Edward Argar MP: speeches 2025

Speeches

• 19 May 2025 · Mental Health Bill [Lords] · Hansard source

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  The Secretary of State was kinder than he normally is, and I am grateful to him for acknowledging the reduction in the proportion of mental health spending—it is slight, but it is none the less a reduction. I hear what he says more broadly, but I hope that he and the Minister will reiterate their commitment to ensuring that the legislation succeeds, which we all wish for, and that the pressures it may place on parts of the system will be addressed and not simply be absorbed within the system. I suspect that the Minister will come to that in his concluding remarks. While it is the right principle to direct more mental health patients away from in-patient hospital settings and to community treatment settings where clinically appropriate—this is key, and goes to the Secretary of State’s point—we must ensure that the NHS has the capacity to provide community treatments when the Bill is on the statute book. The Government accepted that the reforms will take a number of years to implement, given the need to recruit and train more clinical and judicial staff, but what is the plan and how much will it cost? Will it be phased in over a number of years? The NHS workforce plan will nearly double the number of mental health nurses by 2031-32, but the Secretary of State has said that he intends to update the plan. It would be helpful if, during the Bill’s passage, he or the Minister could tell either the Bill Committee or this Chamber what the changes that he envisages making through this legislation will mean for the workforce. We recognise the significance of the provisions limiting the detention of patients with a learning disability or autism. Under the Bill, they can be detained for treatment only if they have a co-occurring mental health condition that requires hospital treatment and meet the criteria in the Mental Health Act 1983. Autism alone would no longer justify continued detention under the 1983 Act; in theory, this will ensure that those with autism receive the appropriate support in the right setting, as we would all wish. What steps are being taken to ensure that there are sufficient services, with sufficient capacity, to properly support people with autism and learning disabilities? Can he confirm that under this legislation, there will always be a central role for professional clinical judgments on these matters? This debate in part follows on from concerns being raised about racial disparities in the application of the Mental Health Act. Can the Secretary of State or the Minister provide more evidence to help the House better understand this issue? What research has been undertaken, or is being planned, to enable us to understand what is behind the statistics? We welcome this important opportunity to look again at how we treat and protect people with the most severe mental illnesses, and to ensure that our laws remain relevant and proportionate in the modern world, empowering people and treating them humanely. Updating the Mental Health Act is the right thing to do, and we will work constructively with the Government to improve the safety, treatment, agency and, crucially, dignity of mental health patients who are detained, and of the wider public.

• 19 May 2025 · Mental Health Bill [Lords] · Hansard source

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  The hon. Gentleman is right to highlight both the costs and the investment that is needed, but the cost does not detract from the importance of and need for the measures set out in the legislation. He points out that as a proportion of overall health spending, mental health spending has fallen slightly in the latest figures. I hope that the Minister in his wind-up will address how the Government will ensure that this legislation, which enjoys broad support across the House, has the resources behind it to deliver the outcomes we all wish to see in practice?

