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IN TOUCH 鈥� Access to health records and accessible fun

TX:听 06.08.2019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 TOM WALKER

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White

Good evening.听 Tonight, why blind patients still struggle to keep their health data confidential.听 And the festival which shows what鈥檚 possible for visually impaired children, which is pretty well anything.

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Clip

I鈥檓 running with the ball towards the defender.听 I鈥檓 waiting for a clap from my 鈥� from me mate.听 She鈥檚 now clapped, so I鈥檓 going to throw the ball back鈥�

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White

More from a weekend of fun in Hereford later in the programme.

听

And something else that鈥檚 possible 鈥� getting your ideas discussed on the programme.听 Just a few days ago Christina Keiller got in touch with an issue she thought needed to be aired.听 Today she鈥檚 our guest on the programme, joining us from Brighton.听 In a nutshell, Christina, what do you think we鈥檝e been missing?

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Keiller

Well I have a severe visual impairment and a hearing condition on top of that and I鈥檓 interested in how other people experience being affected both by visual and hearing issues and how we can manage this combination well.

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White

Well you couldn鈥檛 have been more succinct Christina; we鈥檒l hear more from you about that in a few moments.

听

But first, three years ago this week a standard was introduced by NHS England, which promised visually impaired people the right to receive information, such as test results, appointments, etc., in their preferred formats.听 It followed constant complaints 鈥� many of them to this programme 鈥� saying that despite repeated requests to have information in a form they could read 鈥� braille, large print, text, emails 鈥� there are plenty of options, they continued to get print letters totally inaccessible to them.听 And the trouble is, despite that new standard, it鈥檚 still happening.听 Well now Michael Tupper, from Clitheroe, has had enough and with help from the RNIB he鈥檚 making a stand.

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Tupper

For a number of years now, since the accessible information came into force on 1st August 2016, I have been asking East Lancs Hospital Trust to send my correspondence to me in a format which I require, which is large print.听 Every time I get a letter from them it usually turns up in standard print, occasionally it will come up with a large print version but on the majority of occasions it鈥檚 standard print.

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White

What are the implications of this, as far as you鈥檙e concerned?听 I mean, for example, how feasible would it be to get someone to read these letters to you?

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Tupper

That鈥檚 fair enough, I can understand that I could get people to read them to me but some of the letters contain very delicate information.听 I have urology problems, bowel problems.听 If I have to start passing them around for people to read them, that鈥檚 giving sort of information to people about my personal bits and pieces and I鈥檓 not in the position or don鈥檛 wish to do that with anybody.听 I can just about read the letters with a magnifier but it depends what style of print it鈥檚 in to start of with.听 If it was in 鈥� if it was all in Aerial 14 it wouldn鈥檛 probably be quite so bad but most of it comes in very, very thin print.听 And when there鈥檚 telephone numbers or times and dates to read if there鈥檚 a six or a nine or a five or an eight I have a problem distinguishing those numbers particularly and I could get the dates wrong, it would mean that I could miss an appointment and the pressures in my eyes could increase.

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White

And that鈥檚 part of the irony of this, that some of these communications have come from the eye department.

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Tupper

The majority of them have come from the ophthalmology department, you鈥檙e perfectly correct, which, as you say, is quite ironic.听 I mean of all departments you would expect to get it right it would be them.听 And the hospital trust actually did the pilot scheme for the accessible information standard to come in prior to it coming in and I worked with the diversity and equality manager there to set the whole thing up.听 And one of their urology receptionists managed to find a way to do it, so I thought the problem was solved but it obviously hasn鈥檛 been solved because I鈥檓 still getting them in standard print.

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White

What does the hospital trust say when you put this to them?

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Tupper

Every time I mention it, they usually turn around and say yes, we鈥檒l try and do our best to send it out to you in large print, as you鈥檝e requested.

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White

Let me bring in Sam Fothergill, who is the RNIB鈥檚 legal advisor.听 First of all, in this case what are Michael鈥檚 and other blind people鈥檚 rights precisely?

