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The letter written by Dr Margaret Ewart (p 1083), a retired general practitioner who has age related macular degeneration (AMD), coincides with the publication of the document “ Age Related Macular Degeneration, Best Clinical Practice Guidelines” by the Royal College of Ophthalmologists.1 Both the letter and the guidelines highlight a number of common issues.
A recognised scenario in the United Kingdom is the elderly patient with loss of vision in one eye due to AMD who presents to her general practitioner with symptoms of distortion of vision in her other eye. The referral letter from the general practitioner seeks a routine appointment and by the time the patient is seen she has a subfoveal neovascular membrane with a visual acuity of 6/24. A verbal description of the disorder is given and she is told that “there is nothing we can do”. The vision is not deemed poor enough to recommend registration and the busy ophthalmologist who sees her omits to arrange for her to be assessed for a low vision aid. She goes home where she lives alone. Six months later she returns with a visual acuity of 3/60. In the interim she has fallen and broken her hip and is now receiving long term care. Could she have been seen more promptly? Could she have received effective laser treatment? Could she have received low vision aids? Could she have received training in how to use them? Could she have been given practical advice concerning day to day living which would have diminished her risk of injury? Could the cost to society have been less? The answers to all these questions are yes, but why is this a situation which we all recognise?
In the first place, general practitioners and high street optometrists need to be well informed which patients with macular degeneration warrant referral and with what urgency. Whether or not the eye pathology can be treated, each patient requires a positive, informative, and structured approach. It can be very helpful to write to our patients (in an appropriate print size)2 enclosing information about such organisations as the Macular Disease Society, and about CCTV equipment and other resources. The provision of low vision aids throughout the United Kingdom is inconsistent. There is evidence that training in eccentric viewing improves rehabilitation,3 but education in the use of low vision aids is commonly limited to brief instructions. However, the guidelines stress that “it is not adequate to issue a patient with a magnifying glass and not provide sufficient aftercare”.1 Eccentric fixation entails shifting the focus of one's attention to a perifoveal site. Those trained in this technique of reading can greatly improve their reading ability particularly in conditions of optimal lighting.3 In addition, an information and advisory service can be provided by trained staff who can spend more time identifying specific problems and addressing them.
A significant problem is that of registration as being blind or partially sighted. Such registration is often carried out at a late stage in the evolution of the disease and the promptness and quality of service delivery which results can be variable. The visual acuity is a measure of visual function at maximum contrast. It does not necessarily provide an index of disability. Metamorphopsia, impaired colour vision, and impaired contrast sensitivity combined with paracentral scotoma formation can conspire to render the patient “substantially and permanently handicapped by defective vision . . .” (the criterion for partial sighted registration in the United Kingdom) despite a visual acuity of 6/18 or better. When it is clear that the retinal pathology is progressive, partial sighted registration can lead to the provision of statutory social services at an appropriate time.
It is now recognised that “the early provision of advice and support will encourage independence and minimise the socioeconomic isolation that AMD causes”.1 Dr Ewart sets a challenge to our profession. A challenge of leadership and a challenge of improving the service we offer. The best clinical practice guidelines for age related macular degeneration address the issues which she raises. The question is whether we can bring about their implementation for this vulnerable group of patients and extend their application to other patients with progressive loss of vision.