Prostate Cancer Treatment

Rupa Huq Excerpts

Tuesday 17th June 2025 Commons Chamber

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

Joe Biden’s recent diagnosis has to some extent put prostate cancer in the spotlight of late, but it is not just him—there is Stephen Fry, Jools Holland and Robert De Niro. More than 50,000 men in the UK and 1.4 million men worldwide are diagnosed with prostate cancer yearly, which is projected to double by 2040. With one in eight men diagnosed during their life, it is the most common male cancer. More than half of those men are pre-retirement age, such as the cyclist Sir Chris Hoy, who was diagnosed at 48, but 70-plus is the most common age.

My late dad was 69 when he was diagnosed. He left this earth just shy of his 79th birthday in August 2014, so he had 10 years. It is often said that men die with prostate cancer, not of it. With my dad, it spread to bone cancer, but pneumonia was actually the cause of death on the certificate. I miss him every day.

Treatment for prostate cancer has improved dramatically since then. One crucial breakthrough is the development of the drug abiraterone, a Great British success story discovered and initially developed in London at the Institute of Cancer Research. It is a shining example of British science leading the world and revolutionising advanced prostate cancer care.

[Clive Jones (Wokingham) (LD)]

Will the hon. Member reiterate a question that I have for the Minister? Specifically, given that abiraterone is already approved for use in Scotland and Wales, what action is the Minister taking to ensure that men in England are not disadvantaged in accessing lifesaving cancer treatments?

[Dr Huq]

The hon. Member reads my mind about the postcode lottery, which I will come to in my list of questions. I know that my hon. Friend the Minister is very sympathetic and on the right side.

Abiraterone is now a global drug. Half a million men around the world have had transformed outcomes, improved quality of life and extra years spent with loved ones.

[Jim Shannon (Strangford) (DUP)]

Will the hon. Lady give way?

[Dr Huq]

Yes, I will. What an honour to give way to the hon. Member for Strangford (Jim Shannon)!

[Jim Shannon]

I thank the hon. Lady for bringing forward this debate; she is absolutely right to do so, and I congratulate her on that. She may not be aware that abiraterone is not routinely available in Northern Ireland for men with high-risk hormone-sensitive metastatic prostate cancer, unlike in Scotland and Wales. It is primarily approved for men with advanced prostate cancer that has already spread. While it can be accessed through an individual funding request process, it is not a standard first-line treatment option. Does she agree that men in Northern Ireland and right here in England should be able to access treatment that is available in Scotland and Wales?

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[Dr Huq]

The hon. Gentleman makes a powerful point. We are seeing a theme of uneven application. The rule of law means that the law applies to everyone, so it looks like something has gone wrong here.

[Tom Gordon (Harrogate and Knaresborough) (LD)]

I thank the hon. Lady for securing this important Adjournment debate. We have heard from a number of Members who have constituents who are affected or have frustrations with the current system. I met a gentleman called David in the run-up to the general election who has metastatic prostate cancer and is not eligible for abiraterone. He asked me if we would push and do what we could in Parliament to ensure that people such as him could get the drug. He is fortunate and can afford to pay for it privately, but not everyone is in that situation. This is about ensuring that we have equality of access for everyone, regardless of their financial circumstances. Does the hon. Lady agree that we need to have another look at this issue?

[Dr Huq]

I completely agree with the hon. Gentleman that access should be based not on how deep somebody’s pockets are, but on need.

Abiraterone halves the risk of relapse. Each relapse literally costs the NHS millions—the definition of lose-lose. As many Members have pointed out, it is already successfully available on the NHS and routinely funded for use in metastatic cases in England, but sadly there is a catch: abiraterone is not available on the NHS for men with non-metastatic prostate cancer living in England.

[Danny Beales (Uxbridge and South Ruislip) (Lab)]

I thank my hon. Friend for bringing forward this very important debate for her constituents, my constituents and people in the UK. Does she agree that since this issue was last assessed by the National Institute for Health and Care Excellence, there have been significant developments, as has been mentioned by other colleagues, both in the provision of the drug in other nations and the fact that it is now available off-patent, so it is much cheaper to access? That will fundamentally change the cost-benefit analysis that NICE did previously. Does she agree that her constituents and my constituents need this drug just as much as patients in Scotland and Wales who are benefiting from it?

[Dr Huq]

I totally agree. West London needs the same as the west of Scotland, the west of Wales, and all the other bits of those other nations. Men can access abiraterone on the NHS in Scotland and Wales, but not in England, even with an identical diagnosis. It seems at best anomalous that their postcode, not their prognosis, is determining their treatment, and we all know that the NHS is meant to be free at the point of need.

I would give anything to have had longer with my dad. I was reminded of him when, like the hon. Member for Harrogate and Knaresborough (Tom Gordon), I had someone come to see me: Peter Treadgold, who came to my advice surgery and pointed out that he is falling between the cracks. He had a long-standing diagnosis, with remission, and he diligently followed all the advice. He was under NHS monitoring for 20 years because he had heightened prostate-specific antigen levels, although he was never actually offered an MRI or ultrasound scan. Last year, his cancer came back, and he was told that he would need hormone and radiation therapy; abiraterone was not offered. Peter is one of the one in three people who get the devastating news that their cancer has come back, and has been denied access to a treatment that could save or extend his life.

The first time I heard of abiraterone was when I met Peter, because as my hon. Friend the Member for Uxbridge and South Ruislip (Danny Beales) said, in my dad’s day, it would not have been cost-efficient. However, it is now a generic drug—it has gone off patent—but it is licensed only for metastatic cases. As my hon. Friend the Minister knows well, there is a complicated, convoluted process involved in getting it approved for non-metastatic cases. There is no question about the effectiveness of abiraterone. It has had one of the biggest trials known to mankind, a genuinely world-beating trial. When NHS England’s own clinical priorities advisory group plotted the clinical benefit against the net cost, abiraterone scored highest in that tabulation. It is calculated that two years of abiraterone treatment would halve the death rate for men with locally advanced prostate cancer, but we hear about budgetary challenges. I have written to the Minister and tabled questions, and have been told that NHS England has not identified the recurrent budget to support provision of the drug.

We should look long-term, at the remissions, and at the cost of chemotherapy, hospital appointments and other associated things. Those costs add up. University College London found that abiraterone would pay for itself if it were £11 a day. Do Members know what the NHS is actually paying? Does anyone want to hazard a guess? Oh, we are not doing call and response. Abiraterone costs £2.75 a day, now that it is off patent and has come down in price. That is less than three measly quid to avoid costly relapses, scans, chemo, hospital appointments and everything else—less than three little round ones to improve lives and reduce deaths. As we have heard, only people who can fork out up front for private treatment or private medical insurance currently have that option, and again, our NHS was not meant to be for private profiteering or big pharma drug pushers. People are seeing their pensions and life savings evaporate, and we are in a cost of living crisis. This drug should be universally available.

It took less than one year for abiraterone to be approved for men with non-metastatic prostate cancer in Scotland and Wales. In England, it is now three years and counting, and we still have not had a concrete resolution. Right now, abiraterone is the cheapest and most cost-effective it has ever been, and as the excellent Prostate Cancer UK put it, the postcode lottery must end. Lord Darzi’s independent investigations into the NHS found that the UK had higher cancer mortality rates than other comparable countries, and sadly, progress in diagnosing cancer at stages 1 and 2 is flatlining. Just over half of prostate cancers are caught at an early stage. That falls well short of the NHS target of 75%. I appreciate that Labour has just come into power after 14 years of the Conservative party, so it will take time to fix our health system, but we need it to be more responsive—to act early and rapidly, to use all the tools it can, and to offer preventive rather than after-the-fact care in every case. Abiraterone exemplifies all those things.

I welcome the Chancellor’s 3% real-terms increase in NHS spending to deliver the exciting plan to build an NHS fit for the future. With the 10-year plan coming soon and the national cancer strategy due this autumn, we have a real chance to deliver significant improvements for people living with cancer, so as is customary, I have a list of questions for the Minister. I will incorporate those of my hon. Friends—I think we are all friends here, even if we sit on opposite sides of the Chamber.

First, will the Minister commit to exploring ways of ensuring that additional NHS funding is used to make abiraterone available to all men who need it in England—and in Northern Ireland, as the hon. Member for Strangford (Jim Shannon) has pointed out? Secondly, will the Minister support the introduction of a national programme of screening for prostate cancer, like those that we have for comparable cancers in the United Kingdom? Thirdly, given the complexity of NHS England’s decision-making processes in relation to the availability of abiraterone—which sound like a right old bureaucratic nightmare—as the functions of NHS England are transferred back to the Department of Health and Social Care, will the Minister take steps to ensure that all decisions about access to medicine, including abiraterone, are timely and transparent? I know that she has had a long career in the NHS, and as I have said, she is on the side of the angels.

