(3Â months ago)
Lords ChamberMy Lords, this Statement takes place in the context of a relentless campaign against trans people that started among right-wing politicians in the United States of America but has been seized on here: the bandwagon has been jumped upon by politicians in this country. That is the context.
We on these Benches have a policy towards trans people that is based on our belief that trans people not only exist but have a right to exist, and they have a right to exist with the same dignity as the rest of us—and part of that is having access to appropriate healthcare. I ask the Government, as, I hope, they seek to defend this test against the kind of political campaigning that we have just heard, to bear in mind that the use of puberty inhibitors is not the harmful intervention that has just been characterised. It is a safe medical intervention that has been used for different conditions since the 1980s, and there is already a lot of data on it. However, as the noble Baroness, Lady Cass, identified in her review, an absence or at least an insufficiency of data about the use of inhibitors in relation to people who have gender dysphoria. That is why this trial, consisting of 226 people, in a highly regulated period of group activity, has been allowed to go ahead in order to generate the data that she says we need.
It is true that last week the independent MHRA approved an update to the basis on which the trial is going to happen, in order to make sure that the safeguards were increased. It is not unusual for that to happen in a medical trial. It is not unusual for trials to stop and take note of what has happened initially and then for revisions to be made to the basis on which they are run.
We on these Benches believe very strongly that medical treatment should be based on science and evidence, not on belief and ideology. This trial has been under sustained attack from political organisations such as Sex Matters which do not believe that trans people should exist or should exist with the dignities that they currently do. This trial is currently the only legal route for anybody to access puberty blockers, so in the interests not just of accurate scientific evidence but of children who need this treatment, will the Minister ensure that the people who have undertaken this research are protected from the relentless political attacks against trans people?
My Lords, I am grateful to the noble Baronesses, Lady Barker and Lady Cash, for their contributions, both of which highlight why my right honourable friend the Secretary of State led on this Statement by saying that this is
“a sensitive, emotive and difficult issue”.
He also said, which goes the point raised by both noble Baronesses, albeit coming at it from very different angles, that our duty as a Government—a duty for any Government and one which the last Government accepted and acted on—is
“to protect the safety and wellbeing of children”
and
“to follow expert clinical advice and take an evidence-led approach”.
We, like the previous Government will be sticking to that.
The noble Baroness, Lady Cash, used the word “outsourcing”. I do not believe that the last Government outsourced responsibility when NHS England commissioned a review from the most respected paediatrician in this area, the noble Lady Baroness, Lady Cass, who we are fortunate to have with us now in the House. I do not believe the last Government outsourced. I think they took a responsible, evidence-led approach.
It is worth reminding ourselves that the noble Baroness, Lady Cass, said at the time of her review:
“This is an area of remarkably weak evidence”.
Again, I agree. It is also important to observe a very strong divergence of medical opinion. There is always a choice. We can continue with uncertainty in an unsafe setting, where there is that strong divergence of medical opinion, or we can seek the evidence. Nobody in your Lordships’ House can predict the evidence because it does not exist yet.
As I say, I think the previous Government had the right approach, which was why we supported it in opposition. They accepted the recommendations of the review by the noble Baroness, Lady Cass, and, again, I feel that that is the responsible way forward.
It is worth reminding ourselves that the use of puberty-suppressing hormones has been banned indefinitely for gender dysphoria outside of research settings, so the trial we are talking about today is being set up to gather the evidence that the last Government wanted and we continue to want.
The trial was first approved by regulators in November 2025 and in February the MHRA requested changes to the trial protocol to make it even safer. This is quite normal in how these matters are dealt with. Perhaps I can give the noble Baroness, Lady Cash, the clear assurance that the changes to make it safer—which is absolutely the right thing to do—were around the age of those included in the trial, and monitoring possible impacts on bone density, future fertility and cognitive abilities. These are all points and concerns rightly raised by the noble Baroness, Lady Cash, and have indeed been raised on a number of occasions in your Lordships’ House. I emphasise that it is usual for dialogue such as this to take place during a trial.
Reference was made to safeguards. There are a number listed. Again, I would ask noble Lords to look at them, but I will mention some of them. Children can participate only with the consent of a parent or guardian, and the child themselves must consent or assent. To the point raised by the noble Baroness, Lady Cash, they can participate only if they are not subject to any safeguarding concerns, and if there is sufficient understanding by the young person—but also by their parent or guardian—of the nature of the treatment and its potential advantages and disadvantages. They can participate only if they have been deemed clinically appropriate by both the NHS care team and the national multidisciplinary team, and only if they are already accessing NHS gender services, including participating in a tailored package of psychosocial care.
All these safeguards rightly build in considerable safety preservation and ensure that it is the right people. I emphasise that there is no compulsion to take part in a trial, and indeed just getting close to one is a rigorous process. Due to ongoing legal proceedings, as referred to by the noble Baroness, Lady Cash, recruitment on to the trial will not begin immediately. We are currently in a set-up period, and we will set out our future plans in due course.
The noble Baroness, Lady Barker, referred to protecting researchers from “relentless” attacks. I hope the whole of your Lordships’ House would agree with that. Those who carry out research and those who lead reviews—such as the noble Baroness, Lady Cass, and indeed many others on our own Benches—in many different areas have been subject to the most relentless attacks. These have not all been via social media: sometimes they have been physical attacks. Violence is totally unacceptable and we cannot condone it in any way.
To the noble Baroness, Lady Cash, I say that prospective participants will indeed have comprehensive information on the advantages and the potential risks, in a way that speaks to how they need that information. The minimum ages were agreed through detailed scientific discussions between the MHRA and the trial sponsor. This is all driven by what will provide the right evidence that we need for decisions, and that evidence is clinically led. I return to the point about age, which I know exercises noble Lords, and is a fair question to raise. It was recognised during discussions between the trial sponsor and the MHRA that the right balance had to be struck between the maturity level of participants and providing treatment at the most clinically appropriate point in puberty. That would, of course, be earlier for birth-registered females compared with birth-registered males.
The noble Baroness, Lady Cass, may make this point herself, but I am grateful to the noble Baroness, who will be available for a drop-in discussion with anybody who would like to go into more detail. I hope that noble Lords will avail themselves of that.
The noble Baroness, Lady Cash, asked whether the Government had carried out an assessment of future liability. All research trials are expected to have appropriate insurance, and this one will. It will take into account any potential risks in a financial setting, as the noble Baroness referred to.
I will address one final point, although I am always happy to assist if noble Lords have other questions. The noble Baroness, Lady Cash, asked about six out of seven clinics not releasing data. Data is very important. That is why NHS England is re-engaging with data-sharing organisations, on which the data study will be dependent. Of course, that is separate to this trial, but we absolutely expect all commissioned adult gender services to collaborate with the study to ensure its successful completion.
My Lords, I remind the House that the next 20 minutes are for questions from Back-Benchers only.
I thank the Minister. The noble Baroness, Lady Barker, mentioned the need for data and scientific evidence. For the sake of transparency, we should mention that the Liberal Democrats received ÂŁ1.33 million from Ferring Pharmaceuticals, which produces some of these puberty blockers. Further, just for clarification, Sex Matters has never believed that trans people do not exist. It is important to put that on the record.
I will press the Minister on the data linkage studies, because we would not need to put forward 226 vulnerable young people had NHS England and Ministers acted with a more robust strategy two years ago, when we raised this issue in the House, and forced the data linkage information from GIDS and others to be released so that it could be peer reviewed. Had that happened, we would have all the data on the short-term implications of these puberty blockers and on the long-term ramifications, and we therefore would not need this dangerous and risky puberty blockers trial, which, I have to say to the House, is going to be subject to very significant litigation.
I am sure that the noble Lord will understand from my earlier comments that I do not accept the characterisation of the trial. I urge all noble Lords to look at the facts on the safety provisions, requirements and stringency, which have massively increased—perhaps since some noble Lords originally looked at the matter. Implicit in the noble Lord’s query is to question why we are having a clinical trial when there are a number of children who have already taken puberty blockers. That is a fair question, but I remind the noble Lord that the conclusion of the noble Baroness, Lady Cass, was that there was not enough evidence, for all the reasons I referred to.
It might be helpful to make clear that the information collected by the linkage study, to which the noble Lord referred, is much more limited than the detailed information that the research team will be able to collect on the relative benefits and the risks. I confirm that NHS England, which is responsible for the data linkage study, is taking the time to ensure that data is shared by the relevant organisations—which, after all, is exactly what we are all after.
My Lords, it is such a shame that the party opposite resiled from cross-party agreement on this research. It is fair to question its motivation for doing that and possibly reach the conclusion that it is unsympathetic to trans people. I welcome the Statement and my noble friend’s calm approach, which contrasts sharply with some of the language that has been used around this important issue. When it comes to the PATHWAYS trial, does my noble friend agree that we must follow the science and avoid vilification, polarising language and politicisation, for the good of young people and our communities?
I certainly do agree with my noble friend. Indeed, her observations apply to any matters in respect of health, which should be evidence-led, based on fact, and based and rooted in scientific evidence. What we are dealing with here, as I said, is effectively a choice: a choice to do nothing and continue not providing the right healthcare in a safe and correct manner or to seek the evidence, as an independent review by the most esteemed paediatrician—as I said, it started under the previous Government, and rightly so—has advised us to do. I must emphasise that, if anybody listened, as I did, to the Secretary of State making his Statement in the House of Commons, I hope they will have got a sense that, actually, no one has jumped into this decision. What the Secretary of State said was that it was important to step back and look at the evidence. He himself told the Chamber how challenging he felt that was. I ask noble Lords never to underestimate how challenging this is, no matter what Government, what party, or what individual.
