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Sudden sight loss

In Touch hears from Vanessa Potter, who lost her vision over 72 hours. Also, how easy is it to get the information you need, in the format you need, from the NHS?

In August 2016 it became mandatory for health and social care providers to offer patients written information in whichever format they required - whether that be via text, email, braille, audio or large print. The implementation of what is called the Accessible Information Standard has recently been reviewed with mixed results. We put some listeners' experiences of getting required information in a required format from the NHS to Olivia Butterworth from NHS England.

Peter White talks to Vanessa Potter about her book, Patient H69 about her experience of losing her sight over 72 hours, and what it was like learning to see again.

Presenter: Peter White
Producer: Lee Kumutat.

Available now

20 minutes

In Touch Programme Transcript - 8.08.2017

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

 

 

IN TOUCH – Sudden Sight Loss

 

TX:  08.08.2017  2040-2100

 

PRESENTER:           PETER WHITE

 

PRODUCER:             LEE KUMUTAT

 

 

White

Good evening.  Tonight:  The rules which give you the right to personal information about your health in a form you can actually read.  But are those rules working?   You put your questions directly to NHS England.  

 

And, from full sight to no sight in 72 hours.  How the simplest task can turn into an ergonomic nightmare.

 

Clip

Initially standing on the scales I sigh as there is no way I can see my feet, let alone the screen beneath them.

 

White  

More of Vanessa’s story later in the programme. 

 

But first, until a year ago if you wanted to be sure of getting personal information from the NHS, such as appointments, test results, advice about treatment in a form you could read yourself, you had to rely on goodwill.  Some people’s experience suggest you still do.  But there is now something called the Accessible Information Standard which means that if they can’t provide it to you in Braille, e-mail or text message or another form you need to use to get information, then you have the law on your side.  

 

It’s now a year down the track, and there’s a report out looking at how well the NHS and other care services covered by the standard are doing.  We also asked you for your experiences over that past year.  Well I’ve been sharing those with Olivia Butterworth, Head of Public Voice for NHS England.  She began though by telling me what their report had found.  

 

Butterworth

One of the fundamental pieces that came out of the review that then was picked up by the Care Quality Commission, so the national body that monitors the quality of care and health services, who’ve included the standard in their equality objectives, which means that every provider that they inspect will also have their inspection inspected against the standard.  So if a GP practice isn’t compliant with the standard they would need to be able to demonstrate how they’re going to become compliant when they’re CQC inspected.

 

White

So are these results better or worse than you expected?

 

Butterworth

I think they’re about what we expected.  So we know that everybody thinks the standard is the right thing to do and we know that where it is being implemented it’s making a massive difference for people.  So simple things like getting a text, getting an email, but we’ve still got lots of places where people don’t think they’re allowed to email, people don’t think they’re allowed to test…

 

White

And why do they think that?  I mean we’ll come to it with some of the queries that we’ve had, but it just seems incomprehensible to me.  Everyone’s emailing it seems except the NHS.

 

Butterworth

So I think it’s about changing practice and the NHS is a guardian of people’s health information, it has to be done properly and it has to be done appropriately and listeners will be aware that there was a big issue with a data breach earlier in the year which caused havoc with email systems.  So it is about doing it appropriately and in the right way but allowing people to see what’s possible.

 

White

So can I ask you how formats other than email or text, which really should be quite simple, how are they being produced, are they bring produced in-house, how does it actually happen?

 

Butterworth

Local organisations, so a GP practice would need to make an arrangement with a local provider or not a local provider, any provider of Braille, in order that they can make sure that they can access that.

 

White

And who pays for it?

 

Butterworth

So the local system, so CCGs have the budget that they allocate to different providers for different services and it’s no different to producing a written piece of paper.  Ultimately the standard should save money because texts and emails have a much lower cost to them than a written letter that goes out in the post with a stamp on it.

 

White

Right, we asked our listeners how it was going for them and we’ve heard from some people.  Jenna Mistry got in touch, she said:  “When I’ve seen my specialist doctor he claimed not to know anything about providing information.  He then sent it to me in a format that I couldn’t read.  Even with the dentist I have to push to get an appointment by text.  I don’t understand why this is.  The standards aren’t being put into practice.”  What’s your advice to Jenna?

