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IN TOUCH – AMD drugs and the new £10.00 note

TX:Ìý 19.09.2017Ìý 2040-2100

PRESENTER:Ìý ÌýÌýÌýÌýÌýÌýÌý PETER WHITE

PRODUCER:Ìý ÌýÌýÌýÌýÌýÌýÌýÌýÌý CHERYL GABRIEL

Peter White

ÌýGood evening.Ìý Tonight, the prize for persistence. We hear from the man whose requests for treatment for his failing sight were being ignored, hear what he did next. And what makes an accessible bank note?

Ìý

Hazel Dudley

If they must put markings on them, that’s up to them. It doesn’t bother me whether they’re there or not, to be honest.

Ìý

Geoff Long

I think they’re essential, because it is too much like the five not to have a tactile clue on it. And after all, 95 per cent of blind people don’t actually read Braille.

Ìý

Peter White

Two of our listeners get their hands on the new tenner.

But first, Chris Thorley is a man who doesn't take no for an answer. He has the eye condition Myopic CMV, which means he has to rely on his peripheral vision and objects can often appear to be very blurred. The central vision in one eye went when he was twenty two, the other eye is now failing. He was being treated with the drug Lucentis, but when the injections he had for that stopped working, Chris asked his ophthalmologist about changing to an alternative treatment, Eylea. They agreed it was worth a try, but as the medication isn't licensed in England by NICE, the National Institute of Health and Care Excellence they’d have to put in an individual funding request to Chris's local Clinical Commissioning Group, the North Staffordshire CCG. But despite frequent attempts by Chris and The Macular Society, who were helping him to speak to officials from the CCG, Chris wasn't able to find out what had happened to his request. After waiting for nine months for a response, he decided to adopt an unorthodox approach to get the information. Well, our reporter Tom Walker has been to Stoke-on-Trent to meet Chris outside the offices of his CCG.

Ìý

Chris Thorley

The application went in and we waited patiently. So that was October 2016, and believe me, we waited patiently. My advocates, the Macular Society, would get in touch or try to get in touch with the local CCG and the local eye clinic on occasion to find out where I was in the process, but we never really got any real answers.

Ìý

Tom Walker

Did you get nothing at all from them?

Ìý

Chris Thorley
Not really, no. Nothing to speak of, no. So eventually come July, Rosalyn Napper from the Macular Society rang me and said, ‘we can’t really find out where in the process you are.’ So that is really when all the fun began.

Ìý

Tom Walker

So you waited nine months, nothing happened. But then you decided to take things into your own hands.

Ìý

Chris Thorley
Yeah. Most certainly did. If you ring the local Clinical Commissioning Group you don’t really get anywhere, so I thought I’d pay them a visit.

Ìý

Tom Walker
Well, you did more than that didn’t you?

Ìý

Chris Thorley

Walked through the doors, walked past the security guards, funnily enough, to a desk, grabbed a member of staff, told them that I was visually impaired. Now, you do need security cards, security to swipe over the passes to get through to the lifts and through the doors etc. You only get these if you’ve got an appointment or if you’re a member of staff. So I had none of this. But this member of staff, luckily, just waltzed me through to the lift, up in the lift to the third floor and straight to the door of the CCG office. I was still locked out, but some staff were walking in and I walked in with them. So there I was, standing in the Clinical Commission Group office.

Ìý

Tom Walker
How were you received?

Ìý

Chris Thorley
‘Who are you?’ ‘Chris Thorley.’ ‘Do you have an appointment?’ ‘No.’ ‘You have to have an appointment.’ ‘Well, I don’t do appointments,’ is what I said. ‘This is an urgent matter. I cannot get through to you any other way. I’d like to see someone of authority.’ And away we went. And after a bit of to-ing and fro-ing, Zara Jones, the director, kindly came out and saw me and spent some time with me. Zara Jones was most gracious, I must say. She gave me the time, I got the message across and things started to happen.

Ìý

Tom Walker

When you were actually in the offices of the CCG, how did you feel personally?

Ìý

Chris Thorley

I felt like a man that had got work to do. I feel that that a lot, to be honest with you, work to do for other people. These directors and executives at places like the Clinical Commissioning Groups and the NHS, they’re not really confronted and they’re not really speaking to people as they should be spoken to. They’re not listening to people and people’s fears. I really did feel that I was doing that for them as well as myself.