My Lords, I agree with what the noble Baroness just said, but I have to say, before I ask my question, that I am hugely disappointed that the noble Baroness, Lady Thornton, has chosen to question the motives of parliamentarians who are raising legitimate questions. That is no way for us to deal with an issue that is incredibly sensitive and involves children.
Clearly, a lot of very elaborate safeguarding protections are being put in place for this trial. There is an argument sometimes, when so much of that kind of thing is necessary, whether that in itself tells us something that we need to know about such a trial. However, if the trial leads to the puberty blockers being given the go-ahead, what can she tell us about the extent of the protections and safeguards that will be made available to all children who would then be eligible for these drugs? My concern, if they do become widely available, is that the pressure from teenagers to get access to those drugs will mean that it will not be possible to control it in quite the same way as this trial is being controlled at this time.
I understand the point that the noble Baroness is making but, in answer to her first question, this is not outwith any trial or intervention because there always has to be the clinical evidence and the approach to make sure that we are always seeking benefit, not harm. I am glad that the noble Baroness acknowledged the extensive safeguards. I hope that would reassure your Lordships’ House. Indeed, for children and young people who do take part in the trial, there will, for example, be repeated follow-up physical checks, questionnaires, blood tests, bone density scans and cognitive testing, all at the relevant time points. There will be psychosocial care throughout the trial. Importantly, the protocol also clarifies that, where there are significant concerns—again, I know this is a matter of concern about psychological well-being—that case then has to be promptly reviewed by the right clinician.
As for the future, I think we should wait for what the trial says. I am not going to speculate. I point out that we are not waiting, in terms of NHS care and support. Three services for children and young people have already opened in north-west London and in the south-west for those with gender dysphoria. NHS England will aim to deliver service provision in each region of England by the end of 2026-27. Again, that programme of work, rightly, was started under the previous Government. I think we all acknowledge that there are young people with gender dysphoria. They are to be seen, supported and dealt with in the most caring, appropriate and scientifically evidenced way possible.
Baroness Cass (CB)
My Lords, this is complex, and people across both sides of the House share one objective: to be cautious, careful and protective of children and young people. It is not my place here to answer many of the perfectly valid questions that have been raised, but I am developing a briefing based on proceedings in the Commons yesterday and I am listening carefully today, so I will not pick up on issues around the linkage study. I will refer to the Minister on one or two things.
The noble Baroness, Lady Cash, is right to say that the vast majority of children and young people desist, but the noble Baroness, Lady Barker, is also right to say that some do not. The clinicians working in the new centres are gaining considerable experience and working holistically to try to determine which young people—a tiny number—they feel may benefit from these medications.
I am not worried about the children in the trial but I am seriously worried about the children not in the trial. Approximately 240 children who have come to the new clinics have admitted to being on an extraordinary cocktail of medications, including testosterone from age 11, with facial hair at 13. Why are they doing this? They are not being perverse: we have told them for 15 years that these drugs are safe, effective and even life-saving, so is it any surprise that they will now go to any lengths to get them? They are not foolish, and they say they want to know the answers on that. We as the medical profession have created this issue, so it is on our heads to solve it. Does the Minister agree with me that the children in the trial will be at considerably less risk than the ones we know about who have come to the NHS and the very many more we are aware of who are not coming to the NHS but are going straight to rogue providers?
I agree with the noble Baroness and I thank her for the offer of the briefing, which I mentioned earlier, and for her observations. I associate myself with what she said about the complexity of the matter, which is why I take it so seriously. The fact is that this situation exists. I am exercised about those who are accessing puberty blockers in an unregulated fashion. It is extremely concerning, which is another reason for this trial, as well as the services being set up. That is why we indefinitely banned the sale and supply of puberty blockers via private prescriptions, taking effect from January 2025. If offences are committed then those involved will be brought to justice, and rightly so.
My Lords, in my pre-political life I was a senior teacher at a very large comprehensive school, and responsible for child protection and what used to be called pastoral care. I dealt with lots of children who were confused about their sexuality, their place in the world and many other issues. I am afraid that I too would have asked the questions that the noble Baroness, Lady Cash, asked, based on that real experience. My question is aligned to my past experience. Studies show that a disproportionate number of children and adolescents with gender distress have neurodivergent conditions, such as autism. These are protected under the Equality Act. Could the Minister explain how neurodivergence was taken into account when designing the PATHWAYS trial, in particular the consent process—that is what troubles me the most, if I am honest—and any equality impact assessment?
The noble Baroness gives me the chance to reiterate that all the questions are valid. We are dealing with a complex, sensitive and difficult issue. What matters is that we get to the right place. As the noble Baroness, Lady Cass, said, I know we are all agreed on protecting children and young people. That is our motivation.
The noble Baroness asked about consent. As I said, children can participate only with the consent of a parent or a guardian, and the children themselves must consent or assent. The individual circumstances and nature of a child will be closely considered as part of the consideration. That is absolutely crucial. Children and young people may participate only if they are not subject to any safeguarding concerns. I am happy to speak in greater detail to the noble Baroness. All of this will be extremely rigorous, and rightly so. When we talk about the trial, we are talking about volunteers—that is crucial. They can participate only if they have been deemed clinically appropriate by both the NHS care team and the national multidisciplinary team. There is, correctly, the opportunity at every level to consider every child or young person as an individual, which is so important.
Baroness Alexander of Cleveden (Lab)
As some noble Lords know, I have some experience in my own family of the challenges around gender dysphoria and the difficulties for the trans community. I also have the experience of my mother, who was a haematologist at a time when there were great controversies surrounding that discipline. I was struck by what the noble Baroness, Lady Cass, said: there are GPs, psychiatrists and paediatricians—all sorts of medical professionals—wrestling with what the evidence may or may not show. While this is an extraordinarily difficult area, does the Minister agree that, in a world where there have been difficulties in the recent past, the responsibility of legislators is to try to equip all those professionals in the future with a clinically approved and evidence-led approach? It is only by having a highly safeguarded trial that we will move forward in a way that supports professionals operating in this area. If we demonise those individuals, the risk is that we never secure the evidence we need for the future.
I agree with that. In the Statement itself, the Secretary of State made the point that PATHWAYS is rightly one of the most scrutinised UK clinical trials of recent times. I am sure we all welcome that.
My Lords, I would like to take the Minister down memory lane and explore with her the Mental Health Act and consent by those under 16. Can she confirm the law relating to that is still Gillick competence? My other questions follow on from that. In the situation where within the research programme they determine that the child is Gillick competent but the parents disagree, what remedies do the parents have and would they be able to go to court to challenge that, and be funded to do that? On the reverse, if the child is not deemed to be Gillick competent to give consent, and then the parents can give consent but are in dispute with each other, what remedies are there for them to settle that matter, and would they be funded to bring any such remedy?
I will approach this in the most straightforward way I know. Obviously, if there are other matters, I would be very happy to talk to the noble Baroness, as I have before. From my point of view, the number one safeguard is not an either/or. Participation can occur only with the consent of a parent or guardian and—not or—the child themselves. In some of the circumstances the noble Baroness raised, that will not be an issue. Clearly, if there is any doubt about consent, assent or suitability, the child or young person will not be included in the trial; it is only where it can be shown that all the safeguards apply.
My Lords, I listened very carefully to both sides of the argument, which is very emotional and charged because people hold strict views on the trans community or the risks to children. Without the clinical trial, where will we be? Is not the clinical trial needed to answer some of the very questions that have been asked?
The noble Lord takes me back to where I started. This Government, any Government, have a choice, but there is no neutral option here. We know that the status quo—which the last Government accepted and the noble Baroness, Lady Cass, clearly identified—is totally unacceptable and young people are not being protected. It would not be responsible to do nothing about that. We can discuss and disagree or agree about what the right thing is to do, but in his Statement, the Secretary of State made it clear that he has a responsibility to look at evidence and take clinical advice. That is the right thing to do.
(3Â months ago)
Lords ChamberTo ask His Majesty’s Government what assessment they have made of the level of provision for treating patients with resistant hypertension including financial investment in renal denervation treatments.
My Lords, the NHS is increasing the diagnosis and detection of hypertension and is supporting the identification of resistant hypertension and its treatment. Renal denervation remains an option for some patients but is currently not widely commissioned by the NHS, in line with NICE guidance. The cardiovascular disease modern service framework will further support diagnosis and accelerate our commitment to reduce premature mortality from heart disease and stroke by 25% in the next 10 years.
My Lords, I thank my noble friend the Minister for her Answer. This Government, thankfully, have a direct focus on prevention. In view of that, the UK expert clinical consensus on renal denervation, published in the Heart journal, concluded that existing commissioning arrangements no longer accurately reflect current evidence and technology evaluation on renal denervation. I therefore ask my noble friend the Minister: will the Government reconsider and commit to reviewing national commissioning policies for renal denervation, so that funding and eligibility criteria for this technology are made clear and consistent across all eligible sectors?
I can indeed give the commitment to my noble friend that NHS England is currently reviewing the clinical evidence for the commissioning of renal denervation treatment, and recommendations are expected next year.
Baroness Pidgeon (LD)
My Lords, while innovative treatments have an important role, uncontrolled high blood pressure remains one of the leading drivers of stroke, heart attacks and kidney failure. What work are the Government undertaking to improve prevention and management of high blood pressure, particularly in communities with the highest prevalence and the poorest outcomes?
