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IN TOUCH 鈥� The Eye Clinic Liaison Officer; Visually Impaired Netball

TX:听 13.12.2022听 2040-2100

PRESENTER:听 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 BETH HEMMINGS

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White

Good evening.听 Tonight, are there any sports which can鈥檛 be adapted to be played by visually impaired people?

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You鈥檒l probably be aware with the football there鈥檚 a ball called a jangle ball, that鈥檚 obviously got the bell inside it, but that doesn鈥檛 work that well with netball because obviously it needs contact with the floor to hear the bell.

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White

Well, more on the latest attempts to make netball accessible later in the programme.

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But first, you know that your emails and voice messages are very much a big driver of what we cover on In Touch and they鈥檝e been particularly plentiful over the past couple of weeks, not least on Pauline鈥檚 account of the abrupt way she was told she would probably go blind, followed by a second opinion saying this was very unlikely to happen.听 Here鈥檚 just one more of the many messages that we鈥檝e had about this, this one from David Small.

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Small 鈥� email

I was a patient under leading surgeons and consultants.听 After months of laser surgery and injections to repair retinal damage, a leading professor, one day, invited me into her room.

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鈥淗ello David, do sit down.鈥�

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I laid my hand on the back of a chair.

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鈥淭oday we鈥檒l register you blind.听 I need your signature.鈥�

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I said, 鈥淏ut I can鈥檛 see where to put it.鈥澨� Having done that I burst into tears and she said:

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鈥淒avid, don鈥檛 be a cry baby, you鈥檒l get used to it.听 See you next week.鈥�

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It was so cold, so impersonal, it left a psychological effect for years, those few moments.

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White

There are more but why does this still happen?听 We鈥檝e approached the Royal College of Ophthalmologists to put that question to them and to ask about what training eye surgeons get in breaking the news.听 They鈥檝e told us no one is available this week to do this but we will ensure that we get the college on to In Touch in the New Year.

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But Chris McMillan was one of those who asked to hear more about the work of so-called ECLOs or Eye Clinical Liaison Officers.听 One of whom, Pauline鈥檚 hospital told us, they were about to appoint.听 And it so happens that another email, prompted by Pauline鈥檚 story, came from Paula Thomas.听 Now Paula is currently an ECLO at Great Ormond Street Hospital where she works with the parents of children diagnosed with eye problems but was indeed one of the early ECLOs based in Brighton.听 She joins us now.听

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Paula, welcome.听 We鈥檒l come on to your role in a moment but you said in your email that in your working life you鈥檝e been aware of this problem of how people are told what they鈥檙e bound to regard as devastating news.

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Thomas

It shocks me that this happens, that certainly doesn鈥檛 happen with us at Great Ormond Street or at least I hope it doesn鈥檛.听 It鈥檚 not just how you鈥檙e told but I think it鈥檚 your understanding of what all of those words mean and also because of the nature of what鈥檚 happening is you may only hear certain parts of a conversation and not take it all home.听 I think it鈥檚 a combination of all of those things and why it鈥檚 so important to have an eye clinic liaison officer or equivalent because we鈥檙e not all called ECLOs and prior to ECLOs there was other people within a hospital, social services or a local group.

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White

Can I ask you why you think it is, from the ophthalmologist鈥檚 point of view, why do you think it does happen?听 I appreciate it doesn鈥檛 happen every time by any means but what鈥檚 the problem there do you think?

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Thomas

It鈥檚 鈥� to a consultant, to the ophthalmologist, this is what they do day in day out and I think people can get quite glib about that.听 If you鈥檙e repeating very similar things all of the time.听 And you do kind of wonder that to them it鈥檚 just language and not recognising that you鈥檝e got an individual sat in front of you and they may have had no preparation.听 Do the consultants think you know that this is what鈥檚 going to happen, so therefore it鈥檚 not a shock?听 I really don鈥檛 know.

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White

Is it getting any better do you think?

