Patients with diabetes-related sight loss are being left anxious and uncertain about their future as they are given very little information about their condition, or the support available. 

These findings come from a survey, conducted by the Macular Society in 2021. The survey revealed the lack of information provided to those newly diagnosed with diabetic macular oedema (DMO), so patients aren’t sure what their diagno­sis means for their future.

Only 25 per cent of those who took the survey felt they were given all the information they needed about their condition when they were diagnosed. Surprisingly, 28 per cent said they were given no information at all.

DMO is a build-up of fluid in the macula, caused by leaky blood vessels that have been damaged by high blood sugar levels as a consequence of diabetes. It is the biggest cause of sight loss in the working-age population and currently affects around 490,000 people in the UK.

Eighty per cent of responders to the survey said the condition negatively impacts their life, with 63 per cent saying they felt anxious about their condition and the sight loss it can cause.

The conclusion from the survey results is that better connections between diabetic clinics, eye clinics and low vision support are needed, so clinicians can signpost those with diabetes and DMO to information about the condition and support.

“We conducted the survey to better understand the treatment regimens for patients with DMO, as well as how they manage their diabetes and what support they receive.

“Being told you are losing your sight is devastating and life-changing. Understanding more about the condition and what treatments are available can be reassuring, and help patients feel more in control of the situation.

“The Macular Society provides information and support for those newly diagnosed with, or at risk of, DMO and we look forward to working across the diabetes and eye sector to reduce feelings of anxiety and improve the lives of those affected.”

Geraldine Hoad, Macular Society research manager

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