PALs – who can’t be bothered to answer emails!”
A Freedom of Information Act request sent to 219 NHS bodies in England and further in-depth research with blind and partially sighted people by Sight Loss Councils found that:
- 90% of the blind and partially sighted people were not regularly receiving medical information in their preferred format, with a third saying they never had.
- 75% said they cannot remember ever being asked by the NHS about preferred information formats, even though the AIS expressly states that this should happen.
- Only 45% of NHS bodies have policies in place for applying the AIS, with just 10% more currently in the process of introducing them.
- 51% of NHS bodies reported that they had never engaged people with disabilities as part of their AIS implementation.
- 70% of NHS bodies also said they had no means of recording numbers of accessible materials issued.
What needs to be done
Sight Loss Councils are calling on NHS England and local NHS bodies, including hospitals and GP practices, to:
- Introduce clear local policies on AIS implementation and monitor the effectiveness and reach.
- Engage with blind and partially sighted people and others with accessible information needs to ensuretheirneeds are understood and met.
- Train all health staff in accessible information and communication as part of a broader workplace equalities and disabled access education programme.
Sight Loss Councils across the country will be contacting their local NHS bodies to offer support to implement solid local policies.
Sight Loss Councils have worked with other disability organisations on accessible information for many years including during the Covid-19 pandemic, when we were part of work to ensure that Government information on Covid was accessible to blind and partially sighted people. We have also worked with partners, including RNIB, the Macular Society and Visionary, to deliver accessible at-home Covid-19 testing.