Ìý

Tom Walker
CCGs cover thousands of people, you’re one individual with a relatively rare eye condition, I guess. Can you understand how maybe it was shunted, shall we say, to the back of the queue or not treated as a high priority?

Ìý

Chris Thorley

Well, in the application, as I say, my advocate and I, we drafted a letter to go along with the application, and in that application I made it quite clear that this application was not just for Chris Thorley, it wasn’t just for me, it was for many people with my eye condition and other eye conditions. Because of that, apparently it did get to them and they did look at it, but because it was in fact a lot of people and not an exceptional case, meaning it wasn’t just for me but it was for many people, they shelved it, they put it aside to look at it later and work out some kind of policy of how they’re going to deal with it. But they shelved it and didn’t look at it again. So whilst we were waiting, actually nothing was happening.

Ìý

Tom Walker
They said this to you in a letter, didn’t they?

Ìý

Chris Thorley

Yeah, it was all admitted in a letter which I got on my second visit A letter of admission, which was gold dust really.

Ìý

Tom Walker
How’s the situation been resolved?

Ìý

Chris Thorley
North Staffs CCG have given me Eylea, a course of three Eylea injections, and then I will have to reapply if I need more. Unless things change, which we do feel they are going to change, in October. I do feel that if I’d had Eylea when I first asked for it, which was a long time ago, it was pre-October 2016, I may have stood more of a chance than I’ve got now, to be quite honest.

Ìý

Peter White

Chris Thorley. Well, we did ask the North Staffordshire CCG to come onto the programme to explain what had happened in this case. They preferred to send us a statement. They told us they had apologised to Chris for the delay on deciding the best way forward in this case and they were investigating the causes of the delay. And they say their offers to meet with Chris personally still stand. Well, to find out more about what's supposed to happen in these kind of cases, I’m joined by Cathy Yelf, who’s the Chief Executive of The Macular Society. Cathy Yelf, first of all just explain a bit more about Eylea and where it fits into Ìýthe treatment of macular disease.

Ìý

Cathy Yelf
Yes, it’s a drug that slows down the development of abnormalÌý bloodÌý vessels that grow in the back of the eye, diseases like wet macular degeneration, and in Chris’s case, to complications of a very high degree of short-sightedness. So it’s the second of two drugs to be licensed and developed in this area, the first one being Lucentis.

Ìý

Peter White

So what's supposed to happen in cases where a drug is either not working, or has perhaps ceased to have an effect?

Ìý

Cathy Yelf

Well, we believe that in cases where there’s more thanÌý one drug available if one drug doesn’t work, then a patient should be allowed to try the alternative drug. Provided obviously it’s licensed. And in the cases of very expensive drugs, then of course they have to go through the approval process conducted by NICE. So we think they should be allowed to swap. This is controversial and not everybody in the NHS supports that, but we believe that.

Ìý

Peter White

And is Eylea licensed in England, so that this could happen?

Ìý

Cathy Yelf

Eylea is licensed but it’s not yet been through the rather slow process that NICE takes to approve a drug. They have now in fact moved it to their fast track process because clearly there’s a very strong case for making this drug available to people with Chris’s condition. The problem is it’s already been approved in Scotland and Wales, and this was a source of great distress really to Chris and to many other patients in his position in England.

Ìý

Peter White
Because you think, well this is available somewhere, and therefore obviously people think itÌý works, why can’t I have it?

Ìý

Cathy Yelf
Well, that’s right really. I mean, I think patients, where they have conditions for which there is no treatment this is very disappointing and may be very distressing, but they understand, if there’s no treatment there’s no treatment. What is really distressing is when there is a treatment for somebody’s condition and they can’t have it just because of where they live. This is of course the notorious postcode lottery, and it causes immense mental distress to patients to be denied drugs that they know their neighbours can have down the road.

Ìý

Peter White

So is there a problem here with the process? Because I think you’ve been talking to people within the health service about this.

Ìý

Ìý

Cathy Yelf

Yes. So the process that Chris used was called the ‘individual funding request process’. It’s supposed to be used in cases where an individual, a unique patient, has a particular set of circumstances for which the NHS naturally wouldn’t have a policy but where they can draw attention to their individual case. And that’s rational. The problem is it’s also the only way that any patient can raise a request for a new form of treatment if it’s not already available in their area. So the problem is with this, is that if the Clinical Commissioning Group locally decides that more than one patient can benefit from this approach, then they have to go away and develop an entire policy around it. And this puts the patient in a ridiculous Catch-22 situation: if they don’t apply through the individual funding request process they can’t have the treatment, and if they do apply and they’ve got such a good case for treatment that other people benefit as well, they still can’t have the treatment. So we think the system is dysfunctional, but in this case, in Chris’s case, there was an additional failure: an incompetence in the CCG where they said he couldn’t have the treatment because more than one patient could benefit from it and they just never got round to developing the wider policy.

