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IN TOUCH – The Eyes Have It

TX:Ìý 12.12.2023Ìý 2040-2100

PRESENTER:Ìý ÌýÌýÌýÌýÌýÌýÌýÌý PETER WHITE

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PRODUCER:ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý BETH HEMMINGS

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White

The Eyes Have It – well that’s the cry that usually goes up to indicate a parliamentary vote has just been successfully carried but now the phrase has been borrowed by a campaign, launched by a powerful group of eyecare charities and professional bodies.Ìý I’m in the Thames Pavilion at the House of Commons, where MPs, amongst others, are being lobbied to support the call for a national plan to cope with what’s being seen as a serious crisis in eye care, leading in the worst cases to people unnecessarily losing sight.Ìý The evidence is stark – according to the latest data from NHS England over 640,000 people are waiting for specialist eye treatment, of these more than one in three have been waiting more than 18 weeks, 20,000 of them for more than a year.Ìý So, what are the consequences, what’s to be done and what are the chances of securing a national eyecare plan, which has so far been resisted by government?

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Well, throughout this programme I’m going to be talking to a wide range of eyecare specialists.Ìý But first, the people who these figures affect most of all – the still waiting patients.

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Pam Perceval-Maxwell

I have age-related macular degeneration.Ìý In my right eye it’s dry macular, for which there is no treatment but in 2021, in October, having had a rapid deterioration in my left eyesight, I was diagnosed with wet AMD, for which there is treatment – regular injections.Ìý Unfortunately, there have been several times when I have not had my injection in a timely manner and in fact, last summer I waited over 12 weeks, instead of the six-week appointment and my sight had deteriorated at that point.Ìý My big worry is when I go to bed at night am I still going to have reasonable sight when I wake up in the morning.

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Andrew Battye

It was the optician that found my wet macular degeneration and referred me to the hospital.Ìý They saw me within a few days but it was three weeks before I got my first injection and in that three weeks, I had a massive deterioration in my sight in my left eye.Ìý My first three treatments, when I did start them, I did get them at four weekly intervals, then they said they’d try me at six weeks but couldn’t fit me in for just over nine weeks, actually.Ìý It had deteriorated quite a lot by then again.

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White

Andrew Batty and before that we heard Pam Percival-Maxwell, speaking to In Touch earlier this year.

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So, let’s see if we can find the root of these delays.Ìý If you have an eye problem, who do you go to?Ìý Well, there doesn’t appear to be a tidy answer to this question, that’s part of the problem.Ìý You might go first to your GP, who would, hopefully, refer you for an appointment with a specialist.Ìý If you’ve had an accident you might end up in A&E, another potential route to referral.Ìý Or you might go directly to your high street optometrist for advice or perhaps to have your eyes tested.Ìý But optometrists tend to feel that they’re undervalued and underused in the field of eye care and that they would be able to play a bigger part in solving some of these problems of late diagnosis, delayed treatment and, in too many cases, lost vision.

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Josephine Evans is an independent prescribing optometrist, based in South East London and she’s a member of the Association of Optometrists.Ìý First of all, Josephine, what greater role do you think optometrists could play in the early detection of eye disease?

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Evans

There’s huge advantages for optometrists and the role they play because we’re located really in good accessible positions for patients, so we tend to be community based in the high streets.Ìý And we’ve got over four years of clinical training to become qualified as an optometrist.

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White

What kind of things, give me examples of the things that you could do which you don’t often get the opportunity to do?

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Evans

So, it depends on the area because commissioning happens in pockets across England but, for example, in some areas we have very well-established and successful schemes, such as a minor eye condition service and that allows us to see patients as the first port of call.Ìý So, they would come into practice and we would assess them for urgent or referral of [indistinct word] conditions and that would be covered by the commissioning that area.Ìý However, the main issue is, this isn’t national, some patients who live in different areas don’t have access to these services and therefore have to go straight to the GP or into the hospital eye service which delays their care, delays their diagnosis and then their treatment as well.