The noble Baroness is right in what she says. This is a largely preventable condition and requires much movement from treatment to prevention, as the noble Baroness said. That means bearing down on certain lifestyle factors and encouraging people to seek to give up smoking, or not to take it up in the first place; to tackle obesity and support people in that; and to reduce alcohol consumption. It is important to note that identifying it at an early stage is crucial, because it allows us not only to support lifestyle changes but, where necessary, to provide medical intervention.
My Lords, I welcome the remarks made so far by the Minister. We are aware of the drivers and that hypertension can lead to strokes and heart attacks. In particular, about 5% to 10% of those with hypertension have resistant hypertension. I ask the Minister specifically: when the cardiovascular disease modern service framework is published, will the Government consider explicitly defining resistant hypertension as a distinctive, high-risk subgroup, so that we will be able to ensure that a focus can be put on it and to help strategies to minimise serious cardiovascular diseases?
The noble Lord makes a helpful point. Indeed, the modern service framework will soon be published. Of course, as blood pressure is one of the seven risk factors for cardiovascular disease, as the noble Lord referred to, we have to improve detection and management. That is what the modern service framework will drive forward, particularly in local areas. Yes, it will make reference not just to hypertension, which is more widely applicable, but to resistant hypertension, as he suggested.
My Lords, NICE has recognised renal denervation as a potential treatment option for resistant hypertension, yet its use remains limited and subject to special arrangements for governance and research. What assessment have the Government made of the extent to which eligible patients are able to access renal denervation across England? Are Ministers concerned about the emergence of a postcode lottery in access to the treatment?
Looking to the future, obviously, one can only act on clinical guidance. Renal denervation, as I mentioned to my noble friend, is an emerging option for carefully selected patients at the moment, as the noble Lord said. What matters now is that evidence is emerging, and that is why it is being reassessed. We will not have to wait too long to see what the future will bring in this regard, but it certainly has a role to play.
My Lords, I will refine the previous questions. Resistant hypertension occurs when the blood pressure does not respond to standard treatment of two, three or even four drugs—hence we call it resistant hypertension. The reason why the renal system is involved is because the sympathetic nervous system acts between the kidneys and the brain. That controls vasodilatation and the production of hormones that raise the blood pressure. By denerving the renal system, which are nerves on the arteries of the kidneys, you can cut out one of the nervous system’s interactions between kidneys and the brain. What is important, therefore, is that people who suffer from resistant hypertension are treated by specialists at a specialist centre that considers denervation as one of the options, because it is not always the only answer. Therefore, does the Minister agree that people with resistant hypertension should be treated in a specialist centre?
I certainly would agree with that. Indeed, those who are diagnosed with resistant hypertension—and the noble Lord has, as ever, outlined how that is defined in a far better way than I could have done—can be referred by their GP to secondary care hospital hypertension services, so, to answer the point made by the noble Lords, Lord Patel and Lord Evans, that does mean in-depth investigations and expert management. The House can be assured of that.
My Lords, I declare my interest as chair of the Health Data Research Service. We know that hypertension remains underdiagnosed, and it is right that the Government have diversified the detection pathways. However, between those first high recordings at a pharmacy or in social care, the information does not always flow through to the treatment location, so people remain undertreated as well as underdiagnosed. Can the Minister say what steps the department will take to address this failing?
That clearly matters immensely. We have invested in community pharmacy services, which have brought this into the heart of communities and made it easier and more attractive for people to have their blood pressure checked. As of February, we have some 10,000 community pharmacies delivering. We are also developing the online NHS health check and the modern service framework. Information from pharmacies should be going direct to GPs, but I am heartened, as we move towards the health Bill, by the advent of the single patient record.
My Lords, following on from the extraordinary explanation by the noble Lord, Lord Patel, of the background and the need for specialist centres, would a pilot project undertaken by NHS research help, in case there are any delays in assessing the information before us? This is something that the NHS should do more often—specific pilot projects to see how something works in practice.
As my noble friend says, we have had great success, and it has really helped us to have pilot projects in other areas such as mental health services. I ask my noble friend warmly to anticipate the modern service framework, because that will set out how we are to go forward in this regard.
My Lords, following on from my noble friend’s question and the Minister’s answer, there is no definition in the department of preventable spending. Will the new modern service framework determine a definition of what preventable spending is so that it can be tracked over time to see whether prevention is becoming the norm?
The modern service framework will focus on the cardiovascular disease pathway. I take the point that the noble Lord is making and assure him that, as he and the House will be aware, one of the three main pillars in the 10-year health plan is the move from sickness to prevention. Therefore, we will be looking at how we ensure that it delivers the results that we need. The modern service framework will be focused on consistent high quality and equitable care—in other words, on outcomes.
(3Â months ago)
Lords ChamberTo ask His Majesty’s Government what steps they are taking to assess and prioritise investment in trials of new dementia treatments in the NHS.
My Lords, across the last five financial years, the Government have spent more than ÂŁ555 million on dementia research, including into dementia diagnostics and trials of potential treatments. We are working for Britain to be at the forefront of transforming treatments and a world leader in dementia trials expertise. We are prioritising that through investment in the UK Dementia Trials Network and the Dementia Trials Accelerator.
I am very grateful to the Minister for that update. Dementia is now the most prevalent mental disorder in the country and the leading cause of death in women. I think she will agree with me that, at the moment, only 30% of dementia cases ever get diagnosed. If we are to benefit from some of the new developments in treatments, which I recognise are not yet as efficacious as we would like, there has to be some more investment in ensuring that people get an early diagnosis, so that patients can not only be linked into trials as they come up but get the help and social support that they—and their families, of course—will need. Does the Minister have any plans to increase the dementia diagnosis rate?
We do indeed, and I certainly agree with the noble Baroness. A timely diagnosis is absolutely vital to make sure that people with dementia can access everything they need, live well and remain independent for as long as possible. We are committed to recovering the dementia diagnosis rate to the national figure of 66.7%, and as of 31 March the figure stood at 66.3%. That is an increase from the time before and we will continue, through developing the modern service framework, to drive that upwards.
Baroness Pidgeon (LD)
My Lords, dementia is projected to reach 1.4 million people by 2040, yet Alzheimer’s Research UK reports that up to 45% of dementia cases could be prevented or delayed. Will the Government commit to a national dementia public awareness campaign to support risk reduction and healthier ageing?
Encouraging people to age well and healthily is indeed part of our whole drive in terms of prevention and moving away from sickness. As part of this, it is absolutely crucial that we have the NIHR and UKRI, which are the relevant arms of our health service where we are investing in that dementia research. Causes, diagnostics and prevention in order to get treatment, care and support, as the noble Baroness says, are absolutely crucial. I would include carers in that too.
My Lords, while accepting the importance of early diagnosis and the improvements that are being made, does my noble friend agree that families—and she has mentioned carers—are often reluctant to seek a diagnosis? They think that these are only small symptoms of confusion and do not want to go for the full diagnosis on dementia. Would the public awareness campaign, mentioned from the other Benches, also include encouragement to families and carers to seek that diagnosis?
My noble friend is right: we want to encourage people to come forward for diagnosis and care. On the point that my noble friend and the noble Baroness, Lady Pidgeon, made about an awareness campaign, I will raise that with the Minister for Care.
My Lords, NHS England has said that implementing some of the new, promising drugs that exist, when they get clearance from NICE, is going to be one of the biggest challenges the NHS has faced in its 75 years. Is the Minister confident that the steps that she has set out for improving diagnosis are up to that challenge, so that we can reduce the proportion of dementia patients who do not receive a diagnosis—around a third—to much smaller levels?
Yes, indeed. I am feeling positive about the way we are moving forward, about increasing research and about developing a frailty and dementia modern service framework by the end of this year, as the noble Baroness, Lady Casey, has called for. On the question of drugs, to which the noble Lord has referred, I can confirm that NICE is currently evaluating two licensed disease-modifying treatments for Alzheimer’s disease; it will meet to consider that on 8 July.
My Lords, if our intention is to increase the diagnosis rate of early dementia, normally what we would do is to find a screening test that would identify people at risk of any disease. There is one called Mini-Cog; it takes three minutes to administer and uses word registration and recall and a clock to diagnose early dementia. Why do we not use that as a screening test, easily implemented by trained people to increase the rate of diagnosis of dementia?
That will be considered. We have the Dame Barbara Windsor dementia goals programme, which very much aims to speed up the development of new treatments for dementia and neurodegenerative conditions by accelerating innovations, including in clinical trials. I agree that we need diagnosis that is effective and thorough, and the point that the noble Lord raises will of course be considered in all that.
The Earl of Effingham (Con)
My Lords, Wes Streeting was absolutely right when he said that prevention is better than cure. The onset of dementia can be delayed by regular exercise and eating healthily, but the facts are that one in three adults is not taking the recommended NHS guidelines for exercise. Ultra-processed foods provide more than half the total energy intake in UK adults, and the National Institute on Aging has suggested that what we eat, such as fruit, vegetables and whole grains,
“affects the aging brain’s ability to think and remember”.
Fixing this will not only make the population healthier, saving the NHS tens of billions of pounds, but prevent the onset of dementia. Surely it is time to act at pace.