Ìý

Peter White
So the very thing that Chris wants to do – in other words, he wants to draw attention for it for other people, that could actually stop him getting the treatment?

Ìý

Cathy Yelf
Yes.

Ìý

Peter White
That is absurd isn’t it?

Ìý

Cathy Yelf
We think it’s dysfunctional, and I’ve written to Sir Andrew Dillon at NICE, I’ve written to Simon Stevens at NHS England, and I’ve written to Jeremy Hunt, the Secretary of State about this and a whole raft of other issues around the postcode lottery, because we do not think this is a satisfactory process.

Ìý

Peter White

So what needs to happen, very briefly, Cathy?

Ìý

Cathy Yelf

Well, I think really we need some leadership at central level in the NHS to address the increasing postcode lottery around the availability of new drugs. But also to correct the disparity and the enormous differential in the quality of care that patients can expect for eye disease. So a clinic in one part of the country that can treat its new patients with wet AMD within a week, and other clinics that can’t do it within twelve weeks, that’s unacceptable and we needÌý better leadership in the NHS to put this right.

Ìý

Peter White

And presumably the alarming thing about this is that the treatment that Chris might have had could have had an effect on the rate at which he loses his sight?

Ìý

Cathy Yelf
It will. This condition is progressive like wet AMD and the sight loss is largely irreversible. It is incredibly upsetting that this inefficiency causes such unnecessary sight loss and causes such terrible distress and is such a waste of NHS resources.

Ìý

Peter White

Chris took rather extreme action to sort out his problem. Do I assume you're not actually recommending that to your members?

Ìý

Cathy Yelf
No, we don’t recommend invading your local CCG really. But having said that, we do recommend to patients that they sharpen their elbows and they make sure that they are heard. And clearly we are willing to help wherever we can with that via our helpline and our advocacy service. But sharp elbows is what you need in the NHS these days.

Ìý

Peter White

Cathy Yelf, thank you very much indeed. So maybe you need to sharpen those elbows.

Certainly the bank of England can't be accused of a lack of information about the latest of its new banknotes. We've already had the fiver, and the tenner, which hit the streets at the end of last week to a flurry of assurances that the new notes, which are polymer rather than paper-based, will be more long-lasting and much harder to forge. What we wanted to know, though is how easy are they going to be to differentiate from each other for visually impaired users. The bank of England's chief cashier, Victoria Cleland explained what they'd put in place.

Ìý

Victoria Cleland

The bank of England for many, many years now has been trying to think about how to make the notes more accessible. So we have a tiered structure, so the different size for the different denominations. We’re also using a different colour palette for each of the denominations andÌý using big bold numerals on as much white space as we can. But with the new polymer ten pound note we saw an opportunity to introduce a new tactile feature.

Ìý

Peter White

Yeah. Now I’ve got one here, which I shall – which is quite rattly. And what I’ve discovered as I put my hands along it is that there is something that you might think was Braille except that it doesn’t actually say anything that’s particularly definite. This isn’t really meant to be Braille is it?

Ìý

Victoria Cleland

It’s not meant to be Braille, no. We did quite a lot of research, including talking to the RNIB and were advised that as it’s not a very significant proportion of the population that can read Braille we were better to go for a feature that was easy to recognise, and we ran a number of focus groups and this configuration of two sets of four dots was found the easiest to identify.

Ìý

Peter White

Yeah, the only thing that strikes me as a bit odd about that is that although it’s quite right that not a lot of people read Braille, if you’re going to put some dots on, that would be the thing that makes it recognisable. So mightn’t you just as easily have put a ten on there so that it did mean something to those who could read it?

Ìý

Ìý

Victoria Cleland

That was one of the things that we tried, but actually that was more difficult for people to feel. So what we’ll be doing is when the twenty comes in in 2020 we’ll be using a different configuration of dots in the same place. It’ll be easy to identify the ten versus the twenty, and the five is distinguished by the fact it doesn’t have any of these raised dots.

Ìý

Peter White

Victoria Cleland from the Bank of England. Well, we asked blind consumers Geoff Long and first Hazel Dudley to come in to our studio to give the notes the finger test.