• 19 May 2025 · Mental Health Bill [Lords] · Hansard source

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  The previous Government published a draft Mental Health Bill based on the recommendations in the report, giving others the opportunity to have their say. The draft Bill was subject to pre-legislative scrutiny by a Joint Committee of Parliament, allowing Members of both Houses to thoroughly review it and make recommendations before the final version was introduced. Given the importance of this area of policy, which can have such a profound impact on people’s lives, I believe it is right that we took the time to get this right. The work to update the Mental Health Act started under the previous Government and we had a commitment in our election manifesto to update the law in this area, and that has been carried on by the new Government. We continue to believe that this is the right thing to do, so I put on the record our in-principle support for the Government on the Bill. I pay tribute to my hon. Friend the Member for Runnymede and Weybridge (Dr Spencer) for his work in this space as a shadow Minister. Not only does he have professional expertise, but he has brought it to the House’s deliberations on this legislation. I suspect that we may hear from him a little later. There are many areas of the Bill that we welcome, including the strengthening of the patient’s right to express a treatment preference, the expansion of access to independent mental health advocates, and the removal of police and prison cells as places of safety so that patients can be treated in an appropriate setting. That said, of course we will not stand back without scrutinising and seeking constructively to improve the Bill as it passes through the House. Part of our role as the Opposition is to engage constructively in the scrutiny of legislation—to ask questions, to probe further, to seek to prevent unintended consequences, and to identify potential problems and ensure that they are aired in Committee—in order to improve it for everyone’s benefit, and that is what we shall do. I know that my hon. Friend the Member for Hinckley and Bosworth (Dr Evans) will approach the Public Bill Committee in that vein. We very much welcome efforts to improve patients’ voice and involvement in their own care, including through greater use of advance choice documents. In its current form, the Bill places a duty on NHS England and integrated care boards to make patients aware of their option to have such a document, but this could be as simple as having a poster on a noticeboard, for instance. It does not necessarily require a conversation. Introducing it as a legal right for patients who are being treated or for someone who is at risk of detention would mean that they have to be specifically told about the option, allowing them to make a deliberate decision. I suspect that in Committee we may gently press the Minister to go further in strengthening the patient’s right to have their voice heard. I have been on a number of Bill Committees, and gently hinting to the Minister areas where we might press further may make his and his officials’ lives a little easier when amendments are tabled in Committee. We were pleased that peers passed an amendment to better protect children who require a nominated person, removing the discretion where a court order regarding parental responsibility is in place. However, we believe there is more we can do to support and protect children, particularly regarding age-appropriate settings for treatment. I hope that when the Minister for Care winds up, or in Committee, he will explore in greater detail the steps the Government are taking to reduce the number of children being treated on adult mental health wards and to ensure that lessons are learned at both national and local service provider level. Thirdly, we are conscious that a number of elements of the Bill will require additional resources to be put in place. The removal of police and prison cells—sensibly—as places of safety will require sufficient alternative capacity for people to be treated when they are detained. What approach do the Government intend to take in addressing this? Increasing the frequency with which patients can apply to the mental health tribunal to have their detention reviewed and widening automatic referrals will potentially increase demand and pressure on the system. We know that the legal system is already under pressure, and the impact assessment acknowledges that there will be impacts and costs, so is the Minister confident that the system has the capacity to handle the additional demands? If not, what steps are being taken with the Ministry of Justice to address that?

• 19 May 2025 · Mental Health Bill [Lords] · Hansard source

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  I will regret doing so, but of course I give way to the Secretary of State.

• 6 May 2025 · Maternity Improvement Strategy · Hansard source

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  I fear that many will have found the Minister’s answer to my hon. Friend the Member for Windsor (Jack Rankin) disappointing. He highlighted that the previous Government committed to the headline recommendation of the cross-party birth trauma inquiry led by the hon. Member for Canterbury (Rosie Duffield) and the former Member for Stafford, Theo Clarke, who has recently written about her experiences in a book, and in the Daily Mail called for a national maternity improvement strategy. No equivalent commitment has been made by this Government. Let us try again: will the Minister commit without any equivocation to implementing the inquiry’s recommendation to produce a national maternity improvement strategy?

• 6 May 2025 · NHS England: Abolition · Hansard source

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  The Health Service Journal reports that officials have acknowledged that the first draft of a high-level plan for merging NHS England and DHSC has been delayed. When we ask any written question about the merger, the standard answer seems to be: “Ministers and senior Department officials will work with the new transformation team at the top of NHS England, led by Sir Jim Mackey, to determine the structure and requirements needed to support the creation of a new centre for health and care.” Even when we ask a question specifically about the size of the transformation team, the answer is virtually identical. The Government either wilfully decide not to answer, or simply do not know. As with so many things, the Government go for the headline-grabbing announcement and talk the talk on reform, without having done the actual work to deliver it. My question to the Secretary of State is simple: when will that first high-level plan for the merger, with a full assessment of costs and savings, be published?

