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Funding Research Into Blindness; Blind Physios

Leading eye experts call for more funds for medical research. And we hear from the blind physiotherapist who's still working after more than 60 years.

Leading eye experts in the UK have signed an open letter in The Guardian calling for more funds for medical research. We'll hear from Professor Chris Hammond who is one of the signatories of that letter... And Fight For Sight's Dr Rubina Ahmed.
And we meet Mike Tetley, the blind physiotherapist who's still working after more than 60 years.

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19 minutes

Last on

Tue 7 Jan 2020 20:40

Fight For Sight Charity

Fight for Sight is a charity that is looking for participants for a survey that aims to gather insights on the personal impact of sight loss and blindness. to take part.

Research into blindness, Blind physios

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


TX:听 07.01.20听 2040-2100

PRESENTER:听 听听听听听听听 PETER WHITE

PRODUCER:听 听听听听听听听听听 MIKE YOUNG

White

Good evening.听 Tonight, the eye doctors and researchers calling for urgent funding to treat and prevent blindness.听 And the blind physiotherapist in his 90th year who鈥檚 still treating dozens of patients.听 He told me the very practical reasons for his keeping on working.

Clip

I find it quite difficult to get money out of a hole in the wall and when I鈥檝e got patients coming in, I take money of them 鈥 cash 鈥 and so I don鈥檛 have to go into the hole in the wall.听 And that鈥檚 a big point.

White

I think that gives you the measure of the man. 听We鈥檒l be hearing later from Mike Tetley about his fascinating life story.

But first, a dozen ophthalmologists and researchers have written an open letter calling for an immediately injection of money into the treatment and prevention of blindness.听 They argue that science already has many answers to treating forms of blindness but the funding eye diseases get completely fails to match the number of people affected and that the problem is only growing worse.听 They say that while 20% of the population will suffer from sight loss or blindness during their lifetime, it gets only 1% of national funding.

Well, the charity Fight for Sight is coordinating this campaign and I鈥檒l be talking to their head of research Dr Rubina Ahmed in a moment.听 But first, Professor Chris Hammond, from King鈥檚 College in London, is one of the signatories of this letter published in today鈥檚 Guardian.

Professor Hammond, just explain about the research you do and how more funding would affect your work.

Hammond

Well my particular field of interest is in some of the common eye diseases 鈥 glaucoma and macular degeneration and myopia 鈥 and we鈥檝e been exploring the genetics of these diseases, what predisposes some people to get them, what genes are involved and that may help us identify the pathways and hopefully, in the future, therefore, new treatments for these diseases.听 But also, we鈥檝e been moving towards precision medicine, that is predicting who will get a disease and how we might screen or identify them early on and then trying to personalise their treatment.听 If I had more money, I would be able to expand that field of research, research into more diseases, get ever larger sized studies鈥

White

So, in other words, targeted treatment before the eye disease really kicks in?

Hammond

Absolutely.听 The old adage prevention is better than cure remains and if we could get things early, particularly for diseases like glaucoma where vision loss is irreversible, then clearly that would be beneficial for all those patients that I see in my clinic who suffer from vision loss.

White

But everyone wants more funding and one discipline鈥檚 gain is another one鈥檚 loss, that鈥檚 true, isn鈥檛 it?

Hammond

I think that鈥檚 true but clearly my interest is for eye disease, although I don鈥檛 want to take money from anywhere else.听 Our sector, as a whole, the eye charity sector, does devote less money to research than it does to care and support and while care and support are important maybe compared to some of the other diseases we could try and allocate more money towards research.

White

Let me bring in Rubina Ahmed.听 One of Fight for Sight鈥檚 points is that science already has some of the answers in its grasp, I mean give me some examples of what you mean, the problems that we鈥檙e close to solving.

Ahmed

Currently, this year actually, a gene therapy for an inherited retinal disease has been licensed on the NHS.听 And some of the work that Fight for Sight has funded in early stage research is actually leading to a gene therapy in a late stage clinical trial at the moment, again for an inherited eye condition.听 And, so, we are clearly seeing lots of breakthroughs coming in.听 We all hear about stem cell research, we hear about the power of artificial intelligence, particularly in ophthalmology, using AI for potentially diagnosing and detecting diseases.

