Thirty years ago, a small group of macular degeneration patients led by the dauntless Elizabeth Thomas formed the Macular Disease Society. Recognising patients were isolated both geographically and by the effects of central vision loss, it aimed to provide peer support, practical advice and to link patients and experts.
Although our methods have changed since then, our aims remain largely the same. We now have more than 23,000 members, of which around 7,800 are professionals: opticians, ophthalmologists, low-vision experts and clinical researchers.
Professional membership
Macular Society membership is free for people working in the eye care sector, and gives you:
- Four issues of Sideview magazine each year, full of tips, inspirational stories and expert views to share with patients.
- A print or digital copy of our annual research roundup, Digest, to help you stay up-to-date with the latest developments.
- Four email newsletters a year.
As a member you will also be the first to hear about new online training courses, updated patient information as it is published, and our annual professional conference. This year’s takes place on October 16 at Aston University, Birmingham.
Find out more and sign up at www.macularsociety.org/become-professional-member.
Patient information
‘I was impressed with the quality of the information the society was sending out and the way it was presented, especially for someone like me who has difficulty reading.’ Ken, Macular Society member.
We know patients often forget to ask key questions during their appointment, or may not take in what they are told. Having something easy to read they can take away will reduce worry for you and them, and give them a better idea of changes to look out for.
We produce free patient information leaflets on different macular conditions, treatments and topics such as driving, nutrition and smoking. All are available in large print as a downloadable pdf or as an audio file. Each one is regularly reviewed and updated in partnership with experts and people with macular conditions. Our most recent additions explain what is meant by ‘early AMD’ and provide more information for people with Stargardt’s juvenile macular dystrophy.
For the new screening for hydroxychloroquine retinopathy, we have produced information to explain to why patients have been chosen for screening and what tests they can expect at each visit.
You can order free supplies of each leaflet from www.macularsociety.org/order-patient-information or by downloading the Macular Society app from Google Play or the Apple App Store.
Support services
‘I felt lost and scared but the Society gave me information and someone to talk to, and made me feel I had someone in my corner.’ – Kristy, Macular Society member.
The Macular Society Helpline answers more than 1,000 calls a month from patients and professionals, and can refer anyone affected by macular disease to our support services, including:
- Telephone befriending to match isolated individuals with others people who have experience of their condition.
- Counselling for people finding it hard to deal with a recent diagnosis or a change in their vision.
- Genetic counselling for people affected by an inherited macular condition and who are worried about how it will affect their families.
- Injection ‘buddies’ for those worried about starting anti-VEGF treatment.
- Advice on sourcing and using adaptive technology, from specialist magnifiers to tips to make smartphones easier to use.
- Training in eccentric viewing techniques, which use peripheral vision to maintain independence.
- Support to understand the help that visually impaired people are entitled to at work, and the benefits that may be available to those out of work.
- Advocacy services for those struggling to get timely treatment from the NHS.
The helpline can also provide information about our network of 400 local macular support groups. The peer support, friendship and sense of community at each of these groups is invaluable. As Elizabeth Thomas wrote in our first-ever member magazine back in 1988, ‘We all know the awful feelings when visual impairment came down on us like a pall, and we are just the people to be able to say “I know what it is like, but the world has not come to an end” and perhaps “This is how I cope”.’
Anyone can call the Helpline Monday to Friday, 9am to 5pm, on 0300 3030 111, or email helpline@macularsociety.org.
Professionals can order large-print business cards or postcards with the helpline number to give to patients at www.macularsociety.org/order-patient-information.
Macular Week
Each year, our members come together to spread the word about how amazing our eyes are and the simple things we can all do to look after them. This year, for example, we let people know that an eye test can spot the early signs of macular disease and help them retain their precious sight. Follow the conversation online using the hashtag #eyelove and find out more at www.macularsociety.org/macularweek.
Jessica Murray is professional liaison officer, Macular Society