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Fothergill

Under the Equality Act you have a right to receive your information in an accessible format.听 That鈥檚 been since 2010.

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White

So, in a way, was the accessible information standard necessary, if that was the law?

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Fothergill

Well I think it was necessary because we found that the majority of NHS organisations weren鈥檛 complying and so we thought that by getting the accessible information standard that would almost force them into it.

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White

So, that rule of accessibility, does that mean that a visually impaired patient can have the information in any form they want?听 I mean some solutions are easier than others for an organisation to comply with.

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Fothergill

Well the NHS bodies only have to do what鈥檚 reasonable but the majority of people will want pretty standard format, so braille, large print, email, audio.

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White

So, in terms of enlarging print, as Michael wants, can you see a problem from that point of view?

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Fothergill

Not at all, no.听 It鈥檚 just the trusts not having the processes in place to actually do it, I think is what the problem is.

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White

What has the East Lancashire Hospitals Trust said to you about this, because I think the RNIB 鈥� you have approached them about it?

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Fothergill

Yeah, we obviously wrote to them before we issued proceedings but I think that they didn鈥檛 really acknowledge that they had a problem.听 They told us that the files were all marked up and therefore it would happen and obviously it clearly didn鈥檛 and after we got that letter from them saying everything was fine, Mike then received a series of inaccessible letters and so we felt we had no choice but to issue proceedings to kind of force the issue and to make sure that something gets done about it.

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White

So, the information standard, the accessible information standard clearly hasn鈥檛 been working as far as Mike鈥檚 concerned but it鈥檚 been in operation for three years, is it working generally do you think?

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Fothergill

I think the answer is no.听 We get a lot of complaints about accessible health information, I鈥檇 say it鈥檚 probably the largest category of complaint that we receive within our department, which is the policy and campaigns team.

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White

Well we naturally invited the East Lancs NHS Hospital Trust to appear on the programme.听 They weren鈥檛 able to put anyone up.听 But they did say it鈥檚 their aim to implement the accessible information standard but on some occasions, and I quote:听 鈥淥ur administrative processes haven鈥檛 worked as they should,鈥� they say, 鈥渨e鈥檇 like to offer an apology to Mr Tupper and any other of our patients who may have suffered inconvenience through receiving information in a form not suitable for their needs鈥�.听 We鈥檝e talked since to the RNIB and Michael Tupper, they say this doesn鈥檛 go far enough.

听

Well our guest, Christina Keiller was listening to that.听 Your issue, that you want to raise with us, is health related, so, before we get to it what鈥檚 been your experience of getting accessible information from the NHS?

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Keiller

Well I have to say that I have requested letters in large print from my local university hospital and I do get large print letters, so I鈥檓 very happy with that.

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White

Which proves it can be done, I guess.听 Christina, just explain a bit more, first of all, about your own circumstances because you weren鈥檛 actually born here were you?

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Keiller

No, I am Danish.

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White

Right, and so you came over here.听 And this problem that you鈥檙e raising with us, of dual disability, how did it come about?

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Keiller

Well, I came over here about 20 years ago actually, just this week, and about 17 years ago I went to a concert where there was some dancing and someone was really nice and suggested I should sit at the front, which was great, the only thing was that I was sitting next to the speaker and unfortunately it resulted in 鈥� I鈥檝e now got a hearing condition that鈥檚 called hyperacusis, so I鈥檓 very sensitive to noise.

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White

And that鈥檚 the point, isn鈥檛 it, it鈥檚 not actually so much about hearing levels that you鈥檝e lost, as about sensitivity?

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Keiller

Yes.

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White

So, what does that result in, what are the effects of that?

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Keiller

Basically, it means that any loud noises are difficult for me to tolerate, so any loud noises like in restaurants or from traffic or music is an issue for me now.

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White

I mean do you have to avoid those places; how do you deal with that?

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Keiller

Well I鈥檝e found my own way of dealing with it, it鈥檚 a very rare disease, or very rare condition鈥�

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White

But the point that you really wanted to make was that this is a dual disability and double disability makes it complicated trying to weave it in with visual impairment.