White

Because it can be done very quickly using computers can鈥檛 it?

Ahmed

Potentially, yes it can.听 I mean it doesn鈥檛 cut out the clinician, what it does allow both clinicians to do is more effectively use their time.听 Although we have a lot of potential, we really need an injection of more money to really speed up that research and allow it to come into the clinics and make changes to people鈥檚 lives quicker.

White
The Department of Health has given us a statement.听 They say: 鈥淩esearch funds are not ring fenced and they鈥檙e judged openly and based on the importance of the topic, the value for money and the science behind it.鈥澨 And it says that close to 拢20 million has been spent over five years on research at the Moorfield鈥檚 Eye Hospital, making key breakthroughs in areas including gene therapy.

I mean that sounds as if they feel they鈥檙e doing what it鈥檚 possible to achieve.

Ahmed

You know, well I think if you look at the figures that we鈥檝e produced, which show that only 1% of the research budget goes into eye research, we think there is more space to really make a difference.听 And we recognise that the Department of Health and the other funders have other priorities but really given that the prevalence of some of these eye diseases are only set to increase it really makes sense to inject more money now and really future proof ourselves.

White

So, I mean, Chris Hammond, is there a sense that eye disease, for whatever reason, is a bit of a Cinderella service?

Hammond

I think certainly compared to some of the big disease groups, like cancer, it probably is a little less emotive, maybe, and if you interviewed other specialists, they鈥檇 probably tell you they felt they were sometimes a little marginalised.听 But I certainly think that we could benefit from getting more support from some of the big funding bodies including the government.

White

Right, now, Rubina Ahmed, a final word, because I know you鈥檙e working on a survey to show the social and economic cost of sight loss and you want people to take part in that.听 Don鈥檛 we already know quite a lot about that, that it causes people distress, it often results in their not being able to work?听 Why do we need another survey like this?

Ahmed

This survey鈥檚 part of a much broader campaign for next year and a report that we鈥檙e producing which will include the health economic cost of sight loss in the UK, both now and in the future.听 Alongside the potential benefits that research could bring.听 So, as part of that report, it would really be remiss of us to miss out the patient impact.听 We recognise that there are lots of surveys that happen but we hope this will be a bit more comprehensive in that some of the questions that we will be asking people about includes what they would like to see from research and how that can help inform our research priorities and what we fund as a funder.

White

So, you want to basically hear from more people with their life stories if you like?

Ahmed

Completely.听 We need to hear more voices.

White

Dr Rubina Ahmed, Professor Chris Hammond, thank you both very much indeed.听 And there鈥檒l be a link to the Fight for Sight website on our website.

Now in the last few weeks we鈥檝e heard on this programme quite a bit about some of the bigger charities but next week we鈥檙e going to be focusing on the work of the close to 200 much smaller local voluntary blind charities in the UK.听 Jenny Gage is the chief executive of one of these, it鈥檚 called Sight Concern, it鈥檚 based in Worcestershire.

Gage

I think the two main pressures are the difficulties in securing long-term funding and ensuring that you鈥檝e got funding coming in.听 There鈥檚 been a huge number of government cuts over the last five to 10 years.听 It鈥檚 also around awareness raising of the organisation, lots of people will support charities but until they have any experience of sight loss, they鈥檝e never really looked for a local sight loss charity, so they don鈥檛 necessarily know that we exist.

White

Well, we鈥檒l be hearing more from Jenny Gage next week and if you work for or indeed benefit from the efforts of a smaller charity in your area, a local charity, do get in touch.听 The email is intouch@bbc.co.uk and tell us about your experience and especially any innovative services that they offer and how they鈥檙e coping with the pressures of operating in tough times.

Now in October, last year, on In Touch we were talking about the rise and fall of physiotherapy as a profession for blind people.听 Michael Cassidy from the Association of Visually Impaired Chartered Physiotherapists told us there were once as many as 400 blind physios in the UK.听 However, over the last 30 years those numbers have declined due to things like tougher qualifications and the rising level of paperwork involved.

Cassidy

There hasn鈥檛 been a totally blind person through the system for quite some years now.听 I could never say no totally blind person should be trained because there may just be the odd one who says 鈥 Hey, look, I can do this.听 And the circumstances are such that they do manage to get through.