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Thomas

Yeah, I think so and I think knowledge is key.听 So, I think consultants and ophthalmologists have a larger team around them now.听 So, rather than it just being a consultant and a consultant led clinic, you have specialist nurses, you have specialist optoms and orthoptists, the fellows or the family officers or the eye clinic liaison officers.听 And I think they鈥檙e much better about, rather than it being a I鈥檓 the consultant, kind of mentality, it鈥檚 very much I鈥檓 part of a team mentality.听 So, certainly in my last 10 years at GOSH I鈥檝e seen this kind of change and it's very much a team approach, that鈥檚 my experience.

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White

But isn鈥檛 it just a matter of common humanity that you deliver such news gently?听 I mean surely Doc Martin is a gross TV exaggeration isn鈥檛 he, you鈥檇 hope?

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Thomas

Yes.听 You know, is it too many patients in a day?听 They鈥檙e overworked 鈥� one in one out.听 Do people need to slow things down, take a more holistic approach?听 Yes and I think that鈥檚 still true of even with us at Great Ormond Street where we take great care, is that there is always those kind of pressures and I think there has been an improvement.

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White

So, tell us more about the role of the ECLO 鈥� the eye care liaison officer 鈥� what is it that you do exactly?

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Thomas

So, I鈥檓 described in a nutshell, and this is me specifically, because I think ECLOs, depending on where you work and your relationship with a team, has a massive effect, but I鈥檓 described by my consultants that I work with is Paula does everything that is sight related but not clinical and certainly not surgical, you really don鈥檛 want me that side of the curtain.听 So, it can involve absolutely everything.听 It might be sort of the initial contact with the family before they visit us, it could be that I sit in on consultations so I can then after the appointment is that I will go through that appointment with them, if there鈥檚 things that they haven鈥檛 understood I can repeat and go back over.听 It鈥檚 then describing and explaining the process of registering somebody with their visual impairment and what that actually means.听 And then it goes sort of further than that, that you signpost to what鈥檚 relevant for that family because every family鈥檚 going to be different and it鈥檚 age, it鈥檚 diagnosis, it鈥檚 if it鈥檚 hereditary so there鈥檚 already a knowledge within the family, where they live and that changes, so it鈥檚 an ongoing relationship with the family over many, many years.听 They鈥檝e been through their local ophthalmic centre prior to coming to us, so there鈥檚 already some knowledge or some history but it鈥檚 sort of undoing, perhaps, what鈥檚 been said or describing it again.听 And, also, unfortunately, coming to GOSH everyone thinks that we鈥檙e going to give them a different diagnosis or that there鈥檚 something we can do, so it鈥檚 preparing, it鈥檚 expectations and managing those expectations.

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White

And, presumably, part of the problem is that people, perhaps, don鈥檛 understand the degrees of vision loss that you can actually have and maybe even the term blind is kind of tossed about rather readily, even by eye surgeons.

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Thomas

Yeah and it鈥檚 a shift in language. 听I mean over just the time that I鈥檝e worked within the sort of sight loss sector, that鈥檚 changed.听 So, you know, blind and partially sighted to sight impaired and severely sight impaired and it鈥檚 explaining what that means.听 And this is why I do my job, I suppose, it is going through sort of what that means and when it happens to you at what point of your life, as well.

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White

And I guess the problem is ECLOs aren鈥檛 everywhere, are they?听 Clearly Pauline鈥檚 hospital hasn鈥檛 got one yet.

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Thomas

No and even if you have or a hospital has got them, it鈥檚 where they are within that system and how consultants and patients contact that ECLO.听 So, even if they haven鈥檛 got an ECLO, they may have a local charity that鈥檚 present or they might, you know, through PALS or similar or it鈥檚 a specialist nursing team but that鈥檚 only good if the consultants then can tell the patients that this exists and if they don鈥檛 鈥� I mean you can walk in and out of there and never come across them.

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White

And what we haven鈥檛 said yet is that you, yourself, are visually impaired and when your sight deteriorated, when you were an adult, you really struggled with news that must have been a possibility that you鈥檇 live with for most of your life?

