Supporting people with macular degeneration: an interview with Dennis Lewis, AMD Alliance International

Dennis LewisTHOUGHT LEADERS SERIES...insight from the world’s leading experts

Dennis Lewis, Patient Ambassador, A.M.D. Alliance International talks about his role as Head of Counselling for the Macular Society U.K.

Please can you give a brief overview of the telephone counselling service offered by the Macular Society?

The service operates via the telephone, so that anybody in the United Kingdom who wants to use it can reach us easily and quickly.

We now have a team of eight professionally-qualified counsellors and we are all members of the British Association for Counselling and Psychotherapy (BACP).

We offer a minimum of six sessions on the telephone, with each session lasting for up to fifty minutes.

This completely free service is available to anybody in the United Kingdom affected by any type of macular problem and all phone calls are made by us, so that all the costs are absorbed by us.

The funding is mainly from the Macular Society. We can add some more sessions if necessary and, on average, we work with an individual for between one and three months in weekly sessions or sessions that are tailored around eye appointments, which is quite common.

The service is fully recognized by the BACP as an alternative mode of counselling because face-to -face counselling would be completely impractical; at the moment, we have clients in places like Belfast, Plymouth, Manchester, and of course, we all work from home using the phone. In July, the service will have been running for 16 years.

Are all the appointments prearranged or can people call in to ask questions?

We actually have a separate helpline in an office at the Macular Society. Referrals come mostly via the helpline, but the telephone counselling is a dedicated service, where calls are prearranged.

We do also receive referrals from GPs, eye clinics and social services and over the years, we've gradually gained more recognition, so provided the person who is going to receive the counselling has given their permission, we even take referrals from members of family. We try to be as flexible as we can.

Could you please outline some of the common themes of the telephone conversations you have with people with macular degeneration?

There are four. The first common theme is that people feel they're going to become a burden on their family and friends, which absolutely terrifies them. The thought of needing somebody to tie their shoe laces or pour them a cup of tea creates intense fear.

The second theme is that people are scared of being perceived as stupid. People with macular degeneration become accident-prone and it's very easy to knock over a glass of water or trip on a step, for example, because vision is quite badly blurred.

Of course, we all have concerns about how the rest of the world perceives us as individuals and people do feel they are perceived as a bit stupid or even sub-normal, which creates a lot of fear and anxiety.

The third theme, which is very common, is feelings of being perceived as a fraud, because people with macular can be registered as severely sight-impaired, which is the new National Health Service language for registered blind.

I am myself registered blind and yet I am not actually blind. Carrying a white cane can make people feel awkward, because they can actually negotiate the street. These people might not be able to recognize people or read car or bus numbers, but they still feel like a bit of a fraud.

The fourth theme is really a combination of all of those. People experience feelings of intense shame about not being able to cope. As a culture, British people are stoic and we’re perceived by the rest of the world as being a bit stiff upper-lipped.

We like to feel we get on with things, even when we face adversity, whether it's sight loss, another physical disability or being disadvantaged in any other way.

If people are experiencing all the feelings I have just described, they become quite ashamed and, unfortunately, that is a forerunner to depression.

Once depression sets in, it's very hard to combat. Combinations of medication and talking therapy can help deal with that, but it can be tough when people reach rock bottom and that certainly does happen with macular degeneration.

Why do you think many people experience fear and anxiety whilst waiting for appointments and what do you think needs to be done to reduce this?

I think it would be extremely helpful to organize appointments in a very structured way. We have recently worked with people who have left the hospital and been told their next appointment letter will arrive in the post, yet nothing turns up, which causes anxiety to build.

I think it would help to be organized and for people to be made fully aware of what the appointment system is.

It should be well-structured so that people are not left wondering when they're next going to hear. There are many hospitals that arrange your next appointment as you leave your current one and it would be fantastic if that were the standard. That would help people feel they're fully connected with the hospital and on their radar rather than being forgotten about.

There have been examples of appointment letters not being received and in the case of the wet form of AMD, where injections are required within a certain time frame, it can be devastating.

Sight is often described to me as one of the most precious of human abilities. I appreciate there are many other abilities that would be horrible to lose, such as the use of your legs, but sight loss does take away your independence to a significant extent.

Even something as simple as crossing the road can be difficult because of blind spots. It might not be a car, bus or lorry that a person fails to see, but rather a bicycle… because the field of vision is much narrower and a bike is silent meaning you can't hear it.

The appointment systems do seem to vary greatly in the NHS. Contact numbers at the hospital would be a really good idea, but patients aren't always provided with that.

The attitude and the way that the medical staff deal with patients is also absolutely key, and, unfortunately, some people adopt a rather dark sense of humor.

Neither you, nor I, nor anyone can understand what it's like being a doctor in an eye clinic seeing patient after patient, but what we hear is that some of the comments made are things like “you'll never fly an airplane,” which is so unnecessary.

People need to be treated with respect and I think a standard the Macular Society tries to set for any nurse, doctor, or consultant, is to imagine the patient is your own mum or dad.

What is vision rehabilitation? When is it appropriate and why aren’t people always referred?

