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IN TOUCH – NHS Backlogs and Avoidable Sight Loss; The CSUN Assistive Technology Conference

TX:Ìý 21.03.2023Ìý 2040-2100

PRESENTER:Ìý ÌýÌýÌýÌýÌýÌýÌýÌý PETER WHITE

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PRODUCER:ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý BETH HEMMINGS

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White

Good evening.Ìý Later tonight…

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Clip

Where is the karaoke session happening?

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Envision is answering your question.Ìý The karaoke session is taking place in platinum six from seven…

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White

You’re be glad to hear you’ll be spared the karaoke session.Ìý But we will be reporting from California on the world’s biggest display of the latest technology for visually impaired people.

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But first, an alarming report on why the numbers of those visually impaired people are rising faster than they should be in the UK.Ìý Even before covid we were hearing anecdotal reports of delays in patients receiving the eye treatment they needed to control their sight loss.Ìý Now, in response to a freedom of information request, there are figures to back up these suspicions.Ìý Clinicians have reported that more than 200 people have lost significant amounts of vision due to treatment delays since 2019, with hundreds more unreported cases suspected.Ìý In England, alone, there are over 600,000 people waiting for eye appointments, almost 30,000 of those who’ve been waiting for a year or more.

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Pam Perceval-Maxwell is worried that repeated delays to her treatment means she might lose her sight entirely.Ìý Pam, just explain your situation to us.

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Perceval-Maxwell

I have age-related macular degeneration, in my right eye, it’s dry macular, for which there is no treatment and over the course of several years I’ve lost the central vision in that eye.Ìý But in 2021, in October, having had a rapid deterioration in my left eyesight and I was diagnosed with wet AMD, for which there is treatment – regular injections – unfortunately, over the course of the last 18 months 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.

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White

And I think even in the last two weeks you were supposed to have treatment, what were you told?

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Perceval-Maxwell

I was supposed to have another appointment at six weeks on the 9th March and when I rang up to query where the appointment was, I was told there was a five-week delay.Ìý

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White

And what have you been told about the significance of you getting this regular treatment for your wet AMD?

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Perceval-Maxwell

It was impressed on me from day one that I must be available for these treatments if I was to protect the sight that I have left.Ìý My big worry, Peter, 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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White

Pam, thank you very much indeed.Ìý Andrew Battye is also joining, he’s also been diagnosed with wet age-related macular degeneration.Ìý Andrew has worked as a professional artist and so maintaining his level of sight has a direct bearing on his profound passion for painting.Ìý Andrew, again, just explain your situation to us.

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Battye

It was the optician that found my wet macular degeneration, that was in February ’22.Ìý I’d just got some new glasses, actually and I thought there was something wrong with them, so I took them back and he rechecked my eyes and I noticed some distortion on the chart, so he confirmed that it was 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 a four weekly intervals, then they said they’d try me at six weeks but couldn’t fit me for just over nine weeks actually.Ìý It had deteriorated quite a lot by then again.

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White

Andrew, thanks very much indeed.

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Farah Topia is an optometrist and clinical advisor to the Association of Optometrists.Ìý The freedom of information request that brought these statistics to the fore came from their magazine Optometry Today.Ìý Farah, first of all, why do you think these things are happening?Ìý I mean is it lack of staff; is it lack of flexibility about how and where the treatment can be offered?Ìý What is it?

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Topia

As an optometrist, you know you can have referred someone even months ago and you advise patients, when you refer them, you know, this is an urgent condition, you need to be seen within a couple of weeks and patients are ringing up concerned because an appointment’s come through but it’s not for another couple of months or so.Ìý I think it is purely a capacity issue for the NHS at the moment, in that they physically just don’t have the slots to deal with the patients that they’re seeing.Ìý Obviously, everyone’s still feeling the effects of covid and kind of recovering from that.

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White

Now both Pam and Andrew have wet AMD, which is a very common form of sight loss, particularly amongst older people.Ìý What about other forms of visual impairment – glaucoma, cataracts, many others that people are less familiar with the names of – what are you hearing or seeing yourself about those conditions?

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Topia

So, in practice seeing quite a delay with regards to cataracts, so, yeah, for a lot of patients we find that they are waiting upwards of even a year sometimes.Ìý But I mean I saw a patient last week who had been contacted four months after his referral and he was advised that there’s still another year to go in terms of the waiting list.Ìý While he’s waiting for that appointment to come through, he doesn’t feel comfortable driving, so it has a very direct impact on your quality of life.

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White

Now, of course, any form of sight loss caused by unnecessary delay is very important but given the strains under which the NHS is working, maybe you might expect these figures, which are in the low hundreds, to be even worse.Ìý Is the sector really doing that badly?

