How Does the Macular Society Support People with AMD in the UK?

In this episode of the Live Well with Sight Loss podcast, Colin Daniels from the Macular Society talks about the support and services for individuals dealing with Macular disease, the primary cause of sight loss in the UK. Colin talks about the prevalence of age-related macular degeneration (AMD) and other conditions affecting central vision, emphasising the Society's commitment to emotional support and peer connections. Colin shares insights on their research initiatives aimed at understanding and treating macular diseases, as well as the establishment of a lived experience advisory panel to ensure that the voices of those affected shape the services provided. You can gain support from the Macular Society by calling their helpline on 0300 30 30 111 or visiting their website at www.macularsociety.org

Chapters

• 0:00 Introduction to Colin Daniels
• 1:19 Understanding Macular Disease
• 4:50 Foundation of the Macular Society
• 7:00 Services for Emotional Support
• 10:23 Innovations in Service Delivery
• 12:52 Research Updates
• 17:34 Outro

Transcript

[0:00] Rainbow Group. Live well with sight loss.

[0:08] Hello and welcome to the Rainbow Group Live Well with Sight Loss podcast for May 2025. A series of talks on living with sight loss to educate, inspire and entertain. In this episode, we are joined by Colin Daniels from the Macular Society, who talks about how the Macular Society can support people living with central vision loss. The Macular Society is a national organisation supporting people living with macular disease, the biggest cause of sight loss in the UK. Colin explains how the charity supports people and its research. You can contact the Macular Society helpline on 0300 30 30 111 or visit their website at macularsociety.org.

[1:11] Music.

[1:20] My name is Colin Daniels, and I work for the Macular Society. I've worked for the society for about 10 years, but I've been working in the sight loss sector for nearly 18 years. The Macular Society, as you may know, is an organisation that supports people living with macular disease. Now that's all types of macular disease. Age-related macular degeneration is the largest form of sight loss in the UK today, and it affects something like 1.5 million people. So that's people living with the condition, friends, family, that sort of thing. And in that 1.5 million, the biggest amount of people is people with age-related macular degeneration. And there's roughly 700,000, and that number is due to rise as the population ages. It's just one of those things, really. AMD is not a predisposition of getting older but uh the the your likelihood of acquiring it gets more as you get older so you know you know so the taper is quite high when you hit yeah yeah 80s and 90s people living at the age of 95 sort of 90 95 that sort of area can have a one in two chance of actually picking up even if they don't notice uh because it's just happens to be one of those conditions.

[2:39] So alongside the age-related macular degeneration people cohort, there is a group of people a bit like me with different types of central vision loss. So I've got Stargardt disease, which is a juvenile macular dystrophy. Not that we use the word juvenile anymore, but it does suit me. So I always kind of chuck it in. So we have similar difficulties to people living with age-related macular degeneration, but there's not quite so many of us. So Stargardt disease is the biggest form of macular dystrophy. There's lots of other kinds of macular dystrophies. And then there's a couple of other conditions that people should be aware of, which is something called diabetic macular edema, where a bit like diabetic macular condition, it affects the macular region. And I'll explain what the macular does in a minute, and then I'll explain what the Macular Society does. And then there's another condition called myopic macular degeneration, which is for those people who are very, very short-sighted from childhood really, and as they move into adulthood, it can eventually start playing havoc with your retina. And in particular for MMD, myopic macular degeneration, your macular area starts lifting in your area and the blood flow stops to it and therefore the macula stops working.

[3:51] So the macula itself is a very small point at the back of the eye, which deals with all your central vision, so all your fine detail. We have one in both eyes and it's about the size of a grain of rice, which is absolutely tiny, but it does 80% of our accurate viewing. So as I say, it helps us see fine details. So things like reading and cooking and sewing and watching telly and looking at your kids or grandkids, you know, all of those kinds of things. It helps us do. Backed up, you know, beautifully by the peripheral vision, which helps us fill in the rest. But the peripheral vision, it's not very good at seeing detail. It's very good at seeing color and helping us see in dim light and helps us see movement. But actually for accurate viewing, is all about the central vision, all about the macula and the macular area. So when the macula starts to degenerate, it can have obviously a devastating impact on people, especially if they're a little bit older. So the Macula Society was created in 1987 by our founder, Elizabeth. She was a secretary at the University of Australia in London, which always makes me giggle because, you know, it can't be much further away, but anyway.