• 26 Mar 2025 · Tobacco and Vapes Bill · Hansard source

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  I am conscious of time, so I will be brief. I recognise the sincerely and strongly held views on both sides of the debate, which has played out with courtesy in this Chamber and in Committee, where Members have shown respect for one another and for differing views. I want to put on record my gratitude to all right hon. and hon. Members who have spoken. I congratulate the Minister on being thrown in at the deep end and taking through a piece of legislation with courtesy, very swiftly after she was appointed. I thank the Clerks, the Whips and those who served on the Bill Committee. I do want to single out the phenomenal work done by the shadow Minister, my hon. Friend the Member for Sleaford and North Hykeham (Dr Johnson), and her staff, Angus Forbes-Cable and Joey Ricciardiello, who did so much on the Bill, especially in Committee. As ever, even though there are strong feelings on both sides, the House has shown itself able to grapple with difficult issues with courtesy and thoughtfulness. Question put, That the Bill be now read the Third time.

• 25 Mar 2025 · Topical Questions · Hansard source

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  May I take this opportunity to thank the Secretary of State for his kindness following the death of my father earlier this month? It was very much appreciated. I welcome the moves to streamline decision making and improve efficiency in the context of the Secretary of State’s NHS England announcement, if he genuinely drives decentralisation to integrated care boards. However, in a written answer on 21 March, the Minister for Secondary Care said: “We recognise there may be some short-term upfront costs as we undertake the integration of NHS England and the Department”. For clarity, can the Secretary of State confirm what the quantum of those reorganisation costs will be and the date by which they will have been recouped?

• 25 Mar 2025 · Topical Questions · Hansard source

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  Can I also welcome, as I did in January, the Secretary of State’s commitment to seek to work cross party on the future of social care? He was right and I welcomed that at the time, but like him and many others, we are all keen to see progress. Can he update the House on when he anticipates the cross-party talks that were postponed in February will be rescheduled to take place?

• 19 Mar 2025 · Winter Fuel Payment · Hansard source

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  I am grateful to my right hon. Friend the former Deputy Prime Minister, who has put the case far more eloquently and succinctly than I could have done. He is, of course, entirely right. An estimated three quarters of a million people are entitled to pension credit, but do not claim it, even after Labour’s pension credit take-up campaign, so they did not receive the winter fuel payment to which they are entitled. Will the Minister—or the Pensions Minister who opened this debate, whom I see back in his place—commit in the name of transparency to publish an official estimate of the number of eligible pensioners the Government estimate did not receive the winter fuel payment this winter? I am conscious of the time, so I will allow the Minister to respond in his wind-up. The Government’s own modelling shows that 100,000 pensioners will be pushed into poverty as a result of their choices. Now that the first winter has passed, will the Minister commit to publishing data showing the real impact of changes to the winter fuel payment on levels of pensioner poverty? The number of over-65s attending A&E increased by nearly 100,000 this winter, despite its being a warmer winter than average. We know that multiple factors have an impact on that number, but this is a very large jump. Again, will Ministers publish official data on the number of hospital admissions they believe to be caused by the winter fuel payment cut and what the cost to the NHS has been? To conclude, because I am conscious of the time and wish to enable the Minister to respond, this money was genuinely needed by vulnerable people—vulnerable pensioners—this winter. In my Melton and Syston constituency, I get heartrending messages about choices between eating and heating, and we should not forget, as my hon. Friend the Member for Bromsgrove (Bradley Thomas) mentioned, the impact on rural communities reliant on heating oil and having to pay for that in one bulk payment. Labour Members have an opportunity this evening to send a message to pensioners. Will that message once again be one of ignoring their concerns, with the Government showing they are deaf to them and do not care, or will they take the opportunity to do the right thing this evening, and back our motion to send the message to their older constituents that they do care and are standing up for them against this cruel and unnecessary cut? This choice, and it is a choice, will tell pensioners in their constituencies exactly where they stand. The Conservatives and other Members on this side of the House are standing up for our pensioners on winter fuel payments. The Conservatives are backing the generation that gave so much to our country. Will Members on the Government Benches have the courage to do the same?