When somebody's vision reduces to such a level that they are registerable, which can happen in the more common, dry form of AMD, the person’s local authority are then legally obliged to offer them a home visit from a fully-trained rehabilitation officer, who goes through an assessment of needs.

Now, if you imagine that person was say, 86 years old, living alone and trying to cope with day-to-day personal needs, household tasks or outdoor tasks such as going shopping, the rehabilitation officer can provide a great deal of help by giving them an idea of what kind of support is available locally.

They will also be made aware of something called a low vision clinic, where the patient sees an optometrist who goes through the magnification options that are available to them that are over and above those of normal spectacles and contact lenses.

There is a great deal of technology out there now and while optometrists don't particularly get involved with that, local charities and national charities like the Macular Society do.

They inform people of the various support services outside of the hospital that can help a person go through the necessary changes in their life and cope with things they are no longer able to do once the condition progresses to a certain point.

Imagine somebody walking down the street who can’t recognize faces, for example, and yet hasn't even got a white cane or a guide dog - they're so vulnerable because people don't even know they have the condition.

Vision rehabilitation is about what can be done to help these individuals once the hospital has dealt with them and told them there is currently no treatment and they can't really help them anymore.

The Macular Society has a training program called “skills for seeing,” which helps people learn to use the peripheral vision they do have remaining.

There is also a scheme called the ”daily living champion,” where a volunteer will pop into somebody's home and explain to them the alternative ways of, for example, using a microwave, a cooker or a washing machine.

There’s a wide range of help available that can be offered to these people and help them rehabilitate into their new circumstance.

Is everyone getting access to rehabilitation?

Actually, no, not everyone. There have been funding cuts because rehabilitation assessment can take months in certain areas. A person with dry AMD may have left the hospital and be losing their vision without receiving any help or visits from social services for months. How are they supposed to cope on a day-to-day basis?

How important is help, particularly early on?

It is very important, particularly the psychological help in terms of processing the shock of being diagnosed. The diagnosis itself needs to be communicated in a realistic but sympathetic way.

For many people, it’s been a case of being told “you've got macular degeneration, there's nothing that can be done and there is no need to see you again.” Imagine hearing those words and then being asked to leave the hospital? It's devastating.

The statement that nothing can be done is also incorrect. What they should be saying is that there's no treatment available, but certainly, a whole host of things can be done, particularly by all the sight-loss charities.

There are many of those charities offering support throughout the country. Just meeting once a week with others in a similar position and receiving tips about what kind of services are available locally, for example, can be immensely helpful.

In your recent talk at the House of Commons Reception you touched upon Charles Bonnet syndrome (CBS). Please could you tell us a little bit about this condition?

It emerged probably a good five or six years ago now, that people with AMD can experience hallucinations. The society has an excellent consultant psychiatrist, who supports us by offering lectures on this subject and he also conducts research to explore why it happens.

What he's explained to us is that people see patterns, grids, human beings, animals, strange creatures and even gargoyles. This man’s name is Dominic Ffytche and he works at the Maudsley in South London. He's helped us write a leaflet on Charles Bonnet syndrome which is also available as an audio.

In the past, people have found themselves referred to mental health services, deemed as either schizophrenic or crazy, because they have been seeing things that aren't actually there.

What Dominic has explained is that the interruption of the seeing process in macular degeneration causes the brain to receive confused, mixed messages and it then makes things up to compensate.

There have been instances of people being treated for a serious mental health condition in an institution, when, in fact, there's nothing wrong with them apart from the fact that they are experiencing hallucinations.

The hallucinations are harmless physically, although it can be tough psychologically for people to deal with seeing things that don’t exist.

In the past, we have run press campaigns trying to raise awareness of CBS and the Macular Society is widely recognized in the UK as being probably the most developed organization in terms of understanding the condition.

I've got several clients at the moment who are seeing various things, some of which can be disturbing such as violence occurring. We've had instances of people calling the police and, of course, the police turn up and there’s nothing there, so the police think their time has been wasted.

What are the key characteristics?

There are some typical aspects of it that are important to note. The first one is that there's never sound. Dominic tells us that if there is sound, it is not CBS and the person must seek professional help.

The second one is that the images are never touchable in any way; it's like a hologram that you can't touch and it can’t touch you.

Thirdly, there is never a consequence. Recently, a lady said some men were digging a hole in her garden, yet the following morning, of course, there was no hole.

If people can start to think around what is happening using these points, it can help them start to gain some kind of control over their thinking.

It's a weird manifestation and Dominic still doesn't fully understand what happens, although he did research it enough to find that Charles Bonnet first discovered the phenomenon about 200 years ago.

Dominic does a really good job of explaining the background, how the condition came to be understood and what he's trying to do today to address it. There are certain exercises he recommends, which are designed to stimulate blood flow around the retina because he believes this might prevent the brain from becoming too creative.

The most important thing when speaking to anybody who says they're suffering with this condition is to make them feel believed and not say to them that there's nothing there or they’re going crazy.

I encourage people to say “I hear what you're saying, I believe you, but to be honest, I see nothing.”