[5:11] And she was one of the first people to go into more fields, funny enough, with this new, what was this very new rare condition. And she was asked, because she was one of these people that was quite a bit of organizing stuff. And she was asked by one of the consultants there if she wouldn't mind just holding a group meeting just to explain what macular disease or age-related macular degeneration was. It was called something different then. It was called senile macular the degeneration, which is not very nice. So that got dropped. So she went on to InTouch Radio and sort of said she was going to do this. And if people should write to her to get there and...

[5:47] But she was going on holiday for a month or so and she would pick everything up and deal with it.

[5:53] When she got home, there was 400 letters waiting for her for this first meeting. From this initial meeting, 150 people turned up, all with varying progression of macular disease. And it was decided meeting that actually an organization like them at well an organization that was talked looked into researching macular disease because so so little was known and also supporting people with macular disease um it was so the macular society or the macular disease society as it was then was was was born based on that first meeting and we've been going from strength to strength ever since really. So those two fundamental foundations for the Macular Society when inception, which was providing research and supporting people living with the condition, have always been there and have been joined by another one which is about eye health and making sure people have access to good eye health. So we call that the Eyes Matter campaign. So there's those three strands.

[7:01] So there's various services that we offer as part of that supporting people. So the Macular Society has a network of macular society groups across the UK. So theoretically, there should be one near you. So you can go along and join the meeting and meet other people with macular disease. Now, in the most part, these groups are for older people with age-related macular degeneration. And they're usually monthly and they come with a speaker and a cups of tea and biscuits and stuff. But yes, so people find them very useful because they're actually meeting people with macular disease and they're picking up hints and tips and that sort of stuff, you know, not reinventing the wheel because that's always the worst thing. So for example, I always talk about, you know, not cutting a red tomato on a red chopping board when you can't define, you know, see the difference is that fine detail. And blood is red at the end of the day, so you might not notice. So yeah, so we have our support groups. And then we have our befriending service, which again is very much, but it's volunteer-led. And all our befrienders, or the high majority of our befrienders, actually live with age-related macular degeneration themselves. So there's people with AMD befriending people with AMD. So again, it's a nice peer support for those people who struggle to get out a bit or who may not have a group near them.

[8:30] And one of the things that we did at the beginning of the organization, sort of 30 years ago now, was it was decided that emotional support was required. So some sort of more structured emotional support. So we started a counseling service, which is going from strength to strength. And this is telephone counseling with proper trained counselors with all those clever letters after their names. And a number of them, again, have macular disease. And it's a free service. So if you find yourself in a bit of a pickle and you don't know if you want someone to talk to that's a bit independent and who will just listen and our counseling service is there and you can refer yourself through the website or through our helpline, which leads us beautifully onto the helpline. So our helpline is our first port of call. So you can call the helpline and talk about anything macular disease related or if you want to support someone or just have a question because no question is silly. You know, there's no such thing as a silly question. Sometimes you just need some clarification so the help line number is 0300 30 30 111, and we have up to 20 000 calls a year on our on our help line the website so that's a really good resource really good place to start looking for information around macular disease yours or anybody else's and daily living stuff and there's bits on benefit and bits on this and bits on that so anything you want to find out much like the the rainbow group here we we hold monthly webinars with clinicians and researchers.

[9:58] Coming on and giving us the latest around macular disease and not just conditions either. So sometimes it's about equipment or daily living or things like that. So they're good. And we've started to convert them into podcasts as well, which are available on all good podcast platforms. Sadly, you might have to put up with my dulcet tones on some of those though.

[10:19] And we're also doing some, what we're calling bite-sized benefit podcasts. So we've just done, We're releasing one actually today, funny enough, on pension and pension credit, which you can find out. And I'm joined by somebody from the Legal Rights Service, Dominic from the Legal Rights Service at RNIB, to talk about that.

[10:38] So, my job is to change it. I am now called the Macular Society Service Elevation Manager, which is a very dull title, but it basically means we're looking at the way we offer our services and what our services are, and we want to modernize them and improve them, and all create new services where we may have a gap.

[10:56] But the way we're doing this now, instead of just going, well, I think people with macular disease need this, we're starting to use a lived experience or co-production is the you know the nice words to to understand what people would live in with macular disease from the macular disease can you want and need so i set up last year something called a lived experience advisory panel um which you know which i'm very proud of and there's 15 people on this panel all with different types of macular disease different ages and a couple of people with caring responsibilities and we're using this panel as a way to really understand what people from the macular disease community would like.