Fourthly, will the Minister commit to publishing an equality impact assessment, given the disturbingly disproportionate effect that prostate cancer is having on black men, who are more likely to develop it and to receive a late diagnosis, and less likely to receive the right treatment? I am doing this partly for Dad, who is watching from somewhere up above, but also for the black and minority ethnic men who are implicated here and now. This is the second time that you have been in the Chair, Madam Deputy Speaker, when I have been talking about health inequalities since Friday, when we discussed assisted dying. You have chaired both debates excellently.

Fifthly, in the light of the lengthy approval process, will the Minister assess the adequacy of the funding formula model—we have NICE and we have the Medicines and Healthcare products Regulatory Agency, and it all seems a bit knotty—and consider whether novel pharmaceutical treatments could be produced cost-effectively, especially, as my hon. Friend the Member for Uxbridge and South Ruislip said, when they come off-patent. I am arguing for simplification in cases in which drugs are already prescribed for limited use and there is a credible case for expanding their application to a generic treatment. We are halfway there; we just need to go that little bit further.

Prostate Cancer UK estimates that 672 men die prematurely each year because we have no access to abiraterone. Each week that this continues, 13 men in England will die from a cancer that could have been treated cheaply had they lived in Scotland or Wales. Labour is the party of the NHS, and a Labour Government introduced the UK’s first dedicated cancer strategy; so let us go for this win-win for all, end the iniquitous, unjust postcode lottery, celebrate the best of British science, and widen access to abiraterone for all those who need it, not just those who can afford it.

Terminally Ill Adults (End of Life) Bill

Rupa Huq Excerpts

Report stage
Friday 13th June 2025 Commons Chamber

[Calum Miller]

I will not give way.

Only by having the assessment of the palliative care system that is proposed in amendment 21 can we be confident of knowing whether access to palliative care is sufficient. If we are to provide a true choice at end of life, that is critical.

I also stand in support of amendments 103, 104 and 42. Amendments 103 and 104 would give this House a say over the key decisions that still remain to be taken on the implementation of the Bill. Given the significance of the Bill and the importance of the many questions still to be resolved, these amendments are critical.

Amendment 42 would ensure that we do not career towards the enactment of this Bill in four years whether or not the system is ready to operate safely and fairly. Taken together with amendments 21, 103 and 104, this would ensure that this House has the chance to consider whether those at end of life can access the full range of support, advice and protections intended by the Bill, and which they deserve from palliative care services across the country.

Like so many in this House, I have direct personal experience of the issues addressed by the Bill. My father was diagnosed with stage 4 cancer in May 2002. Over seven weeks, he and my family benefited from the incredible care of our local hospice. Sharing my dad’s life, care and death has shaped me, so I fully understand why so many of my constituents have asked me to vote on this legislation in the light of their and their loved ones’ experience.

Yet our task is to legislate for a new system that will affect thousands of people and society as a whole. However this House votes on this Bill, our debates must result in a new focus on the provision of palliative care, so that all people at end of life truly have options in the management of their care and death.

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

I rise to support amendments 34 to 36 and new clause 6, tabled by my right hon. Friend the Member for Walsall and Bloxwich (Valerie Vaz), who sadly cannot be here today.

Health inequality shapes life expectancy and outcomes —covid deaths illuminated that—but it is absent from the Bill. A younger me would have been 100% behind this Bill. I am very pro body autonomy when it comes to abortion, but 10 years of being an MP has exposed me to coercion, duress, the billionaire price of London property, and elder abuse. It is no coincidence that, like me, the majority of London MPs and of black and minority ethnic MPs oppose the Bill.

Let us look at amendment 34. The experience of my aged parents—now no longer with us—opened my eyes to a world of pills, incontinence pads, hoists, power of attorney, key safe boxes and carer worries. I saw how non-native English-speaking pensioners—I am not talking about Welsh speakers—have their agency denied, perhaps unconsciously, by health professionals in a stretched system. My mum’s GP had a clear contempt for her accented words. At every appointment she would say to her, “One question only”. As my mum grew frailer and began to lose the power of speech, she reverted to her mother tongue and was seen by hospital teams as an annoyance, a time waster, and bed blocker. Similarly, the disabled are often written off. People cannot see beyond the wheelchair or the non-verbal. Amendment 34 would place a duty on the chief medical officer to provide information at every step of the way

[Jess Asato]

On that point, will my hon. Friend give way?

[Dr Huq]

Will I get more time? [Laughter.]

[Madam Deputy Speaker (Ms Nusrat Ghani)]

indicated assent.

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[Dr Huq]

I totally agree. We know that Esther Rantzen and Jonathan Dimbleby want the Bill to be implemented, but our role is to be voices for the voiceless, so I totally agree with her.

As opposed to the vague, ever-changing qualifying criteria that are held up as safeguards, at least these amendments would put ethnic minority people on the board: new clause 6 says that if they are on the ward, they should be on the board as well. The Bill seems to have neglected them altogether, so the new clause would provide real protections.

We know that in a cost of living crisis, assisted dying could be quite attractive. BAME communities have lower disposable household incomes than standard households, and during a cost of living and housing crisis, it is possible to imagine relatives wanting to speed up granny or grandad’s probate—or naani maa or dadima, even—to get a foot on the ladder.

[Lizzi Collinge]

On that point, will my hon. Friend give way?

[Dr Huq]

No, because I will not get any more time.

Given the cost of care, people could convince themselves that elderly relatives would be better off out of the way, in order to get the younger generation on the ladder.

We know from the experience of other places that once assisted dying is allowed, the scope broadens—depressed 12-year-olds in Holland can get it—and the incentive to fix palliative care will lessen. Why now, with the state of the NHS? What of Suicide Prevention Week? Yes, we know that public opinion is in favour of assisted dying, but public opinion also supports bringing back hanging.

[Naz Shah]

On that point, will my hon. Friend give way?

[Dr Huq]

No, I am not giving way.

At my advice surgery, people have pointed out the unfairness of the £10,000 cost of Dignitas. We know that the status quo is imperfect, but let us not remedy it with something that will make things worse. We need to get this 100% right if we are going to do it all.

Although well intentioned, the Bill has too much room for error, manipulation, misapplication and unintended consequences. Six months to live is impossible to predict and, with life and death, it is too late to change your mind after the latter has happened, is it not? This week, 1,000 doctors have argued that it will widen inequalities and it is simply not safe. These amendments strengthen the Bill by taking ethnic minorities into account, when hitherto they have been completely unacknowledged by it. They must be incorporated into any assisted dying legislation, but the best thing of all would be not to rush down this road with indecent haste in the first place, because it is so littered with obstacles.

NHS Funding: South-west

Rupa Huq Excerpts

Wednesday 11th June 2025 Westminster Hall

[Several hon. Members rose—]

[Dr Rupa Huq (in the Chair)]

Order. Given how many people wish to speak, we will start with a two and a half minute limit.

--- Later in debate ---

[Andrew George (St Ives) (LD)]

It is a pleasure to serve under your chairmanship, Dr Huq. I congratulate my hon. Friend the Member for Torbay (Steve Darling) on the debate. I will try, in my remaining two minutes, to cover four subjects very quickly. The first is about the fair funding question or whether the funding to an area is sufficient. The hon. Member for Truro and Falmouth (Jayne Kirkham) rightly referred to the seasonality of the pressures and the rural nature of the geography, but in Cornwall there is also the issue of the peninsularity of the geography. People cannot call on an emergency service to the north, south or west in a place such as Cornwall and therefore we need to make provision for services so that they can cover all eventualities. Also, this year, during the settlement process, people are talking about cost improvements within the ICB spending programme over the future year. In Cornwall, it is a cost improvement—the rest of us might describe it as a cut in services—of £108 million, which is about 7% of the budget overall. That will create tremendous pressure in areas such as ours.

The second issue is value for money estimates. I visited a brilliant project very recently: the Helston Gateway project, which has created a new GP surgery across 20 consultation rooms, and achieved that on the basis of a building cost of just £1,400 a square metre, which is half the cost that people would get if they went to private sector contractors doing it through NHS development programmes and certainly significantly less than in the private finance initiative programmes of the past. I strongly urge Ministers to look at such brilliant initiatives as a brilliant way to provide services.

The third issue is stopping private sector organisations cherry-picking the profitable parts of the NHS and therefore undermining acute sector trusts. Finally, I would welcome clarity as to why the acute trust in Cornwall is not having its debt written off, unlike other provider trusts and ICBs.

[Dr Rupa Huq (in the Chair)]

The aim is to take the three Front Benchers from 5.09 pm, which means that the time limit is dropping down to two minutes each.

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[Several hon. Members rose—]

[Dr Rupa Huq (in the Chair)]

Order. I think that someone will probably end up falling off the call list; there are people standing to speak who were not on the list and who were not standing at the beginning of the debate. Let us see how we go.

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[Several hon. Members rose—]

[Dr Rupa Huq (in the Chair)]

Order. I am afraid that we will now move on to the Front Benchers, starting with the Liberal Democrat spokesperson.

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[Alison Bennett]

My hon. Friend makes a really good point. It is vital that when we look at per head of population funding, we think about the different factors that actually drive up the true cost of delivering healthcare across the country, which obviously varies by region.