• 19 Mar 2025 · Winter Fuel Payment · Hansard source

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  Let me just make a further point. I am about to deal with some of the hon. Gentleman’s own points, as he will find if he pauses for a minute, but he may want to intervene at that moment. George Osborne did not cut the winter fuel allowance because it gave pensioners the confidence to turn the heating up those extra few degrees, knowing that the money was coming. I will now give way to the hon. Gentleman.

• 19 Mar 2025 · Winter Fuel Payment · Hansard source

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  I will make a little bit of progress, and then I will give way to my right hon. Friend. UK pensioners are not fools, so I am sorry that Labour Members want almost to insult their intelligence by repeating the debunked claim about the so-called black hole, or the debunked claim that the triple lock was in some way under threat and has been saved by the current Government. Let me also gently remind them that pensioners are unlikely to forget. They feel let down by Labour; they feel that the trust that they placed in Labour Members when they voted for them has been betrayed, and within a month of Labour’s taking office. So I ask again, why did this Government make the political choice to introduce these cruel, unnecessary cuts? I now give way to my right hon. Friend.

• 19 Mar 2025 · Winter Fuel Payment · Hansard source

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  I was about to be quite nice to the hon. Gentleman, because I have to say that, during a debate that has, perhaps, produced a lot of heat and not always a huge amount of light, he addressed the issues before us in a measured way. I did not agree with everything he said, but he was reasonable and made some valid points. Let me gently say to him, however, that our record speaks for itself. We did not get rid of the winter fuel allowance. The fact is that Labour Members are in government, and have a large majority, and, as they are discovering, to govern is to choose. They must be accountable for the choice—the choice—that they have made.

• 19 Mar 2025 · Winter Fuel Payment · Hansard source

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  Let me just complete the point. I know that the hon. Gentleman has only come into the debate relatively late, but I will take an intervention from him afterwards. The message is, under this Government, do not run a hospice, a pharmacy or a care home. Do not be a farmer. Do not run a business and, heaven forbid, do not get old.

• 19 Mar 2025 · Winter Fuel Payment · Hansard source

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  This afternoon, we have heard some fantastic speeches in which Members have set out heartbreaking real-life stories from their constituents about the situation older people have found themselves in this winter. Pensioners have been forced to choose between eating and heating as a result of the Government’s choice to remove the winter fuel allowance from around 10 million of them. That was compounded by shocking delays in processing pension credit claims. Along with those who have just missed the threshold to receive support, it has meant that many, many people who are desperately in need have missed out on hundreds of pounds that would have made a real difference to them this winter. As has previously been said: “Although the poorest do receive some help through cold weather payments, they go only to those on income support, who generally have to wait until after the cold weather for help to be available. The payments are no help at all to most pensioners, including…those on the margins of poverty”. The individual continues that they were “simply not prepared to allow another winter to go by when pensioners are fearful of turning up their heating, even on the coldest winter days, because they do not know whether they will have the help they need for their fuel bills.” —[ Official Report , 25 November 1997; Vol. 301, c. 779-80.] Those were the words of the former Labour Chancellor and Prime Minister, Gordon Brown, who brought in the winter fuel payment. It is a great shame that his successors in a Labour Government today have taken a very different view on support for pensioners. The choice made by the Labour Government—almost their first choice in office last July—is as cruel as it is unnecessary, and it has real-life consequences for vulnerable people. Like many other Members, I suspect on both sides of the House, I have met my local branch of Age UK and other local charities. They all tell me about how hard their services—services vitally important to pensioners, such as GPs, hospices and pharmacies—will be hit by the Government’s jobs tax, the NICs hike. Alongside that impact on services pensioners rely on, this Government have slashed the winter fuel payment for so many. Understandably, pensioners are asking what the Labour party has against them—or, for that matter, against farmers or businesses.