White

Well, one of the people who got in touch with us, having heard that, was Mike Tetley from St Albans.听 He鈥檚 just short of 90 years of age and he鈥檚 still working as a physiotherapist, having travelled the world researching the subject.听 Back in the days when Kenya was a British colony a war broke out between the British and the Mau-Mau, also known as the Kenya Land and Freedom Army, Mike was shot in the head and blinded in the mid-1950s during that Mau-Mau uprising.听 Well sensing a fascinating story, I headed to Mike鈥檚 home, to hear more about his remarkable life.

Tetley

I was a structural engineer, qualified from university and only worked for a year but because I was born in Kenya and spoke native languages when the Mau-Mau trouble started the British government conscripted us and I was put in charge to command African troops.听 And it was while fighting Mau-Mau that I got shot.听 That was in 1954 and I was jolly lucky because I was alone with my batman and seven of the terrorists came to cut me up with those long cane knives but he killed all seven from 25 yards, so I was very lucky.

White

You were lying on the ground at this time, how much were you aware of what was going on?

Tetley

None at all but my batman said I was trying to run around like a chicken with his head cut off and he loves telling me how he kicked my legs from underneath me and sat on me.听 And he tells all his friends how he sat on his officer.

White

You went back out to Kenya, didn鈥檛 you, and you made contact or you came across someone who鈥檇 been involved in your shooting?

Tetley

Yes, I鈥檝e been back to Kenya about five or six times since then.听 The Mau-Mau burnt down Treetops Hotel and I took on the gang that did that and then 20 years later they rebuilt the Treetops Hotel and I took my daughters there to show my kids proper Africa.听 And we walked back to the hotel and I said to one of the guys 鈥 What were you doing during Mau-Mau.听 He said 鈥 I know you Borna [phon.], I鈥檓 an ex-general Chewy, I know you because you shot me in the leg here and it was one of my soldiers that blinded you.听 And yet 20 years later I鈥檓 giving him coffee.

White

If I just take you back to the shooting, Mike, I mean do you remember your feelings at that time, you know, when you realised what had happened, what did you think your life was going to be like?

Tetley

I was actually walking through the bush and somebody threw a grenade at me and it landed at my feet and I wondered whether I should be a brave chap and to pick it up and throw it back at him but I decided to jump.听 And I threw myself flat.听 I then picked up 鈥 stood up and while I was standing up I got the bullet through and I can鈥檛 remember more except next thing I was on the floor and then as I stood up again, I bent forward to pick my gun up, and that鈥檚 when everything went black.

White

So, when you were thinking what on earth am I going to do, why physiotherapy, who steered you in the right direction as it were?

Tetley

Probably St Dunstan鈥檚, they suggested, physio seemed to be the right thing, something practical.听 For the first year I was in limbo until St Dunstan鈥檚 put me down for the course and I give the Chartered Society of Physiotherapy full marks to train blind people.

White

Can I just bring you back to your training days, when you were first training, I mean what was that like?

Tetley

I found it quite difficult because I didn鈥檛 know braille and I was jolly lucky because the people at Treetops Hotel, that we mentioned earlier, they heard I鈥檇 been blinded and they collected a sum of money and they brought me a Grundig tape recorder and that was wonderful because three physios that had just finished training as physios came to read to me and one of the physios that came to read to me turned out later to be my wife.

White

And so, this was to get all the text books because you hadn鈥檛 learnt braille at that point?

Tetley

Yes, so she used to read to me.

White

How difficult was it getting a job, Mike?

Tetley

Quite difficult.听 I applied for one down in Kent and I went for an interview, they said they鈥檇 contact me but they never did.听 And then I went to the Luton and Dunstable Hospital, where somebody had just left and he鈥檇 been blind.听 The lady there was very kind and offered me the job.听 And then I worked in the Luton and Dunstable Hospital for six years and then I come into St Albans and start a private practice here in 鈥76.听 It鈥檚 been financially a most rewarding job and it鈥檚 given me adventure and I鈥檝e been all over the world sorting out some problems.

White

One of your points, when you contacted the programme, was what an exciting varied life physiotherapy had given you.听 I鈥檓 just intrigued how all this travelling adventure came about.听 I mean, you know, I know a lot of physios but not many been up Everest, gone to the South Seas, gone to the Amazon.听 How does that come about?