On ICBs, I will press the Minister on three points. First, on the timescale for cuts to be delivered by ICBs, they have to be completed by the end of 2025. The Sussex ICB had about three weeks to make that initial submission to the Department. Does the Minister think that those timescales are realistic and achievable? Secondly, what will the cost of the redundancies be for ICBs? Has that calculation been done? For Sussex, we are looking at more than half the workforce losing their jobs. Thirdly, what is the impact assessment for patients and the service that they will receive as a result of cuts to ICBs?

For too long, social care has been treated like the back door of our public services. It has been overlooked, underfunded and taken for granted. That must change. That is why we must once again ask for more urgency on social care reform. I believe that personal care should be free at the point of use, just like the NHS—

[Dr Rupa Huq (in the Chair)]

Order. I call the shadow Minister.

Parkinson’s Awareness Month

Rupa Huq Excerpts

Thursday 1st May 2025 Commons Chamber

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

My hon. Friend is making a powerful speech about this very complex condition. He mentioned Rory Cellan-Jones, who is well known as a BBC technology correspondent and, as the person who houses Sophie from Romania, a famous dog lover. He is my constituent in Ealing.

I totally agree with my hon. Friend; the “Movers and Shakers” podcast, which won the Broadcasting Press Guild’s best podcast of the year award, has shown with such humanity and warmth the ups and downs—a lot of downs—of this very sad condition, which is growing. I assure the 153,000 sufferers in this country and the 10 million worldwide that today’s attendance is a reflection not of the importance of this debate, but of electoral events outside this House. Does my hon. Friend agree that the Parky charter to encourage more research into this terrible condition that afflicts so many, which Rory lobbies me quite often about, deserves Government funding? I hope that my hon. Friend the Minister on the Treasury Bench is also listening.

[Graeme Downie]

If Rory has already told my hon. Friend a little bit about the Parky charter, she is about to get a repeat. On World Parkinson’s Day, the Movers and Shakers group brought hundreds of people with Parkinson’s together in Old Palace Yard. Those people sang with one voice, in a reworked version of “I Will Survive”, their demands to have the Parky charter adopted. I will spare the House my singing voice, but that charter is a bold five-point plan backed by the three major Parkinson’s charities in the UK. It is not a wish list; it is a road map to dignity, and I will take some time to outline those five demands.

The first demand is for speedy specialists; people referred for a possible Parkinson’s diagnosis should see a consultant within 18 weeks and have annual reviews thereafter. The second is instant information; a Parkinson’s diagnosis should be accompanied by immediate, clear and accessible information. The third is the Parkinson’s passport, a tool to communicate patients’ needs across all healthcare touchpoints. The fourth is comprehensive care; every person with Parkinson’s should have full access to a multidisciplinary team of specialist nurses, physiotherapists, and occupational and speech therapists. The fifth is the quest for a cure—a determined and funded national commitment to support Parkinson’s research. These are not unattainable dreams; they are basic standards of decency, fairness and evidence-based healthcare.

I will start with the first two demands, which are diagnosis and information. Currently, neurology services in England are seeing only about half of patients within the 18-week target, and the waiting list for neurology services now exceeds 230,000. The situation in Scotland and Wales follows a similar pattern of long waiting lists. In my constituency, NHS Fife has a median wait for a first neurology appointment of 31 weeks, and nine out of 10 people are seen within 87 weeks. In contrast, next door in Forth Valley—which is also part of my constituency —nine out of 10 people are seen within just nine weeks. There are currently 1,836 people waiting to see a neurologist in Fife, and 403 in Forth Valley. It can never be acceptable for a person’s postcode to dictate the quality of care they receive.

As part of my preparation for today’s debate, I heard from someone who has been diagnosed with young onset Parkinson’s disease at the age of just 47, just a few years older than me. He told me that when his GP identified symptoms, he was referred to his neurology service urgently—I underline the word urgently—and that the expectation from his GP was that “urgent” meant that he would be “seen within days”. When he had not heard from the hospital five days later, he called to check that it had received his referral, and was told that the person at the top of the waiting list had been waiting for 39 weeks so far—39 weeks so far for an urgent appointment.

Women’s Health

Rupa Huq Excerpts

Thursday 27th February 2025 Westminster Hall

[Several hon. Members rose—]

[Dr Rupa Huq (in the Chair)]

Everyone who wants to speak should be bobbing, because we will be calculating the time limit depending on how many there are.

[Alice Macdonald (Norwich North) (Lab/Co-op)]

It is a pleasure to serve under your leadership, Dr Huq. I thank my hon. Friend the Member for Hastings and Rye (Helena Dollimore) for securing this important debate. As we have heard for far too long, women have been paying the price of an NHS that simply is not working. Women know that; in a survey that I saw, half of women said that they believed that their health was treated as second class.

Our economy is also paying the price. There are many areas that we could mention, but I want to focus on one in particular: the often very challenging journey that people experience when trying to have a baby. More than 3.5 million people in the UK go through some kind of fertility challenge, and that obviously has a huge impact on women. It can happen for a variety of reasons and is often heartbreaking. There is no one-size-fits-all approach to addressing fertility, but the National Institute for Health and Care Excellence guidelines are clear that, for women under 40 with a clinical diagnosis requiring in vitro fertilisation, or with unexplained infertility for two years, three NHS-funded cycles of IVF should be offered. The guidelines also recommend that women aged between 40 and 42 should be offered one cycle of IVF on the NHS, subject to some conditions.

Yet the reality is a postcode lottery. It is down to local integrated care boards to decide their approach, and only around a quarter of ICBs in England offer a full three cycles. The east of England, where my constituency is, has the lowest proportion of NHS-funded cycles, and my own ICB of Norfolk and Waveney offers two cycles. In other areas—north-east London, for example—the full three cycles are funded, whereas in areas such as Hampshire only one is.

Recent data tells us that fewer than 27% of IVF patients receive NHS funding nationally. When we think about our NHS, that is a huge anomaly. It means that most patients are paying for their treatment. Other factors also come into play: inequalities are stark when it comes to access and outcomes for black and ethnic minority patients, as well as for those in female same-sex relationships.

The postcode lottery needs to end. We must address those inequalities in access to NHS funding. There also needs to be greater education for healthcare professionals around fertility, regarding diagnosis and treatment, and for people themselves, so that patients have the choice and know what to do when it comes to their own fertility.

Beyond medical treatment, there is also not enough support in the workplace. We really need a whole-of-Government approach to this issue. It is not just about the Department of Health and Social Care; there are so many other areas, including, importantly, the Department for Work and Pensions. There is no legal right to time off for fertility treatment and currently, under the Equality and Human Rights Commission’s code of practice, fertility treatment is compared with cosmetic dental surgery. That means that many employers regard fertility treatment as a “nice to have”—an elective choice. Instead, it should be treated as a medical procedure that is needed.

I have heard stories of women losing their jobs simply because they have attended an IVF appointment. That needs to change. That is why I am campaigning, with Fertility Matters at Work and others, for a change in the law, so that people—women, in particular—have a right to paid time off for fertility treatment. I have met the Minister for Employment, my hon. Friend the Member for Birkenhead (Alison McGovern), to discuss the issue, and I welcome the continued engagement with the Government. I hope the Minister will meet us to discuss those demands. Many companies, including Centrica, E.ON and Cadent, already give women time off because they know it makes sense for productivity and happiness at work. Almost one in five people undergoing fertility treatment end up leaving their jobs because of the impact.

I also want to touch on miscarriage, another aspect of the journey; I know that my hon. Friend the Member for Walthamstow (Ms Creasy) will mention it as well. We need a right to time off for miscarriage before 24 weeks. It causes huge trauma, and women do not recover from it straight away. They need to be given time.

In the 30 seconds that I have left, I want to touch on gynaecology in my area of Norfolk. The situation is dire: we have the worst wait for gynaecology treatment in England. We are nowhere near the 92% target of 18 weeks: the figure is 44% in Norfolk and Waveney. Research from the House of Commons Library shows that more than 1,000 patients have been waiting for more than a year in Norfolk and Waveney, and that has a massive impact on women’s health.

I have to stop there. I wanted to talk about women’s health hubs, but I am sure that others will. There are so many issues to discuss, but when it comes to fertility and gynaecology, we simply cannot wait. Our manifesto promised that we will not neglect women’s health again, and I am sure that we will live up to that promise.

[Dr Rupa Huq (in the Chair)]

With a time limit of four minutes—the clock is counting backwards—I call Jim Shannon.

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[Wera Hobhouse]

I could not agree more. We already have a crisis, which that will only exacerbate, so I thank my hon. Friend for rightly highlighting that issue.

My Bath constituents are at particular risk. A recent report said that appointment waits have doubled since the pandemic—another serious trend that the Government need to look at. A constituent recently reached out to me about the length of time it takes to get an endometriosis diagnosis in the NHS, which has already been mentioned today. That is not only a problem in Bath; far too many women wait far too long. The Government need to look at that.