• 19 Mar 2025 · Winter Fuel Payment · Hansard source

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  I want to make a little progress. We have seen a real black hole emerging following the Chancellor of the Exchequer’s disastrous Budget. It is also not the case that the Government can claim they have saved the pensions triple lock, which was introduced by a Conservative and Liberal Democrat Government back in 2010. The previous Government had already committed themselves to it, in that election’s manifesto and others. Pensioners could rightly bank on the uplift from the triple lock coming through. What they have seen now, however, is a real cut in what they were receiving, and what they had a right to expect, with the slashing of the winter fuel payment.

• 19 Mar 2025 · Winter Fuel Payment · Hansard source

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  The hon. Gentleman will be aware that, as I mentioned earlier, I have read the report, and he will know, having also read it—he is gently waving it at me from the other side of the Chamber—that the OBR pointedly declined to back up the claim about the so-called £22 billion black hole. As we have heard, the former Prime Minister Gordon Brown, as Chancellor of the Exchequer, initiated the winter fuel allowance, announcing it in 1997 and introducing it in 1998; but it is worth remembering that, even in the challenging circumstances of the time, George Osborne did not cut the allowance, despite the appalling financial and economic inheritance in 2010. Why not? Because it was a cost-effective benefit, and because it genuinely made a difference.

• 19 Mar 2025 · Winter Fuel Payment · Hansard source

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  I will make a number of points to the hon. Gentleman. I was going to come on to his first point, but I will happily do so now. He seems to be alluding to the mythical so-called black hole that is so often bandied around. The OBR pointedly declined to validate that or back it up in its assessment, and it cannot be deemed a rationale for doing this.