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Thomas

Yes, so, when I was diagnosed, paediatric or very specific paediatric ophthalmic care really didn鈥檛 exist and I鈥檓 that old that it was before internet and being able to find out information from my parent鈥檚 point of view, the system was quite different.听 My consultant 鈥� and we鈥檇 never do this now 鈥� told my parents that I鈥檇 have no vision at all by the time I was in my early teens.听 And as time went on, I thought I鈥檇 cheated the system, yes it had changed but it hadn鈥檛 gone.听 And I went to a specialist school and at the time of losing significant vision, I worked for a large organisation that specifically supported people with sight loss.听 So, I was surrounded by the right people, I鈥檇 been to school with children with a visual impairment 鈥� all the preparation you could possibly do because you just can鈥檛 imagine what it鈥檚 going to be like until it happens.

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White

Paula Thomas, thank you very much for getting in touch with us in the first place and for coming on, thank you.

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And while we鈥檙e on the topic of getting answers to your emails, we have had many more on the difficulties blind people are experiencing in accessing 麻豆约拍 Sounds.听 There are moves underway to address this problem, we promise that we鈥檒l continue to seek answers in the New Year.

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Now regular In Touch listeners will know that there are very few sports which haven鈥檛 been adapted in some way to be played by partially sighted and totally blind people 鈥� adaptations of games like football, cricket are pretty well known.听 Only in recent months we鈥檝e featured a version of tennis and, of course, the Paralympics showcase visually impaired people in a whole range of events.听 But netball 鈥� I don鈥檛 think in all the years I鈥檝e been presenting In Touch we鈥檝e ever featured it until today. 听But it can be adapted, is being adapted and there is a festival of netball due to take place on Thursday week, that鈥檚 the 22nd, in London where potential players of 12 and upwards are invited to come along.听 It鈥檚 at the Copperbox Arena in London鈥檚 Olympic Park.听 It鈥檚 organised in conjunction with Metro Blind Sport and joining me is Sam Bird, who is Chief Executive of London Pulse which has a professional netball team, which plays in the Netball Superleague.

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Sam Bird, first of all, I must be honest I鈥檓 quite a sports nut but I really am pretty ignorant when it comes to netball.听 What are the challenges which it poses to be played by visually impaired people?

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Bird

Well, it鈥檚 a great game, I鈥檓 biased because I鈥檝e been playing the game ever since I was a child and still coach it now but it鈥檚 a great team game and it鈥檚 fantastic for people of all shapes and sizes and fitness levels.听 But it is a hard game to learn with a visual impairment because the ball can move at speed and there are seven players on each side and the ball moves from the centre of the court, down the court to score a goal. A netball goal is a bit like a basket goal but without the backboard, so it requires really accurate shooting.听 And so, it鈥檚 been a fantastic journey for us to look at adapting the game for visually impaired athletes and us learning how to keep the game of netball authentic but to enable visually impaired athletes to play.

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White

Are we talking mainly about people with some sight or is there a possibility 鈥� because people start off by thinking oh totally blind people won鈥檛 be able to play that and then somebody comes up with adaptations to do it 鈥� I mean is that something you鈥檙e looking at?

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Bird

It is something we鈥檇 like to work towards.听 It鈥檚 a fairly new project, we鈥檝e started to work with Metro Blind Sport just before the pandemic and then sort of got through that, used that time to train some of our staff how to teach the game.听 And then coming out of the pandemic we鈥檝e run a series of four lots of 10 sessions for visually impaired adult players.听 And they鈥檝e grown in confidence as the sessions have gone on and I鈥檝e been really impressed in terms of how quickly they鈥檝e developed their skills.听 And I wouldn鈥檛 rule this out but I would say that, at the moment, we would like to become better and keep developing the game with our visually impaired athletes鈥� feedback to make the game even better before we take that step.听 But, yes, I would hope so in the long term.

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White

So, what are the differences people who know their netball would notice in a game adapted for visually impaired people?