I believe that we have upped the pace. It is very important, as I know the noble Earl is aware, to go with evidence-based solutions. Indeed, when I speak to the point about an evidence base, that is why we have several research initiatives, including, as I mentioned, the dementia trials network and the trials accelerator. Both of those are speeding up the set-up of early and late-phase clinical trials. We have already gone well under our ambition of 150 days to set up, at 122. We are positioning ourselves well to be a global leader in a way that I am sure the noble Earl would want us to be.
Lord Winston (Lab)
My Lords, does the Minister agree with me that, while the noble Lord, Lord Patel, is quite keen on screening tests, we can both agree that screening tests have all sorts of major disadvantages, such as false diagnosis or unclear diagnosis? If we are not careful and do not have a test that is really reliable, we could end up with much more unnecessary worry for people who, for all sorts of reasons, believe that they have dementia when actually they are simply being a bit forgetful. That is important for health.
My noble friend makes a very fair observation that probably applies to many situations. When we talk about diagnosis, we are talking about getting the right people diagnosed, and quickly. That is why the modern service framework, as I mentioned earlier, will be developed and is being developed with partners and those with a particular interest. That will make sure that any interventions not only improve dementia care but improve diagnosis and the waiting times for diagnosis.
My Lords, it is welcome that the Government seem to be setting national targets for dementia diagnosis. But targets are valuable only if they are accompanied by timeframes, not simply for diagnosis but for a treatment plan. Will the Government consider proposals such as from Alzheimer’s Research UK, which talks about an 18-week target for diagnosis and the development of a treatment plan for each patient?
We will indeed consider that, and we are very grateful to Alzheimer’s Research UK and other organisations for working with us to get to the right place.
(3Â months, 1Â week ago)
Lords ChamberMy Lords, I am most grateful to the noble Baroness, Lady Scott, for securing this important debate, which matters so much to so many, and for her clear introduction to these matters. I am also grateful to all the other noble Lords who spoke for their thoughtful and probing insights. The debate has certainly underlined the profound impact that myalgic encephalomyelitis—ME/CFS—has on those living with the condition, but also on their families, friends, carers and communities.
Noble Lords have spoken very movingly about the reality, and I am grateful for the welcomes across the House for a number of government actions. I recognise what noble Lords have described, which is—to pick up a few points—a lack of awareness, variability in services, the stigma faced by those with ME/CFS and the need to go further. We recognise all of that.
The fact is that the system has not worked as it should for people. But that is why, early on, the Government prioritised publication of our final delivery plan on ME/CFS, which we published in July last year. I assure noble Lords that we work closely with those most impacted by the effects of this debilitating condition, including those with lived experience. I add my thanks to charities and campaigners for their work, because they have given voice to this subject. We want to ensure that patients are truly heard by a system that can respond to those voices, because historically that has not been the case. So the plan sets out a clear direction for improvement, and it focuses on three key ambitions: boosting research, improving understanding and education, and strengthening the care and support people receive.
The noble Baroness, Lady Scott, and the noble Lord, Lord Evans, raised a number of questions about funding timelines and accountability. I confirm that the department has overall responsibility for progress against the final delivery plan, and officials are actively tracking progress. It is very much worth noticing that three-quarters of the plan’s actions have been completed or commenced or are currently ongoing. I say to the noble Lord, Lord Evans, that an update on the delivery of the final delivery plan will be communicated next month.
We know, as has been spoken about, that a lack of research has meant that those with ME/CFS have been left feeling undervalued, frustrated and overlooked. That is why the final delivery plan commits to stimulating research, including through new funding opportunities, better support for researchers and building capacity and research. We have gone beyond the actions in the final delivery plan, as all noble Lords were good enough to reference, by investing ÂŁ4.75 million in SequenceME, which will create the first high-resolution genetic map for ME/CFS. I believe that this will offer new hope to patients and pave the way for better diagnostics and future treatment, which, after all, is what we need.
All noble Lords asked for further commitments. To the points I have just made, I add that the Government are investing in turbocharging clinical trials research. Key to this is enabling new treatments to get to patients faster; and the NIHR has funded projects to explore the feasibility of a clinical trial for treatments for ME/CFS and other post-acute infection conditions, as noble Lords have asked for. Of course, funding and support is available for researchers, and the Medical Research Council and the NIHR welcome funding applications for research into ME/CFS and other post-acute infection conditions. Addressing gaps in knowledge and awareness around this condition is also crucial, because people who live with ME/CFS have to be seen and feel seen. They need to be reassured, and they need evidence that they are going to be taken seriously. I am therefore glad to say that NHS England has developed an e-learning programme, which consists of four modules and seeks to improve the understanding of healthcare professionals, and to support them to provide the right care at the right time for those who need it, including those with severe ME/CFS.
Experiences of care vary widely—that should not be inevitable, but we recognise that they do—but I believe that those with ME/CFS deserve a high standard of care, no matter who they are or where they are. We will seek to improve that through the development of a new template service specification for mild and moderate ME/CFS, and that will expand to include the severe nature of the condition. The template will focus minds and demonstrate to integrated care boards the ways in which NICE guidelines can be implemented. Key here too is that it will provide good practice examples for ICBs, so they can model their own services on where it is being successful.
There is, as I said at the beginning, much more to be done. We are working at pace to implement this final delivery plan, and we will work continually with stakeholders to make sure that it meets the mark. The noble Baroness, Lady Scott, and the noble Lord, Lord McCrea, asked about interim support. We are not just committed to considering a specialised service for those with a very serious version of the condition; we are also exploring what preparatory work can be taken forward ahead of April next year. We want to progress the work at pace once the transformation in respect of NHS England has been concluded. In the meantime, we are considering a range of potential interim measures to support those with severe ME/CFS, including further promotion of the e-learning modules that I referred to, making sure they span very severe and severe ME/CFS, alongside the recommendations that have been presented to government directly by patient groups.
The noble Baroness, Lady Scott, asked about setting up an expert advisory panel. We do not currently have plans for such a panel for those with severe ME/CFS, but I assure the noble Baroness that we engage very closely with experts from NHS England, clinicians and experts in the charity sector so that we can develop a much broader approach to supporting patients with ME/CFS.
In response to the question about exploring whether a specialised service should be commissioned for very severe ME/CFS, any decision on whether this committee would be convened remains at the discretion of the Secretary of State. I say to the noble Lord, Lord Evans, that we recognise that ME is more likely to affect women and that early results in the DecodeME study have found that women with ME/CFS tend to have more symptoms and co-occurring conditions than men. That will be taken into account. Again, I am most grateful to the noble Baroness, Lady Scott, for her work and advocacy in this area.
Before the Minister sits down, I asked what support is being given to those services that are unable to fulfil the NICE guidelines, and about the Government’s attitude to including reasonable adjustments in the information on the single patient record.
I would be pleased to take those two points away and look at them, particularly the second, which is a very practical suggestion. I am grateful to the noble Baroness, as ever, and I will gladly write to her.
(3Â months, 1Â week ago)
Lords ChamberTo ask His Majesty’s Government what plans they have to use artificial intelligence in prostate cancer screening pathways to reduce late diagnosis of that disease.
My Lords, we are committed to looking for opportunities to implement AI in cancer services, investing ÂŁ113 million in the AI in health and care award. As AI in screening is still in a trial phase, it will not be used in the targeted prostate cancer screening programme when this is introduced. However, we are maintaining the model used to develop this screening recommendation so that any emerging evidence that supports using AI in screening can indeed be considered rapidly.
My Lords, I thank the Minister for that Answer. A few months ago, I was diagnosed with prostate cancer. I want to thank the NHS for the excellent treatment it has been giving me, but it made it clear to me, after my first biopsy, that early detection was vital in the context of my treatment. I would also like to thank high-profile personalities, such as broadcaster Jeremy Clarkson, former soccer player John Barnes and, of course, Olympic cyclist Sir Chris Hoy, for making the same point about early diagnosis.
Prostate cancer is the most commonly diagnosed cancer in the UK and there is still no national screening programme. The UK National Screening Committee has admitted that its model does not look at artificial intelligence within the diagnostic pathway, but the model remains open to being updated. Can the Minister clarify how the evidence will be collected in relation to artificial intelligence? It is moving at pace in trying to sort out this terrible illness. How can the stakeholders engage with the committee?
I wish the noble Lord well as he deals with the diagnosis. I am sure that many would associate with his kind comments about the NHS care he has received.
I very much agree that early diagnosis is key. That is why we have introduced the first targeted prostate cancer screening programme. It will roll out next year and will focus on those at the highest risk. To the noble Lord’s question on AI, there is a whole range of ways in which we will gather the information necessary—for example, developing a new National Institute for Health and Care Excellence clinical knowledge summary. That will support discussions for those men who are not eligible for this programme. Also, through the cancer programme innovation open call, we will pilot the use of AI to assist radiologists using MRI to detect clinically significant prostate cancer. There is much scope in this area, and indeed our 10-year plan confirms that.
My Lords, while artificial intelligence may improve the interpretation of diagnostic tests and support earlier identification of prostate cancer, does the Minister agree that technology alone will not reduce late diagnosis unless it is embedded within a wider prevention and early detection strategy? What steps have been taken to ensure that AI tools are integrated into primary care pathways, with targeted outreach to high-risk groups, particularly Black men, and equitable access to different communities?
Yes, I agree with the noble Lord. While we are ambitious about the benefits of AI and wish to embrace them, we are equally clear that safety, fairness and public trust have to come first. That means that the National Commission into the Regulation of AI in Healthcare, which was established by the MHRA, will review the current regulations and provide the recommendations for a new regulatory framework. I assure your Lordships’ House that AI always will support professionals, not replace accountability.