• 14 Mar 2025 · Rare Cancers Bill · Hansard source

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  May I start by extending to the hon. Member for Cumbernauld and Kirkintilloch (Katrina Murray) and her family my sincere condolences on the passing of her father? This is an important Bill. I often say to constituents, “If you wish to see the House of Commons at its best, tune in and watch on a Friday.” I say that again today, having heard the debate. It is it is rare for a shadow Secretary of State to take to the Front Bench on a Friday to respond on a private Member’s Bill, but the debate has reinforced my determination to be here. As the hon. Member for Bootle (Peter Dowd) said—I like to call him my hon. Friend—this is a Bill of hope. I pay tribute to the hon. Member for Edinburgh South West (Dr Arthur) for his clear and compelling articulation of the case for the Bill, and for being willing to share something as personal as the loss of his father-in-law and his family’s circumstances. He spoke about that with great dignity. With a debate of such quality, it is always invidious to pick out contributions, but I cannot resist doing so. I have to pick up the contribution of the hon. Member for Mitcham and Morden (Dame Siobhain McDonagh). When I was a Minister, we often worked with each other and spoke on matters relating to health, although not this subject. Her passion, determination and energy for change and for something better comes across in everything she does, and that builds on the fact that this is a Bill for hope. I pay tribute to her for her work and her dedication. I have been a Member of this House for 10 years, and before the election I was a Minister for six. Two and a half of those years were spent as a Minister in the Department of Health and Social Care during the pandemic, in times that were challenging for everyone, but I have to say that I have rarely heard a speech as powerful and moving, or that held the House so completely, as that of the hon. Member for Calder Valley (Josh Fenton-Glynn). Although I did not know his brother, I suspect that he would have been deeply proud of the hon. Member today. “Rare” in this context is often a misnomer, because although individually these cancers are rare, collectively they are sadly all too prevalent. As we have heard from hon. Members, approximately 55% of all cancer deaths are down to so-called rare cancers. The breadth of those rare cancers is huge: they include blood cancers, cancers of the female reproductive organs, head and neck cancers, pancreatic cancer, brain cancer—the hon. Member for Mitcham and Morden spoke about glioblastomas—and, importantly, children and young people’s cancers, which the hon. Member for Esher and Walton (Monica Harding) spoke about. We have all seen the amazing work by powerful campaigners on these issues and by the huge array of charities campaigning in this space: Cancer52, the Brain Tumour Charity, the Tessa Jowell Brain Cancer Mission, Leukaemia UK, Pancreatic Cancer UK and a whole range of other dedicated and amazing institutions. They do a fantastic job. Like other hon. Members, I recently met Pancreatic Cancer UK to hear about its work; the hon. Member for Birmingham Erdington (Paulette Hamilton) may well have done the same. Initially, it was to discuss pancreatic enzyme replacement therapy drug shortages and the urgent need for some sort of solution, but we also had the opportunity to talk more broadly about pancreatic cancer and rare cancers. Pancreatic Cancer UK highlighted issues that are specific to pancreatic cancer but that I suspect are reflective of many rare cancers: the challenge of diagnosis, the challenges posed by late diagnosis, the reliance on a single therapeutic or a small number of therapeutics with complex supply chains, and the challenges of clinical trials. Sadly, so few people with pancreatic cancer, even when they are able to enlist on such trials, survive long enough to provide the data that will make a real difference. The Bill will help to address that. Because each rare cancer is different, each rare cancer needs focused research and treatment. The hon. Member for Bootle set out clearly the orphan drugs regime for rare cancers. Yes, there are incentives; under the 2021 regulations it is possible to incentivise pharmaceutical companies that may not be inclined to invest in research in areas that may benefit only a few, in comparison with the large numbers affected by other cancers. The regime seeks to give market exclusivity rights for 10 years, helping to reduce the costs of market authorisation, but we have to ask the question that the Bill asks: is it actually doing the job it needs to do to genuinely incentivise companies to invest in research in this space? The hon. Member for Mitcham and Morden mentioned the NHS repurposing project. If we make it work effectively, it will be a very practical way in which, while we wait for specialist research to come through, we can still do something. I believe that the Bill goes a long way towards addressing the issues. The review of the orphan drugs regime, particularly the international angle, is hugely important. I welcome all the provisions in the Bill, especially those on the specialist registry and on the sharing of information to get more people into trials. As with any Bill, there are some things that I believe would benefit from further explanation, but that is what Committee is for. As shadow Secretary of State, I am happy to confirm that the hon. Member for Edinburgh South West has our support for the passage of his Bill through Second Reading and into Committee. In this place and in life, there is a time to act. I believe that this is it. We have huge potential and huge talent in this country. Let us help focus that on saving more lives and giving more precious time to more people. I am pleased and proud to offer my support to the hon. Gentleman for the passage of his Bill.

• 11 Feb 2025 · Topical Questions · Hansard source

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  I congratulate the hon. Member for West Lancashire (Ashley Dalton) on her promotion to the Front Bench. Eating disorders affect over 1.25 million people, and this is the last Health and Social Care Question Time before Eating Disorders Awareness Week, which starts later this month. The Secretary of State will be aware of the amazing work done by the eating disorder charity Beat, which I met a few months ago, and to which I pay tribute. Will he back Beat’s call for broader access to intensive community and day treatment for those with eating disorders—there are limited places currently—and set out a timetable in which that will be delivered?

• 11 Feb 2025 · Topical Questions · Hansard source

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  I am grateful to the Secretary of State for that answer. He will know that osteoporosis impacts 3 million people. He is aware of the campaign by the Royal Osteoporosis Society, and the powerful parallel campaign led by The Mail on Sunday and the Daily Mail , for access to fracture liaison services across the country. Pre-election, he committed to support that, and a roll-out plan. People will look for an answer that looks to the future, not the past, so when will he publish the fracture liaison services roll-out plan, to ensure that all who need to access those vital services can, and will he work with campaigners and me to achieve that roll-out before 2030?

• 23 Jan 2025 · Rare Retinal Disease · Hansard source

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  I am grateful to the hon. Gentleman. As a professional optometrist, I am sure his bill will be in the post. Inherited retinal diseases can lead to a gradual loss of vision and can have potentially devastating effects.