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White

I mean, do you often feel that you’re seeing people too late anyway, given that quite a lot of eye disease is preventable and the earlier it’s treated, you know, the better the chance of saving sight?

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Evans

Yes, unfortunately so.Ìý So, for example, if we conduct a routine sight test and we pick up a condition, for example, glaucoma, which can be treatable and can be stopped in its progression if treated early and well, when we refer those patients, they then have to wait months, sometimes, to be seen in the hospital eye service for treatment to be commenced versus if we could start treatment earlier on, at the time that we suspect the diagnosis in the community, we could preserve their sight much sooner.

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White

I mean, why do you think this is happening?Ìý You know, it seems daft.Ìý You have a professional skill and yet, as you say, it depends where you are in the country the extent to which you can use it?

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Evans

The main issue is that we don’t have a national eyecare strategy at the moment.Ìý So, it is such a postcode lottery and it’s really unfortunate for patients because there are advantages and disadvantages, just depending on where they live.ÌýÌý So, that’s what really need to change, we need a national community based eyecare services that can relieve some of the burden from the hospitals and provide eyecare at a really accessible point of contact for patients because we’re right on their doorsteps usually.

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White

And I gather we’re talking largely about England because this campaign is a plan for England.Ìý Some of this sort of thing works better in Scotland and Wales?

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Evans

That’s correct.Ìý So, they have different ways of commissioning their eyecare and they both have national schemes.Ìý Wales have recently reviewed their eyecare strategy and have provisions in place to allow lots of the care to move into the community.Ìý So, it’s England, mainly, which is still broken up into these different pockets across the country.

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White

The Association of Optometrists say that a lot of people are going private because of NHS delays, that it’s a choice, effectively, between saving money or saving sight.Ìý What’s your view and what’s the evidence for this?

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Evans

In a survey of a thousand optometrists the AOP found that 81% of them had patients who were forced to seek private treatment within the last six months with the alternative being the risk of losing sight.Ìý And sometimes these patients are spending their life savings on care that they’ve already paid for via taxes.Ìý So, it’s so disheartening that patients are in a position of… forced to do this because they can’t access NHS care like they should be able to.

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White

Josephine Evans, thank you very much indeed.

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Meanwhile, with eight million attendances a year, outpatient eye units in hospitals are the busiest in the country and yet the majority of them, in England, are seriously understaffed when it comes to senior consultants who are leaving faster than they can be replaced.

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Well, Professor Ben Burton is President of the Royal College of Ophthalmologists.Ìý I asked him how serious the situation of staffing with senior consultants actually was.

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Burton

We estimate that in England alone we’re short 260 consultant ophthalmologists, which, if you think about it, is about 35 hospitals with no eye department at all.Ìý So, there’s a huge gap in training.Ìý I am very pleased to see that the government is looking to address this with a workforce plan, which is an excellent step in the right direction.Ìý So far, they haven’t confirmed where the money’s going to come from or how many training posts there’s going to be but, you know, they do need long-term thinking on how to solve this problem.

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White

Why are so many consultants leaving?

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Burton

Well, I think there’s a mixture of things.Ìý There were some problems with the pension taxes, which encouraged people to leave, which, to some extent, have been addressed, so that’s good but there’s also a big problem in ophthalmology with the use of the independent sector.Ìý So, although you might imagine paying private companies to help with the waiting list is a good idea, what’s happening is that we’re paying companies to do straightforward cataracts but, unfortunately, they are mostly using NHS staff or NHS trained staff, who are then working for three times their normal hourly rate and so, unsurprisingly, are keen to go and work for these companies, instead of working for the NHS.Ìý So, we’ve now got this ridiculous situation of a huge over supply in some areas of cataract surgery, so, you can choose to have your cataract done by five different providers within a week of being referred and, at the same time, in the same area, you’ve got people on waiting lists with perhaps glaucoma or macular degeneration, their choice is not to choose between five providers, their choice is go blind on a two year waiting list or go privately.Ìý So, I’m really passionate that we need somebody to get a grip of the problem of the way we’re commissioning the independent sector and have a bigger plan for ophthalmology that is sustainable and involves things like rare conditions, research, training.Ìý So, massive changes, massive challenges.Ìý And it’s not just lack of money, the money’s going to the wrong places at the moment.