Baroness Pidgeon (LD)
My Lords, AI has the potential to significantly improve options for patients, but this will be possible only if NHS staff have the right skills, time and infrastructure to be able to test and use such tools. How will the Government invest in staff to help drive this innovation and improve outcomes for patients?
That is why we are publishing the workforce plan fairly soon, why we are building our cancer workforce and why we are creating new opportunities across multidisciplinary teams. Certainly, the use of AI is absolutely key, and we are, not least, working closely with the Royal College of Radiologists.
My Lords, at the other end of the scale of artificial intelligence is canine intelligence. The wonderful charity Medical Detection Dogs has had wonderful results in early and accurate diagnosis of prostate cancer. Are the Government looking at this as one of their diagnostic tools? If the Minister does not have labradors and spaniels in her brief, perhaps she can write to me.
I am so grateful to the noble Baroness, because I do not. However, I am aware of the great contribution being made to cancer detection, and the department is looking closely at that. I thank her for raising it.
Baroness Royall of Blaisdon (Lab)
My Lords, I warmly welcome the Government’s £42 million investment in the TRANSFORM trials, and I am extremely grateful. AI MRI tools are often trained on populations that underrepresent Black men, and they are at double the risk of prostate cancer. Will the Government require AI diagnostic tools to be independently validated on diverse populations before wider NHS use?
We always take into full account my noble friend’s very important point. She referred to the TRANSFORM trial, which will enable all eligible Black men to be invited to stage 2 of the trial. It is worth saying that Black men are historically underrepresented in clinical trials, and we are working closely with Prostate Cancer UK to work alongside and draw in communities from across the United Kingdom.
My Lords, I will follow up on that reference to the TRANSFORM trial. Black men are around twice as likely to develop prostate cancer and to die from it, yet historically they have been underrepresented in many screening and research programmes. The Minister mentioned the TRANSFORM trial, which hopefully will transform that inequality, but what assurance can she give that AI tools being developed for prostate cancer screening will reduce as much as possible any bias against higher-risk populations, such as Black men, and will not inadvertently widen health inequalities?
My Lords, several trials are assessing the use of AI for prostate cancer screening and diagnostics, as well as testing the accuracy of digital imaging and histological imaging of biopsies to understand better the progression of disease. Some of them are well funded. For instance, the screening programme has ÂŁ42 million of funding. Similar trials are conducted for lung, ovarian, breast and pancreatic cancer. The common issue that comes out is that we need digital transformation throughout the NHS to deliver any of these uses of AI for cancer. We need a workforce that is trained to use it, and I hope that the workforce strategy that the Government are about to publish will specifically include how the workforce will be trained to use AI in healthcare.
As I said, your Lordships’ House will not be waiting too long for the workforce plan, but I certainly recognise the noble Lord’s points. He describes the transformed service set out in the 10-year health plan, and the workforce plan will support that.
My Lords, although I very much welcome the programme for Black men, who are at greater risk, does the Minister not accept that very many of us who are not Black—I am one—have benefited from early diagnosis? Does she not accept that, going forward, it will not be sustainable to have testing available only to one ethnic group? It needs to be universal.
Perhaps I can clarify that the TRANSFORM trial is not exclusive to a particular group. We are looking at people who have susceptibility to prostate cancer because they carry the gene and there is family history. I simply point that out because I hope it will be a reassurance to the noble Lord.
(3Â months, 1Â week ago)
Lords ChamberTo ask His Majesty’s Government whether they intend to mandate a statutory minimum ring-fenced allocation within Integrated Care Board budgets for community-based transformation.
My Lords, integrated care boards are responsible for commissioning health services to meet local need. We do not intend to mandate a statutory minimum ring-fence for community-based transformation. Through the medium-term planning framework and the neighbourhood health framework we are requiring systems to set out how they will shift activity from hospital to community. They need to provide clarity and consistency in order that we scale neighbourhood services and teams and develop locally led neighbourhood health plans.
My Lords, that is all well and good, but financial transparency is the bedrock of accountability. Yet in the answer to a recent FoI request, 80% of ICBs indicated that they could not identify their spending on learning disability services. Will the Minister acknowledge that without the basic financial data, the current system provides a perfect screen for ICBs to quietly raid learning disability budgets to cover acute deficits?
The noble Lord raises a good point about data. Indeed, one of the pieces of work we are doing with ICBs on how they commission services is requiring better data and data analysis. I hope the noble Lord will see the improvements, but I very much take to heart the point he makes.
My Lords, I hope my noble friend will forgive me for concentrating on the South Yorkshire ICB because of the considerable difficulties that have been experienced locally. I know that she cannot give me a clear answer this afternoon, but given that the previous Health Secretary is no longer in post, and therefore the meeting that Clive Betts MP and I had with him has been somewhat overtaken, will she go back to the department and take a look at the withdrawal of resources from neighbourhood and place, which she quite rightly mentioned, to sustain the bureaucracy rather than the delivery?
No ICB should be taking that line. My noble friend is aware that in line with the 10-year plan, NHS England has asked integrated care boards to reduce their running costs. I emphasise running costs, which are not the front-line costs. On the meeting with the former Secretary of State, I can assure my noble friend that the information and views given will of course be brought to the attention of the current Secretary of State. NHS England is the body responsible for dealing with ICBs, their performance and their ways of meeting what is required of them.
My Lords, the new Norfolk and Suffolk ICB was officially launched on 1 April this year, formed by merging the Norfolk and Waveney ICB with Suffolk. The Minister stated at the time that the streamlining process would reduce running costs by 50%. Can she give a timeline for these savings? Will those figures will be impacted by the inevitable cost of the restructuring?
To develop further the reply I gave to my noble friend, ICBs have been asked to reduce their running cost allowance to a cap of ÂŁ19.40 per head of weighted population for the financial year 2026-27, which the noble Lord was asking about. I have to emphasise that by focusing on 36 ICBs and building them around nine clusters, people in ICBs will be able to pool budgets, cut their running costs and be more efficient. I think that is very welcome.
Baroness Gerada (CB)
Can the Minister comment on whether the mental health investment standard introduced in the Health and Care Act 2022, which requires the Secretary of State to report annually to Parliament on the share of NHS funding for mental health, will be replicated for primary care?
I understand why the noble Baroness is asking that question. I cannot confirm that that is the case, but I will gladly raise that point with my colleague the Minister for Care.
My Lords, I will follow up on the question asked by the noble Baroness, Lady Gerada, on the Health and Care Act 2022. I remember that during the debates on the Bill there were calls for many specialisms to be represented on integrated care boards. In order to avoid unwieldy boards, we compromised on the phrase, I think, “with regard to”. With hindsight, we see that that did not always happen. We also find that ICBs are often dominated by large trusts, something that might be made worse by the forthcoming NHSE abolition Bill. Given these two factors, what is the Minister’s department saying to ICBs to make sure that there is an emphasis on community-led provision of health and care services?
The noble Lord actually outlines our entire focus. In March this year, we published the neighbourhood health framework that will empower local leaders to develop and scale neighbourhood health. It is important to recognise that this is not just more of the same; this is actually a change. It is a major shift, as outlined in the 10-year health plan on the back of the independent review by the noble Lord, Lord Darzi, that will mean that we can deliver what noble Lords rightly press me for: better patient-focused care, closer to home and with lower waiting times. That is the entire focus of the new arrangements. All the guidance and the targets that are set focus on that, which has not been the case previously.
Baroness Pidgeon (LD)
My Lords, since last year the number of patients waiting more than a year for basic community health services has shot up by a staggering 32%. What specific actions will the Government take to ensure that patients receive timely community health services?
In February 2025 we published an overview of core community health services, Standardising Community Health Services, in order that ICBs should not just bear it in mind but act on it when planning for their local populations. I know that noble Lords are aware of this, but I often remind myself that ICBs are the best place to ensure that local health services meet the needs of local people. To assist the noble Baroness, we have also set very clear ambitions in our medium-term planning framework that mean that, by 2028-29, at least 80% of community health service activity should take place within 18 weeks, which would bring it in line with targets for elective care.
My Lords, Sir Chris Whitty produced a report on coastal health that exposed deep and persistent health inequalities in many of our coastal communities. Coastal communities, about 55 towns, make up nearly 20% of the UK population. Five years later, can the Minister tell the House what has changed as a result of that report? How will integrated care boards be encouraged to invest in prevention and community-based services in those areas? They are big enough to have problems but not big enough to have the infrastructure surrounding them.
I take the noble Lord’s point, but allocations take account of factors such as rurality and the different costs of providing care. For example, the formula says that reflecting longer travel times in sparsely populated areas for emergency ambulances, which would make the costs higher, is permitted; travel time for community services also reflects that additional time. The financial allocations are far more sensitive to the needs of local areas than they have been.
My Lords, the Government have identified that NHS England staffing and administration costs have risen to ÂŁ2 billion, with significant duplication between NHS England and the department. Have the Government identified savings that can be made that could, for example, be used to deliver healthcare in rural areas where it is more expensive to access the service?
That is the very reason why the allocations currently take account of the special needs of areas such as rural areas. In the NHS Bill, we will bring NHSE into the department and will reduce the duplication and costs.
My Lords, virtual wards are an aspect of community transformation that has been scaling fast. Safety and outcomes will be maintained only with an appropriate workforce plan to meet that demand. Can the Minister say what plans are in place to address that workforce need?
