Eye Health: National Strategy

Rupa Huq Excerpts

Wednesday 17th May 2023 Westminster Hall

[Dr Rupa Huq (Ealing Central and Acton) (Lab)]

It is a pleasure to serve under your chairmanship, Mrs Harris. I congratulate my hon. Friend the Member for Battersea (Marsha De Cordova) on a stunning speech and securing a debate on such an important subject.

Visual impairment is, in many ways, illustrative of so many of the problems that the wider NHS faces, but it is often underacknowledged and goes unnoticed. The Minister responded to my Adjournment debate on Monday, when I went through a lot of documents from our local ICB and council on the NHS. I was scouring them for mention of eye disease, but it did not seem to be anywhere in them—it tends to fall off the radar.

My hon. Friend gave some powerful statistics. There are 2 million people living in this country with sight loss today, and it is expected to be 2.7 million people by 2030 and 4 million by 2050. There are 600,000 people with age-related macular degeneration. Every six minutes someone is told they are going blind, and every day 250 people start to lose their sight in the UK. Some of these problems are intrinsic to our health service, such as the lack of joined-up-ness that she talked about between primary and secondary care, the fact that services are a postcode lottery and the pre-existing backlogs that were worsened by covid.

With 11 million out-patient appointments a year, ophthalmology is the biggest out-patient speciality in the NHS, yet it is forgotten and is often a Cinderella service. Locally, diabetic eye disease, glaucoma and age-related macular degeneration are all big issues. In Ealing, type 2 diabetes is 3.5 times more prevalent among black, Asian and minority ethnic populations than the wider population. The level of diabetes is very high in our borough, at 8.4%, and it is even higher next door in Harrow, at 9.5%—nearly one in 10 people. Diabetic eye disease is a consequence of that, and it is sight-threatening, as my hon. Friend said.

The odd thing is that primary level optometry is private practice. Specsavers is the biggest provider in the country—it sent us all a briefing for the debate—and there is Boots. In Ealing, there are also great local independents such as Eyes on the Common and Hynes Optometrists. But there seems to be a mismatch with the eye hospitals. I was lucky enough to go to Central Middlesex Hospital recently and be shown around its eye department. I also went to the A&E at Western Eye Hospital last year when I had shingles, which was interesting to see. It was a very long wait of half a day on the weekend. They were very good, but I am sure we could join all these things up better, because there seems to be a disconnect for things such as referrals.

That is why I support and am a signatory to my hon. Friend’s private Member’s Bill, the National Eye Health Strategy Bill. Having a national eye strategy is crucial to reversing a situation that has seen eye care become a Cinderella service. It was a step forward when the first ever national clinical director for eye care, Louisa Wickham, was appointed last year, but unlike with other big issues—for example, I talked on Monday about mental health, dementia and cardiovascular issues—there is no national plan for eye care. It is hit and miss, as my hon. Friend says, and the lockdowns have exacerbated all the waiting lists.

I want to flag the work of my constituent, Judith Potts. For seven years, she has been a one-man band with her charity Esme’s Umbrella, looking at the unusual—actually, it is more prevalent than we think—Charles Bonnet syndrome. The disease affects people who are losing their sight, and they see vivid hallucinations of often quite specific images—they can be swirly patterns and shapes, and they can also be gargoyles, world war one soldiers or boys in sailor suits. When that was described to me, I had never heard anything like it. We have had two receptions just across from this Chamber, in the Jubilee Room, for Esme’s Umbrella, which is now becoming constituted as a proper charity.

It was Judith’s mother, Esme, who suffered from Charles Bonnet syndrome. Judith has managed to persuade the World Health Organisation to recognise it as a condition in the ICD-11—the eleventh edition of the “International Classification of Diseases”—but there is no training for it at medical school and it is seen as a side effect of sight loss. It is estimated that the number of people who suffer from the condition is in six figures—some estimates say there could be a million sufferers in this country—yet people do not even know what to google because it is so unheard of. There are no pathways, no magic pill that can make it disappear and most people have never heard of it. More research is needed to cure the condition and to help people cope with it. There is a job to be done.

“Coronation Street” has played a big role, with the actor Richard Hawley, who was at our last reception in the autumn—I think my hon. Friend the Member for Battersea was there as well—playing the character Johnny Connor, who is a sufferer. That has done something to put the condition on the map, but I appeal to the Minister to recognise Charles Bonnet syndrome as part of a comprehensive eye strategy. Proper research needs to be funded. The trustees of the Esme’s Umbrella charity, as it has now been constituted, are highly respected people from Great Ormond Street, Moorfields and the Francis Crick Institute. They are all top consultants, but as the condition is not a recognised thing, they have to do the research on the side. That is not satisfactory. We need to persuade people, take them with us and fund the proper research.