 

Butterworth

My advice to Jenna would be that there will be a communications lead or a PAL’s officer in the trust where she’s seeing her specialist and I would raise it with them.  In NHS trusts there is usually a patient liaison advice person, in your practice it might be your practice manager, there are also patient participation groups, there is your local Health Watch.  But I think it is about making sure that we are telling people that this isn’t being complied with and now we need to do something with it.

 

White

Okay.  Also on the line we had Sue Hinks who got in touch.  Sue, do you want to put your own question directly to Olivia?

 

Hinks

Yes, hello Olivia.  I’m having a little difficulty with my local doctor’s surgery.  It’s written on my notes that I would like email, text, braille, phone call but they don’t seem to be acting upon it.  So what I did I contacted NHS England and they have put a complaint in to my local surgery practice manager and just waiting for a result.  They had it on my notes though, this is the frustrating thing, they’re aware and the excuse I get – I call it an excuse – oh who’s going to pay for it, who’s going to pay for the email.  Oh we can’t translate blood tests results into Word or anything, we can’t do that kind of thing.

 

Butterworth

Okay, so on the first point.  If it’s on your notes it should be acted upon and there should be a flag on your notes that say you have a communication need.  So I would…

 

Hinks

I still get print letters from blood test results and print letters for appointments etc.

 

Butterworth

So I think there’s always something about helping people to do things differently, that they haven’t done before.  So for a sighted person actually the concept of putting something on to a Word document, well that’s just another printed document isn’t it?  So helping people to understand and explaining – if you email it to me on a Word document my screen reader can read me my letter without anybody else being involved, so it protects my privacy, helping people to understand those things often helps them to realise how important it is for them to work differently.

 

Hinks

Yes that’s the point I’m trying to get across to them.

 

Butterworth

So your GP practice will also have a Patient Participation Group and I think there’s many patient participation groups that have had big discussions about the standard and how that should be complied with within their practice and they’ve taken on an awareness raising role within the practice because it’s often not just the clinician, it’s also the practice manager and the reception staff who need to know as much about this as they possibly can.  Insofar as contacting NHS England I think we have a standard 20 day response turnaround for issues that come in through the customer contact centre but I’d be really happy to make sure we pick this up outside of this call, Sue, to make sure that you are going to get a response.

 

White

Sue, I gather you have had some plusses?

 

Hinks

Yes I have had some plusses.  The first plus is that when I go to the local hospital for – to do with ear care I do get an email for the appointment.  And on another plus side I recently attended expert diabetes course, I actually got the information I needed to follow the course in braille.

 

White

So Olivia that’s cheering presumably for you.

 

Butterworth

Now we have to make that happen in all of your healthcare services.

 

White

Okay.  Sue Hinks, thanks very much indeed for joining us.

 

Hinks

Thank you very much.

 

White

One more for you.  Hazel Darvell got in touch and she said:

 

Darvell (read)

Since 2011 I have been battling with my NHS trust for accessible information.  In my case email.  During this time they’ve had a major upgrade to their computer system but failed to incorporate flagging up alternative formats.  Even now that it’s law things have not changed very much.  After visiting a clinic and booking another appointment they’ve automatically given me this appointment via printed letter, which I then tore up and gave back to them telling them to look in my file.  I fully intend to take matters further if this continues.

 

White

What’s your reaction and how should she take it further?

 

Butterworth

I think the normal process of going through the complaints route of providers is really helpful, I know people don’t like to complain but it’s really helpful because then it means that people can be monitoring what complaints are coming in.  So if there are a lot of complaints coming into a trust around the standard then they can start to take more action and take that really seriously because all those complaints should be reported up to their trust board.  I think there’s something about the training for frontline receptionists, clerical, administrative staff – if they haven’t been trained how would they know?  So again providers should be making sure that their staff have an awareness that this is important.

 

White

Is this now enshrined in law?

