Reassuring AMD patients

Around one in every 2,000 people has Age-related Macular Degeneration at 60. However, by the age of 90 it affects one person in five. We are all living longer so the number of people affected is increasing. There are however, quite simple steps to take to lessen the impact of macular conditions. These include changes to diet, lighting levels, UV-blocking glasses, and stopping smoking. Without the right information at the right time, this debilitating condition can cause much more profound problems than necessary.

For example, visual hallucinations are a frequent side effect of AMD, and patients may worry unnecessarily that such visions are caused by other conditions such as dementia. Being able to provide them with reassurance in the early stages of diagnosis can make the condition much easier to cope with.

In 2009 the Royal College of Ophthalmologists introduced guidelines to help ensure patients were receiving timely facts and the support needed. The research published today in the journal BMJ Open, found that since this time, patients have reported an increase in overall satisfaction with the diagnostic consultation, but not with receiving specific aspects of important information and support.

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’.

Those on the front line, such as GPs, optometrists and ophthalmologists still need support to ensure they are providing vital information to their patients newly diagnosed with AMD about the need for same- or next-day attendance at a hospital eye clinic if they experience changes in their second eye. This is particularly important for patients who are not being seen regularly for hospital treatment and are left to self-monitor their sight.

The Macular Society is campaigning for better signposting at diagnosis, with medical practitioners able to supply literature such as its Guide to AMD on diagnosis. The public can contact the Macular Society’s helpline directly on 0300 3030 111 or [email protected].