In 1987 a newly diagnosed macular patient, Elizabeth Thomas, was appalled by the absence of support and information for herself and others in a similar position, so she resolved to try and do something about it.
With ophthalmologists Timothy Ffytche and Amresh Chopdar, optometrist Priscilla Brown and a few patients, she established the Macular Disease Society. From that small handful of members the society has grown into the largest membership patient group for the visually impaired in the country. The membership is now up to 14,000, including about 1,000 younger members of working age.
Our founder is remembered annually through the Elizabeth Thomas Seminar, (one of the Royal College of Ophthalmologists' Continuing Professional Development days) which is always held on macular disease and related topics.
The MDS today
The society operates from a small national office in Andover, Hampshire. Our funding comes from members' subscriptions, currently 15 per year, additional donations given by members when they renew, legacies, grants from trusts and foundations and from fundraising initiatives and appeals. In 2004 the society's income was 550,000.
So what do we offer members for their 15? The most tangible tokens of membership are our publications. Side View, our magazine, comes in four issues per year in large print or on tape and Digest, our journal, contains serious professional articles on research, treatments, patient care and low vision and we organise three conferences a year for members on a variety of macular matters.
One of the key reasons for starting the MDS was to help newly diagnosed patients. Our main vehicle for doing this is our helpline. People call daily asking for help, support and information. Typical questions include:
'I have just been diagnosed with this macular problem and I wasn't told much about it can you help?'
'My sight is getting worse and the GP isn't taking it very seriously. What should I do?'
'How do I get photodynamic therapy (PDT) and do you think I am eligible?'
'Where can I get help with low vision aids for my mother?'
'I have heard that vitamin supplements are good for eyes and could help my condition - which one should I take?'
'I have just been diagnosed. I really don't know how I am going to cope. Will I go blind? I just feel desperate?'
When answering these questions we have to be very careful not to be 'telephone doctors'. Our staff are not medically trained but they are able to give people support and point them in the right direction for answers. In response to the question, 'Am I eligible for PDT?' we might say, 'Were you told if you have wet or dry macular degeneration?' Frequently, they do not know, so we suggest that they should revert to their consultant for a proper explanation of their condition.
In one call recently a lady said that her sight in one eye had deteriorated rapidly. Through her GP she was offered an appointment at Queen's Medical Centre in Nottingham in 17 weeks, or if she was willing to go to Derby she would be seen in six weeks. Our helpline advised her to be robust and go tomorrow to eye casualty in Nottingham and stay until she was seen. The next week she rang to say thank you. She was seen, had wet macular degeneration and had received her first PDT treatment.
Our next layer of help and support is through our group leaders or our experienced members. The latter are available to advise on coping with macular degeneration and on maintaining a reasonable quality of life. The volunteer group leaders, mostly visually impaired, run our network of 130 self-support groups throughout the country. Most groups meet monthly and have speakers or go on outings. Members give each other mutual support and reassurance. The leaders are also very good at calling anxious people.
For those who are more than anxious, our helpline offers counselling support. Our professional counsellors offer a service of six telephone counselling sessions of 50 minutes each, spread over six weeks. This service is free and available both to members and non-members.
The society has an extensive range of information sheets on treatments, low vision aids, help with daily living, nutrition and so on. We also have some excellent general briefing booklets about macular degeneration which are useful for both patients and their families. Our latest information aid is a DVD which is informative and reassuring.
After hearing that they have macular degeneration, that there is nothing that can be done, that they won't go completely blind, but there is no need to have another appointment, many patients are dismissed from clinics with no further help. The society has successful pilot projects in Leicester and Croydon with our volunteers in the hospitals on macular clinic days.
The consultant can pass patients on after diagnosis for reassurance and introduction to further help. We are hoping to develop this in many other clinics using our local groups providing the volunteers.
When Elizabeth Thomas started the society in 1987 she was insistent on encouraging and sponsoring research. In the period 2001 to 2004 we put 360,000 into seven different research projects and a further 75,000 will be awarded in 2005. Our members are enthusiastic for this and the academic research community naturally encourages us to continue.