In March, the Health Service Journal reported on a survey carried out by the Royal College of Ophthalmologists, which found that independent providers—my hon. Friend referred to this too—are having a negative effect on patient care. I mentioned this on Monday, so I hope Members will forgive me if they have a sense of déjà vu. Patient choice sounds good and we have backlogs that need clearing, but the independent sector creams off all the stuff aimed at cutting the cataract waiting list, which is low-risk, routine work—and I have to say that those patients are usually from majority white populations—when it could do out-patient appointments or follow-ups too. The NHS is left with serious and costly cases of high complexity, in which patients—typically BAME ones, I have to say—are at risk of going blind.

The Royal College of Ophthalmologists found significant staff shortages in NHS ophthalmology capacity. That is set to worsen in coming years unless immediate action is taken. Seventy-six per cent.—over two thirds of NHS eye units in the UK—do not even have the consultants to meet current demand and 80% have become more reliant on non-medical or allied professionals in the past 12 months. The capacity is missing. The equation has gone all wrong. Twenty-five per cent. of consultants plan to leave the ophthalmology workforce in the next five years. That includes those planning to retire, but we also have a mismatch, with doctors being trained in hospitals where the easy cataract stuff is gone. They are meant to get their teeth into that first and then do the complex stuff; it has all gone the wrong way.

As well as the training issue, there is an issue with the sustainability of the NHS. Tackling the backlogs is a priority, but so is sustainability and training in our health service. Dr Evelyn Mensah, an inspirational woman at Central Middlesex Hospital, argues that the status quo is leading to the destabilisation of hospital services. The inequity that has flowed means that the foundational principle of the NHS at its launch in 1948—the whole point that it is free at the point of need—has gone wrong. In other words, if patients have the easy stuff, they will be dealt with, but if they have the sight-threatening, dangerous stuff, they languish.

Dr Mensah says that the direction of travel towards the private sector, instead of

“resourcing and supporting the NHS is undermining our comprehensive free service and will exacerbate inequality.”

She asks for additional funding to support independent recovery as, right now, private providers cherry-pick the low-risk cataract work and people are in danger of going blind if they are not seen in time. These are very uncomfortable procedures on the delicate eyeball, which is susceptible to discomfort and infection. We need to save sight, as well as the low-risk stuff. As a business case, the status quo is not good value for the taxpayer; we need to do both.

The College of Optometrists argues for more mixed-mode referrals. There are record numbers in the surgical backlog, but there are also out-patient delays with glaucoma reviews, medical retina reviews and all the follow-up stuff. Diseases such as glaucoma are silent, so it is easy to put them off forever and ever, but people’s sight is threatened; we cannot postpone these things.

We need to spread the load. The whole point of ICBs is that they are meant to provide integrated care, so let us share the load, with proper guidance. In an ideal world, the work would be universal, standardised and consistent. There would be data sharing and all the systems would be joined up at the touch of a button. We could deliver eye care in a modern way, working together and contributing to the system.

Joy Hynes from Hynes Optometrists on Northfield Avenue told me:

“I would like to understand why the urgency for controlling our increasing numbers of myopic patients is not being taken seriously. The Government has no strategy for prevention of this myopic epidemic. Myopia sadly often leads to blindness and that in itself is a problem with scant resource. Understanding the gravity of this situation we have for years been successfully running a specialist clinic for myopia management. This should not be the domain of the well off but should be available to every myopic child.”

In conclusion, we cannot rewind the clock to February 2020 overnight, but let us hope that the jolt of covid is a wake-up call to connect all the different bits of community eye care, optometry and hospitals. Let us go for diversity and inclusion in the workplace, as well as equality of outcomes, so we can join up the different systems and institute a national eye health strategy. I am so proud of my hon. Friend the Member for Battersea and her Bill. Clearing the backlog is only part of the picture. Let us go for a systemic approach with a national strategy, so that sight can be saved.

--- Later in debate ---

[Neil O'Brien]

Until there is a date, there is no date, but it will be fairly soon.

[Dr Huq]

The Minister says he is open to the idea of more research. Charles Bonnet syndrome is recognised by the NHS, but it is seen as a side-effect of sight loss. Will he commit to some proper research on that?

Just to correct the record, I agree that it should be all hands on deck to clear the backlogs. I was not saying that it is either/or; it is about joining forces on cataracts.

[Neil O'Brien]

Very good. As a first step towards the research that the hon. Lady calls for, I commit to doing my own research on the syndrome that she describes, which sounds incredibly disturbing for those who suffer from it.

I hope that the range of work that I have outlined reassures hon. Members that we acknowledge and take seriously the hugely important challenges faced by eye care services. We are working at pace on these issues, and we will be doing more. I thank all hon. Members who have taken part in the debate for raising these important issues.