Cathy Yelf provides thought provoking presentation on MDS
Cathy Yelf is the Head of External Relations at the Macular Disease Society (MDS) and presented at the Edinburgh AGM meeting to a large and interested audience.
The MDS was formed in 1987 as a result of patients and ophthalmologists coming together having realised that those with central vision loss were given little advice and merely told there was nothing that could be done and discharged.
Now the MDS has 16,000 members and 200 local support groups with volunteer staff and is the biggest membership organisation in low vision. With a turnover of just over 1 million they have a small staff of 19 Equiv. FTs and many self help volunteers.
Access to the Society is free to all and includes a helpline, telephone access, free info, and a DVD which has been recently produced. The MDS provides advocacy on behalf of groups or unjustly treated individuals applying pressure on both NICE and PCTs. It also campaigns and was most successful in the campaign for Lucentis usage for AMD. As a practical help to sufferers they have trained many to educate them in eccentric viewing training and it is hoped to train many more volunteers to spread this technique, which has proven to provide results not only in allowing improved reading but also in providing increased independence and lowering depression.
The MDS wants eccentric viewing to become part of a standard package in dealing with those with vision loss.
Members who subscribe (£15/year) are provided with a quarterly magazine and a science journal. This income as well as legacies and donations allow the MDS to work with other organisations like Vision 20/20 UK where a macular interest group has been started. They are also currently campaigning for the fair treatment of young people with macular problems especially non AMD cases as they are excluded from Lucentis treatment by age.
They have also advised the DH on referral pathways on macular degeneration and agreed with the now deposed MP Anne Keats (reported earlier on PHN) to publicise the importance of direct referral from optometrists to retinal surgeons. Same day referral should be made for wet AMD to a retinal surgeon, not a GP and not a routine A & E without ophthalmological knowledge. The hospital must see the patient in clinic within a week and start treatment within the second week. If any optometrists experience difficulties in this referral pattern they should inform the MDS.
Future campaigns involve both the Royal College of Ophthalmologists and DOCET where e-learning is being designed. This will include the campaign to make people aware of “Charles Bonnet Syndrome”, which is now known to affect up to 60% of people with severe vision loss leading to them perceiving odd and often terrifying images that seem real. Many Doctors and medical staff are totally unaware of its existence and there have been cases of sufferers being considered as having dementia and some even being sectioned. If people were told at the very beginning that these weird images are regarded as a likely possibility they would not panic on their occurrence.
The image shown is one painted by an artist who suffered from these images and decided to draw them to demonstrate how disturbing they can be.
She concluded that patient information is available for practitioners and can be viewed at the MDS website at www.maculardisease.org