Topical Eye care Issues
As the largest patient group for visually impaired people, we try to exert some influence in areas that impact on macular patients:
Breaking bad news - eliminate 'diagnose and dump'
Clinicians find breaking bad news very difficult because they know they can do nothing and may themselves feel helpless.
These are some remarks quoted to us on our helpline:
'Sorry Mr Jones, the consultant is on holiday so I can't get you seen for at least three weeks.'
'You have got a problem which might develop, so don't go too far away.'
'Doctor, I have heard there is wet and dry macular degeneration. Which have I got?' The reply? 'I wouldn't worry about that, Mrs Jones. A little knowledge is a dangerous thing you know.'
The MDS is taking every opportunity to persuade clinicians that they must appear more compassionate even if there is nothing medical they can do.
Eye clinics need a well-rehearsed repertoire of what to say to patients, including being sympathetic and signposting the patient to individuals or agencies who can help, such as the MDS, local associations for the blind and hospital eye clinic liaison officers (ECLOs).
Furthermore, all eye clinics must be fluent about the local arrangements (which differ in every area) for low vision assessments and access to a resource centre for low vision aids. They must also be completely au fait with the new procedures for registration.
Eye care pathways
We know that many patients are not reaching a retinal specialist fast enough to be treated by PDT. A general rule of thumb is that a wet macular degeneration eye can go from 'bleed-to-bust' in three months. The example quoted earlier of the lady in Nottingham who was offered an appointment in 17 weeks is unacceptable. It is the result of ignorance on the part of GPs, general hospital doctors and their staff who book referral appointments and simply do not understand the urgency. We strongly back the NHS Modernisation Agency initiative for new pathways for AMD and low vision services.
The AMD pathway cuts out the GP and depends on optometrists to examine and refer direct to medical retinal centres. Much work is going on to refine and implement the pathways. Official pilot projects are under way in Brighton and Waltham Forest. Other areas, such as Manchester, have fully embraced the concept and are holding talks and training between optometrists and ophthalmologists. The society fully supports the increased involvement of optometrists so that the high street offers primary care referral centres for macular degeneration patients.
Awareness
There is widespread ignorance about macular degeneration among the general public and also among medical professionals and their support staff.
Optometrists are perfectly suited to helping to spread awareness. MDS is launching a new leaflet this year for handing out in surgeries, eye clinics and by optometrists. Hopefully, optometrists will work with us to promote awareness of macular degeneration and in a practical way will make the leaflet available.
The society is currently looking for sponsorship partners to help share the printing and distribution costs of this new leaflet. It was only 10 years ago that Alzheimer's disease was not talked about or well known, but that is certainly not the case now and the MDS would like macular disease to become equally well recognised.
Hi-Tech Low Vision Kit and Eccentric Reading
The MDS has started a lobbying campaign for the reduction in cost and improved accessibility of CCTV readers. The rationale is that these readers, which are a quality of life restorer for macular degeneration patients, cost the individual over 2,000. If you need a pacemaker, an artificial limb or a replacement hip you are given them free on the national health. Why the discrimination against people with faulty eyes, compared to the others who are given free assistance?
We are also very keen on getting the teaching of eccentric reading techniques more widely available. Just a few low vision rehabilitation officers teach this skill. There is no record of who they are and what training they can offer.
Optometrists who sit on local low vision committees or local optical committees may be able to help support both these initiatives. There is much synergy between the work of the MDS and optometrists. Our common link is patients. We can help your patients with support, information and reassurance. You can help us by embracing the new eye care pathways and spreading awareness of macular degeneration.
The Macular Disease Society can be contacted at: The MDS, Darwin House, 13a Bridge Street, Andover, Hampshire SP10 1BE. Helpline: 0845 241 2041. Email: info@maculardisease.org
website: www.maculardisease.org
Tom Bremridge, chief executive of the Macular Disease Society, describes the work of the charity which represents the largest patient group for visually impaired people