Blind people are not being given accessible healthcare information, RNIB Scotland finds

Scotland’s NHS boards are failing to give blind and partially sighted people their healthcare information in accessible formats, leading to breaches in confidentiality and missed appointments, RNIB Scotland has found.

The research also found that some patients were not informed about their rights to request information in alternative formats, with others “bluntly told that they could cope without one”, by health boards.

The sight loss charity is calling for all of Scotland’s health boards to ensure “accessible information policies are fully implemented to prevent unnecessary anxiety to people with sight loss” and for awareness training for healthcare staff on the implications of sight loss in communicating with patients.

About 170,000 people in Scotland have significant sight loss, and almost a decade since the passing of patient rights legislation, RNIB Scotland has reviewed blind and partially sighted people’s experiences with patient health information.

In a report released on Monday, titled Communication Failure and based on interviews with 32 people with sight loss, the charity found “whilst good policies may exist on paper – too often people with sight loss receive information in formats they can’t read – even when healthcare providers know they have sight loss”.

The report found patient confidentiality was being breached due to those with sight loss relying on relatives, carers and friends to read their appointment letters, individuals are at risk of missing appointments due to lack of accessible documents, and some have been told they can cope without accessible information formats “so now feel unable to request their requirements”. Some patients lacked confidence to request accessible formats as they didn't want to be considered “a burden”, “difficult”, or didn't feel “worthy enough”.

Report author Laura Jones said all of this can put patients at risk of missing treatments, “as well as being confused or misinformed about their healthcare needs”.

“The NHS, itself, puts great emphasis on the cost, in money and time, of missed appointments to over-burdened clinics. So, giving patients accessible information makes sense. More worryingly, as many sight loss conditions are progressive, any delays in treatment could mean unnecessary deterioration in sight,” she said.

“Visual barriers such as inconsistent font-sizes prevent blind and partially sighted people from accessing information with ease. And while there have been advances in screen-reading software, such supportive technology can be expensive.

“The Patient Rights (Scotland) Act 2011 and its accompanying Charter of Patient Rights and Responsibilities states: ‘You have the right to be given information about your care and treatment in a format or language that meets your needs’.”

While healthcare information is increasingly being communicated online, Jones said levels of digital uptake can be significantly lower for people with disabilities.

RNIB Scotland has called on each Scottish health board to “take more responsibility and accountability” to provide timely information that is more person centred; access to healthcare facilities and accessible information “to direct blind and partially sighted people”; and raise awareness and education for people with sight loss so that they are aware of their rights.