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IN TOUCH 鈥� Fight For Sight Report; England鈥檚 First Blind Musical Therapist

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TX:听 15.09.20听 2040-2100

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PRESENTER:听 听听听听听听听 PETER WHITE

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PRODUCER:听 听听听听听听听听听 MIKE YOUNG

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White

Good evening.听 Tonight, in an In Touch exclusive, we hear from the Chief Executive of the Fight for Sight charity, which is calling for a major increase in funding of research into eye disease.听 And the power of music to help our emotional wellbeing and awaken memories.

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Music

[Singing] Can you hear us Andy, we鈥檙e singing, Andy, for you.

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White

A blind music therapist will be talking us through the way he works.

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But first, the government is being urged to double its spending on research into eye disease.听 Fight for Sight, the charity which campaigns for the ending of preventable sight loss, argues that visual impairment is costing the country over 拢25 billion annually and that more than half the two million cases of visual impairment in the UK today are preventable.听 And without action, they say, both of those figures are rising fast.

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We鈥檒l hear from Fight for Sight in a moment but first, Joe Pepper from Croydon is 28, he鈥檚 a teacher, he鈥檚 been telling us about a treatment that鈥檚 turned his life around.

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Pepper

I have a condition called choroideremia, it鈥檚 a degenerative condition that basically means that eventually your sight closes in from the periphery and eventually leads to the loss of your central vision.听 It鈥檚 around about one in 50,000 people in the UK have choroideremia, so it鈥檚 exceptionally rare.听 At the age of 16 I was told by doctors that it would be highly likely that I鈥檇 go blind in the next 20 years.听 In the early 2000s there was some work done by UCL, originally funded by Fight for Sight, to try and find out what gene was causing choroideremia.听 That was then taken up by Oxford University, who then worked out a way that actually they might be able to stop sight loss and a trial was launched in 2014 originally.听 I joined the trial in 2015 and was invited to, basically, undergo a gene therapy treatment.听 When I attended my operation, I was quite fearful, I didn鈥檛 really know what the future would hold but there was really nothing else left for me.听 And a month later, after being treated by Professor Robert MacLaren and his team, I read four lines of sight that I hadn鈥檛 read for 10 years.听 And it was probably the most profound moment that I think I鈥檒l ever have in my life.

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The team up at Oxford University Hospital, originally their aim was that they just wanted to hold the deterioration in my sight and every single person that has been part of this trial, it is moving towards an official treatment phase, it鈥檚 currently in phase three, have made sure that they have not lost anymore sight since the day that they went into that operating theatre.听 Some are fortunate that have had more sight, if I鈥檓 honest with you, more sight was a gift that I was never expecting, I鈥檓 just glad that I know that losing my sight in its entirety is not going to happen, to know that I will not be blind is something quite exciting to be able to say but also, at the same time, quite sad, the fact that at the moment I am one of only a handful that can say that.听 This is a genuine chance for action and to improve people鈥檚 lives and I just genuinely hope that more people can have that same feeling that I had.

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White

That鈥檚 Joe Pepper.

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Well in a report released tomorrow, but to which In Touch has been given exclusive access, Fight for Sight also argues that the quality of life for many of those with severe sight loss is poorer than that of almost all other severe health conditions, including depression, arthritis and advanced breast cancer.

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Well I鈥檓 joined by the Chief Executive of Fight for Sight, Sherine Krause.听 Sherine, no one would argue about the desirability of ending preventable blindness and hearing the kind of examples that Joe has given us, but what鈥檚 the evidence that more than half of it in this country is preventable because that鈥檚 quite a claim?

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Krause

It is and one of the things we鈥檇 like to see for certain is actually more information about people looking after their eyes, trying to avoid conditions that may go further.听 But there鈥檚 a big part for science to play in that too.听 Joe鈥檚 example is a huge success but things like artificial intelligence, at the moment there鈥檚 trials going on to look at how we can scan people鈥檚 data and identify those for whom a condition may go further.听 So, for example, if we think about glaucoma, if we could identify more quickly those people with glaucoma so we can stop it in its tracks at an earlier stage, we can stop them losing their sight along the way.

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White

Well that鈥檚 why I think perhaps we should talk a little bit about defining preventable because you gave an indication there that some of this preventable means people getting to get care earlier, people doing things themselves to prevent it.听 So, it鈥檚 not all about government funding.听 I mean do we mean that within the knowledge that we currently have, loss of sight could be avoided or do we mean that if we invested enough in research we could learn enough to prevent or reverse many cases, which surely, in time, you could apply to almost all disease actually?

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Krause

It鈥檚 a mixture of both.听 So, there are simple things that people can do in the here and now that will protect their eyesight.听 One of the things that we鈥檝e often campaigned on is wearing sunglasses.听 People don鈥檛 always realise that on a sunny day, even on a not that sunny day, wearing sunglasses will prevent damage to your eyes, in the same way that we know putting sunscreen on protects damage to our skin.听 So, there are things we can be doing.听 And one of the things we, and other sight loss charities do, is try and put a focus on those from time to time鈥�

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White

So, this isn鈥檛 all about government spending is it?

