³ÉÈËÂÛ̳

Downloaded from www.bbc.co.uk/radio4

Ìý

THE ATTACHED TRANSCRIPT WAS TYPED FROM A RECORDING AND NOT COPIED FROM AN ORIGINAL SCRIPT.Ìý BECAUSE OF THE RISK OF MISHEARING AND THE DIFFICULTY IN SOME CASES OF IDENTIFYING INDIVIDUAL SPEAKERS, THE ³ÉÈËÂÛ̳ CANNOT VOUCH FOR ITS COMPLETE ACCURACY.

Ìý

Ìý

IN TOUCH – A Treatment for Two Eye Diseases; Tactile Breast Examinations

TX:Ìý 22.08.2023Ìý 2040-2100

PRESENTER:Ìý ÌýÌýÌýÌýÌýÌýÌýÌý PETER WHITE

Ìý

PRODUCER:ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý BETH HEMMINGS

Ìý

Ìý

Ìý

White

Good evening. ÌýLater tonight, the job which is saving lives and, at the same time, providing employment for visually impaired women in Germany.

Ìý

Clip

MTEs – Medical Tactile Examiners – who have undergone the training of Discovering Hands are able to detect lumps between six- and eight-millimetre size.Ìý But as we… as the gynaecologists normally find tumours between one and two centimetres.

Ìý

White

So, are we likely to see it in the United Kingdom?Ìý Well, stay tuned.

Ìý

In recent times we’ve been able to bring you some pretty encouraging news of drugs which have been able to improve the treatment of eye conditions like age-related macular degeneration or AMD and diabetic macular oedema or DMO, as it’s better known.Ìý Both result in vision loss caused by swelling behind the eye which can now be slowed or even halted by injections.Ìý The really encouraging news is that the latest of these drugs has now been approved for use by the NHS for people with DMO and it can be given progressively less often, reducing the need for repeated visits to your eye clinic.Ìý It’s called Vabysmo and, in a moment, we’re going to be talking to one patient, who’s currently using it and who was involved with approving its use on the NHS.

Ìý

First, though, I’m joined by Robin Hamilton.Ìý Robin is ophthalmic surgeon at Moorfields Eye Hospital.Ìý Robin Hamilton, first of all, that’s a grossly oversimplified summary of these conditions by me, just explain a little more about how this group of drugs actually work and what they do.

Ìý

Hamilton

They’re called intravitreal drugs because they’re injected directly into the vitreous in the eye.Ìý And they’re very effective at reducing the swelling, as you say, from macular degeneration and from diabetic macular oedema.Ìý And the most recent development is with Faricimab or Vabysmo, Vabysmo being the trade name.

Ìý

Now this is a really good drug, the bispecific antibody, that acts not only against the standard

vascular endothelial growth factor that we had been using in the past but also has an action against angiopoietin-2.Ìý Now this, potentially, and in the studies, leads to not only the similar or improved visual acuity outcomes but less frequent injections.Ìý It maintains vision in 90-95% of patients in macular oedema and improves in just over a third.Ìý And it’s worth noting that, you know, in macular degeneration at the moment it’s just 40,000 patients on a yearly basis who develop it who require the treatment.Ìý For a diabetic oedema point of view, again, we get significant improvements in vision and if you’re going to reduce the number of injections by two in each year for both diseases then that’s a significant reduction in the number of injections.Ìý And if you take into consideration that a lot of the patients would need a care giver to come with them and, potentially, would be out of action not only for the day that they come for the injection but maybe one or two days afterwards then that has a significant effect on people’s life and lifestyles.

Ìý

White

Let me bring in Bernie Warren.Ìý Now Bernie we talked to you some time ago about another drug – Beovu – which, it was hoped, would have a similar effect, why didn’t that work for you?