Tetley

You鈥檙e really reliable on your friends and a chap called Reg Denney was very kind to me.听 He鈥檚 a former Metropolitan policeman and he guided me up Everest to above base camp Everest, place called Kalapathar.听 And it was with him I went to the South Sea islands.听 I generated enough money to pay for these trips and then collected the information I wanted.听 I gave a talk at a world conference of physiotherapy in Tel Aviv and showed some of the slides that I鈥檇 taken abroad.

White

And Everest, what took you up Everest?

Tetley

Well again in Kenya there were three chaps 鈥 Shipton, Tilman and Winharris 鈥 these all climbed Mount Everest in 1930 and 鈥33 and they were almost my next-door neighbours and I just thought Everest was a hill that everybody went up, if you got a chance.

White

Wasn鈥檛 one of your exploits to take a really long walk, I think you walked from Luton to somewhere?

Tetley

My first dog was a fully trained sheepdog before he was a guide dog, he was chucked out from being a sheepdog because he chased birds and I wanted to see how good he was.听 And he walked me, by himself, from Luton to Marble Arch 鈥 that鈥檚 33 miles.

White

But how did you plan this walk?

Tetley

I chose a Roman road which was straight.听 The A5鈥檚 straight, so that wasn鈥檛 very difficult.

White

And when was that, Mike, when was that walk?

Tetley

About 鈥65.

White

Would you fancy doing it now?

Tetley

No.

White

You鈥檙e 90 at your next birthday and you鈥檙e still working, that was one of the things that fascinated us.听 Why are you still working at nearly 90?

Tetley

Well, in a sense, I鈥檓 looking after myself.听 As my wife died about 12 years ago if I was here alone, nobody to talk to, at least if patients come through the door, I鈥檝e got somebody to talk to.听 And I don鈥檛 know about you, but I find it quite difficult to get money out of a hole in the wall and when I鈥檝e got patients coming in, I take money off them 鈥 cash 鈥 and so I don鈥檛 have to go into the hole in the wall.听 That鈥檚 a big point.

White

What surprises your patients most, the fact that you鈥檙e blind or the fact that you鈥檙e nearly 90?

Tetley

I don鈥檛 know.听 I tell them I keep myself fit, I mean one of the things I do every morning, I鈥檝e done it this morning already, I lie on the floor and put my toes right my head and touch the carpet above my head, only do that three times.听 It takes every joint through full range movement.听 And if you go down to the full squat position, as if you鈥檙e defecating in a bush, that resets your pelvis.听 What else have you got to do?听 You take in every joint in a full range movement and I can still do that.听 I say 鈥 What鈥檚 wrong with you, can鈥檛 you do it?

White

Do you think that it is finished as far as career for blind people?

Tetley

I jolly well hope not.听 I can鈥檛 see any reason why physios can鈥檛 be trained and have a full life 鈥 financially rewarding and a rich life.听 If you enjoy meeting people, I can鈥檛 see any reason why you shouldn鈥檛 be a successful physiotherapist.

White

I just wonder what you feel you learnt from your experience that you鈥檇 pass on to someone suddenly confronted with blindness now?

Tetley

Well the computer鈥檚 made a big difference.听 Physio gave me a decent job.听 Guide dogs to get me around.听 And the talking newspaper 鈥 talking books.听 With all the things to help us 鈥 computers and talking ovens 鈥 none of those things existed when I was first blinded.听 Follow your instincts.听 If you think you can do it have a crack at it.

White

Mike Tetley.听


And anyone who may be thinking Mike is past it I鈥檇 respectfully refer them to the three burglars he disturbed in his home, just the other day 鈥 two ran away, the third he scared off with a rounders bat.

That鈥檚 it for today.听 You can leave messages with your comments on 0161 8361338.听 You can email intouch@bbc.co.uk or you can go to our website, that鈥檚 bbc.co.uk/intouch where you can also download tonight鈥檚 and many other previous editions of the programme and find a link for Fight for Sight.听

That鈥檚 it.听 From me, Peter White, producer Mike Young this week, and the team, goodbye.

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  • Tue 7 Jan 2020 20:40

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