Blind and partially sighted people could become ill from medicines and medical devices, because they are not being listened to when it comes to designing, prescribing and administering treatments.
The Safety Gap’ report commissioned by the Patient Safety Commissioner, Prof Henrietta Hughes, and published on March 31 finds that patients with all forms of sensory impairments were put at greater risk when taking medicine or using medical devices which were supposed to help their symptoms improve.
The Commissioner highlights issues particular to blind and partially sighted people with diabetes who described ‘degrading’ treatment and a struggle to manage their condition because of an inability to accurately monitor their blood sugar levels.
Left-right: Anna Tylor, chair of trustees at RNIB, Margaret Watson, who compiled the report, and Prof Henrietta Hughes, the Patient Safety Commissioner for England at the launch of the Safety Gap report.
The report found that people with diabetes and who were blind and partially sighted experienced:
- ‘a substantial burden on a daily basis’ to manage their condition in a safe and effective manner
- ‘Anxiety and fear’ about the risk of taking the wrong medicine and dose
- designs of diabetes-specific devices and technologies -which had the potential to be life-changing- but which ‘failed to meet accessibility needs’
Prof Henrietta Hughes, Patient Safety Commissioner, said: “It is unacceptable that the safety of blind and partially sighted people is put at risk because their voices are not included in the design of medicines and medical devices. Manufacturers, regulators and healthcare providers must take their views into account when designing devices and providing health information in an accessible way. Patients deserve better and it is our collective responsibility to make these changes.”
In 2014, research by the Royal National Institute of Blind People (RNIB) estimated that the prevalence of diabetic retinopathy was more than 50 per cent in people with Type 1 diabetes and 30 per cent in people with Type 2 diabetes. Not everyone with diabetes will develop a related eye condition, but diabetic retinopathy, which occurs when high blood sugar damages the blood vessels in the retina, can potentially lead to vision loss or blindness.
The Patient Safety Commissioner’s report says problems with access to medicine and medical devices affect people with all types of sight conditions, not just diabetic retinopathy. There are estimated to be more than 2 million people in the UK living with sight loss.
Anna Tylor, RNIB’s Chair of Trustees, who is herself severely sight impaired, said: “Three years ago, I was diagnosed with breast cancer and experienced first hand many of the problems identified in this shocking report. Added to the stress I was feeling at the time were the many examples of the system failing to recognise my needs.
A mobile phone user using their phone’s camera to scan an on-pack code to get more information about a medicine.
“If you received appointment information in a format you couldn’t read or are given medications with instructions in a tiny font, how can you manage your condition effectively? When you can no longer do that, health outcomes suffer.
“The principles set out in the report are long overdue and are about putting patients at the heart of everything, so that people are treated equitably, and feel safer. As the report concludes, when we get it right for patients with sensory needs, we make it better for everyone.”
The report found that there were issues at every step of the process for people with sight loss from the design of medicine packaging through to inaccessible information about how to use medical devices. The report also found this extended to difficulties with ordering medicines through inaccessible apps or systems or getting support from manufacturers to deal with problems with life-saving medical devices.
One woman with sight loss who used injectable medicines, interviewed for the study, described being prescribed a new injectable medicine, but being told by the hospital consultant that she wouldn’t be able to administer it because of her level of sight and that her husband had to do it for her. Others said they struggled to access support from manufacturers’ helplines because they were asked to provide information about serial numbers of devices which were often too small for a person with sight loss to be able to read.
The research report recommends more than 20 changes that regulators and other bodies need to take to give patients with sensory impairments a voice and improve their access to medicine and medical equipment, including prominently flagging accessibility needs in patient records and introduction of accessible QR codes on medicine packaging and on patient information leaflets.
For more information and to read the full Safety Gap report, please see here.