Ìý

Warren

So, the Anti-VEGF’s I’ve had before are just all Anti-VEGF’s, there’s nothing more than that within it.Ìý But within this drug there’s another element on top.Ìý And so, it’s something that I’ve never had before, it’s new to me, new to my eye, so it might be a more positive outcome than I’ve had so far.Ìý For me, for example, I can’t take or have steroid treatment because it raises my eye pressure, so I have to have Anti-VEGF, I can’t have anything else.Ìý So, it was really important to try something that was Anti-VEGF, which I can have safely but also with a different element in it.

Ìý

White

I mean you’ve been receiving Vabysmo just over the past few weeks, is it too early to say what the effects are?

Ìý

Warren

Yes, I mean for a patient who’s started on any Anti-VEGF they’ll have what they call a loading dose, that’s four injections and that’s every four weeks and I’ve had two.Ìý So, it is a little bit early to say but after, I would say, after a month or two months we’ll then have another look and see, right, what is the difference and if there is a difference then maybe we could go on to a treat and extend regime to elongate the time between the injections, which I’m really keen for, I’m on a four-weekly regime and have been on that since 2011, so to be able to have only a few injections would make a massive difference for me.

Ìý

White

And for those who don’t have this form of visual impairment, can you just explain the effect it has on you and the level of sight you have and what you can most optimistically expect from a drug like this?

Ìý

Warren

Okay, so I have diabetic macular oedema and that has really affected my central vision.Ìý So, the things I really struggle with are reading, watching television, recognising people’s faces, being able to tell colours – all the practical day-to-day living things that you’d want to be able to do.Ìý I haven’t been able to drive since 2013 because I just don’t see well enough.Ìý It’s hoped this drug, for me, will, at least, stabilise that vision.Ìý So, I have had a decreasing in vision over the last few years but if it could halt any other vision loss that would be a real positive for me because then I’ll know, right, this is where I am, this is where I’m going to stay because the worry for me is where am I going to end up with my vision, how much is that going to be affected over the next few weeks.Ìý So, if it will stabilise it brilliant.

Ìý

White

Just finally, Robin, I mean there seems to have been increasing developments in this field and I’m wondering just how far can this go, you know, have we reached its limit or could we see real further developments with drugs like this?

Ìý

Hamilton

We’ll continue to see further developments.Ìý And there is a lot in the pipeline and the pharmaceutical companies are putting a lot of time and effort in with conditions in patients.Ìý You’ll also find patients on pharmaceutical boards, directing in the appropriate manner. But there are lots to come including gene therapies for this disease, as well as the port delivery system which may reduce the number of injections from five or six a year down to one or two.Ìý Now all of these are big steps and all of these are going to create improvements for our patients.

Ìý

White

And I ask you this because I think the community of visually impaired people, with all sorts of eye conditions, are used to hearing these things but they often turn out to be perhaps further away than some of the indications that have been given, sometimes is a bit of overoptimism.

Ìý

Hamilton

I like to be optimistic but I fully take on board what you’re saying there and sometimes these, either whether it’s due to the finishing studies or some of the political red tape that is involved in getting some of the drugs to market, it can be slower than initially hoped from patients and hoped from physicians.Ìý But I think in this particular instance, and I’m sure Bernie would say the same, is that NICE pushed this through very quickly for both diseases, which was unprecedented really.

Ìý

White

You agree Bernie?

Ìý

Warren

Absolutely.Ìý When I started treatment back in 2011, there was just one drug available and now, you know, it’s so exciting to hear new drug after new drug and then there’s biosimilars coming along as well.Ìý So, I think it’s a really exciting time.

Ìý

White

Bernie Warren, Robin Hamilton, thank you both very much indeed.

Ìý

Now, from jabs to jobs and regular listeners to In Touch will know that when you’re visually impaired, however high your skill levels, work isn’t that easy to find.Ìý It’s still the case that only around 30% of visually impaired people of working age are in a job, figures which are, unfortunately, replicated around the world.Ìý But there is one development we can tell you about which seems to buck that trend and, at the same time, saves lives while it’s also providing challenging and satisfying work for visually impaired women.Ìý The project called Discovering Hands involves people using touch to locate indications of breast cancer in early stages.Ìý The project was introduced by gynaecologist Dr Frank Hoffmann and he joins us now.