It is indeed the case that, as we move our services to the community and build around the patient, changes and improvements to staffing will be needed. The NHS workforce plan should be available and will be published in the not too distant future.
(3Â months, 1Â week ago)
Lords ChamberMy Lords, I thank the Minister for accepting this Urgent Question repeat. Life science companies have warned that the decision to charge VAT on early access and the innovative medicines that they provide free of charge could lead to them ending providing these free treatments to patients before routine NHS funding is available. The second fact is that recently released government papers reveal that the Cabinet is being asked to look at who they can tax to pay more in benefits. I have three quick questions. First, can the Minister unequivocally state that these two issues are not linked? Secondly, what discussions have the Government had with life science companies, especially those that have raised concerns over charging VAT on free medicines? Thirdly, have the Government looked at whether they could spend that revenue from VAT on improving access to innovative medicines?
It is important to say, first, that this is not a new policy. There is recognition that while early access and compassionate use programmes are crucial, they are voluntary for pharma companies, which are aware, as I say, that VAT is applicable in these instances; it has been in place for decades. To be brief in answering the questions, first, I am not aware of the second issue that the noble Lord raised with regard to discussions—this is a totally different matter, in any case. Secondly, we are working closely with pharma companies, patients and anybody else who needs to be involved to find a sensible solution on this long-standing policy, which I understand was particularly discovered in 2023 by HMRC—so we are dealing with it from then. I have forgotten the third question, but I would be happy to write—oh, I know it. Yes, we always look at where revenue can be used, in a generic sense, but what matters here is that is not new. It was discovered in 2023, and it is entirely up to pharma companies—to which we are most grateful for the compassionate use of medicines, I should add—whether they wish to do it.
Baroness Pidgeon (LD)
My Lords, compassionate use and early access schemes are often the only way for patients with rare cancers to access life-extending medicines. What assurance can the Minister give that HMRC’s approach to VAT will not result in patients losing access to these vital treatments? What discussions about the impact has the department had with cancer charities?
Cancer charities are important in this area, and we are certainly engaging with them; they are very invested partners. I understand why people are concerned. This is not instead of the NHS. NHS medicines are provided on the advice and guidance of NICE, and that absolutely continues. As I say, what we need to do, and what we will do, is work with everyone concerned to find a solution quickly, because we want to support the pharma companies that continue to donate what are very important medicines.
My Lords, do the Government recognise that it has been estimated that, for each pound invested in research, there is an approximate 25p return on that in perpetuity. Therefore, we should avoid anything which disincentivises research investment in this country, which would include the inability to recruit patients if they have to be told that, even if the treatment is successful, they will not be able to access it on the NHS afterwards because the NICE approval processes are too slow for many of these substances. Will the Government therefore undertake to speed up the NICE assessment processes to make sure that patients are not disadvantaged and research is not disincentivised?
Indeed, we will. I can tell the noble Baroness how important speeding up access to medicines is. That is why, in April, we introduced the joint MHRA-NICE pathway for medicines, which will speed up access to new medicines by some three to six very valuable months. We have also brought in the early access to medicines scheme, the Innovative Licensing and Access Pathway, and the innovative medicines fund. All these mean that, across the regulatory and access system, innovative treatments will be available to patients who need them earlier, as the noble Baroness rightly called for.
My Lords, going back to the question about access to compassionate medicine, as I understand, the Minister just stated that medicines that are not yet authorised or licensed can be issued if companies agree to provide them for free, and that HMRC charges VAT on them. If the medicines are free, how do you calculate VAT? If a shop gives away free chocolates, does it have to pay VAT?
I am sure that the noble Lord would not want me to be quoted as suggesting that VAT should be charged on chocolates given free in shops, so I will not. The way in which VAT is calculated is a long-standing arrangement that companies are aware of. The medicines are treated as taxable deemed supplies, which means that VAT is applied even when no payment is made. VAT is worked out by calculating the value of those products, but if there is nothing similar, then an assumption is made. This is a usual way of dealing with that. I should also emphasise that VAT is a matter for His Majesty’s Treasury and has been for all these decades.
Can I bring the noble Baroness back to the last part of my noble friend’s question? It looks as though the VAT department in HMRC is behaving most peculiarly. First, it lost the case about VAT on entry to the Great Yorkshire Show, yet it is fighting every single show rather than giving way to what the law says. Secondly, it lost the case about VAT on charging your EV, but it has been putting off taking that in and will now appeal, against all the interests of the Government. Now we have this case. It is perfectly right for the noble Baroness to say that this is a long-standing thing, but can she join with fellow Ministers and say that it is about time that HMRC recognised that it is a public service, that it ought to look at what it is doing and that it ought not to hold up changes which the law has insisted it makes?
Again, I appreciate the invitation to enter into conversations about VAT more widely, which I will resist. Certainly, HMRC is aware of its role. We are trying to find the right way forward with HMRC while the issues are resolved, because patients are at the heart of this. HMRC is already using its discretion to extend deadlines where appropriate and suspend collection of tax if a taxpayer has requested a statutory review. It does not mean that HMRC has changed its mind on past liabilities, but it does mean that, if taxpayers and companies have concerns, they have a direct line to it. We are working carefully and closely with industry, patients, charities and others to find the right way forward as soon as possible.
What data is there on patients who have been or will be denied treatments that they would otherwise have had? Does the Minister have any estimate of the amount of revenue expected to be raised from this? Are there plans for proper exemptions for patients who are in desperate need of this type of medicine and who may well then not be able to access it?
I do not have the specific figures, but if I can access them, I would be happy to have noble Baroness receive them. It is important to step back here. As mentioned by the noble Baroness, Lady Pidgeon, patients are at the core of this and, as I said to the noble Baroness, Lady Finlay, I do not want to alarm people. We are taking other actions; this is not an “instead of” but an “as well as”. For example, our raising the threshold for NICE in April meant that it could recommend three new medicines, which are helping those with muscular dystrophy, those as young as 12 with brain tumours and those who would benefit from a particular medicine for an aggressive form of stomach cancer. All these are not to do with compassionate use, but they are to do with NHS medicines and NICE approval. That will always remain at the core of our support for patients.
(3Â months, 2Â weeks ago)
Lords ChamberMy Lords, I start by thanking the noble Baroness, Lady Rock, for leading this important debate and, as many noble Lords have said, for chairing a committee that was very thorough and gathered powerful evidence, including from autistic people, families, carers and professionals. I too extend my gratitude to all members of the committee. It is a very strong piece of work, which I believe will take us forward.
We welcome the final report and the recommendations and have set out our initial response. Straight away, I should say that I have heard the various views across the Chamber about the quality of the response and I have also heard very clearly the frustration that there is not an immediate strategy to replace this current one. I say that in all seriousness, not least because I will be sharing those views with the Minister now responsible for this very important area, Preet Gill MP. On that point, I apologise to the noble Baroness, Lady Browning, for not having had a response to a request for a meeting with the appropriate Minister. I will indeed pursue this.
As the noble Lord, Lord Addington, said, we turned to the noble Baroness, Lady Browning, as we so often do; I also often turn to the noble Baroness, Lady Browning, and very wise we all are in doing so. The work of the committee is indeed helping us to better understand the challenges, the opportunities and the changes that are needed. Yes, I say to my noble friend Lord Touhig that the work of the committee will absolutely inform development of the revised autism strategy, as indeed it should.
I am very grateful to noble Lords for bringing their personal experience to this debate. The noble Lord, Lord Elliott, was most open about his personal experience and we heard from parents, loved ones and, indeed, grandparents in the form of the noble Lord, Lord Sterling. This brings the subject about which we are speaking very much to life. I do agree that too many autistic people face significant challenges in education, employment, health and wider participation in society. That has lasting impacts on independence and well-being. I very much agree with the noble and learned Lord, Lord Hope, who observed early on in the debate that autistic people are individuals. Again, I very much take that point.
The response to that will be rooted not only in the new strategy but throughout the 10-year health plan and in—as we will see when it comes to this House—the Health Bill, particularly the moves to establish a single patient record, which will overcome a number of the points that noble Lords rightly raised. It is the case that, too often, people are expected to navigate very complex systems rather than simply secure the care and support they need and which would respond to their individual needs. I do not think that is so much to ask, and I am sure the committee would agree, and that does have to change. We are moving towards a needs-based approach, focused on early intervention and joined-up support around individual needs. That is central to our wider reforms, including changes to the SEND system.
The noble Lord, Lord Crisp, spoke about the model of Phoenix schools. I would certainly welcome, as would officials, more information about that. It is good to see good practice in action. I want to acknowledge the important local work that is under way. The noble Lord, Lord Wigley, spoke to this point. All of this is about building more inclusive communities where autistic people can thrive. The work that my noble friend Lady Dacres described in making Lewisham an autism-inclusive borough through its all-age autism strategy, was commendable and echoes with me. “Nothing about us without us” is, I think, good guidance.
The Autism Act was enacted in 2009 and I pay tribute to all those who went before us to make that happen. There have been subsequent autism strategies, but the reality is, as has been observed, that progress has been inconsistent and outcomes have not improved as they should have. We are very well aware—and I certainly am more so today—of the concerns raised about the importance of having an effective national strategy in place. I want to reassure your Lordships’ House that the current strategy does remain in place until it is replaced.