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Keiller

Absolutely, absolutely, so, it鈥檚 trying to manage a visual impairment and then at the same time trying to manage the hearing impairment.

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White

How much is it about how people react?听 I mean is it that people, in a way, can only see one disability at a time as it were?

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Keiller

Yes, I try to keep it very simple when I try to explain my conditions and try to focus on one rather than focus on both of them and I think some people experience, with age, that they鈥檝e been able to live with their visual impairment and found ways of managing that and then creeping in on top of that can come a hearing impairment.听 I mean mine came very suddenly and I had to adapt to that quite quickly.

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White

We鈥檙e certainly inviting people who鈥檝e had experience of this to get in touch with us, which I think is what you wanted.听 Do stay with us for our last item as well.听

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Most summer fetes and festivals try to lay on entertainment to keep the kids amused but a lot of the activities will be visual 鈥� throwing things, shooting at things 鈥� which tend to exclude blind children who go along with their families.听 Not so LOOKfest.听 The rule there is the absolute reverse, everything from sport to arts to building a den must be accessible.听 Look is an organisation for families with a child with a visual impairment.听 Lucy Edwards went along for us to join in the LOOKfest fun.

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Actuality

One, two, three.

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I am VIP.

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Edwards

Let鈥檚 get festival ready.听 I鈥檓 here at LOOKfest in Hereford, the first summer event for VI families.听 The atmosphere is so great, it鈥檚 lively, there鈥檚 tents pitched up, families ready to spend their weekends here.听 It鈥檚 a brand-new event, I鈥檓 ready to see what it鈥檚 all about and join in.

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Child

I grab a stick.听 I like put it on the鈥�

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Edwards

I鈥檝e just arrived at the first activity of the day 鈥� den making in the woods 鈥� and there鈥檚 loads of mud huts around me and the families are gathered in a central area learning from a LOOK mentor how to make a den.听 So, I鈥檓 just going to go and chat to some of them to see how they鈥檙e enjoying it.

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Ellie

My name鈥檚 Ellie and this is my sister Keira.听

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Edwards

Lovely and what about mum and dad?

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Chris

So, I鈥檓 Chris Clark, I鈥檓 dad.

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Ellie

And mummy鈥檚 Kate.

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Kate

And I鈥檓 Kate.

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Edwards

What would you usually be doing on a Saturday?

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Ellie

Going to football.

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Edwards

And is LOOKfest something you鈥檝e really enjoyed so far?

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Ellie

Yes.

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Edwards

Why have you enjoyed it?

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Ellie

Because there鈥檚 lots of fun activities.

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Chris

I think it鈥檚 good for us to get to come and see other families with children with visual impairments, get to talk to similar people in similar situations and to see the kids having fun, I think that鈥檚 the main thing for us is seeing them have accessible activities that they can do and just be normal children.

听

Yeah, so it鈥檚 great for Ellie but it鈥檚 also great for Keira, as a sibling of a visually impaired child, to come and experience so many of the positive activities that are ongoing.听 I mean Ellie gets opportunities to do all of these different fun activities but it also gives Keira the time to do that, which she wouldn鈥檛 necessarily get to do if we were just going around 鈥� if we had two sighted children.

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Carson

My name鈥檚 Charlotte Carson and I鈥檓 the Director of LOOK.听 And we鈥檝e set up a youth mentoring project where we connect young visually impaired people with a mentor, to help them through the different challenges in their life, whether that be in school, moving on to university or college, whether that鈥檚 about learning to use a cane, whether it鈥檚 about wanting to feel better about being visually impaired or whether you鈥檝e been newly diagnosed with a visual impairment.听 We want to match young people with another young visually impaired person who鈥檚 been through those challenges.