Ìý

Dr Hoffmann, how did this all start, where did the idea come from?

Ìý

Hoffmann

Working as a gynaecologist means that early detection of breast cancer is one of my main tasks.Ìý And I was not happy with the quality I was able to offer my patients to do effective early detection and I was thinking how I could make that better and it was one morning under my shower in this very creative moment this idea came to me that that should be the perfect job for visually impaired people.Ìý And from this first idea to the first project, it only took six months and then we started the project with the support of [German name], the governmental organisation which develops new jobs for visually impaired people.

Ìý

White

Now sometimes people do have rather romanticised views of blind people’s abilities, in terms, not just of touch, but of other senses, as if there are compensations, I’m just wondering how persuasive was the evidence that this would work and it was actually true that people could locate these kinds of problems with their fingers.

Ìý

Hoffmann

We did scientific research and that showed that MTEs – Medical Tactile Examiners – blind women who have undergone the training of Discovering Hands are able to detect lumps between six- and eight-millimetre size.Ìý Whereas we, as the gynaecologists, normally find tumours between one and two centimetres in diameter and that makes very, very meaningful difference because the killer is not the lump in the breast, the killer is always the metastasising cells who go to the liver, to the lungs, the bones and the brain.Ìý And if you find breast cancer in this very first stage, where it hasn’t sent all its cells to the body, we’ll heal this patient.

Ìý

White

And how did you do those tests?Ìý You know, in those very early days, when it was just an idea you’d had in the shower, how did you do those tests to find out whether it really was true?

Ìý

Hoffmann

I went to a vocational training centre for visually impaired people and together with the team I developed an assessment which every candidate has to undergo to prove that she is able to use superior sense of touch, let’s say or have superior sense of touch.Ìý And then we started scientific research, together with the University of Essen and there these results were [indistinct word], we train now more than 50 MPEs already in Germany.

Ìý

White

Well, that was my next question, so you’ve got over 50 people actually doing this job?

Ìý

Hoffmann

Yeah and not only in Germany, we do have franchise partner in Austria and have a very big pilot project in India where the social impact may be much higher than in Europe.

Ìý

White

Right, let me bring in Elvira ±áä³Üß±ô±ð°ù, who is in Leipzig and carries out some of these examinations and the job, I mean tell me about the kind of training and assessment you had to go through.

Ìý

±áä³Üß±ô±ð°ù

We were trained in medical terminology so that we can actually speak to the doctors face-to-face and give them proper medical terminology for what we are finding and where we are finding it.Ìý We learnt about the breast and how it’s made up and all the connections – I mean the breast is only part of a whole and there are a lot of links to other parts of the body, essentially the female parts.Ìý And we learnt all about those.Ìý But we also had quite extensive training in almost like counselling skills because we talk a lot to the women and that’s what I really love about this job.Ìý The examination takes about an hour and throughout this hour we talk about breast health, about their own health, sometimes about blindness, sometimes about something completely different, it just depends what the patient wants and needs at the time.Ìý And we’ve been trained to become really open to that and responsive to that and find out is this woman very afraid, does she want to talk about something completely different or would it help her to talk about cancer and the dangers.Ìý But, of course, we also had extensive training in our tactile skills because it’s using our sense of touch in a completely different way from what we have done before.Ìý But the reaction is very different, I mean some people apologise about a hundred times for asking us questions, some people really want to know and they’re really keen to know how do you do things, how do you find your way.Ìý I’ve had people tell me – I don’t believe you can’t see, you’re moving about in this room so safely.Ìý And I explain to them that I always put things in the same place, every time I come in.Ìý I’ve had people, unfortunately, try to test me, just leave a shoe or a bag or something in the middle of the way, telling me that they’ve never felt a lump before and then I find it and then they tell me – oh yes, I found that, I just wanted to know if you could find it.Ìý Things like that.Ìý Interesting little tests to see what I could and couldn’t do.Ìý And I’ve had people who didn’t want to know anything about blindness at all because they were so anxious about the possibility of having cancer that that’s all they wanted to talk about.Ìý It’s very, very different, what happens.