• 23 Jan 2025 · Rare Retinal Disease · Hansard source

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  The hon. Gentleman is absolutely right. He and I have known each other since we came to this House, and he has read my mind, because I was about to say that there are examples of life-threatening tumours being detected through a regular eye test and a referral onwards, which has saved people’s lives. As he set out, an estimated 25,000 or so people in the UK are affected by inherited retinal diseases. As the hon. Member for Leicester South said, the most common, which I will mispronounce, is retinitis—

• 23 Jan 2025 · Rare Retinal Disease · Hansard source

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  The hon. Gentleman is absolutely right. One of the key themes of this debate has been the importance of raising awareness and of societal understanding. Before I was a Minister, I co-chaired the APPG on dementia. I think we are making progress, but a large part of the challenge that we face as a society is raising the awareness and understanding of hidden conditions or things that might not be immediately apparent to people, particularly before there is a diagnosis or some sort of visual sign, such as a white cane, or other measures. This debate will play a small but important role in helping to raise awareness of those conditions. The next challenge, as was alluded to, is diagnosis and what more can be done to deliver better and earlier diagnosis. Again, real progress is being made, but, as so often in these spaces, we can do more. It is a pleasure to be taking part in this debate, because although we often to and fro across the Dispatch Box or across the Chamber, I suspect that there is a fair degree of consensus today about where we are, what progress we have made and what more needs to be done, which is all to the good. As has also already been alluded to, when there is a diagnosis, the next challenge is the treatment and what is possible in the way of treatment. In 2019, as has been said, NICE recommended the use of a new gene therapy called—again, I will use the abbreviation rather than the technical term—the Luxturna approach; I am sure that the hon. Member for Leicester South would be able to correct me, if necessary. It was recommended to treat inherited retinal dystrophies that are caused by a specific type of gene mutation. We are seeing real progress with that type of viral vector-based gene therapy. There are also potential new treatments that we have heard about, including further gene and stem cell therapies, artificial vision therapies, electrical stimulation therapies and indeed the use of growth factors and retinal transplants. I have sat where the Minister is sitting now, so I know that there is always a challenge in this space. One of the great successes of our country is in innovation, including the rapid development of new therapies and new treatments. However, there must always be a process to make sure that they are safe and effective, and we must strike the appropriate balance in recognising that there is no infinite pot of money for any Government. In August 2024, Retina Today, a respected journal, reported that there are currently over 30 gene therapies in development for the treatment of a range of retinal diseases, so we can look forward with a degree of cautious confidence to what is being done in that space. The challenge will always be, of course, how we translate such treatments into effective, deployable and—if I am being honest—affordable solutions for people who have such conditions. The situation is similar with artificial vision technologies, including the implanting of microchips. Therefore, there is reason for us be hopeful about treatment and research. I now turn to the UK rare diseases framework, which hon. Members have spoken about today. It was first published in January 2021 and there have been a number of action plans since: there was one in February 2022, with 16 actions; one in February 2023; and one in May 2024. I was encouraged that in December 2024 the Minister’s colleague—the Under-Secretary of State for Health and Social Care, the hon. Member for Gorton and Denton (Andrew Gwynne)—reaffirmed the Government’s commitment to the rare diseases framework. I am also encouraged that there is talk of a 2025 refresh. I hope that the Minister can give a little more information on how she sees that process playing out when she speaks. Some progress was made with those action plans, but if we are being completely honest, it was perhaps not as much progress as we might have wished. There are a range of external reasons for that, but there is now an opportunity for the new Government to continue to take the process forward. From what I see and hear, they are committed to and willing to do that, which is deeply encouraging. With regard to NICE, I have already alluded to the challenges that it always faces. It has a difficult role to assess the clinical and cost-effectiveness of medicines and treatment, which is challenging because if someone is in need of a treatment—indeed, if they are desperate for a treatment—they will obviously want that treatment to be trialled. We therefore need to recognise that NICE does a difficult job in striking the right balance. NICE uses the HST—highly specialised technology—programme. As we heard, refinements to the routing criteria have been proposed, including that “The disease is ultra-rare and debilitating…having a point prevalence of 1:50,000 or less in England…is lifelong after diagnosis with current treatment, and…has an exceptional negative impact and burden on people with the disease”; that there is the “aim to encourage innovation and research”, which is a good thing that we can all support; that “The technology should be limited to the population in its licensed indication… No more than 300 people in England are eligible for the technology for its licensed indication, and the technology is not an individualised medicine”; and that there are “no effective treatment options”. I understand that just before Christmas NICE launched a public consultation, ahead of updating the HST eligibility criteria. That consultation is due to report later this year, following the closure of the consultation on 30 January. As I look at the date on my watch, I can see that hon. Members and other individuals have about a week or so in which to make any representations or put any views to that consultation, should they wish to do so. I hope that the Minister will be able to update right hon. and hon. Members on each of those aspects—where she sees us going with diagnosis, treatment and access to treatment, and where she sees that research going in the long term. I hope the hon. Member for Torbay (Steve Darling) will forgive for not mentioning him before, but I pay tribute to him for bringing to his role and to this subject—as he does to his other speeches in this Chamber and the main Chamber, and to other debates since he has arrived in this House, not limited to this subject—a measured, thoughtful and knowledgeable approach. The House is all the better for those contributions. Once again, I am deeply grateful to the hon. Member for Strangford for bringing forward this hugely important debate. This House is at its best when Members debate not the to-ings and fro-ings that we all put in our election leaflets, but consensual matters where there are genuine points of interest and where we can make a real difference for people. That is one reason why I was very keen, despite being the shadow Secretary of State, to speak in this debate—but also, of course, because it is a pleasure to serve opposite the Minister again for old time’s sake. I very much look forward to what she has to say and I am grateful to have had the opportunity to speak.

