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IN TOUCH 鈥� Archery and Mountaineering

TX:听 02.04.2019听 2040-2100

PRESENTER:听 听PETER WHITE

PRODUCER:听 听LEE KUMUTAT

听

White
Good evening.听 There鈥檚 a very active feel to tonight鈥檚 programme.听 The visually impaired mountaineers who鈥檒l be celebrating the life of this programme鈥檚 founding presenter 鈥� David Scott-Blackhall.听 And how archery helped a man obsessed with competitive sport to come to terms with the loss of his sight.

But first, Retina UK wants your help.听 Established in 1976 they research a whole range of inherited eye conditions which are often known as Retinitis Pigmentosa.听 They include Usher鈥檚 Syndrome, which affects hearing as well as sight; Age Related Macular Disease and many more.听 But now Retina UK has launched a survey to find out more about the lives and views of the people who actually have these conditions.听

Tina Houlihan is Retina UK鈥檚 Chief Executive and she鈥檚 with us.听 Tina, given the organisation鈥檚 been going over 40 years why this survey now?

Houlihan
Well the charity has previously been run by volunteers, especially when it was started in 1976, we鈥檙e now growing, we have more exciting science on the horizon and anecdotally we鈥檝e always known what our community wants 鈥� we鈥檝e always listened, we鈥檝e always been driven by our community but now it鈥檚 time to turn that anecdotal information into quantitative, qualitative data that we can really use to move forward.

White
So, what exactly do you want to know, what kind of things?

Houlihan
What we can do better?听 What are their views, what are their aspirations?听 What鈥檚 their experience been like in all sorts of different arenas from when they got their diagnosis in clinic, all the way through their working lives?听 So, we know what help, support we can put out there and what research we should be investing in on their behalf.

White
So, I mean normally if people do this kind of thing it means, bluntly, they think there are things they aren鈥檛 doing very well.听 So, do you think there are things you鈥檙e getting wrong?

Houlihan
I don鈥檛 think wrong is probably the right terminology that I would use but we鈥檙e a small organisation, we鈥檝e been built organically by the inherited retinal sight loss community and we recognise that we never have the whole picture, there鈥檚 always room for improvement and development.听 For example, a diagnosis is a very, very difficult time and how we, as an organisation, can respond to help and support people at the correct time is a really important thing for us to know.

White
Now as you said, yourself, there鈥檚 a great deal of work going on now about, for example, editing genetic makeup to arrest sight loss, even to restore some vision.听 How do we manage people鈥檚 hopes with reasonable expectations?

Houlihan
Well it鈥檚 a big subject, isn鈥檛 it, and I think collectively, and I include media, I include the NHS pathways, all of us together have a real responsibility to achieve that balance between hope and realism.听 So, in the inherited retinal dystrophy community, for example, research started 45 years ago odd, and they didn鈥檛 know the size and the complexity of the challenge.听 So, it鈥檚 been said that a treatment would be around in five to 10 years, and as we鈥檝e seen it takes a massive amount longer.听 So, for example, there is a new drug called Luxturna, which has been in the press heavily and has recently been accepted by the European Board for that sort of decision making and that鈥檚 taken 20 years to go from proof of concept to this point.

White
And just for those who don鈥檛 know, what will that actually treat?

Houlihan
Okay, so Luxturna is a genetic therapy for LCA which is Leber congenital amaurosis.听 And what that treatment does is it actually halts and restores some vision.

White
We have seen some very dramatic film about the kind of operations which are taking place, there are regular things on TV and reports in the newspapers.听 What actually do you say to people who clearly 鈥� a lot of people if they see something like this they want to know is 鈥� when鈥檚 it going to happen and when it going to happen to me and am I going to live long enough to see it?

Houlihan
Yeah, but these bold sensationalist headlines are really unhelpful because creating real 鈥� in the first instance 鈥� really false hope and then that鈥檚 followed by total cynicism.听 So, even when there is hope the community, as a whole, doesn鈥檛 believe that.听 So, what we believe in is actually giving realistic information.听 So, for instance, with genetic therapy, which is a lot of very exciting activity at the moment and really promising tests, we鈥檝e got 60 live clinical trials around the world at the moment, so very exciting times but within reason.听 So, there鈥檚 three main challenges 鈥� we have to find the genes, so 40% of our community still doesn鈥檛 have a genetic diagnosis and we鈥檙e finding new genetic mutations every year, shall we say鈥�

White
How many have you found?