Ìý

White

Yeah, so all – all the varieties of human nature really involved in that.

Ìý

±áä³Üß±ô±ð°ù

Yes basically, yes.

Ìý

White

Just to go to a slightly different area, Elvira, just in terms of the practicalities of a breast examination – when should people be performing them and where do people, like you, come in?Ìý I mean you’ve said you’re not a doctor but presumably you’ve acquired quite a lot of knowledge about this over the years?

Ìý

±áä³Üß±ô±ð°ù

We say you can never start too early and it’s never too late to start.Ìý I’ve got patients from the ages of 18 to 92.Ìý But it’s important that they either examine themselves or be examined at the right time in their monthly cycle because the breast changes during your monthly cycle.Ìý It’s important to be examined just after your monthly bleed because the breast feels a lot more lumpy just before then.

Ìý

White

Just one more thing.Ìý We’ve talked a lot about the patients but this is quite interesting from a work point of view and I’m interested in where this fits in to the job situation for blind people generally because I know you spent a long time working here in Britain, where this technique, incidentally, hasn’t yet been introduced, but what was your sense of opportunities here in Britain and how did it compare, how does it compare, with Germany?

Ìý

±áä³Üß±ô±ð°ù

We’re talking about two completely different systems, two completely different educational systems and vocational systems I think because in Germany there’s a lot of emphasis on vocational qualifications – to do a certain job you have to have the right qualification and you start out as a young person doing that qualification and then you’re in that job.Ìý So, for blind people, it’s very often your typical office jobs and you do an office-based qualification and then you work in an office.Ìý Many blind people work as physiotherapists or masseurs, something like that.Ìý So, they’re all very vocational qualifications.Ìý Whereas in Britain I studied linguistics and then more or less worked my way up.Ìý I started as an admin assistant and worked my way up within the RNIB and became an educational adviser and then changed jobs and worked for the Open University.Ìý I think the way in is a little bit more flexible in Britain but I know more blind people in my own circle of friends and acquaintances who are working in Germany than I did in Britain, let’s put it that way.

Ìý

White

Interesting.Ìý I just want to go back to Frank Hoffmann and you’ve mentioned that it is happening now in other parts of the world but is it going to come to Britain and if so, when?

Ìý

Hoffmann

I hope so, I hope that it will go to Great Britain one day.Ìý We intend to found a national company dedicated for starting new projects in other countries, in Europe and maybe worldwide because we are not able to go proactively to other countries with the team structure we do have nowadays.Ìý But I hope very much that we are in a better position from the beginning of the next year and Elvira, I know that you would be the first one who would be willing to return to Great Britain to become an adviser and teaching MTE for candidates there.

Ìý

White

So, that sounded like a job offer Elvira.Ìý Well, Dr Frank Hoffmann, Elvira ±áä³Üß±ô±ð°ù, thank you both very much indeed.

Ìý

And that’s it for today but we are planning, in the next few weeks, a question-and-answer session with the organisation Guide Dogs.Ìý So, if there’s anything you’d like to raise, this is your opportunity to do it, whether it’s training, eligibility, waiting lists or indeed something else.Ìý You can email intouch@bbc.co.uk, leave a voice message on 0161 8361338 and that goes for any issue that you’d like to raise with us.Ìý There’s more information on our website, as well, that’s bbc.co.uk/intouch.Ìý

Ìý

From me, Peter White, producer Beth Hemmings and studio managers Andy Garvey and Helen Williams, goodbye.

Ìý