 

Butterworth

So all information standards are enshrined in law, so therefore as an information standard the accessible information standard is then legally enforceable.  So ultimately if you go through the complaints route you might want to take it to your local Health Watch, they’re really keen at the moment to make sure that they’re building up evidence of where this is not working and where it is working.  And then it would ultimately potentially end up with a legal complaint being filed.

 

White

Olivia Butterworth.  And we’d like more of your evidence as well on this to give us a wider perspective of what’s actually going on, whether it’s positive or negative.

 

One of the areas I think we struggle with on In Touch is conveying what it’s like to lose your sight, gradually or suddenly.   As a rule, by the time people feel like talking to us about it they have processed it or rationalised some of the rawness out of it, and are now more concerned with solving the challenges life is throwing at them.  But Vanessa Potter’s situation is rather different.   When she lost her sight suddenly as the result of a rare disease which attacks the nerves of the brain, and then gradually began to recover some of that sight, she kept an audio diary, which she has now pulled together into a book.   Significantly, she called it Patient H69, to highlight the impersonal way in which she felt she was often treated during the process.   She’s been telling me about her experience, and she first described the storm of symptoms which hit her out of the blue.

 

Potter

It all happened within 72 hours.  I lost my sight completely, so that was absolutely no light response at all.  And I was paralysed.  So I basically had no sensory responses.

 

White

So lots was happening to you, as you say you lost feeling in your feet, your legs, your hand.  Why was the focus when you wrote this book so much on eyesight because that’s how it feels?

 

Potter

That’s interesting actually because I do try and talk about all of my sensory loss because of course it’s all so interrelated.  I know at one stage, because I couldn’t see but also because I couldn’t feel the world, I remember asking someone – am I still here – because I was so disorientated, my body – the normal signals and data you get to orientate yourself I didn’t have two of those major channels.  So it was very strange but I suppose I do write a lot about the vision.

 

White

And you don’t think this is retrospective at all on the visual side because it’s more dramatic, you are writing a book and selling a book after all?

 

Potter

Well actually I don’t have to be retrospective because I recorded everything.  I got people – my friends and family – in the hospital to do a diary from the very first day, so a lot of what I wrote came from that.

 

White

Now your sight went gradually in the sense that you aren’t one of those people who woke up in the morning and couldn’t see a damn thing but it went gradually over that 72 hours and it was in hospital where you woke up one morning and more or less could see nothing.  Can you just explain what that was like?

 

Potter

For the last little bit of sight to go I almost didn’t realise because it was a halo that was getting smaller and smaller and smaller and had this brown misty sort of fog over everything.  And then it wasn’t until actually I was moved from a room inside to outside that there was this – I know there should have been some light shift and there was none and that’s when I realised that it was completely black, not just dark greys but black.

 

White

Now you were reassured fairly quickly, people did say this is unlikely to be permanent.  In your state how easy was this to believe?

 

Potter

I believed it because I absolutely needed to believe it.  I suppose I’m quite a positive person, if somebody gives me something positive to hang on to I grab it.  So I desperately wanted it to be true, I didn’t want to lose my vision, it was my career, my job, so yeah I hung on to that.

 

White

The sense you get as a reader of this, you didn’t feel you were being heard and taken seriously.

 

Potter

I wanted them to find answers and this was an interesting thing for me, I’d always assumed hospital doctors they know what’s wrong, they’ll cure you, they sort things out.  And this was a time when they couldn’t and everybody was scratching their head and that was very frightening because I wanted them to find the answer and every single time they came back with a test result it was like it’s not that, it’s not this.  I did have a battle with one particular doctor because he was asking ridiculous questions to somebody who’d just lost their sight…

 

White

Like – such as?

 

Potter

Oh come on walk behind me down this corridor and read this chart.  Well I was paralysed and pretty much legally blind, so that was impossible.

 

White

What is really quite fascinating in the book is not so much the sight going, which of course is dramatic, but the sight beginning to come back because that’s when you’re trying to describe it.  Can you give me a sense of what that was like?

 

Potter

Well I describe that as landing on a crazy mad planet because it was somewhere I had never been before visually.

