Researchers from Royal Holloway College at the University of London, in partnership with the Macular Society, conducted a survey of 1,000 people diagnosed with AMD and almost half of the respondents said their GP’s “were not helpful or supportive” and “not at all well-informed” about AMD.Ms ily Boxell, lead author and PhD student at Royal Holloway’s Health Psychology Research Unit, put this in context by saying there is currently more than 500,000 people living with AMD in the UK and that number is expected to increase by 35% by 2020.“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,” Boxell said.The study concluded that people with AMD are not getting enough information to understand, manage and treat the condition. It also showed an association between patients who eventually registered as sight impaired or severely sight impaired and the lack of information they received at diagnosis on what to do if they experienced sudden deterioration in vision.
“Patient experiences are an important indicator of the quality of healthcare and our study has shown that despite some improvents, GPs are not adequately informed or equipped to support patients receiving this distressing diagnosis,” Boxell said.“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.”However, there were areas where GPs had shown significant improvent since the previous survey was taken in 1999.Most respondents were given the name of their macular condition (91%), felt the healthcare professional was interested in th (71%) and were satisfied overall with the diagnostic consultation (76%).According to Ms Cathy Yelf, chief executive at Macular Society, guidelines set by the Royal College of Ophthalmologists in 2009 to ensure patients were receiving timely information and support for such conditions had not been satisfactorily met. Those on the front line 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, Yelf said.The Macular Society is now advocating for an educational program on awareness and diagnosis along with medical practitioners to address the gap.
