Let us have our health information in a way we can read, say patients with sight loss

When people with communications needs don’t receive their information in a way they can read, it leads to missed medical appointments, delayed test results, misunderstood treatment instructions and unread medication labels and letters from doctors. It creates serious risks to health and wellbeing, affecting patient safety, independence, privacy and dignity.

NHS England has just published an updated version of the Accessible Information Standard which sets out how NHS and publicly funded adult social care services must provide information and correspondence to people with communication needs, including blind and partially sighted people.

RNIB cautiously welcomes the update of the Standard, originally published in August 2016. It includes some improvements, but the charity says further progress is needed, and all parts of the health and care system must take action to make sure accessible information is consistently put into practice.

RNIB is calling on the Minister for Care, Stephen Kinnock, to further strengthen the Standard and to make it mandatory. Remaining challenges which RNIB say need to be addressed include: the lack of oversight of NHS and social care organisations’ compliance with the Standard, the need for improved and mandatory staff training and IT systems which are fit for purpose.

Blind and partially sighted people, and people with other communication needs, have a legal right to receive accessible health information and communication support. For example, this includes receiving information about hospital appointments, test results or other correspondence in their required alternative formats such as large print, email, audio, braille, easy read, or British Sign Language.

Research highlights the scale of the problem with 77 per cent of people with accessible information needs reporting rarely or never receiving information in alternative formats.

RNIB’s Chair of Trustees, Anna Tylor said, “For blind and partially sighted people, this has always been a question of patient safety and independence. After years of waiting, I’m pleased the revised Accessible Information Standard has finally been published, but the hard work begins here.

NHS and adult social care decision-makers must ensure the requirements of the Standard are adopted fully so that we receive the information we need, in the format we need, to keep us all healthy and safe.”

Changes introduced by the updated Standard include:

• A new “review” stage requiring NHS services to proactively check that patients’ needs are up to date in their records and are being met.
• All health and social care organisations should appoint a senior named role responsible for overseeing the Standard being put into practice; and all such organisations to complete annual improvement plans to assess how well they are meeting the Standard.

The Standard was published days before the NHS 10 Year Plan which the Government says will transform how health care is delivered across England by creating the “most digitally accessible health system in the world.”

RNIB urges for the modernisation plans to tackle long-standing issues with NHS and social care IT systems, so patients’ communication needs are consistently recorded, and shared effectively across the different departments where appropriate. It also wants improved training for staff to ensure greater awareness of the importance of making all communications accessible.

The charity has produced a guide for blind and partially sighted people on how to request accessible health and care information, and the steps they can take if you don’t receive it, which is available on its website. RNIB also has resources for those working in the NHS or in social care on providing accessible information for patients with sight loss.