Houlihan
Two hundred and sixty.

White
So, it鈥檚 a hugely complex area?

Houlihan
Yeah, the complex is almost infinite.听 So, what we need to do is then fix that gene so we can edit it, we can stick on a plaster, we can take out the mutation to see if that will work.听 And the third challenge is the delivery system.听 So, this is called a vector and this is how you deliver the genetic therapy to the correct part of the eye.听 And the analogy we use is the way that you would transport a pea is very different from how you would transport a cruise ship and this is the best analogy to show the challenge that our great scientists are trying to cover at the moment.听 So, it is going to take a while.听 There鈥檚 a lot of genes to find and there鈥檚 a lot of different promising sciences in the making but it takes time.

White
Tina Houlihan from Retina UK thank you very much indeed.

And maybe this next story is the kind of thing Tina and her team would like to hear about.听 When Nick Thomas, from west Wales started to lose his sight, around 20 years ago, he also thought he was going to lose one of his main obsessions in life 鈥� taking part in sport.听 In fact, he feels that鈥檚 proved his salvation.听 He鈥檚 participated at an elite level in partially sighted football and athletics and when, at the age of 40, he was forced to hang up his football boots he found he still needed his sporting fix.听

Our reporter, Tom Walker, has been to meet Nick as he was setting up his tripod and other equipment at the Red Dragon Archers Club in Caernarvon.

Actuality
Right, what height do you need the tripod at Nick?

If we start it off on the 64 inches and then we can adjust it then, once we鈥檝e fired a few arrows down.

Thomas
I鈥檝e been quite lucky since being diagnosed with my condition that my main way of coping with everything was just to participate in sport.听 So, I started off doing athletics 鈥� track and field 鈥� after stopping doing athletics I went back to my first love in a way, which was football.听 I played in the British Blind League with Loughborough University and was seen by the England partially sighted team manager at the time there and was asked to come and train with the England squad.听 And I played for 10 years as part of the England partially sighted squad, making Vice-Captain as well.

Walker
So, sport really does course through your veins?

Thomas
It does yeah, I鈥檝e always, since being a kid, I鈥檝e always been a really sporty person but as I got older, I started to kind of crave the competitive side of sport.

Walker
While it鈥檚 safe then let鈥檚 walk down the range.听 I鈥檓 looking at the target here and I can see sort of one, two, three, four rings maybe or three rings and a yellow inner circle.

Thomas
Yeah, yeah, so what it basically is right at the centre of the target is a gold, so that it鈥檚 scored from 10 all the way down to one.听 So, we鈥檝e got gold, which will be a 10 or a nine, the red which will be an eight or a seven, blue will be a six and a five, the black will be a four and a three and the white one will be a two or a one.听 And that鈥檚 how you score archery, wherever your arrow lands you get that score.

Walker
How did you get into archery?

Thomas
I had to retire from football due to having two dodgy knees after playing 10 years on hard surfaces and having a couple of operations.听 For a period of about two or three years I actually had nothing, I was doing no sport at all and I think at that period in my life things started to affect me because I didn鈥檛 have a focus in my life to distract me away from my sight problems.听 So, I started to get a little bit low and suffering a little bit with depression and stuff.听 So, after speaking to my family and my wife, especially, we kind of pinpointed that I needed to find another sport and another focus.

Right, so line captain鈥檚 called shoot now, so we鈥檙e ready to go.听 So, I鈥檓 just going to get my feet into the foot locators, make sure I鈥檓 in the right position, take an arrow, put it in the bow, I鈥檓 going to turn my head towards the target, lift the bow, I鈥檓 going to pull back.

Actuality
Two o鈥檆lock in a red.

Alright, that鈥檚 not bad.

Walker
What does the spotter actually do, explain in this case her role?

Thomas
Yeah, so the spotter I have with me most occasions is my wife Marie.听 She鈥檚 really good, she鈥檚 really tolerant, you know, she鈥檒l help me set up my foot locators and the tactile sight which is mounted on top of the tripod.听 So, she will use her sight to line them up with the target, which would be in this case tonight 18 metres away.听 So, I will rely on her to set all this up and then what I鈥檒l do then is I step in to my equipment, into the tactile sights and then it鈥檚 all up to me then to adjust everything while I鈥檓 shooting because while I鈥檓 shooting the spotter is only allowed to call where the arrow lands and not allowed to make any adjustment to my equipment at all.