Ìý

Hazel Dudley

It reminds me of the fiver straight away, and I can immediately feel that there is a tactile on one of the corners. So how about you, Geoff?

Ìý

Geoff Long

Same texture as the fiver, yeah. The tactile is obvious, there are two little – I suppose you’d call them dots, a little bit like Braille letter Gs actually.

Ìý

Hazel Dudley

Well –

Ìý

Peter White

And, yeah, it’s instantly recognisable. I actually wouldn’t know whether it was any bigger than the fiver, not just by a casual...

Ìý

Hazel Dudley

Not really...

Ìý

Peter White

No, I felt these a little while earlier and my first instinct was that it is bigger, and it is in fact. See, I reckon I might very well go on using the size test and kind of putting it between my fingers, which is what quite a lot of blind people do, because that kind of paper, I’m not sure it’s going to scrumple up the way that paper notes do.

Ìý

Geoff Long

Yeah, I normally do it by width. You know, in my hand, the width, and I can tell a tenner. I’m not sure whether I would know, especially after a good evening out, whether this was bigger or not. But the tactile –

Ìý

Hazel Dudley
That would give it away.

Ìý

Ìý

Geoff Long

- is so obvious that you’re not going to be in any danger of mistaking it for anything, I don’t think.

Ìý

Peter White

One thing that struck me – I’d be interested to know what you both think about this – it’s, I mean, the tactile marking doesn’t mean anything, does it?

Ìý

Hazel Dudley

No, it doesn’t. Actually I was going to make that point – it actually does not mean a thing, excepting well, you’ve put a tactile marking on it. I don’t know what it is or why it is, but it does, Geoff’s right, it looks like two Gs.

Ìý

Geoff Long

And I don’t think that it matters that it doesn’t mean anything. The fact is it’s instantly recognisable and it’s obvious.

Ìý

Hazel Dudley

And probably because of what the note is made of, it’ll stay there.

Ìý

Peter White

Unlike you two clever clogs, actually I didn’t touch it straight away, because it is right on the end. So if I didn’t know it was there, I think it might take me a little while. I mean, clearly once people have had these in their hands regularly they’ll know where to look.

Ìý

Geoff Long
The first time you encounter the note maybe you might take half a second to find it, but as you say, once you know where it is – and the first time you do anything, you know, you do it slightly cautiously.

Ìý

Hazel Dudley
But then you know what? It’s a new note and we all know it’s a new note, so therefore the first time you get it, you’d examine it, wouldn’t you?

Ìý

Geoff Long

You’ll explore it.

Ìý

Peter White
Geoff, you were actually involved in the consultation on this, and one of the reactions that we did get after we looked at the fiver was people saying, ‘oh, they’re like receipts.’ And people were telling us they were getting them mixed up.

Ìý

Geoff Long

Right, here’s a couple, a fiver mixed up. Show me the receipt.

Ìý

Peter White
You are a Yorkshireman.

Ìý

Geoff Long

I am a Yorkshireman but that means I’m even more careful and notice things. But I wouldn’t personally mistake it for anything else.

Ìý

Peter White

And what about the markings, Hazel? Do you want them to say anything or are you perfectly happy with the two apparently meaningless Gs?

Ìý

Hazel Dudley

If they must put markings on them, that’s up to them. It doesn’t bother me whether they’re there or not, to be honest.

Ìý

Geoff Long

I think they’re essential, because it is too much like the five not to have a tactile clue on it. And after all, 95 per cent of blind people don’t actually read Braille, so it wouldn’t matter what the marking was.

Ìý

Hazel Dudley

But then I haven’t seen it against a fiver, you see. If I’d seen it against a fiver and I thought oh no, that was too similar, then I might say something different. If it’s a little bit wider I would just keep it somewhere different.

Ìý

Geoff Long

Well, you say that, but if your wallet’s full of notes, you know..

Ìý

Hazel Dudley
Well, lucky you. (laugh)

Ìý

Peter White

Geoff Long and Hazel Dudley squabbling over a ten pound note. I should think that’s happened a few times before. Do tell us about your early experiences of the new note and also about your attempts to get medical information. You can call our Action Line on 0800 044044,Ìýyou can email intouch@bbc.co.uk, or click on the Contact Us link from our website: that’s www.bbc.co.uk/intouch. And you can get the podcast of tonight's programme from the website as well, as well as signing up for others. That’s it, from me Peter White, producer Cheryl Gabriel and the team, goodbye.