In better news, the national maternity survey 2024 found that Bath’s Royal United hospital received a top Care Quality Commission rating over its treatment of patients. The survey found that those giving birth felt confidence and trust in staff during their care at the RUH. There was also praise for the dignity and respect people that were treated with. I am grateful to the RUH and all its staff for setting such a brilliant example, and offer them my congratulations.

In such a debate, I cannot, as chair of the eating disorders APPG, leave out eating disorders. Although they affect more women than men, it is not only women who suffer from them. One issue of particular concern is online platforms recommending harmful eating disorder-related content to young users. The Center for Countering Digital Hate, whose representatives I met this week, recently published research on the dangerous eating disorder videos recommended by the YouTube algorithms. It set up an account for a 13-year-old girl searching for body image and dieting content, and found that, of the next videos recommended by the YouTube algorithm, one in four was harmful eating disorder content. That is alarming.

I urge the Government to look into that and to hold these powerful digital platforms to account. In 2025, it is not acceptable that there are continuing disparities in women’s health and, in particular, young women’s health on this issue. I urge the Government to take action.

[Dr Rupa Huq (in the Chair)]

I am sorry to do this, but I am imposing a newly reduced time limit of three and a half minutes.

--- Later in debate ---

[Dr Evans]

I am really sorry; I am tight on time. Question No. 4 is, could the Minister kindly clarify, confirm and commit to that promise? If not, why not?

On the menopause, when the women’s strategy was announced in 2022, the then shadow Health Secretary—now the current Health Secretary—said:

“I challenge the Secretary of State to go further than the proposal he outlined to train incoming medical students and incoming doctors. What plans do the Government have for clinicians who are already practising? We need to upskill the existing workforce, not just the incoming workforce. However, let us be clear: informing clinicians is no good if we do not also improve access to hormone replacement therapy, so where is the action in the strategy to end the postcode lottery for treatment?” —[Official Report, 20 July 2022; Vol. 718, c. 977.]

As we are now eight months into the Labour Government, question No. 5 is, when will the strategy document he talked about be produced and presented to the House? Has he made an assessment since July 2024 of HRT medication access in terms of locality?

Turning to workforce, we know that the demand for women’s services is outstripping the supply of generalist and specialist support. The Royal College of Obstetricians and Gynaecologists has highlighted ongoing problems with maternity workforce staffing and agreed that the NHS long-term workforce plan was a good first step on the way to properly staffed maternity services. Therefore, question No. 6 is this: we know that the Government will be looking at a refresh of the plan this summer, so will the Minister give an undertaking today that women’s health will be a priority in both primary and secondary care? Will she update the House on the obstetrics workforce planning tool, which the DHSC commissioned to help maternity units calculate staffing requirements, and when it will be rolled out across the country?

Given that time is tight, I will close by saying that I have heard it said that a healthy woman means a healthy family, a healthy community and a healthier world. That is hard to dispute that; it is now for the House to deliver it.

[Dr Rupa Huq (in the Chair)]

Finally, for what we think is her first outing as a Minister in Westminster Hall—although she is a veteran of the Chamber already— I call Ashley Dalton.

[The Parliamentary Under-Secretary of State for Health and Social Care (Ashley Dalton)]

It is a pleasure to serve under your chairship, Dr Huq. I congratulate my hon. Friend the Member for Hastings and Rye (Helena Dollimore) on securing this really important debate on women’s health. She and all Members who have participated today have raised a number of important points.

Let me begin by agreeing that reading the Ockenden review is harrowing, and progress on women’s health has been far too slow. I want to address some of the key issues that Members have raised; I will attempt to cover as many as I can, but if I miss anything, please get in touch, and I will endeavour to fill any gaps after the debate.

My hon. Friend the Member for Hastings and Rye raised the story of our very good friend Margaret McDonagh and how her experience feeds into the medical misogyny that has been highlighted on a number of occasions. In addition, it was very powerful to listen to my hon. Friend the Member for Washington and Gateshead South (Mrs Hodgson), who put an important focus on women’s voices and said how important it is that those are heard in this space. Those voices can lead to the important cultural shift that my hon. Friend the Member for Stafford (Leigh Ingham) raised and that underpins all of this.

The hon. Member for Strangford (Jim Shannon) and my hon. Friend the Member for Cumbernauld and Kirkintilloch (Katrina Murray) spoke about the devolved Governments. We are committed to ensuring that we have closer working between the UK and devolved Governments so that we can share insight and best practice and cut waiting lists right across the UK.

My hon. Friend the Member for Cumbernauld and Kirkintilloch and the hon. Member for Wimbledon (Mr Kohler) raised issues relating to eating disorders and women in online content. The Government inherited a broken NHS, in which patients wait too long for eating disorder treatment. The 10-year plan will overhaul the NHS, and the Online Safety Act 2023 will prevent children from accessing harmful online content on eating disorders.

The hon. Member for Canterbury (Rosie Duffield) raised the differences in heart attack symptoms between men and women. NHS staff can now access guidance through the British Heart Foundation, and there are learning sessions available to support training. NHS England ensures that there is clear messaging on atypical symptoms in women in all public campaigns, and training on heart attacks and the identification of gender and sex are a core part of the cardiology curriculum. The hon. Lady will be aware that the National Institute for Health and Care Research has a very clear definition of sex and gender, which has an important impact on delivering the right healthcare to everybody.

I was really interested to hear from my hon. Friend the Member for Dudley (Sonia Kumar), who has expert knowledge of perinatal pelvic health services, which are being rolled out across England to ensure that women have access to physiotherapy for pelvic health issues during pregnancy and for at least one year after birth. Those services incorporate a range of interventions aimed at improving the prevention and identification of perinatal tears and other perinatal conditions.

The Chair of the Women and Equalities Committee, my hon. Friend the Member for Luton North (Sarah Owen), spoke about the Committee’s recent report, which we welcome and take extremely seriously. We are grateful to everyone who gave their time and expertise to the inquiry, and to the Committee for its thoughtful recommendations. My Department has looked closely at the findings, however chunky they are, and has worked with NHS England to consider the recommendations and develop a Government response. I assure her that it will be published very soon.

The hon. Member for Epsom and Ewell (Helen Maguire) spoke about contraception. Let me make one thing really clear: we are committed to ensuring that the public receive the best possible contraceptive services, which are vital in helping women to manage their gynaecological health. Since 2023, the NHS Pharmacy Contraception Service has allowed pharmacists to issue ongoing supplies of contraception that have been prescribed by GPs and sexual health services. That service was relaunched in December 2023 and will be continued.

We have also talked about fertility issues. Access to fertility treatment across the NHS has been varied across England, and funding decisions are made by integrated care boards, based on the clinical needs of the people they serve. We expect those organisations to commission fertility services in line with the guidelines set by the National Institute for Health and Care Excellence. We recognise that provision is variable across England, and we intend to support ICBs to implement the updated evidence in the revised guidelines to benefit all affected groups.

We recognise the significant physical and psychological consequences of birth trauma and the devastating impact it has on women. I thank hon. Members for their contributions to the report of the APPG on birth trauma—the hon. Member for Canterbury was intrinsic to it. The Government will ensure that lessons are learned from the recent inquiries and investigations, including the APPG report, and that the experiences of women and their families are listened to and woven into our efforts to improve services.

For too long, women have been let down by their healthcare. The system is broken—it does not work for them. This Government are committed to fixing women’s health as a key part of building an NHS fit for the future. As a first step, we have delivered 2 million more appointments since July, in line with our manifesto commitment of delivering 2 million more appointments in the first year. We have achieved that seven months early. That includes appointments for breast cancer care, for gynaecological conditions such as endometriosis and for many other conditions.

However, we are still nowhere near satisfied with the state of women’s healthcare. Kate’s story, which my hon. Friend the Member for Hastings and Rye shared, is testament to that state.

New Hospital Programme

Rupa Huq Excerpts

Wednesday 22nd January 2025 Westminster Hall

[Dr Rupa Huq (in the Chair)]

I will call Dr Kieran Mullan to move the motion, and then I will call the Minister to respond. As is the convention with these 30-minute wonders, there will not be an opportunity for the Member in charge to wind up.

[Dr Kieran Mullan (Bexhill and Battle) (Con)]

I beg to move,

That this House has considered the New Hospital Programme.

It is a pleasure to serve under your chairmanship, Dr Huq, for a debate that is very timely in the light of the statement of the Secretary of State for Health and Social Care this week. My remarks will focus on three hospitals that serve my constituency as part of the East Sussex healthcare NHS trust: Eastbourne district general hospital and Conquest hospital, which are situated outside my constituency but are major secondary care providers for my constituents, and Bexhill community hospital.

As part of the new hospital programme announced by the previous Government, Eastbourne district general hospital is due to be entirely rebuilt, and Conquest hospital is set to be reorganised and the structure improved to ensure that it is fit for the future. Alongside creating additional in-patient wards and improved parking facilities, the plans include expanding the emergency departments at Eastbourne and Conquest, improving access to cardiology and ophthalmology services, and redeveloping out-patient theatres, endoscopy and diagnostic services.