Walker
So, the spotter actually isn鈥檛 influencing where you fire the arrow to?

Thomas
No, no not at all, all they can do is they use a clockface system and the colour on the target.听 So, I know what my target looks like, I know where every colour is, so then my spotter will call where the arrow lands.听 So, for example, if she was to call a six o鈥檆lock red, so I know that six o鈥檆lock means I鈥檓 low on the gold but red is the next colour out from yellow, so I know I鈥檓 not too far away from it, so then I can reach forward, I can raise my tripod a little bit and then I鈥檒l fire another arrow and then hopefully I鈥檒l be shooting in the gold, which is the ultimate aim of archery.

Yeah, I鈥檝e got quite a busy year ahead.听 In June, I have the big competition, the one that I鈥檓 really looking forward to and gearing all my training towards, which is the Para Archery World Championships, which will be held in Holland.

Walker
And what are your prospects for the World Championships?

Thomas
My main aim for the World Championships is to medal, of any colour would be great.

Walker
Without sport what do you think might have happened to your mental health?

Thomas
Being completely honest, after retiring from football, I did find myself spiralling a little bit out of control, suffering with being low and starting to suffer with depression as well, it was having a major effect on myself and my family, my two little kids were also seeing their dad being quite lethargic, being really low, being moody and grumpy, as they would call it, at times.听 So, you know, finding a sport again as a focus has just kind of 鈥� it鈥檚 put everything again behind me and it鈥檚 given me a focus and I鈥檓 back to being my usual chirpy, happy self.

White
Nick Thomas talking to Tom Walker.

And it was another Tom 鈥� Tom Panek 鈥� whose love of sport and independence led him to begin running not with sighted guides but with guide dogs.听 Some of you, such as Jan Winepal [phon.] were charmed by the item but guide dog owners Gail and Bill Guest were not.听 They say: 鈥淲e can鈥檛 imagine how it鈥檚 possible to concentrate on the route while running and also we don鈥檛 think it鈥檚 fair on the dogs.听 We very much hope our Guide Dog Association never allow it here.鈥�

Charlotte Cazner [phon.], from the Campaign for Responsible Dog Ownership, in a long and detailed email went further.听 She said, the only risks mentioned to the dogs, with which Mr Panek ran, were their existing fitness levels and weight and damage to their pads.听 She goes on:听 Although those factors are important, they鈥檙e far outweighed by considerations of breed which make Labradors totally unsuited as competitive running partners.听 She says, 鈥淚鈥檇 like to have heard what post-training and post-race care the dogs received, considering the amount of stress placed on their joints and muscles.鈥�

Now it鈥檚 50 years since the Milton Mountaineers were formed, so-called in honour of the blind poet.听 It all began when the first presenter of In Touch, David Scott-Blackhall, broadcast an item about a group of blind mountaineers in Tanzania, who鈥檇 just climbed, with some sighted assistance, Kilimanjaro.听

Well David went on to form a group of climbers, they first went up Ben Nevis and in a few weeks鈥� time another group will be climbing Snowdon to mark David鈥檚 life.听

David Carrington-Porter is the current organiser of the Milton Mountaineers.听 So, this climb became an annual event really didn鈥檛 it, David?

Carrington-Porter
That鈥檚 correct, yes.听 The reason we鈥檙e climbing Snowdon this year is because David鈥檚 ashes are scattered on the summit of Snowdon and traditionally, over the years, we have visited each country of the UK in a cycle.听 So, we happen to be due to go to Wales this year, so it all nicely fitted.

White
So, give us some of the other mountains that you鈥檝e climbed and what have been the most difficult?

Carrington-Porter
We鈥檝e done all the highest in each country, so Ben Nevis, Snowdon, Scarfell Pike in England, Slieve Donard in Northern Ireland and Carrauntoohil in the Republic of Ireland.听 Probably the most difficult actually was the first trip I organised in 2006 which was Carrauntoohil, I think it鈥檚 about 4,000 feet high and I certainly remember crawling up O鈥橲hea鈥檚 Gully on hands and knees and being bitten to death by midges.听 So, that was quite difficult.听 And actually Ann, the previous organiser of Milton Mountaineers and the daughter of David Scott-Blackhall, was carried down some of the mountain by our mountain guides.听 So, that was quite an eventful climb.