[11:37] So it's not just those 15 people. The questions will go wider as we learn a little bit more about how to use the voices of our service users a bit better. But again, it's a learning curve. But they've already influenced some changes for simple things like we're looking to change the name of one of our services, because it didn't make a lot of sense. We sent them a list of possibles and they came up with something completely different, which has now been adopted. Can't say what it is, because it's not been all the... You can't imagine branding and all that marketing has got to go ahead. It could be a big launch. But yeah, but it was very exciting to actually see just from very... I mean, they met first in January, and by April, they've had a massive influence on one particular service within the society, which is very exciting.

[12:31] So that's what I do. So I'm managing the supporting the lived experience sort of part of the Macular Society offer, but also supporting other team members to look at the way that their services are running, and maybe having a bit of a tweak, or maybe not having a bit in between,

[12:48] but just being more mindful of what we're offering and how. So that's kind of my job. And I just finally, I should touch on research, really. So I was hoping to get one of my colleagues from the research team today, but nobody was available, sadly. So you're going to have to put up with me, pretending I know what I'm talking about, which I kind of do. So the Macular Society, every year we fund, you know, over two and a half million pounds worth of new research into macular disease. And that might be anything from the condition itself, or age-related macular degeneration, let's just say, new treatments for wet macular disease. So injections, tablets, that sort of stuff. Oh, that's breaking news, isn't it? I found that out yesterday. There's a triathlon, an oral, a tablet, which may help. I don't know too much about it. I didn't read it, but it came through, but it was very exciting the um, They also look into social areas. We fund research into social things like equipment and daily living and social understanding of macular disease and how it impacts people.

[13:57] And again, it's not all about age-related macular degeneration. We funded research into style of art disease. We started to work very closely with the UK and do joint funding because we can spend a bit more money between us to look into areas of macular disease or inherited retinal disease because quite a lot of them are sort of a crossover. We fund big, big fund, you know, up to 300,000 pounds for one project, but right down to what we call seed corn research, which is where someone wants to test a principle before going out for a bigger amount of money. So we'll fund, you know, £25,000 just to see if a premise works. It could be at Lugfoot. So for example, there was a seacorn project looking at a protein that was in our DNA, which was potentially connected to AMD. And we tested that. It wasn't AMD. It was something called SARS-Biz dystrophy. sorry. But that Seacorn grant was used very well and they proved the concept and they're now going out for bigger funding, including from us because they can come up from us as well. The other thing we're doing is we fund PhD students.

[15:20] So we have a number of PhD students in various different stages of their PhDs. There's generally two to three PhD students a year and get funded by the Macular Society for three years. And they're very good. I mean, they're very young, very enthusiastic. There was a young researcher, PhD student on our last annual conference who was talking about how he'd made light receptors in a dish. So our light receptors, the cones and rods, they're the things that help us see. And he'd made some in a dish, which is very exciting because that is a move on. Because most stem cell research recently has been about the RPE layer, which is the bit which feeds and takes all the waste products away just when we see. So that's very exciting. So again, these PhD students hopefully will get their PhD, and then potentially they can go on to another scheme where we fund them going on, but they need to find themselves a research platform to do that on, and we'll fund them again with a bit more money, which is quite nice.

[16:26] So we have, as I say, millions of pounds worth of research going on every year, and we've had a real impact. And it's good to know that, for example, the Macular Society, these injections that everybody has, you know, every six to eight weeks or ten weeks, depending on what you're on, was partly developed by the Macular Society or funded by the Macular Society. We've done lots and lots of research or funded lots of research into genetics. So we understand a little bit more about the genes and the genetics of macular dystrophy. We can see those elements coming out to play in things like the Stargardt trial at the moment, the oral tablet that you could take to potentially slow the progression of Stargardt disease, which is looking very promising. It's too late for me, but there's people that are coming with starabouts later in early, you know, a bit younger than me, because I am quite old.

[17:25] That's what will happen. But yes, so there we go. So there's the Maculay Society in a nutshell. So search and support information. There we go.

[17:34] Music.

[17:41] We do hope you enjoyed this episode. If you'd like to join us for our live recording of our podcast, you can do so via Zoom. Talks take place on the second Thursday of the month at 10am London and time. The Zoom ID is 458-043-7872. That's 458-043-7872. Live Well is a series of talks aimed at helping people make the most of life with sight loss. Live Well is a collaborative project between six local independent sight societies. Sight Advice South Lakes, Cumbria. My Sight Nott's, Nottingham. Sight Airedale, the Airedale area of North and West Yorkshire. Support for Sight, Mid and West Essex. Sutton Vision, the London Borough of Sutton and Outlookers, Huddersfield, West Yorkshire.