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Topia

I think even any number of people that are seen – who have avoidable sight loss, if it’s avoidable that number really should be zero.Ìý There’s over 600,000 people at the moment waiting for an ophthalmology appointment and 70% of UK optometrists have seen a patient who’s had a delay of treatment of more than 12 months.Ìý So, we’re seeing these patients back again for their route sight tests and they’ve still yet to have a referral actioned from when they were seen the year before.

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White

We asked the Department of Health and Social Care for someone to appear on the programme tonight, to discuss these figures, they told us none of their ministers were available.Ìý But in a statement they did say that more staff for the ophthalmology service have started training in 2022 and 2023, they say thousands of patients are now being seen more quickly and the number of 18 month waits have decreased by almost two-thirds since September 2021.Ìý And they also said their elective recovery plan aims to eradicate waits of longer than a year for NHS elective care by March 2025.

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What do you say to that?

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Topia

Well that’s encouraging, obviously it’s a step in the right direction…

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White

Twenty twenty-five sounded quite a long time to wait for complete success.

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Topia

I mean it takes time to train up people and to have systems in place, it does take time.Ìý With optometry you have a workforce that is already skilled to deliver care, patients are able instead of having to go to the hospital, they can be seen in optometric practice, which is more local to them, more convenient.Ìý So, I still think there is a lot that optometry can do in terms of being more involved with the care that ordinarily happens in hospitals because we have the equipment, we have the knowledge and yeah, we have the capacity to help alleviate some of these waiting lists.

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White

Let me bring in Cathy Yelf, who’s been listening to this, she’s Chief Executive of the Macular Society.Ìý Cathy, we heard there from Andrew and Pam, what are you hearing as an organisation from your members?

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Yelf

Very much the same thing and it’s heart-breaking, isn’t it?Ìý We know with macular degeneration, for example, that if vision is good at the start of treatment and treatment is given promptly and in a timely way, then there’s a good chance of people retaining good vision for many years.Ìý And there is no reason, other than organisational reasons, for people to lose this amount of vision and we hear of it, I’m afraid, every day.

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White

It’s perhaps not surprising that optometrists think that optometrists could do a great deal to help with this problem, you see this all the way round, is that the answer – perhaps people could be given treatments in the high street, there could be a move away from hospitals to the community?

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Yelf

Ophthalmology is now the biggest outpatient specialty in the NHS, it’s 10 million appointments a year.Ìý It is complicated because the licensing arrangements for these drugs mean that an ophthalmologist has to be in a supervising position when the injections are given, in case there is a rise in interocular pressure within the eye, for example, which could damage the optic nerve and so on.Ìý So, there are safety reasons that have to be considered.Ìý But at the moment, without a national approach to this we are relying on individual health boards around the country to pilot or come up with their own schemes for doing this and that will take literally years and we’ll finish up with a postcode lottery, which is what we have now.Ìý The big warning sign is that, this is a double edged sword, isn’t it, but the very first treatment for dry macular degeneration has just been licensed in the US and, of course, we hope that it will be licensed in the UK as well now that could, potentially, double the number of people who need injections because it’s also given as an injection.Ìý Without somebody really gripping ophthalmology really firmly on a national basis then the system will become even more overwhelmed than it currently is.Ìý And it’s true, of course, it does take a long time to train ophthalmologists and optometrists, for that matter, as well and we really do need a national approach to this otherwise we will have chaos in the system.

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White

And this is the national eye health strategy that you’re all calling for?

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Yelf

Yeah, so it’s a similar situation to GPs and dentists, for example, where they are all external contractors to the NHS.Ìý And it’s the same, if you like, with optometrists, that they work in commercial organisations largely in the community in the high street.Ìý And so, contracts have to be developed with these professionals, it’s got to be a commercial arrangement with them, as it is with GPs and dentists and we need to have a national approach to this, otherwise we are leaving it to individual commissioners around the country, dozens of them, making local arrangements and we don’t think that that will either happen quickly enough or with sufficient level of sustainability or equality for patients across the country.

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White

Cathy Yelf, Farah Topia, Andrew and Pam, thank you all very much indeed.

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I should also say the Department of Health and Social Care also told us they had appointed a clinical director for eye care to oversee the recovery and transformation of patient services.Ìý We did, in fact, interview Louisa Wickham who has that job.Ìý Soon after she was appointed we asked to speak to her again for this interview, she wasn’t available.

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Now if you want to know anything about what’s new in technology for visually impaired people the experts say there was only one place to be last week – the CSUN conference in Anaheim in California.Ìý Now all the big players in tech are there and so was Dave Williams, who was there representing the RNIB and indeed making a presentation himself but also, keeping an ear out for us on what’s new and what’s really likely to make a difference to blind and partially sighted consumers.

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So, Dave, welcome back.Ìý First of all, just how big is CSUN?