Plans to upgrade Bexhill community hospital are also included in the programme, equipping it to deliver more services locally. Currently, only 53% of space in the hospital is allocated to clinical space. Once that work is complete, that will increase to 70%. To reflect increasing demand for care, the plans will also increase the number of hospital beds by 13%, the number of single rooms as a proportion of hospital space from 18% to 70%, and the number of out-patient consulting rooms by 28%.

Having worked in the NHS as a doctor in A&E for a number of years before becoming an MP, I know the difficulties that can arise from working in buildings that are in need of improvement. The physical infrastructure of the building is outside the control of frontline staff, so they often have to do whatever it takes to make it work, but it would be better if they did not have to. I think the Minister would agree that despite those circumstances, our healthcare staff work tirelessly, and we owe it to them to deliver better infrastructure.

Whatever the new Government may say, progress on the new hospital programme was being made under the previous Government, despite the challenges presented by the pandemic and the inflationary pressures on construction costs as a result of the war in Ukraine. The programme was incredibly ambitious but remained a significant commitment to investment in hospital infrastructure.

During the 2024 general election, the Labour party committed to delivering the new hospital programme. Candidates up and down the country made pledges to deliver on the programme, but this week, the Health Secretary broke that pledge at the Dispatch Box by moving the goalposts, as a result of which many constituents in Bexhill and Battle will not see the benefits of the programme until 2039 at the earliest.

--- Later in debate ---

[Dr Mullan]

I do not have to let anybody intervene, but I will let you intervene to make a point about your hospitals. If there continues to be a back-and-forth, I will not let anybody intervene—this is my speech and I will make my points.

[Dr Rupa Huq (in the Chair)]

Order. We have had the word “you” a few times, which refers to me as the Chair.

[Dr Mullan]

There is not time for a continual back-and-forth in a 30-minute debate, so I will make some more progress.

When it comes to comparing the record of the NHS, the performance of the NHS under Labour in Wales, across many of the metrics that Labour Members have criticised us for, is actually worse than the record of the NHS elsewhere. That is because across England, Scotland and Wales—this is why I hope we can come to some agreement—we not only had the pandemic but face an increasing demographic challenge.

The SNP, Labour and the Conservatives, in the three areas in which we respectively have responsibility for health, are seeing considerable challenges that all of us are struggling to manage, as the Labour party will now struggle to manage them. As was the case when Labour was last in office, capital spending is often deprioritised when budgets are challenged, and decisions are made that might make sense in the short term but that also create long-term pressures.

The issue that we are debating is nothing new. Members from both sides of the House agree that our hospitals need modernisation, with 42% of the NHS estate having been built before 1985 and 14% of the estate pre-dating the NHS.

--- Later in debate ---

[Perran Moon]

I thank the hon. Member for giving way. I appreciate that he does not want this debate to be political, but so far it has been all about politics. If we want to have a debate about the state of the NHS and how we transform it, it must be a level debate.

In Cornwall, we have one general hospital, but we are very fortunate that it is in the first phase of the programme because it is a women and children’s unit, which we have a desperate need for. It was originally promised by the former Prime Minister, Boris Johnson, more than 10 years ago, but nothing came to fruition. We have been waiting a long, long time for it.

I fully accept that government is about choices. We have had to deal with—whatever we want to say; however we want to position it—a number of different challenges since we came into government—

[Dr Rupa Huq (in the Chair)]

Order. The Clerk is frowning at me, because this is a bit long for an intervention.

[Perran Moon]

Does the hon. Member agree that we now have a coherent programme—however long it is for—to implement those changes?

[Dr Mullan]

That remains to be seen; we will have to see what the Office for Budget Responsibility says in March about the planned public expenditure limits.

To be clear about taking interventions, I am very happy to debate things, but this is a 30-minute debate in which the primary focus is on the person who secured the debate. The Minister will get a chance to make those repeated points, so I will not let anyone else make another intervention. I was happy to let people make interventions, because I am keen for you all to champion your local hospitals, but if you are not willing to play ball with me—

[Dr Rupa Huq (in the Chair)]

Order. Avoid the word “you”—that is one to steer clear of.

Rare Autoimmune Rheumatic Diseases

Rupa Huq Excerpts

Tuesday 10th December 2024 Westminster Hall

[Jim Shannon]

As my hon. Friend often does in these debates, he brings forward a reminder of why this debate is important and why we need to raise awareness. It is about giving confidence to people out there who may have these diseases and may think that they are fighting this battle all on their own, but are not. We need to raise awareness among NHS staff. It is impossible to know about every rare disease, but it is good to recognise the symptoms and to be able to point people in the right direction.

Rare autoimmune rheumatic diseases are a range of chronic, currently incurable conditions in which the body’s immune system damages its own tissues, often in multiple organs throughout the body simultaneously. That is a lot of words but, to use a phrase that we would say back home, it means that they come at a person from all sides. They can lead to tissue or organ damage that, in some cases, can be fatal. We cannot ignore the fact that that can be fatal and the importance of responding in a positive fashion.

At present, the outcomes are not good enough for people living with rare autoimmune rheumatic diseases: they wait too long for a diagnosis, have variable access to specialist care and cannot always access help and support when they need it. In any debate that we have about ill health, we often say that early diagnosis is important, but so is having access to specialist care. It is important that NHS workers are able to notice something that may be unusual and not something that they see every day. It is also important that the care, help and support that people need is available when they need it. Preliminary data from the Rare Autoimmune Rheumatic Disease Alliance’s soon-to-be-released 2024 patient survey found that the average time to diagnose from symptom onset was two and a half years—it is that long before anything happens. In those two and a half years, people suffer, worry themselves sick and wonder, “Am I going to get out the other side?” The data shows that 30% of patients waited five years for a diagnosis from symptom onset.

Rare autoimmune rheumatic diseases impact on around 170,000 people in the United Kingdom of Great Britain and Northern Ireland. Hon. Members may not recognise some of the diseases, but they include Behçet's disease, lupus, myositis, scleroderma, Sjögren’s syndrome and vasculitis. They can affect many parts of the body—the joints, the skin, the lungs, the kidneys or the heart—and often require cross-medical expertise. That is just a small number of the things that come the way of 170,000 people across the United Kingdom. Unlike the vast majority of rare diseases, the conditions occur predominantly in adult life and are predominantly non-genetic. That means that people do not need to have a history of them: they can come out of the blue.

The Rare Autoimmune Rheumatic Disease Alliance, a group made up of clinicians and charities, such as Lupus UK, Vasculitis UK, Scleroderma & Raynaud’s UK and Sjögren’s UK, has set out a number of key solutions to improve care for RAIRDs. They include strengthening existing specialised networks and setting out what good care looks like through a rare disease equality standard. It has also stressed that it is vital that rare disease is not forgotten in upcoming policies such as the NHS’s 10-year plan, which I will refer to later. In that plan, it is really important that we—by which I mean the Government and the Minister—can give hope to people who suffer from those diseases, and it is really important that they do not think they are on their own. The evidential base response from the Minister would give them that assurance, and it is important that the progress made to date by the UK rare diseases framework is built on. That is my first question: is the rare diseases framework part of the NHS 10-year plan?

I want to share an example that has been highlighted to me of someone who has felt the personal impact of rare autoimmune rheumatic disease. Zoi lives with a life-threatening RAIRD, granulomatosis with polyangiitis vasculitis. In her words, she is “lucky” because she had a relatively short journey to diagnosis. When she looks at others, she thinks she is lucky. I would like everybody who suffers from these diseases to have the same luck—if luck is the word. I do not believe in luck; my personal opinion is that everything is predestined. I am interested in how we make it better.

The quick diagnosis came only because Zoi’s GP recognised her symptoms and knew to refer her right away. Does every doctor have that knowledge? I hope they have, but they might not have the personal observation of that doctor. The difference was that he had had a friend who had died of the disease, so he knew what to look out for and red-lighted those symptoms.

Despite Zoi’s positive experience of diagnosis, however, her experience of care since has been variable—that is the second stage. Following diagnosis of the disease, the care system works its way out. She has faced long waits for appointments and poor communication between teams responsible for her care. In one instance, she received a letter from a consultant four months after the date of the appointment. Was that the fault of the Royal Mail? I do not know. It was not Zoi’s fault that she did not know about the appointment until it was too late. It meant that she had been taking a medication unnecessarily for months longer than needed.

It is about early diagnosis, treatment going forward and speed and urgency in the process to make it happen. Zoi works for a charity that supports other people living with vasculitis. She describes it as “heartbreaking” that hers is one of the best diagnostic journeys one will hear of. She has been diagnosed and gone through the NHS process to get out the other side and try to be better. As she says, hers is one of the best diagnostic journeys, but how can the rest be improved?