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Bird

Well, it looks, I鈥檓 pleased to say, looks and feels very similar.听 So, there鈥檚 still the same number of players, so seven a side.听 The passing 鈥� there are different passing styles.听 So, so far our visually impaired athletes have been more comfortable with a sort of ball to their body, so that if in the event that they don鈥檛 quite handle the ball that well with their hands they can push the ball with their body, so that the passing tends to be at the body rather than higher up over a person鈥檚 head, that you might get in a sighted netball match.听 But the passing and the rules are the same.听 The shooting is still the same and shooting鈥檚 great fun and it鈥檚 always the best part of the training session when everyone gets a chance to put up shots.听 And it鈥檚 amazing just sort of by getting your range that the athletes, VI athletes, become very accurate on their shooting.听 So, it looks and feels very similar鈥�

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White

Is the ball the same?

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Bird

You鈥檒l probably be aware with the football there鈥檚 a ball called a jangle ball, that鈥檚 obviously got a bell inside it, but that doesn鈥檛 work that well with netball because, obviously, it needs contact with the floor to hear the bell.听 The feedback we got from our athletes was it was better just to have a really vivid coloured netball.听 Our club colours are pink and black, so we鈥檝e brought in luminous pink netballs and the players prefer just having a really strong colour ball that they can pick up the colour rather than the bell.听 The bell works if you鈥檙e doing a bounce pass or something, for example, because you obviously hear it but it鈥檚 not as useful as you might think if you鈥檙e using a ball with a bell for football.

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White

If it鈥檚 not been played that much so far by visually impaired people who are you actually expecting to come along to the festival?

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Bird

Well, so far, we鈥檝e had some amazing adults that often take part in other visually impaired blind sports, so we鈥檝e got some representatives that actually are representing Great Britain in Goal Ball at the moment, which is amazing and we鈥檝e got really proficient tennis players and people who are confident to try lots of sports.听 But what this festival is trying to achieve is to attract some younger children to come and have a go because we鈥檇 love to try to start developing a visually impaired sort of netball for boys and girls of age 12 and above, just to bring them into the netball family really and share our fabulous game with them as well.听 We鈥檝e connected with a few schools in London and we鈥檙e hoping that people have the confidence to come and give it a go.

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White

You say girls and boys, people tend to think of this as a girl鈥檚 and women鈥檚 game, don鈥檛 they?

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Bird

They do but there鈥檚 been a lot of changes at England Netball, recently, there鈥檚 now an England鈥檚 men鈥檚 netball team as well and the gross of the men鈥檚 game is definitely on the rise.听 And we鈥檝e found, through our research, that actually primary school boys are very good at netball and often just give up because there鈥檚 no sort of pathway for them to go.听 So, that鈥檚 now being set in place as well, to make netball as inclusive as possible.

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White

The Paralympics has, in recent decades, been the way to get sport for blind and partially sighted people a higher profile, could that happen with netball do you think?

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Bird

Well, I鈥檓 a CEO that likes to dream big so, I would hope so.听 We are the first club in the world to develop visually impaired netball and I鈥檓 very proud of that and it fits very much with our ideology and we just want to see if it鈥檚 interesting, if people enjoy it then we鈥檒l work really hard to keep developing it.听 And I鈥檇 love nothing more than to see it in the Paralympics.

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White

And if people are hearing this for the first time, because I know you鈥檝e got some people interested already, how can people get involved in the festival, is there still time and what do they have to do?

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Bird

Yes, so it鈥檚 free to come.听 If they have a look on our website there鈥檚 a button there to select free place to come to the festival.听 If they鈥檇 rather call then there鈥檚 a phoneline to call and we鈥檝e got staff and players that will be there to sort of make sure we look after any VI athletes and helpers, supporters, parents, anyone that wants to come along just come and join in and enjoy the afternoon really.

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White

Sam Bird, thank you very much indeed.听 And congratulations to your three dogs lying at your feet for remaining silent throughout this interview.

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Bird

There鈥檚 a first time for everything.

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White

Yeah, thank you very much indeed.

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And that鈥檚 it for today.听 Do join us for our pre-Christmas programme next week, plenty of fun to be had, including an accessible visit to Santa鈥檚 grotto, a review of the latest video games accessible to visually impaired players and a visit from stand-up TV and radio superstar Chris McCausland.听 Looking forward to that very much.

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From me, Peter White, producer Beth Hemmings and studio manager, Simon Highfield, goodbye.

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