blindNew research published today in the BMJ Open has found that patients experiencing degenerative eye disease are not receiving the information and support needed to manage, understand and treat their condition. It found the quality of GP’s support in this area has declined, and lack of timely information from optometrists and eye specialists may be leading to more patients being registered sight impaired or severely sight impaired.

Researchers from Royal Holloway, University of London working in conjunction with the Macular Society surveyed more than 1,000 patients diagnosed with Age-related Macular Degeneration (AMD) about their experiences of diagnosis and the support offered thereafter. Of those patients who discussed AMD with their GP around the time of diagnosis, nearly 40 per cent felt their GP was ‘not at all well-informed’ about AMD and almost half reported that they were ‘not at all helpful/supportive’.

AMD is a progressive chronic eye condition affecting people aged 50 and over, and is the leading cause of blindness in the developed world. 

Emily Boxell, PhD student at Royal Holloway’s Health Psychology Research Unit and Department of Psychology, lead author of the study explained: “There are over 500,000 people living with AMD in the UK, with this figure expected to grow by a third by 20202. While there are treatments available for some forms of the condition, it is still the leading cause of blindness – an outcome that in many cases may be avoided if the right information and support is given early.”

The study noted, in particular the association between registration as sight impaired or severely sight impaired and a lack of information at diagnosis on what patients should do if they experience sudden deterioration in vision.

Ms Boxell commented, “Patient experiences are an important indicator of quality of healthcare and our study has shown that despite some improvements, GPs are not adequately informed or equipped to support patients receiving this distressing diagnosis. The fact that ill-informed patients are more likely to go on to be registered severely sight impaired suggests that they do not know how to report deterioration or change to allow for urgent treatment when required. This means steps aren’t taken at the right time to halt further degeneration.”