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Hollingshead

I鈥檓 George Hollingshead and I鈥檓 a LOOK mentor.听 I have been visually impaired/blind since birth and my mum didn鈥檛 know where to go for help because I live quite rurally.听 So, she came to Birmingham where LOOK had just been started and she got a lot of information and help, chatting to parents and other people with a visual impairment.听 And then as I鈥檝e got older, I鈥檝e had continued work with LOOK 鈥� at school we鈥檝e done sports, we鈥檝e done campaigning, things like that.听 And then a couple of years ago I was asked to join the mentoring programme.听 So, that鈥檚 basically going through all these things as a kid 鈥� school problems, socialising, transport 鈥� all these ways and just at that point I would have wanted to have someone who I could talk to who could give me little hints and tips that would have saved a lot of time.听 So, I felt that I needed to give back and talk to people and I feel that I鈥檝e got as much out of the mentoring as my mentees have too, I mean I hope they have.

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Edwards

I鈥檓 just here at Carnival Arts with Kim and she鈥檚 just going to talk me through what she鈥檚 doing today in this activity.

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Kim

Okay, so we鈥檝e got weaves, which are like 鈥� it鈥檚 willow and it鈥檚 really soft and flexible and it鈥檚 been soaking in water overnight.听 And what we鈥檝e been doing is we鈥檝e been cutting them and sellotaping them together to make a shape, it鈥檚 a rainbow shape.听 Do you want to feel what I鈥檝e done so far?

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Edwards

Yeah, let鈥檚 have a feel.听 Oh, wow and what would you use this for?

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Kim

It鈥檚 just a nice decoration and it kind of rustles in the wind as well.

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Edwards

Just walking up the path to blind rugby now.听

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Rugby player

I鈥檓 running with the ball towards the defender.听 I鈥檓 waiting for a clap from my 鈥� from me mate.听 She鈥檚 now clapped, so I鈥檓 going to throw the ball back.

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Edwards

I鈥檓 here with Chris and he鈥檚 running VI rugby, cricket and football today.

听

How are these sports adapted for VI children and families today at LOOKfest?

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Chris

Well most significantly the balls will have either bells or ball bearings, so, people who have more sight loss can hear where the ball is rather than using their sight.听 But with people who have useful vision the balls are also bright yellow or bright white, just to give them more indicators as to where the ball is on the pitch or on the field.

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Carson

What we wanted to do with the festival was give young people work experience also.听 They can put on their CV they鈥檝e helped run and create a festival and we really wanted to do that.

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White

Charlotte Carson of LOOK ending Lucy Edwards report.

听

Christina Keiller, our guest today, it鈥檚 possible that one of the effects of blind children going to mainstream schools is that they and their families perhaps have less contact with other blind children than they might have done in the past.听 You鈥檙e from Denmark where mainstreaming was adopted pretty early, I wondered what your experience was.

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Keiller

Well my experience was that I lived in a very rural area, so I was put in the local school and I would say that, for me, that worked really well.听 I had some additional support, which worked really well for me and it was kind of tailored specifically to my needs.听 And that followed me through my education really.听 So, I would say that has been very positive for me.

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White

And what about what you observe here?听 Your children are sighted, I think, are there blind children at their schools and what鈥檚 their attitude to being at mainstream school?

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Keiller

Yes, I think it鈥檚 very varied.听 I know two children in mainstream school and the one child is doing very well, she鈥檚 visually impaired and I also know someone who鈥檚 blind in that school.听 And I think it鈥檚 a bit of a mixed bag because I think the blind girl would prefer to be in a specialist school, just because she feels that the challenges are quite significant, just even things like getting around the school is quite tricky.听 So, I think it鈥檚 very mixed.

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White

Right, well we would be very much interested in hearing people鈥檚 responses.听 It still sounds as if horses for courses is still the attitude on that.听 Christina Keiller thanks very much for joining us.听 And that issue about dual disability is one we鈥檇 also like response on.听 Plenty for In Touch listeners to go at, you can call 0161 8361338, to leave us a direct message.听 You can email intouch@bbc.co.uk or you can go to our website, that鈥檚 bbc.co.uk/intouch and from there you can also download tonight鈥檚 and previous editions of the programme.

听

From me, Peter White, producer Tom Walker, Christina and the team, goodbye.