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Krause

It isn鈥檛 all, there are things we can all do but what we would ask government to do is to raise awareness of those issues.听 We鈥檝e done campaigns, we鈥檝e put out a lot of information and we know that people鈥檚 habits can take a long time to change.听 So, there鈥檚 a big awareness raising piece to be done there.

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White

But there is quite a lot of sight problems which certainly aren鈥檛 preventable at the moment are they?听 I mean a lot of the diseases 鈥� macular disease and late stage macular disease 鈥� can鈥檛 be prevented?

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Krause

There鈥檚 little that can be done at the moment but there is a huge amount of research going on in the area of macular degeneration.听 And one of the things we are very mindful of is yes we need more funding, much more funding all round, going into research but actually if you target it well into those things that are high prevalence, high cost and currently largely untreatable, like macular degeneration, like diabetic retinopathy 鈥� which is also greatly on the increase 鈥� the potential to deliver those breakthroughs could have very wide impact on the population.

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White

Can I talk to you about this 拢25 billion and rising, which you say visual impairment is costing the UK economy?听 Now that鈥檚 a jaw dropping figure.听 Just explain how you鈥檝e arrived at it because this isn鈥檛 just direct health expenditure is it?

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Krause

It isn鈥檛 and what we鈥檝e done is we鈥檝e gathered data from across the UK and from across all sorts of areas and we鈥檝e also talked to hundreds and hundreds of people with sight loss.听 So, we鈥檝e got a wealth of data, which I don鈥檛 think has ever been available in the same way before.听 And yeah, you鈥檙e quite right, the vast majority of that cost is outside the health and social care system.听 And a lot of it is down to things like workplace barriers, that so many people with severe sight loss in their younger years actually don鈥檛 work, some of them for their whole lives.听 There are significant workplace and education barriers and also things like family and friends picking up many of the costs of informal care for many years potentially.

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White

So, the argument is 鈥� your argument is, spend more money now, this is what you鈥檙e saying to the government, and you鈥檒l save a great deal more in the future.听 The trouble is, although governments rarely admit it, this isn鈥檛 an argument governments like very much because what so often happens, especially when it comes to health, is that spending more uncovers greater need and therefore results in even more, not less, expenditure.听 I mean isn鈥檛 the NHS living proof of that?

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Krause

And I think the NHS is actually, in the long term, one of the real reasons why we have to do that.听 There would be a real cost to not acting now.听 For example, ophthalmology clinics are already the most busy clinics in the whole of the NHS and that pressure is only going to increase.听 In particular, you know, we鈥檙e coming out of a pandemic situation here and an ageing population that pressure on the NHS is going to increase.听 By investing more in research, if we can improve the quality of life of thousands of people it will also take pressure off the NHS as well.

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White

Right, now you say that eye research is woefully underfunded, we spend around 拢25 million a year, which is about one and a half percent of what we spend on health and yet you also say the UK is one of the leaders in the field when it comes to research.听 Isn鈥檛 there a contradiction there?

Krause

No, we certainly do punch above our weight in terms of research, we鈥檝e got some incredibly talented researchers in this country doing some work across a whole range of different disciplines that鈥檚 very exciting and that could deliver both treatments and cures.听 But we lead the way despite the low levels of funding.听 When you consider the growing number of people who would benefit from this there is a really urgent need to accelerate the process really.

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White

Now we put what you say to the Department of Health, they said: 鈥淭he UK is leading the way with health research and invests a billion pounds a year through the National Institute of Health Research.鈥澨� They鈥檙e talking about health generally there of course.听 鈥淭he Institute welcomes funding applications for all research projects, including ophthalmology, and has awarded 拢19 million to the Moorfields Biomedical Research Centre, which aims to substantially improve the diagnosis, management and treatment of eye conditions.鈥�

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I mean that seems to suggest people need to request more funding on a trial by trial, treatment by treatment basis.

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Krause

We welcome every bit of new funding and the money going into Moorfields over some years, that is over some years, is very welcome.听 But the fact remains that only one and a half percent of the whole pot is going into sight loss research.听 But there are ways that that emphasis could be shifted by opening new programmes specifically to deal with this.听 If we can, as a nation, accept that we are in the midst of a national crisis around eye health we could start to really prioritise those areas and actually make sure that those breakthroughs, which are very possible, as Joe has so wonderfully shown us today, we can bring those closer.听 There is something about the number of conditions that are out there 鈥� there鈥檚 over a hundred conditions that are causing people such problems with their eyesight 鈥� and a lot of those relate to ageing and we are, as a population, living longer and actually living well in our later years, is very important for most of us.听 Retaining our sight is a really important way that people are able to retain their independence in their later years.

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White

But of course, all those working on disease will be campaigning to get more prevention work done, won鈥檛 they?