Noble Lords recognise, as I do, that the landscape has changed significantly since the current strategy was published in 2021. The challenges that face the health system now are much more acute. Services are seeing more patients with more complexity, and demand continues to outstrip supply. Indeed, as the noble Baroness, Lady Rock, and other noble Lords said, some 270,000 people are waiting for an autism assessment, and around 90% of them are waiting at least 13 weeks. That is why it is so important that we focus on earlier intervention and help people to get the support they need without necessarily needing a diagnosis as we expect now.
My noble friend Lady Goudie spoke about girls and women facing particular struggles. Data does show that we are seeing an increase in referrals for female diagnosis. There is, perhaps, a suggestion there that increasing awareness of this issue is supporting improvements in this area. I am very much looking forward in particular—but not exclusively—to the recommendations of the independent review on the prevalence of, and support for, mental health conditions, ADHD and autism, chaired by Professor Fonagy. It is expected this summer and will speak to the very point about how we can respond to increasing demand more effectively. It will look at drivers for that demand, about which, we must be honest, there is often not clarity, and I hope that this will greatly assist.
Now to the very important points raised with me about the Government’s plans for a future strategy and the timescales by the noble Lord, Lord Kamall, my noble friends Lady Ritchie and Lord Touhig, the noble Baroness, Lady Rock, and other noble Lords. As I said, we remain fully committed to publishing a revised and, I emphasise, cross-government autism strategy—the cross-government point being another aspect that I know the committee was very keen on. I will disappoint noble Lords somewhat, but I hope I can give reassurance that I am not going to disappoint them too much. In my view, it is important that the timetable for establishing the strategy takes proper account of the timelines of relevant cross-government reviews.
I will come back to this very shortly, but developing the revised strategy—the noble Baroness, Lady Browning, pressed this point—has to be grounded in evidence, shaped by engagement, as many noble Lords asked, and be realistic about the pressures facing the system. Therefore, we have to focus on ensuring that people can access support at the right time. On the point made by the noble and learned Lord, Lord Hope, we need to remove unnecessary barriers in a way that reflects individual needs. That means carefully considering a number of areas, including the recommendations of the committee’s Time to Deliver report, as well as, as I have mentioned, the findings of the independent prevalence and support review, which has not yet been published, and other important cross-government work, again spoken to in this debate, such as the independent Milburn review on the increase in the number of young people who are not in education, employment or training, and the insights from the consultation on SEND reform. All these will help shape the Government’s response and next steps.
Fortunately, we have these things in train and they are reporting soon, but not in time for the end of the current strategy. Therefore, I am not in favour, and I do not think any noble Lord would want me to be, of publishing a revised strategy to meet a timeline that does not now reflect the timelines that are more current, more evidence and more consideration. I want this to be the best strategy we can get. I want it to be a strategy that can deliver. In that respect, I cannot give a timeline, but I have indicated what is being considered and when those matters will be reported on.
I can assure the noble Lord, Lord Addington, my noble friend Lady Ritchie, the noble Lord, Lord Crisp, and other noble Lords, that we are absolutely engaging with those with lived experience. That is key to success. We will also consider the need for a new system to bring together information from autistic people. I think that is work we have to do.
To pick up some other points, I recently announced plans for a new cross-government mental health strategy—that will also be very relevant to this area. That will be published later this year. It will explicitly consider the mental health needs of autistic people and people with ADHD. Together with the autism strategy, all these areas of work, which are very practically focused, will support a more joined-up system for those with neurodevelopmental conditions or mental health needs.
Of course, the autism strategy does not sit in isolation, and we work closely with the Department for Education on SEND reforms ensuring that joined-up support is available across education and health and care services, as noble Lords have rightly expressed. It is key that we have the right support available at every stage of the education of children and young people. My noble friend Lady Antrobus referred to the RSE curriculum. The new RSE curriculum and guidance are quite clear that schools should ensure that subjects are accessible for pupils with SEND. It is ultimately the school’s responsibility to ensure that resources and teaching materials—I heard the point about the need for greater teacher time—are accessible for all pupils and are sensitive to pupils’ needs. I emphasise again that, no matter one’s age, we are all individuals. The consultation on SEND reform has just closed. The feedback is being considered before we set out the Government’s response and next steps. We are also taking steps now. On 5 June, we published guidance for the new experts at hand offer, and we have appointed a national panel of experts to develop new national inclusion standards and specialist provision packages.
I want to refer to some other points that were raised. I am happy to write to the noble Baroness, Lady Hollins, with further detail on her assertion that a simple change to the Care Act to require an anticipatory care plan would be one way to manage that.
I will write to the noble Baroness, Lady Rock, my noble friend Lady Dacres and the noble Lord, Lord Addington, who raised matters relating to the justice system. The final update of the neurodiversity action plan was published in February. It highlights significant progress made across the criminal justice system in supporting autistic people. I should add that to improve prison screening processes and practices, a new additional learning needs tool was introduced in October 2025 as part of the new prisoner education service. The tool identifies adjustments that might support them.
I say to the noble Baroness, Lady Hollins, that our reforms to the Mental Health Act will limit the scope to detain people with a learning disability and autistic people so they can be detained for treatment only if they have a co-occurring medical health condition that requires hospital treatment. That is something we correctly spoke about at some length during the passage of the Mental Health Bill.
The noble Lord, Lord Kamall, pressed home the need for greater training for employers. I am sure that all of us in this Chamber know that employment rates remain significantly lower for autistic people. That is not acceptable. Our ÂŁ1 billion connect to work programme will support around 300,000 people. This is alongside reforms to Disability Confident. We continue to work with employers to build more inclusive workplaces. Of course, the work of the former Health Secretary, Alan Milburn, through his review will be very helpful in this regard.
The noble Baroness, Lady Hollins, raised the fact that autistic people, especially women, are at higher risk of suicide. I recognise that. In the suicide prevention strategy, autistic people, children, young people, pregnant women and new mothers are priority groups for the provision of tailored and targeted support. On the matter of training, raised by the noble Baroness, Lady Rock, mandatory training on learning disability and autism for health and care staff will support the necessary shift to empowering patients and preventing sickness rather than just treating it. Again, that is key.
I agree with the noble Baroness, Lady Hollins, that avoidable deaths are unacceptably high. We remain committed to reviewing every death notified to LeDeR and ensuring that learning from reviews is shared. On the point about local services, every integrated care board is expected to have an executive lead on LeDeR and to prioritise LeDeRs.
I am most grateful for the questions and for the way in which noble Lords have pressed the importance of the strategy. I accept that. I want to ensure that we get this right. With the assistance of the committee’s report, I know that we will.
(4Â months, 1Â week ago)
Lords Chamber
Baroness Nargund (Lab)
My Lords, I beg leave to ask the Question standing in my name on the Order Paper and I declare an interest as founder and trustee of the charity Health Equality Foundation.
My Lords, the fall in healthy life expectancy over the last decade is unacceptable and underlines the scale and complexity of the challenges we face. Through the 10-year health plan, we are taking action to tackle the drivers of ill health and inequality, including reviewing the Carr-Hill funding formula, to better match resources to need, and creating a smoke-free UK.
Baroness Nargund (Lab)
I thank my noble friend the Minister for that response. The Health Foundation’s report, Healthy Life Expectancy Trends in the UK: A Watershed Moment, published in April this year, makes it clear that healthy life expectancy is a key measure of our population’s health. The gap between the most deprived and the most affluent areas has grown, with those in the wealthiest areas now living up to 20 years longer. Social determinants of health affect healthy life expectancy—
Baroness Nargund (Lab)
I am coming to that. What plans do the Government have to address the social determinants of health across all government departments, because a single department cannot handle this? How can we close this gap?
My noble friend’s assessment of the situation is right. That is why we are working across government on the wider determinants of health, including matters such as the Warm Homes Plan and the homelessness strategy. Alongside that, the 10-year health plan focuses on prevention and narrowing inequalities. The aim is to improve all conditions that will support longer, healthier lives across the whole country.
My Lords, the Minister will be aware that one of the key determinants of healthy life expectancy is diet. In the 10-year health plan, the Government have a welcome section on improving the dietary health of the nation. It was therefore disturbing to note in the Telegraph a few days ago a report that said the Government are going to pull back on these commitments. Can the Minister please confirm to the House that the Government have no intention of pulling back on the commitments to improve dietary health?
It is an important area of government activity and I certainly do not recognise the comments that were in the Telegraph. I can confirm to noble Lords that we have a whole package of measures to tackle obesity, including restricting junk food advertising on TV and online aimed at children and giving local councils stronger powers to block new fast food outlets. That is still the case.
My Lords, is the Minister aware that there are scientists who are propagating nonsense that nothing can be done about the obesity epidemic because it is all genetic? These people are saying that the individual cannot be relied upon to take action and that it must be the Government who do it. It is complete nonsense, because the individual can take responsibility—and, indeed, millions are taking injections to do that very thing.
I recognise the noble Lord’s point. We are certainly seeking to give individuals the ability to grasp the opportunity to live well for longer and to support them in their choices. For example, in addition to the points I made to the noble Lord, Lord Krebs, we are working on restricting volume price promotions such as “buy three for the price of two” offers on less healthy food and drink.
Baroness Pidgeon (LD)
My Lords, given that the UK is an outlier compared to similar countries, what work are the Government doing to introduce proactive, preventive health measures, such as routine health MOTs for people, to try to reverse this trend?