 

White

Because things didn’t look the same, as you remembered, or as they ought to be?

 

Potter

They didn’t look like anything.  I didn’t even use the word seeing because I felt like I was sensing the world.  It was just this grey wispy floaty thin place, in fact I described it as looking through an x-ray, everything was black and white, thin lines, no faces, no detail, one dimensional, no colour.  It was the most bizarre place and I didn’t recognise it.

 

White

You had to perform certain tasks before you could go home.  There’s the very English tea making test, what did that test reveal to you and what was it about?

 

Potter

That test – well this is the get out of jail card.  So if you want to leave prison – sorry hospital – when you have just gone blind you have to pass a test and that is you have to make a cup of tea.  Which of course was something – an act that was incredibly easy before all this.  But I struggled with that enormously.  It took me about 20 minutes – finding the mug and boiling water – hot water is terrifying when you can’t see – and pouring it and bending down and I suddenly realised what an enormous uphill battle I had.  Yeah quite an experience.  I also had to walk down a staircase, which actually I think was more frightening because it was like Indiana Jones – putting your foot out and hoping there was a step below.

 

White

Now once you were at home and your sight was slowly coming back by this point and you’d passed the tea test, you were desperate to do normal things that then wouldn’t work the way that you would have done them.  There’s a story that I particularly enjoyed about how you wanted to weigh yourself.  Can you perhaps read us an extract?

 

Potter

“I decide it’s time to know how much weight I have lost.  However, in order to read the glass scales that I prod tentatively with my toe I realise I will have to employ some daring tactics.  Initially standing on the scales I sigh as there is no way I can see my feet, let alone the screen beneath them.  Stepping on again I attempt to lower myself to the floor but I am slow and the electronic dial soon flicks off.  Forcing rubbery legs to kneel and with my nose just centimetres from the dial I press the scales again and can almost make out one faint digit.  Experimenting again I work out that after pressing the scales I have around three seconds to read the dial.  This exercise will require speed.  Thankful for once that the house is empty and my family are unaware of my circus antics I practised an inelegant hop off technique.  But I am just not fast enough.  Unfortunately I need to hold the wall for support and that slows me down.  I try kneeling my weight on the scale but that only results in me head butting the toilet bowl.  Tumbling is taking on a whole new meaning in our upstairs bathroom.  All dignity now lost I crash to the floor in a magnificent bungee style descent that leaves me spread-eagled but able to just glimpse the numbers before they blink off.”

 

White

Losing sight is often portrayed as one of the worst things that can happen to you physically.  I have to say much to the irritation of some people who’ve been blind most of their lives.  Now you’ve experienced it is that still true for you?

 

Potter

It was a terrifying experience, I can’t say it wasn’t, but it’s probably made me more empathetic.  I mean I don’t have full sight now, so I live in a world with visual disturbances, so whilst of course I’m not blind I understand more things now.  I’m forever photographing steps when they don’t have good boundaries on them, I photograph loo signs everywhere that you can’t see – I find myself getting irritated actually about those things now, things that I would never have noticed before.

 

White

One of your great fears at the beginning of this was your job, because it was so much about sight and colour.  Where are you now and are you still doing – have you gone back to doing the same thing?

 

Potter

So I was a TV producer by trade, I made TV commercials, mostly the ones that people fast forward through.  No this actual whole experience has become a springboard to a brand new career, which is writing and working on science art projects.

 

White

So are you going to tell us that it was a good thing really?

 

Potter

No it’s never – I’d never say a tragedy is a good thing because it was catastrophic but I made a choice to get something out of it, I figured if it was taking something away it was going to give me something back.  I’m not complaining that I’ve had incredible experiences on the back of what was a horrible experience.

 

White

Vanessa Potter.  And Vanessa’s reading of her own book is available to buy and download online.  There are print and eBook versions as well and if you want to hear more of that interview it’s on tonight’s extended podcast.

 

We’re always glad of your responses, you can call our action line on 0800 044 044, for 24 hours after the programme or you can email intouch@bbc.co.uk.   From me Peter White, producer Lee Kumutat, and the team, goodbye.           

 

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