How do we improve care? Speedy diagnosis should not be down to Zoi’s word “luck”. People such as Zoi living with serious rare diseases should be able to access vital care when they need it. That is why I am calling on the Minister to consider the following recommendations advocated by RAIRDA. It is important to be aware of the issues.

The first recommendation is to ensure that rare diseases are a focus of the NHS 10-year plan. I am always pleased to see the Minister in his place. I mean that genuinely, not to give the Minister a big head. He comes with an understanding that we all greatly appreciate— I do and am sure everybody else does. Will there be a focus in the 10-year plan on rare diseases? I am pretty sure the answer will be yes, but we need confirmation of that in Hansard today. We need to reassure our constituents who are struggling with disease and are unsure what the future means for them.

The UK rare diseases framework, introduced just three years ago in 2021, has been a significant step forward in securing equity of treatment for rare diseases. I welcome that, but sometimes the system does not work as well as it should. It is crucial that the Government do not lose sight of the work done to date to drive change for people living with rare conditions. Good work has been done, and I always like to recognise good work. It is important that we give encouragement to those who are working hard, and it is important sometimes to think, when we are ploughing away, what we are getting for it. Many of us—all of us in this room, for instance—appreciate what our NHS does. The good work that has happened for those with rare conditions needs to continue with the same zest, enthusiasm and fervour as it has done in the past.

It is particularly important that the working groups on the NHS 10-year health plan consider how improvements in rare disease care will be championed in that plan. In addition, it is important that the plan considers how the work plan of the UK rare diseases framework will be continued past the framework’s end point in 2026. That is my second ask. I am sure that within the 10-year plan the Government are committed to that continuation, but I need to personally reassure my constituents and we need to reassure the nation. We need to reassure those 170,000 individuals and their families and friends.

The framework has been an important tool in co-ordinating methods to improve care for rare diseases, and not just in England. I understand that health is a devolved matter, but this is how it works: whatever happens here, health-wise, is the next stage for us back in Northern Ireland, through the Health Minister. I was talking to another Health Minister on the tube coming here, and we were saying how important that co-ordination across all four regions is. It is good to push for that here, and to see it received back home.

The framework has been an important tool in co-ordinating methods to improve care for rare diseases, not just in England but across the United Kingdom of Great Britain and Northern Ireland. The numbers of people suffering in Northern Ireland may seem small numerically, because we are a region of 1.9 million people, but the impact is huge. I am overtly aware that health is a devolved matter, but I am also aware that the standard can and should be UK-wide. The Minister always gives me and those from other parts of this great United Kingdom reassurance on the co-ordination between here and the Northern Ireland Assembly. I know he has met the Health Minister, Mike Nesbitt, and I am sure they will meet again in the foreseeable future.

How do we develop a standard of care? The National Institute for Health and Care Excellence quality standards consist of defined, measurable statements that can be audited to reduce variations in cases throughout the country. A rare disease quality standard would help to incentivise an increased focus on delivering high-quality care and treatment for rare conditions in the NHS, including rare autoimmune rheumatic diseases. That is my third ask: to develop the standard of care we need to have a quality standard, which would help to incentivise all the regions—all the parts of England, Scotland, Wales and Northern Ireland collectively; better together.

Work in this area is already well under way. RAIRDA has been working hard with organisations across the rare disease community to understand what good care looks like for people living with rare disease, and how that should be reflected in quality statements. Has the Minister had the opportunity to talk to the alliance? I am sure he has; I do not doubt that for a second. It would be good to have that liaison to help to bring together the ideas from the alliance and the Government. It is important that the current work to develop quality statements is built on in a timely way, with the swift development of a rare disease quality standard.

On my fourth request, it is clear that we need development in IT capacity in the fight for diagnosis, to ensure that more people can experience a quick diagnosis, like Zoi did. We need to increase funding for research into the diagnostic journey for rare autoimmune rheumatic diseases, to aid the development of diagnostic technology. It is really important that we look towards the next stage on research and development. How do we do that?

To sidestep slightly, today’s paper—I think it was the Express—said that the Government should be doing something to look at dementia as the numbers rise. Although we are talking about rare diseases that will be well down the Government’s to-do list, early diagnosis is important, as is research and development to improve the capacity to find a cure, to lessen the pain and to lengthen the time that people have in this world. Again, any indication of what is happening with research and development would be greatly appreciated.

Investment in research would help to identify blockers to rapid diagnosis, as well as supporting the development of digital tools for faster and more accurate diagnoses. Some months ago my colleague, the hon. and learned Member for North Antrim (Jim Allister), asked the Secretary of State for Health and Social Care a question in the Chamber about the report on the way forward for the NHS. He mentioned the need for digital data tools, and the Secretary of State replied very positively, so I think the Government are looking into this, but it is important that we have the digital tools in place. With better data and more accuracy, we can help to speed up the process and find a better way forward.

Because of their rarity, it is unrealistic to expect every hospital to have clinicians with expert knowledge of rare autoimmune rheumatic diseases. I understand that, as we cannot know everything. Clinicians may have a small portion of knowledge, but this subject requires expert knowledge, so we need another way of doing it. A 2024 survey found that 29% of respondents were not very, or not at all, confident that the specialist healthcare professionals providing their care understood their condition. How do we improve that? I understand that we are in difficult, financially straitened times, and the Government have rightly committed a large sum of money to the NHS and health services—as they should, and I support that entirely—but we need improvement. My fifth ask of the Minister is: how can we do better? If 29% of respondents are not very confident, or not at all confident, we need to address that.

I believe that improvement can be achieved by developing specialised networks for rare autoimmune rheumatic conditions. Such networks would allow health professionals to access the knowledge and expertise of tertiary specialists, while also developing the capability and capacity to provide more care and treatment locally. I feel that would be the answer to my fifth question, and I am interested to hear the Minister’s thoughts.

Networks already exist, with an excellent example being the Eastern Network for Rare Autoimmune Disease, established in 2016. We have a system in place, so let us look at it—not in a judgmental way—to see what it is doing and where improvements can be made. The network was formed to maximise patient access to relevant expertise while keeping their care as close to home as possible. This has been achieved by setting up excellent communication and cascading training to enable much better co-ordination, digital data sharing and contact between specialised centres and local trusts.

The network lead has calculated that the network’s creation has saved the NHS money, so it has to be considered. The network runs at a cost of between £70,000 and £100,000, but it has generated annual savings estimated at between £150,000 and £200,000. That means that for every £1 spent, the NHS has saved £2, over a seven-year period, through a reduction in the use of inappropriate high-cost drugs.

On my sixth ask, networks throughout the country, like ENRAD, are run on the good will of clinicians. That is not sustainable, and it never can be. I respectfully ask the Minister to perhaps look at the ENRAD scheme, which is run on the good will of clinicians and has been very effective in how it responds, to see how such networks can be better helped to expand. If it saves money—if every £1 saves the NHS £2—then the financial equation is clear, and it should be pursued across all of this great United Kingdom of Great Britain and Northern Ireland.

To address this issue, the Government must provide the necessary financial support for networks to be developed and maintained. That funding would enable the creation of vital posts, such as meeting co-ordinators, and allow clinicians to be reimbursed for their time. Again, I feel that would be the right incentive. Good will is good to have, and there is much of it across this great nation, but, at the same time, there may be better ways of doing things. Such support would ensure that benefits for patients, and the NHS’s budget, could be realised throughout the country. With the £25.3 billion committed to the NHS—I think that is the figure, but the Minister will correct me if I am wrong—this is another way to save money in the NHS, and it really should be done.

My last request is about specialist nurses, who can play a crucial role in supporting people living with rare autoimmune rheumatic diseases. The preliminary results from the 2024 survey show that respondents with access to a specialist nurse were more likely to report that they had access to enough information and support about their condition, compared with those who did not have any access to a specialist nurse. But less than three in 10 respondents—some 28%—had accessed information from a specialist nurse, and this varied widely by condition group. Wow: how important is the role of specialist nurses? I would be reassured if the Minister came back to me in respect of the critical role they play, perhaps exclusively. If only 28% of people have access to information from a specialist nurse and it should be more, what can be done to improve that?

Finally, when developing the NHS workforce plans, will the Minister consider what more can be done to recruit more specialist nurses to support people with rare autoimmune rheumatic diseases? We must always consider the fact that although the chances of getting a rare disease may be one in 10,000, the reality is that the patient deserves all the help we can offer, from diagnosis to treatment and support. I ask the Minister—very kindly, sincerely and humbly—to clarify whether that is this Government’s goal. I believe that it is, but it is not about me today; it is about the people we represent in this House, collectively, together, across this great nation. I believe we have an important role to play.

RAIRDA, with all the clinicians and all the charities, has brought together some positive ideas that can help us together. This is not about blame—it is is never, ever about blame; it is about how we do it better. On behalf of my constituents who have contacted me, and others who will speak shortly, and for the shadow Minister and the Minister, we put forward our case and look forward to support from Government.

[Dr Rupa Huq (in the Chair)]

I remind Members that they should bob if they want to be called in the debate.