I welcome the noble Baroness to her Front Bench on the important matter of health and social care. I am most grateful for her question. We have to be ambitious, which is what the 10-year health plan is doing, in transforming how we tackle the biggest causes of ill health. We are going to take a whole-society approach and a whole-person approach, rather than dealing just with conditions. To the points made earlier, we will be working with individuals—as in the public—and in partnership with business and civil society.
My Lords, ever since the Marmot report, we have known that poor-quality employment is a key driver of lower healthy life expectancy. The Employment Rights Act is a big step forward, but does my noble friend the Minister agree that we need action on asbestos removal from workplaces and public places, more boots on the ground in the shape of health and safety inspectors, and a boost to occupational health services in the UK?
My noble friend is right. I very much welcome the provisions in the Employment Rights Act and in other areas; it is a good example of cross-government working. We are pursuing this through Keep Britain Working, which will reduce economic inactivity and focus on workplace health provision, as my noble friend says. I believe that will help address poverty and support healthy working. All those measures will help healthy life expectancy.
My Lords, my succinct question is this. Given that healthy life expectancy has fallen despite record levels of NHS spending, with obesity, diabetes and poor mental health continuing to rise, can the Minister explain what specifically will be different in the Government’s approach, beyond simply increasing treatment capacity to prevent more people spending longer periods of their lives in ill health?
As I mentioned in an earlier answer, this is a long-term and complex matter which has developed over a number of years. It is totally unacceptable that a woman in Hartlepool, for example, will enter ill health some 19 years earlier than a woman in Richmond-upon-Thames. It is about embedding action on health in policies across government. However, as I mentioned, it is also about redesigning the system around the three shifts: emphasis on prevention rather than on sickness, in particular, but also a move to community-based health services, so that people can access healthcare where and when they need it, and, of course, digital access, too.
My Lords, healthy life expectancy is a mix of two data: a more precise life expectancy and a much cruder self-reporting of the stages of health. This leads to a confusing interpretation and therefore is not helpful in policy-making decisions. We have to find and seek better information about healthy life expectancy and the parameters that affect it, to be more effective in policy decisions. Does the Minister agree?
I definitely agree. That is why data, particularly that which drives us to make funding decisions to get funding to where it is needed most, is absolutely crucial. I find the term “healthy life expectancy” more useful than what used to be called “life expectancy”. That, to me, was always only one side of the coin. However, I take on board the point that the noble Lord makes.
My Lords, people with a learning disability enter periods of multimorbidity and chronic illness 20 to 30 years earlier than those without a learning disability. What are the Government going to do to stop this national scandal?
I accept that this is completely unacceptable. There are groups, including those the noble Lord rightly raises, which have an even worse healthy life expectancy. As I mentioned, we will be redesigning the system and making the shifts in the 10-year plan, in order that we target the areas and the groups that need it most. I can certainly tell the noble Lord that the most recent prevalence review on mental health will include those who have ADHD, those with autism and those with learning disability. That will take us forward, too.
Lord Babudu (Lab)
My Lords, can my noble friend the Minister say how the Government will achieve their shift from treating sickness to maximising prevention, as outlined in their 10-year plan, and particularly how they will shift resources, reporting and other necessary things?
My noble friend is right to ask about maximising prevention, as that will be a key shift in our National Health Service. In addition to the points I have already made, we are working within the NHS to do more to support our approach to prevention. In addition to what I have already mentioned and the system changes, we will, for example, strengthen our vaccination and screening programmes, including by improving the uptake of child immunisation. We are working to improve the detection, treatment and management of the behavioural and clinical risk factors that drive this burden of disease and affect healthy life expectancy.
(4Â months, 1Â week ago)
Lords Chamber
Baroness Pidgeon
To ask His Majesty’s Government what plans they have to improve miscarriage care and support.
My Lords, miscarriage can have a devastating impact on women and their families, and we are determined that they receive the support they need. We committed in the women’s health strategy to improve care for women, including carefully considering the graded model of care for repeated miscarriage. The National Maternity and Neonatal Taskforce will develop the national action plan to improve maternity and neonatal safety and experiences, and it will follow the pending recommendations of the independent investigation by the noble Baroness, Lady Amos.
Baroness Pidgeon (LD)
There are around 250,000 miscarriages in the UK every year. Following the recent Tommy’s Graded Model of Miscarriage Care report, will the Government now review the specific requirement for women to experience three miscarriages before being able to access the support that could help prevent another loss?
This is an extremely important area, and I acknowledge very much that the current situation is not working for women or their families. To emphasise, we very much welcome the report from Tommy’s miscarriage centre at Birmingham Women’s and Children’s Hospital, which is about the effectiveness of its piloted model of sporadic or recurrent miscarriage care. I visited them when I first took office and was very taken by their work. I am glad they have reported, and, as confirmed in the women’s health strategy, we shall be looking very closely at this. It will deal with and refer to the point the noble Baroness makes.
My Lords, one of the issues that is going to come out this week, through a welcome report on Wednesday, is the effect of heat on pregnancies—on miscarriage and on very small babies being born. It used to be thought that this affected only women in very hot countries, but it now is realised that it affects women subjected to heat they are not accustomed to. In other words, it is just as important here as it could be in the tropics. Given that a lot of science now says that we are entering an El Niño period, which could mean tremendous heat towards the end of this year, what are the Government doing to address this and give women advice about hydration, shade, et cetera?
There are a number of causes of miscarriage, as I am sure the noble Baroness is aware, and it is helpful that she brings this point to our attention. In all areas it is very important that we give advice to women about how to manage their pregnancy to—I can only put it this way—minimise the possibility of miscarriage. There is another factor regarding pre-conception healthcare. Of course, many pregnancies are not planned, and our challenge is to ensure good health for women more broadly, in the ways I have described a number of times. But we will be looking at the point the noble Baroness raises.
My Lords, given continued reports from women that they are discharged from services following miscarriage with little psychological support or follow-up care, what assessment have the Government made of whether current NHS pathways are meeting the commitments set out in the women’s health strategy? How will the improvements that these women are really looking forward to be measured in the future?
In terms of the renewed women’s health strategy, we are going further than just mental health, important though it is, and taking a new and better whole-life course approach, right from the availability of contraception all the way through to and including menopause, because this is all part of life’s reproduction journey. That will greatly assist. On miscarriage and mental health, we have established mental health services in all areas of the country, which are available for those with pre-existing mental health needs. Bereavement counselling is also widely available for those who experience baby loss. We have also set up maternal mental health services to provide care for those who have moderate, severe or complex mental health difficulties arising from loss or birth trauma.
My Lords, baby loss can be one of the most difficult experiences for any person, but especially for NHS staff who work in or around maternity and neonatal care settings. Can the Minister outline for us what specific support is in place in the NHS for staff who experience baby loss that recognises this additional need?
The most reverend Primate makes a very sensitive point, which is of course correct. That is why NHS England has published a new policy to support NHS employees who are affected by baby loss, including paid leave. Our development through the Employment Rights Act will apply to NHS workers, including giving leave from work. We are currently consulting on the detail of this. It is about acknowledging the extreme effect on individuals of losing a baby, no matter at what stage.
Baroness Nargund (Lab)
My Lords, I welcome the Government’s commitment to review the graded models of care so that women can be helped, regardless of the number of miscarriages. How will the Government make sure that the needed services, particularly for support as well as investigations, are equitable throughout the country and not subject to a postcode lottery?
The 10-year women’s health strategy is absolutely focused on ensuring that services and support are available equally, no matter where people live. They are variable, and that is not where we want them to be. I have just spoken about the bereavement services, for example. As of January this year, all ICB areas are expected to provide a seven-day-a-week bereavement service across maternity settings. That was not in place earlier, and it gives a sense of the trajectory.
My Lords, in an era of more personalised medicine, it is important to note that the care of women who have miscarried is dependent on several factors: the gestation age when miscarriage occurs, the age of the mother, and any existing diseases. It is not just about the number of miscarriages the mother has had when the investigation starts. There should be more personalised aftercare for every mother who loses a baby.
I hesitate to say “of course”, but the noble Lord is of course right. As I mentioned earlier, there is a range of reasons why miscarriage may be taking place. It therefore requires that whole-system approach, but also the life-course approach that I spoke of. I am also glad that through our research arm, the NIHR, we are funding research through Tommy’s, which we have spoken about already, on the beneficial effects of progesterone, to give one example. It is important that we continue, as we are doing, to invest in this research.
I am sure the Minister is aware that Northern Ireland now provides up to two weeks of statutory leave for those who endure miscarriage before 24 weeks. Are she and her colleagues in government looking at that across the UK?
That is exactly why there is provision in the Employment Rights Act. We are consulting on the detail of how we can most effectively make it work, but it is quite right to do that, and I am glad we are following this example.
My Lords, it is widely reported that maternity services are in crisis—in fact, an inquiry is ongoing. Could it be that women suffering from miscarriage get less priority when maternity services are overstretched and as busy as they could possibly be, as we have read? Would it not be better if maternity services were improved once we get the result of the inquiry? Then there would be time and more patience to deal with the women suffering miscarriages, who are probably in the same area of the hospital as the maternity wards.
The noble Baroness, Lady Amos, will report next month, and we are grateful to her for conducting an independent investigation. The National Maternity and Neonatal Taskforce and all its expert reference groups—a number of noble Lords are kindly taking part in that, alongside those with lived experience and clinicians—are getting on with the work of how we improve maternity and neonatal services. We will not have to wait long for the noble Baroness’s report. We will look not just at her recommendations but at where there are gaps and, should reference to miscarriage be one, we will of course seek to fill that gap.