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Krause

They will, there are many calls on government funding.听 So, we鈥檝e asked for funding to be doubled and we know that鈥檚 not the whole solution but it would be a great start.听 What we know is that when the government takes a condition seriously that scale of increased investment is possible.听 To give you a good example, in, I think, it was 2012-15 the government doubled its investment in dementia research.听 For each person affected by dementia there was a total of 拢97 being spent on research.听 For sight loss, the comparable figure is just 拢9.60.

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White

I just want to put one more point to you and this is very much related to the way this programme looks at visual impairment.听 Some of our listeners will be concerned, I think, that in making your case you鈥檝e stressed the poor quality of life of visually impaired people, isn鈥檛 there a danger that in your understandable desire to draw attention to preventable blindness you鈥檙e using an argument which contributes to the great fear of blindness that many people have 鈥� you know, blindness means having a terrible life?

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Krause

The fact is that those quality of life scores, those were what people recorded themselves.听 So, we spoke to hundreds of people to get their perspective on their conditions.听 What we鈥檙e trying to do is to put a focus on that and say, actually there is something we can do about this.听 There are also recommendations in the report that are about how we could do some things to improve quality of life in the here and now for people already living with sight loss and that鈥檚 about government and policymakers needing to remove the barriers to employment and education, transport and services, all those things.

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White

Sherine Krause thank you very much indeed.

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Now, lest we forget that many blind people do have a good quality of life and contribute to the quality of lives of others, anyone listening to In Touch regularly, over the years, will have got used to the idea that visually impaired people do a startling range of jobs, everything from judges to football coaches, home secretaries to house builders.听 So, I was rather surprised to discover that, according to the RNIB, Carl Morgan is the first blind person in England to qualify as a music therapist.听 After all, one of the odder perceptions about us, as a group, is that many of us are very musical.听 What is clear, having seen some of Carl鈥檚 references, that he is very highly thought of in his profession.

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Carl Morgan, you got a masters degree in music therapy in your 50s, are you surprised to be the first blind person to get that in England, to qualify as a music therapist?

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Morgan

Not entirely.听 Before I undertook my training in 2012, blind people were not really encouraged to enter this particular profession due to the visual aspect of the work, i.e. body language and eye contact of a client, when you鈥檙e working either on a one-to-one basis or with a group.

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White

Well, we鈥檒l come on to how you deal with that in a moment but can I ask you 鈥� what drew you to it, why did you want to do this?

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Morgan

I went to music college in the 1990s and then I taught guitar and keyboard after leaving and performed around hotels, bars and social clubs.听 Two years, incidentally, before I undertook my training as well, I went to Cyprus and I worked as a music teacher in Pathos Music School and also worked around hotels.

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White

Now Carl, it鈥檚 one thing to have the qualification, which you鈥檝e got, it鈥檚 another to get the job or get the work.听 Did potential employers have reservations about your ability to do the job?

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Morgan

Initially yes, some of them weren鈥檛 too sure but part of that was they didn鈥檛 really have enough knowledge about music therapy I think and how it could actually assist people with learning difficulties and people with dementia.

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White

So, tell us how you work.听 You raised the issue of those doubts, do you practice with groups, on the whole, or do you need to work with individuals, in order to make your methods work?

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Morgan

Well, I work with individuals on a one-to-one basis and I also work with groups.听 I work at around six homes in the Bristol area.听 For those clients who are harder to reach, shall we say, I work with a support worker.听 Through her vocal improvisation she sings to me what she sees, so therefore she鈥檚 able to communicate to me the reaction of the clients.

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White

Well we鈥檝e got an example of that.听 Let鈥檚 just hear it and you can explain what鈥檚 happening there.

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Example of therapy

Singing

I see you sleeping Andy, I see you sleeping Andy, I see you sleeping Andy, can you hear me?

Can you hear us Andy, can you hear us Andy?听 We鈥檙e singing, Andy, for you.

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White

So, just explain, Carl, what exactly is happening there.

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Morgan

Well we have two clients who have severe learning difficulties, who are non-verbal, they have very little exercise and they鈥檙e actually sleeping, sometimes, in the daytimes.

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White

So, when you鈥檙e singing, when you鈥檙e saying 鈥淐an you hear me Andy?鈥�, you鈥檙e basically trying to reach him with that?

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Morgan

Yes, even though they have very severe learning difficulties they do like music, I am actually reaching them and, of course, they鈥檙e feeling the movements and hearing the movements.

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White

Is this something that you think a lot of visually impaired people could do?

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Morgan

Yes, I do.听 I definitely would like to think that blind people are able to and have the confidence to train to be a music therapist because with the aid of a support worker they can overcome some of these visual barriers.听 And, of course, music therapy, a lot of the time, is about listening and improvisation work.听 So, the blind person doesn鈥檛 need to know written music.

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White

Carl Morgan, thank you very much for joining us.

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Morgan

Thank you.

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White

And that鈥檚 it for today.听 Your comments, as always, please on anything that you鈥檝e heard on the programme.听 You can email intouch@bbc.co.uk or you can go to our website bbc.co.uk/intouch from where you can download tonight鈥檚 and previous editions of the programme.听 From me, Peter White, producer Mike Young and studio managers, Jonathan Esp and Mike Smith, goodbye.

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