• 23 Jan 2025 · Rare Retinal Disease · Hansard source

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  It is a pleasure to serve under your chairmanship, Dame Siobhain, and to do so debating a health matter, as we have spoken many times in the past about health issues. I am very grateful to the hon. Member for Strangford (Jim Shannon), who I call my friend, for bringing forward this debate. I am equally grateful for the opportunity to serve opposite the Minister. She and I have served opposite one another on many occasions in the past—previously with me on the Government side and her on the Opposition side, but I am getting used to this side of the Chamber now. It is encouraging that she is responding because she engages with these debates and gives genuine answers. The debate will be the better for her being the Minister. The hon. Member for Strangford has brought forward a hugely important debate, as he so often does. Many important issues rarely get brought before the House, yet we are the poorer for that. This debate might not otherwise have been tabled, but it is right that we debate the issue. I pay tribute to the hon. Member for Battersea (Marsha De Cordova), who is not in the Chamber but has done a lot in the House to highlight the issue in her work with the APPG—it would be wrong not to recognise that in this debate. I also pay tribute to the Royal National Institute of Blind People for its work and to all those who have contributed to raising awareness. Before I became a Minister in 2018, I was the vice-chairman of the APPG on eye health and visual impairment, so I took an interest in this important issue back then, and it crossed my radar on a number of occasions when I was Health Minister. As the hon. Member for Strangford and the hon. Member for Leicester South (Shockat Adam) set out, while individual rare conditions may be exactly that—they occur rarely, with few people getting them—collectively, rare conditions account for a significant number of the conditions that individuals in this country have. The hon. Member for Leicester South brought his background and knowledge to bear on the subject, as he does when speaking about these matters. He highlighted the potentially devastating impact that optical and retinal diseases and illnesses can have on someone’s life. A few years ago I did something very trivial; somehow—heaven knows why—a tree branch went right across my eye and cut it. I recovered fully, but for the few weeks that I had the treatment and the cream, it had an impact on my daily life. It was trivial in the great scheme of things—although if untreated, it may not have been—and I can only begin to imagine the impact of some of those conditions, as the hon. Member elucidated.