--- Later in debate ---

[Alison Bennett (Mid Sussex) (LD)]

It is a pleasure to serve under your chairmanship, Dr Huq. I thank the hon. Member for Strangford (Jim Shannon) for bringing forward this debate on a subject that all too often does not get enough attention, but that is important and affects millions of people. I also thank the hon. Member for Bootle (Peter Dowd) for his contribution.

More than 160,000 people in the UK live with rare autoimmune rheumatic diseases. Identifying, treating and caring for those people is complex. Yesterday, my constituent Carrie told me about her experience. She suffers from a number of conditions and has done since she was diagnosed 30 years ago. Interestingly, for someone who has carried those conditions for 30 years, she considers herself fortunate to have been diagnosed with Raynaud’s and lupus at a young age, because it allowed her to start treatment early and receive consistent care. She knows from experience that early diagnosis and treatment makes a real difference, a point that has already been made by hon. Members.

While Carrie believes that she has been lucky and has received good care, she stressed that many people face years of misdiagnosis or dismissal, and poor or almost non-existent care. Those failures only exacerbate their symptoms further down the line. Sadly, one of those less fortunate than Carrie is her own mother, who lives not in Sussex but in Yorkshire, and also has multiple autoimmune conditions. Contrastingly, however, she has always been made to feel like a hypochondriac—not an unusual experience for those seeking help with rare autoimmune rheumatic diseases.

Carrie’s mother was eventually diagnosed after many unnecessary years of suffering. She suffered for longer and to a greater degree simply because no one believed her or was able to diagnose her. Carrie told me that a postcode lottery exists in the quality of care for those with these conditions. It really is down to the specific medics and practitioners who an individual meets as to how well their condition is identified and whether treatment can begin.

Carrie’s Raynaud’s is particularly debilitating in winter. She told me that more awareness of the issues around the conditions and how symptoms can be alleviated is vital. Often, solutions can be as simple as helping with buying things such as thermal gloves or socks.

Another major challenge has been the impact of her autoimmune conditions on her teeth, particularly with the Sjögren’s that she suffers from. Carrie has spent thousands and thousands of pounds on private dental care over the years—the only option as NHS treatment was not available. Despite that money, Carrie now thinks that it is not long until she will have very few teeth left.

Carrie thinks that the current system is disjointed, with her dentist not understanding the issues surrounding her conditions, and her rheumatologist likewise not understanding the impact her conditions have on her dental health. She believes that a more co-ordinated, multidisciplinary approach to treating the conditions would help. It is clear from my conversation with Carrie that we simply must do better on this issue.

We must tackle the postcode lottery, exemplified by Carrie and her mother at opposite ends of the country; build a more joined-up system; and take rare autoimmune rheumatic diseases seriously so that we can start diagnosing earlier and more consistently. While the problems seem daunting, I believe that by collaborating—for example, with organisations such as RAIRDA—we can find solutions to the problems that Carrie told me about.

It is already Liberal Democrat policy to ensure that everyone with long-term health conditions has access to a named GP. We must also do better on dentistry, both generally, by sorting out the NHS contract and ensuring that we have a proper workforce plan for dentistry, and specifically, for people with those rare diseases that have a massive impact on dental health. As well as having access to a named GP, the Liberal Democrats are campaigning for the Medicines and Healthcare products Regulatory Agency to have greater capacity, which would help to speed up the process by which new treatments reach patients—a potential game changer for those suffering with such conditions.

We need change so that we can help the people living with those complex, long-term and debilitating conditions. The diseases may be complex, but I believe the solutions need not be. I am encouraged by the words of hon. Members today, and together, we can effect the change that Carrie, her mother and so many others need and deserve.

[Dr Rupa Huq (in the Chair)]

I call the shadow Minister, the hon. Member for Hinckley and Bosworth (Dr Evans), to speak for His Majesty’s loyal Opposition.

Ultra-processed Food

Rupa Huq Excerpts

Wednesday 21st June 2023 Westminster Hall

[Suzanne Webb]

It is, hence my sparkling water, which I was rushing out for. In May 2023, the World Health Organisation said it was concerned about the long-term use of aspartame as it increased the risk of type 2 diabetes, heart diseases and mortality, although the UK’s Food Standards Agency has accepted that it is safe.

Much of this food is our everyday pleasure, so I am not advocating that we tell people what to eat and not to eat. I am hugely conscious of the cost of living pressures and the ways that people are trying to make changes and save money. Consumed in isolation and moderation, this food is fine. The problem is when it takes over our lives—and it has.

The key challenge is to get supermarkets to put healthy products on multi-buys, encourage a promotional spend shift to healthier food products and focus on making food more affordable. Promotional deals are easy ways to make profit for the supermarkets, peddling products that, to them, are low cost but high margin, and have no nutritional value. There is no doubt that modern living and work patterns mean that we find it difficult to find time to cook unprocessed foods instead of purchasing ultra-processed foods, as they are quicker to cook, ready to eat and cheaper. I do not think that there is anyone here who has not left Westminster on a Wednesday night and probably just picked up a ready meal because it is the quicker and easiest thing to do.

I am pleased to have read that the Scientific Advisory Committee on Nutrition, which provides recommendations on dietary guidelines, is carrying out a scoping review of the evidence on processed foods and health. It aims to publish its initial assessment in the summer of 2023. TV medic Dr Chris van Tulleken has also been vociferous on ultra-processed foods, and long may that continue. The facts are there. It is a serious crisis when one in three children are obese by the time they leave primary school.

I want to see the private sector lead by example, with manufacturers stepping up, taking responsibility and stopping packaging and promotional techniques that lure customers towards ultra-processed food with no nutritional value. We need to address the potential loopholes and displacement from marketing regulation of food that is higher in fat, sugar and salt when selling the dream of a 100% beef burger when, in fact, it is not. Regulators need to focus more on how the processing of food impacts our health outcomes. Will the Minister consider introducing the important advertising watershed sooner rather than later? We cannot afford to delay. The obesity figures speak for themselves; the cost to the NHS speaks for itself. Also on my wish list is considering introducing a reduction target to keep focused on ensuring that ultra-processed food consumption levels in the UK are at a healthier level.

I am deeply concerned about the impact that such food is having on health outcomes and the impact on the NHS. We need to continue the debate, as the simple fact is that 64% of adults in England and 40% of 10 to 11-year-olds are either obese or overweight. That is staggering. To me, we are not far off from the time for urgent intervention like we had in the cigarette industry. An article was written on Monday, independent of my securing this debate, in which I read someone saying very similar things. The obesity crisis is truly shocking and cannot be ignored. The role of ultra-processed foods in that is significant, as is the role of the food supply chain. The food supply chain needs to step up and play its part in the fight against obesity before the Government need to intervene and start to tackle the ultra-processed foods like they did with tobacco— to basically get in there. The Government will have to intervene at some point if the industry do not get a grip.

[Dr Rupa Huq (in the Chair)]

I will start to call the Front Benchers at 5.33 pm, with five minutes for the SNP and Labour, because it is only a 60-minute debate. If we do speeches within five-and-a-half minutes, everyone will get in.

New Hospital Programme and Imperial College Healthcare NHS Trust

Rupa Huq Excerpts

Tuesday 13th June 2023 Westminster Hall

[Andy Slaughter (Hammersmith) (Lab)]

I beg to move,

That this House has considered the New Hospital Programme and Imperial College Healthcare NHS Trust.

It is a pleasure to see you in the Chair this afternoon, Sir Mark. I understand that our proceedings may be interrupted for some time, but let us make a start. I am delighted to see my west London colleagues here—my hon. Friends the Members for Westminster North (Ms Buck), for Ealing Central and Acton (Dr Huq) and for Brentford and Isleworth (Ruth Cadbury)—and indeed the hon. Member for Cities of London and Westminster (Nickie Aiken), my hon. Friend the Member for Reading East (Matt Rodda), and, of course, the hon. Member for Strangford (Jim Shannon), without whom no debate would be complete, perhaps to remind us that although this is to some extent a local or regional issue, it has much wider implications.

To be clear, this debate is about one thing specifically: the defunding and removal from the 2030 new hospital programme of three major hospitals—Charing Cross, Hammersmith, and St Mary’s—all of which form part of the Imperial College Healthcare NHS Trust. They are teaching hospitals, major emergency and trauma hospitals, research hospitals, academic hospitals, tertiary hospitals—hospitals with a huge national and international reputation—but they are also local hospitals for my constituents and those of many other Members.

In the Secretary of State’s statement on the new hospital programme on 25 May, seven of the schemes that had previously been in the 40 hospitals scheme were removed from that programme with respect to completion by 2030—we must be careful in our words here. I need to deconstruct what has happened since that time, because there has been some misleading presentation of the facts. In order to clarify this, I sent some rather key questions to the Minister in advance of this debate.

Essentially, looking at the statement that was made, the Secretary of State said, in respect of those seven schemes:

“The work will start on those schemes over the next two years, but they will be part of a rolling programme where not all work will be completed by 2030.”—[Official Report, 25 May 2023; Vol. 733, c. 479.]