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White

Just to address another issue, which is other professionals who could help, I mean there are over 17,000 qualified optometrists in England, wouldn’t the use of them alleviate waiting lists to quite a considerable extent?

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Burton

Yeah, it definitely would and could.Ìý There’s two big issues that have been stopping that.Ìý One is the work that the optometrists are commissioned to do and the way they are funded.Ìý And the other one is there’s big problems with the IT communications and infrastructure.Ìý So, one thing that would be really helpful would be if ophthalmologists could see the tests that the optometrists have done and also, the optometrists could see our photographs and our visual field tests and have a kind of seamless integration of our notes and records.Ìý That would save a lot of duplication and unnecessary referrals, which are clogging up the system.

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White

And why can’t they, why can’t you each see each other’s information… data?

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Burton

There’s multiple, multiple IT systems that don’t talk to each other, there’s GDPR rules, there’s who’s going to fund it, there’s lack of standardisation, so one person will have one sort of scanner that records images in a different format to another.Ìý It’s a difficult problem which is probably why it hasn’t been solved.

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White

But isn’t it the case that this is less of a problem in Scotland and Wales?

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Burton

Exactly, yeah.Ìý So, Wales is looking at introducing a system where they have one computer system that optometrists and consultants and hospital blind services are on, which seems eminently sensible.Ìý And Scotland have got a much better contracting arrangement with optometrists which allows optometrists to do much more to see patients, again.Ìý One of the issues we have in the UK is that very often optometrists will see a patient, find an abnormality and if they see them again it’s at their expense, rather than being funded to check do they really need to be referred up. ÌýSo, there’s a lot of things where we’re not quite sure whether they’re going to need to be seen again and an optometrist could easily do that if they were funded to do it but, at the moment, they’re not, so they end up in a hospital which is about the most expensive way of checking whether somebody really needs to be seen or not.

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White

And so, you know, if there were two things you could change straightaway, and there are probably hundreds, what would they be, what are the key things you think need to be done?

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Burton

We need a complete change of direction on the commissioning of the independent sector, which is damaging the NHS ophthalmology service beyond belief and then we also need a joined-up plan to expand the ophthalmology workforce, integrate optometrists and IT and agree on a solution.Ìý And use the independent sector where needed but not where not needed.

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White

Professor Ben Burton.

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Well amongst the other organisations, which are backing this campaign, are the Macular Society, which provides support for people with a group of conditions which affect the largest number of older patients and Fight for Sight, which is the biggest funder of research projects into eye conditions.Ìý With me are their two chief executives.Ìý Cathy Yelf, of the Macular Society, I’m wondering what it is that you’re seeing which convinces you that we do have a crisis, which requires a national plan?

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Yelf

Well, we know that more and more people are getting age-related macular degeneration because more of us are living into our late 80s and our 90s.Ìý Most macular disease isn’t even treatable, at the moment, but that which is treatable has to be given in a really timely way – you have to have your drug injected into your eye when you need it and if you don’t get it, you will lose sight that can never be retrieved.Ìý Daily, hourly almost, people who tell us that they can’t get their injection treatment at the right time.Ìý And that’s incredibly frightening for people.Ìý But we also know that we haven’t to date seen any coherence as to how on earth is the NHS going to cope with more and more patients and there may even be a new treatment for another form, so-called dry AMD, next year and we can’t see the plan for accommodating all these patients.

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White

But national plans don’t seem to be the flavour of the month or indeed of the three years over which you’ve been campaigning.Ìý I mean you’re talking to a government which recently cancelled its cancer national plan, why would a department which feels it doesn’t need a plan for a disease which causes so many deaths agree to it for a group of diseases which are very distressing for those who experience them but not usually fatal?