White
Now this whole occasion, in a way, is to honour and mark David鈥檚 contribution and I think actually the top of Snowdon is a particularly significant site isn鈥檛 it?

Carrington-Porter
It鈥檚 often used obviously in the Three Peaks Challenge that a lot of charities do but the fact that David鈥檚 ashes are scattered there and his daughter, who is going to be 83 this year, is hoping either to climb the mountain on foot or to go up on the Snowdon mountain railway by train and to read one of David鈥檚 poems at the top because as you probably know, Peter, he was a bit of a poet as well.

White
Why do you think this caught on to such a huge extent?

Carrington-Porter
It鈥檚 a bit of a metaphor in a way, isn鈥檛 it, if you can climb a mountain you can conquer most things in your life.听 I鈥檝e got quite a nice little quote here, that you might like to hear Peter, that was written in the Himalayan Times after our trek to Everest base camp in 2011, which was to celebrate my 60th birthday and to raise funds for Milton Mountaineers.听 And in the Himalayan Times newspaper, when they interviewed us, it said:听 You are not challenged until and unless you don鈥檛 want to be.听 Which means that there is nothing in the world that you yearn to achieve but cannot regardless of the problems.

White
Tell me David, are there any of the original Milton Mountaineers going on this time?

Carrington-Porter
Yes, I was keen to invite somebody along, so fortunately Edmund MacKenzie, who lives way up in the north of Scotland, he鈥檚 got about a 12-hour train journey down to meet us in Wales and I don鈥檛 think he鈥檒l be climbing because he鈥檚 well into his 70s now but he鈥檚 hoping to go up on the train to be with us at the summit.

White
And just from your experience and what people have said to you, what do you think are the key factors for visually impaired climbers?

Carrington-Porter
It鈥檚 obviously important to have good sighted help, we鈥檙e fortunate in that half our members are sighted people who have come along and helped on a lot of the trips.听 We also get in touch with local groups in an area, if we need extra sighted guides and we recruit qualified leaders to take us.听 What we get out of it is 鈥� it鈥檚 the sense of achievement, it鈥檚 being out in the outdoors, it鈥檚 the physical exertion.

White
And in terms of technique, I mean when you鈥檙e climbing there must be things which perhaps you would do as a blind person slightly differently to someone else?

Carrington-Porter
Well yes, obviously, we are linked to our partner, if the path is wide enough you鈥檙e holding their elbow in the usual way that a blind person would be guided.听 A lot of us use trekking poles, the walking sticks, to not only as support if you need it but also to feel where rocks are and tree roots and things like that.听 Obviously, you build up a bit of a rapport with the sighted guides, they are informing you about the terrain ahead, there may be a stream to stride over or stepping stones or whatever.听 They鈥檙e also describing the scenery.

White
Because that鈥檚 the thing, isn鈥檛 it, you鈥檙e often, for example, reaching for something you can鈥檛 see, if you鈥檙e totally blind, even if you can see a little bit, when somebody says there鈥檚 a foothold there, you can see it, but for someone who鈥檚 totally blind you鈥檙e just groping in mid-air.

Carrington-Porter
Well a lot of that would be them describing quickly, in a few words, what the situation is.听 But as I say that鈥檚 where the trekking pole really comes in because, for instance, crossing a stream, my technique is the sighted guide puts my trekking pole onto the stone, I slide my boot down the stick until it contacts the rock.听 So, that鈥檚 my way of doing it.

White
Before you get people too excited, we should make clear though it鈥檚 all booked up for now isn鈥檛 it?

Carrington-Porter
I鈥檓 afraid this year鈥檚 is pretty booked up, we鈥檝e got about 30 people coming.听 I usually allow about 20, 16-20 people on a trip but obviously this is a special, probably about 20 of us who will be climbing.

White
All happening in May.听 David Carrington-Porter thanks very much for joining us.

And I鈥檓 sure David Scott-Blackhall would be delighted to know it鈥檚 still going on.

That鈥檚 it for today.听 Don鈥檛 forget you can now call our dedicated phone line where you can leave messages for us with your views, that number is 0161 8361338.听 You can also email intouch@bbc.co.uk or click on contact us on our website where you can also download tonight鈥檚 and many other editions of the programme and get details of the Retina UK survey.

From me, Peter White, producer Lee Kumutat and the team, goodbye.

听