That is the key change, as far as we are concerned, in relation to that statement.

The questions that still sadly remain unanswered are these: what works will be done at each of the three hospitals before 2030? How much will the budget be for that, and will it come out of the £20 billion new hospitals by 2030 programme? What is the total budget for the rebuild schemes at each of the three hospitals? Is this secured funding, and when will it be allocated? By what date or dates will the works for each hospital be completed?

I have put together what I think are the answers—I have done my sleuthing—but I really need to hear it from the Minister’s own mouth, this afternoon if possible, or in a follow up if he needs to use that. I might also add a sort of meta-question to that: when will I receive a response to the email that I and my hon. Friend the Member for Westminster North sent to the Secretary of State on 28 May, which raised those same issues?

I understand that there is confusion associated with the new hospital programme—as would be true of any scheme that came in under the aegis of the former Member for Uxbridge and South Ruislip—about whether those were new hospitals or not. Almost a year ago, I asked the then Prime Minister about the new hospitals—the “new” hospital at Hammersmith that opened in 1902, and the “new” hospital at Charing Cross that opened in 1818—but I will not focus on that point today. This is about the funding and the timetabling of the scheme; frankly, the Minister can call them whatever he likes.

There have been a number of schemes moving in and out. At one stage there were going to be 48 new hospitals. I think 128 bids came in for the extra eight places and five were successful. We are told there is £20 billion, which sounds like a lot of money—it is a lot of money—but it is not the £32 billion to £35 billion that the Health Service Journal says would be needed to complete all the schemes that have at one time been put forward for the new hospital programme. Those are legitimate grievances, but I do not have time to deal with them all today. I have time only to deal with the one matter that I have already raised.

I need to give a little bit of background. As I have indicated, the hospitals have a long and illustrious history, going back more than two centuries in the case of Charing Cross. In 2012, an Orwellian programme called Shaping a Healthier Future, which had been the product of two years’ secret work by the consultants McKinsey, said that several A&Es should close, including the one at Hammersmith, and that Charing Cross should be demolished and replaced by primary care and treatment services on the site. It was the biggest closure programme in the history of the NHS.

Sadly, we did lose the A&E at Hammersmith in 2014, but after a herculean battle fought over seven years by community groups, such as Save Our Hospitals, and by Labour local authorities, particularly that in Hammersmith, that battle was won and Charing Cross had a reprieve and would go on being a major hospital. That happened in 2019.

It was rumoured that the money that would have been gained by selling most of the land at Charing Cross might have gone into the St Mary’s scheme, which, by common consent, is the hospital that most needs emergency work. But although the bill for essential repairs on the three hospitals is about £350 million—far and away the biggest repair bill of any hospitals in the country—if we want to make those hospitals fit for the 21st century, the actual cost, which I believe is accepted by Department of Health and Social Care officials, will be about 10 times that, between £3 billion and £4 billion. If that seems an unspecific figure—my hon. Friend the Member for Westminster North will say more about this—it is because it depends to some extent on what receipts can be received from land value and moneys at Charing Cross. It is a significant sum of money, but it is to make those essential and world-class hospitals fit for purpose for decades going forward, not just to patch them up.

It was always going to be difficult, and it was disappointing that the hospitals were in cohort 4 and would just squeak in by 2030—that is when the work would be completed. We would have a newly built hospital at St Mary’s and refurbished hospitals at Charing Cross and Hammersmith over that time. That is why it was so disappointing when they were moved out of that without any further future date being given.

What is at stake here? Because there has been so much information, I do not want to use my own words, but the words of the trust itself. In preparation for this debate today, it said:

“the main funding for our schemes has been pushed back beyond the original commitment of 2030 as other schemes have been added to the programme and prioritised. We had two schemes in the original list of 40 hospitals to be built by 2030: a complete rebuild of St Mary’s Hospital in Paddington; and extensive refurbishment and some new build at both Charing Cross Hospital and Hammersmith Hospital”—

confusingly, the Department of Health classifies the two hospitals of Hammersmith and Charing Cross as one scheme, but it certainly affects the two hospitals. The trust goes on:

“It is clearly very disappointing that we will not now be funded to complete these schemes before 2030.”

It also states that

“some funding to progress to final business case approval and to support enabling work”

should be provided, and

“we are awaiting a response in terms of a decision and a funding allocation.”

It then talks about the business plans that it is going to put forward. In rather more emotive but absolutely accurate language, it says:

“If we waited until 2030 to start building works at St Mary’s it would become impossible to patch up our oldest facilities, many of which house key clinical services. As the provider of London’s busiest major trauma centre and host of the NHS’s largest biomedical research centre, that would be hugely damaging for the health and healthcare of hundreds of thousands of people”.

That is the statement from the chief executive officer at Imperial, Professor Tim Orchard, and those words should resonate with the Minister.

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

I am aware that the Division bell will probably start ringing as soon as I stand up, but I am familiar with that quote from Tim Orchard. My hon. Friend is making a really powerful speech. I am familiar with all these hospitals, as are all my constituents. I was born at Queen Charlotte’s, my little sister was born at Hammersmith, and both my parents were under Charing Cross. I went to the Western Eye Hospital last year when I had shingles, and I have an auntie who has retired but was a consultant professor at St Mary’s.

Does my hon. Friend agree that it is really sad that, in the 75th year of the NHS, we are talking about crumbling estates and all these issues? The backlogs at these hospitals existed long before covid. The Government like to throw up that smokescreen and say, “It’s covid’s fault.” I have just written to Tim Orchard because a constituent told me that there is only one temporary scanner at Hammersmith at the moment. Is that not scandalous? Does my hon. Friend agree that, to paraphrase the Sex Pistols, who were formed on the Wormholt estate, which borders both our constituencies, this is the great NHS scandal?

[Andy Slaughter]

I thank my hon. Friend for that contribution, and I entirely endorse what she said.

I want to deal briefly with the misinformation—I accept that it was wholly unintentional—in the Secretary of State’s statement, or rather in his responses to questions following his statement, because it is important. A ministerial correction was made following a point of order that I made arising out of that. In response to my hon. Friend the Member for Westminster North, the Health Secretary said:

“We recognise the importance of the Imperial bid; that is why we are starting to build the temporary ward capacity at Charing Cross and the first phase of work is under way on the cardiac elective recovery hub, to bring cardiac work on to the Hammersmith site.”—[Official Report, 25 May 2023; Vol. 733, c. 485.]

There are 47 words in that statement, and four errors had to be corrected in the ministerial correction. That may be an all-time record; I do not know. Some are more important than others. There are bids, not one bid. We are not starting to build; we will start to build at some time in the unspecified future. There is no cardiac elective recovery hub; there is a cardiac catheter lab. The idea that we are just moving cardiac services to the Hammersmith Hospital site would be a surprise, given that St Mary’s is a world-leading cardiac hospital at the moment.

I accept that mistakes happen, but there were other errors in that statement. It implied that works are under way, whereas it is common consent now that they have not yet started. The cardiac work is nothing to do with the new hospital programme; it is part of the ordinary work, as is the refurbishment of wards. The temporary ward at Charing Cross will be necessary, but not until the main funding for the floor-by-floor hospital renewal refurbishment is ready to go. Some greater clarity would be helpful on those very contentious matters.

My first question is: what are the enabling works? What does that mean? We have heard several definitions. The trust says:

“We do not yet know when we will be able to start work.”

There has been mention of surveys. Of course there will have to be surveys before the works, which are estimated to cost several billion pounds, start. We are hoping to get a significant sum of money for the business case—perhaps as much as £200 million. This is about rebuilding the three main hospitals.

An energy centre is mentioned. There will need to be a new energy centre, partly because we have major supply issues in west London, and the existing energy supply would not supply modern, state-of-the-art hospitals. All that is true, but what is not true is that this is somehow the beginnings of the major works of the scheme. That is a fig leaf to cover the fact that the major works have been postponed beyond 2030. The fact is that they are not in the 2030 programme or the current spending review. I ask the Minister again: when will the work be done and what funds have been assigned? Yes, there has been preparatory enabling work, but does that come out of the £20 billion? What is the Government’s commitment to the major work of rebuilding those hospitals? There has been some work, with £20 million spent on preparing plans so far, but we are in limbo at the moment. We are suffering repeatedly from misinformation.

I understand that this is a highly contentious political area. The chairman of the Conservative party will, if the Boundary Commission proposals go through, be the MP who covers Charing Cross Hospital. That is no excuse for putting forward matters that are simply misleading to my constituents and many other people. That does us a great disservice. We all want to see these hospitals thrive, in the interests of patients, staff, management, the trust and the hospitals themselves.

Therefore, I will end my comments, because I want to give others an opportunity to contribute. What I need from the Minister today is clarity and honesty about what is happening. We will live with the consequences of that, and we will continue to campaign as we have done for our wonderful hospitals and local NHS. The Government do a disservice if they are not straightforward and clear in the message they send out.

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.