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Yelf

Yes, that’s true and it is very demoralising.Ìý But we’re addressing all political parties.Ìý It is quite a powerful argument that I think we’re putting forward and we have made some progress.Ìý We have got, for example, a national clinical director for eyecare in England now, which… that was new.Ìý We have managed to persuade the government to put eyecare under the remit of one minister instead of across three ministers.Ìý So, we’re beginning to get a little bit of traction on this – we’re not giving up yet.

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White

Let me bring in Keith Valentine of Fight for Sight.Ìý Keith, I’m asking you a similar question, in a way, about some of the disparities here.Ìý Part of your campaign’s call is for a doubling of the annual budget to spend on research for eye disease, what can you say that’s likely to convince them that this is where they should be spending their money?

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Valentine

Investment in eye research and investment in the eye health system is an investment in UK Plc and in the case of this plan it’s an investment in England and England’s economic and its productivity, as much as it is an investment in the health side of people’s treatment of eye disease because, at the end of the day, we know that people that have untreated or untreatable eye disease are for more likely to be out of work and not to be economically productive.Ìý So, my general point would be and I think the point of the partnership, that these are common sense investments and they make a common-sense plan.Ìý The issue here and I think the complexities faced by the government and all four of the political parties, is how they might find a way to build a system that’s capable of delivering efficiency and value for money and, at the same time, achieving the health outcomes, the eye health outcomes, that we would all desire.

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White

You made a very interesting point in your speech which I have to be honest I hadn’t heard before.Ìý We talk a lot about the actual treatments but you made the point that the link often isn’t made when it comes to eyes between treatments and rehabilitation and how to live your life afterwards.

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Valentine

I mean it’s something that’s particularly acute for me, my daughter being diagnosed with this eye disease that I have during the lockdown and seeing what happened around her support and, you know, she’s somebody that has capital, she’s got a family that have gone blind and she knows the organisations but no real ability of the consultant ophthalmologist to give her a tangible next step.Ìý You know, it’s particularly true that if you lose a leg, if it should happen to anyone, and the consultant surgeon dealing with that would be able to give you a specific definite in system referral for rehabilitation to learn to walk again and that doesn’t, as yet, exist for people with sight loss.Ìý And, I think, everyone would agree with me that it should only be natural and efficient for the system to make sure that when people are told they’re going to lose their sight, they have a ready and easy access through the consultant ophthalmologist towards the help that they’re going to need to get on with life.Ìý And part of doing the work behind this plan is to start to propose that.Ìý It’s particularly the case with eye health because it is complex and it occurs multiple different ways within the population.

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Yelf

And the numbers, in the future, are really quite staggering.Ìý People have got to wake up to this is a very, very significant public health issue now.

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White

Cathy Yelf and Keith Valentine, ending our report.

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We had hoped to be able to put the government’s reaction to the Eyes Have It partnership’s calls for a national eyecare plan at this event and eight working days ago requested the Department of Health and Social Care for an interview with the appropriate minister.Ìý We were told it was unlikely that a minister would be available and so it proved.Ìý But we were promised a statement by the end of last week but as the drop-in meeting in parliament drew to a close still no statement.Ìý We did finally receive this, nearly two hours after the event ended:

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Department of Health and Social Care statement

We recognise primary eyecare providers have the skills to deliver a great range of services and NHS England’s transformation programme is considering how digitally enabled image sharing could help more patients be cared for closer to home and relieve pressure on secondary care.Ìý Cutting waiting lists remains a key priority and a combination of surgical hubs and the independent sector are being utilised to increase cataract surgery.

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But still no reaction to the request for a national plan.

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And that’s it for today.Ìý Your views welcome, of course, via email intouch@bbc.co.uk, voice message 0161 8361338 and our website is bbc.co.uk/intouch.Ìý

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

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