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Williams

The California State University Conference on Technology and Disability is respected around the world.Ìý All the big tech companies are there – your Sony’s, your Apple’s, Google, Microsoft, Amazon – and then, of course, lots of disability organisations as well.Ìý The conference is in its 38th year and it’s a real mix of presentations, exhibition hall and then sort of concurrent meetings alongside that.

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White

So, what were the highlights for you?

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Williams

The first would probably be navigation.Ìý We actually presented a paper about different indoor navigation solutions.Ìý So, there are lots of technologies that are in development that will assist blind and partially sighted people when we go into a big indoor space.Ìý But what happens when you go into a shopping centre or a big hospital – well, some of these companies are developing Bluetooth based solutions, some have got things that use your camera on your phone.

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White

When you say inside, are we talking about things so that you can actually identify individual places, like an individual shop or an individual office, or whatever it is you’re looking for?

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Williams

Absolutely, yeah.Ìý If you go into a train station or an airport and we’ve got a number of live trials, at the moment, actually, in the UK at some of those places and so this technology will tell you – there’s a staircase to your left or the lifts to your right or the gents is straight ahead.Ìý So, that’s the idea – that when you arrive at a venue, you would open an app and then you could navigate around there independently.Ìý Obviously, relying on your core mobility skills of your cane or your guide dog but then these technologies can augment that experience by giving you a bit of confidence about where you are.

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Maybe the biggest is AI, we’re hearing a lot about this in the media at the moment.Ìý Artificial Intelligence – so what if you have a big document and you struggle to read that, well there is software available that will take a picture of the document and read it, we’ve had that for a while.Ìý What we’ve not had is the ability to ask questions about it.

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Example

What are the social events happening at the conference?

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Envision is answering your question.Ìý There are several social events taking place at the conference, including:Ìý one, kick off happy hour on Monday, March 13 at Glandon Patio from 5.30 pm to 6.30 pm.Ìý Two, welcome reception on Tuesday…

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Williams

So, we heard there Cartic from Envision demonstrating his smart glasses and they’ve got this feature now, so you could take this picture of a document and ask questions.Ìý So, it might be a restaurant menu, for example, you could ask what are the vegetarian options and it would tell you.Ìý So, really exciting potential there.

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White

I mean it’s a long time to wait – that happy hour would have to be pretty good, I think.

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Williams

Well yeah, that’s a pretty early beta version I think and we hope that in practice, once these things are out to market, they’ll be a little bit quicker.

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White

They’re not cheap are they Dave?

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Williams

That’s right.Ìý So, technology is becoming more affordable but that doesn’t make it cheap.Ìý There are, of course, lots of funding schemes available and grants and all of that and people should definitely ask about that.Ìý But I think just – it’s that old thing of we are a small market so we need to find solutions that benefit everybody and I think that’s the deal with that indoor navigation technology that everybody has a problem that they go into a supermarket and they can’t find, you know, the cereal because it’s been moved or whatever, if we can find a solution that benefits sighted people as well, then we’re on to something.

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White

Talking more about the everyday things that people need help with, like flatscreens on machines where you can’t enter your pin number, things like that, did that crop up?

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Williams

It did, yeah, yeah, there is actually a lot of work going on in that area.Ìý Two companies, at least, promising accessible kiosk type solutions.Ìý So, the self-service checkout or some of the fast-food places where you go in and are expected to order on a screen.Ìý But you’re absolutely right, not everybody can cope with that and there are people for whom, actually, a specialist device is going to be the best option.

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White

One final thing, Dave, you’re good at technology, you’ve earnt your living doing it, next week we’re planning to debate whether it’s easier now or tougher to be blind in the modern world.Ìý Now I’m imaging you’d say it’s easier because of all the technology.Ìý Do you understand, though, why some people might say it’s tougher now for some reasons?

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Williams

I do, yeah, absolutely.Ìý Lots of appliances now just have these flatscreens and not just phones and tablets but your dishwasher or your washing machine.Ìý So, I absolutely do get that.Ìý My first job, in fact, was training and I understand that people need that human support as well and some people find it very stressful and anxiety inducing and we shouldn’t play that down.Ìý So, I think there is a massive role for human support, for training and skills development and all of that, it’s not just about the gadgets themselves.

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White

Dave Williams, thank you very much indeed.

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And we’d like your views on this whole debate before we talk about it next week and from all generations.Ìý Of course, we understand that the younger you are, the less you’ve got to actually compare today’s world with but you can tell us what’s good and what’s bad for your generation, whether it’s getting a job, maybe, meeting the costs of being blind or maybe you are one of those who thinks that technology is making life better.Ìý You can email intouch@bbc.co.uk, leave your voice messages on 0161 8361338 or you can go to our website for more information, that’s bbc.co.uk/intouch.Ìý

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From me, Peter White, producer Beth Hemmings and studio manager, Nat Stokes, goodbye.

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