We try to work from that perspective and it does often work. Once people start to feel believed, they start to feel they can contain it.

Clinicians and GPs also need to be made aware that if a patient visits them with this problem, it doesn't necessarily mean they're mentally ill.

Of course, from the patient’s point of view, they feel scared that “men in white coats” will come and take them away, so they don't tell anybody, and live suffering in silence. That worries us a lot, which is why we strive at every given opportunity to raise awareness of it.

How does CBS make people feel?

It makes people feel like they're losing their mind. They feel isolated and incredibly anxious about what is going on and why they are seeing things.

The isolation then makes them scared of talking, even to their family or friends and certainly to a doctor, because they are worried they’ll end up in a mental institution.

What worries me is whether any are in an institution now, even as we speak. We don't know and we can only continue to work away as far as that one is concerned.

What do you think needs to be done to improve the support available for people with macular degeneration and CBS going forwards?

I think all professionals need to be made aware of how people are affected by the condition. We do have an annual journal called Digest and our journal for 2015 has just been published. It reaches out to all professionals, as well as the public, but, awareness needs to be raised in whatever way possible - through campaigns, for example.

We want people to be aware of our national helpline and the number is 0300 3030 111. We also have a very active website (www.macularsociety.org) and in the past year or two, we have developed a professional membership.

Anybody applying for that gets the annual Digest free, as well as our quarterly membership magazine, which is called Sideview. However, most important of all, is being on board as a member because then people can receive all the publications and immediate notifications about campaigns that we run.

I know the membership has now gone well past 1,000, but we would like every eye clinic in the country to be a member and even every GP.

However, as far as the GP aspect is concerned, I think the problem with AMD and particularly dry AMD, is that because it's not treatable but is also not life threatening, GPs wonder what they can do aside from listen sympathetically and maybe give the person a tablet?

Many people do go down the route of low self-esteem and then into depression and, occasionally, we do deal with people who simply don't want to wake up in the morning. For them, it's very tough indeed. However, there’s so much that can be done to alleviate the distress, whether it's psychological help, practical help, or both.

(from left to right): Ms Lesley-Anne Alexander CBE, Royal National Institute of Blind People, Mr Danny Gleeson, Guide Dogs for the Blind (with Dylan the Guide Dog), Dr Alan Cruess, AMD Alliance International, Dr Keith Gordon, AMD Alliance International, Mr Michael Valenzia, Macular Society, Mr Dennis Lewis, Macular Society, Mr Mark Ackermann, AMD Alliance, Prof Ian Banks, European Forum Against Blindness (EFAB).

Where can readers find more information?

We have a very active website: http://www.macularsociety.org/

Our helpline number is: 0300 3030 111

One service I would also like to mention, which has proven to be very popular, is our telephone befriending service. It has been running for three years and is very much along the same lines as the service Esther Rantzen started a year or two ago called Silver Line, which provides support for elderly people who are feeling lonely.

We are trying to tackle what Mother Teresa described as the worst affliction on the planet, which is loneliness, and it's quite amazing to think that in a city like London, where there's 13 million people, there are probably thousands of people that are desperately lonely and don't know how to tackle it. I guess that is the negative side of living for a long time.

We've had two clients in the last year who are both over 100 years old and both living at home with support, yet they are lonely and just want somebody to chat to. The Society has therefore developed this befriending service using Lottery funding.

We basically go around the country training willing volunteers, many of whom themselves have macular, to offer just a bit of their time once a month ringing up somebody who's lonely and becoming their friend over the phone. It's really taken off and we’ve now got well over 200 matched people that have been speaking for anything from three months to a couple of years.

About Dennis Lewis

Following a City career in banking, which ended in 1997, Dennis trained as a counsellor.  He holds a Diploma in Integrative Counselling and is a Member of the British Association for Counselling and Psychotherapy (B.A.C.P.)

He set up the telephone counselling service for the Macular Society in 1999 and currently manages a team of seven counsellors offering a UK-wide service to anyone affected by Macular Conditions.

Dennis also served as a Trustee for the Macular Society for six years between 2001 and 2006. He is a co-founder and former Chair of the VINCE initiative (Vision Impairment Network for Counselling and Emotional support) which was launched in October 2007. VINCE was accepted as a standing committee within the Vision 2020UK structure in December 2008.

He has also made presentations about the importance of emotional support to eye health focus groups at the UK Parliament in London and the European Parliament in Brussels.

Dennis lives with his wife in Bromley, Kent and has two grown up children and four grandchildren.

He has had an inherited form of macular degeneration for over 35 years and is registered as severely sight impaired (blind) in the UK.

April Cashin-Garbutt

Written by

April Cashin-Garbutt

April graduated with a first-class honours degree in Natural Sciences from Pembroke College, University of Cambridge. During her time as Editor-in-Chief, News-Medical (2012-2017), she kickstarted the content production process and helped to grow the website readership to over 60 million visitors per year. Through interviewing global thought leaders in medicine and life sciences, including Nobel laureates, April developed a passion for neuroscience and now works at the Sainsbury Wellcome Centre for Neural Circuits and Behaviour, located within UCL.

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