(4 months ago)
Lords ChamberTo ask His Majesty’s Government what assessment they have made of the resilience of NHS infrastructure to extreme heat; and what steps they are taking to ensure that NHS buildings are adequately equipped to withstand prolonged periods of extreme heat.
My Lords, extreme heat does pose a serious risk to NHS buildings and services. All NHS organisations are required to have effective arrangements in place for adverse weather. We are supporting trusts to target the most critical estates risks with £6.75 billion over nine years, including risks that need to be dealt with in respect of cooling and ventilation; and we are ensuring that new hospitals and new-build neighbourhood health centres have climate resilience embedded in their design from the outset.
I welcome the Answer from the noble Baroness. Last Wednesday was the London Ambulance Service’s busiest ever day for life-threatening emergencies, and at least six NHS trusts declared critical incidents. Nine in ten of our NHS buildings are ill-equipped to handle heat. The Climate Change Committee’s report, A Well-Adapted UK, argues urgently for solar batteries and cooling across all public buildings, yet Great British Energy’s programme covers only 200 out of 1,200 NHS sites. Therefore, will the Minister commit to ensuring that every hospital has solar battery storage and air-source heat pumps by 2035?
The Government are indeed providing trusts with substantial investment—I mentioned just some of it—in these measures, and that is very much in line with the Government’s net-zero ambitions and intent. We are investing £155 million in solar projects and £400 million in heat decarbonisation grants across the NHS. I emphasise that, looking forward, all NHS new builds and major upgrades will align with the net-zero building standard.
My Lords, following the Question from the noble Earl, Lord Russell, before we have all those solar systems in place, I urge the Minister to audit major hospital trusts on their back-up power systems, and in particular to ensure that the refrigeration facilities are available continuously for the storage of medicines, life support systems and all the other essential elements that require electricity.
Yes indeed, and I go back to my point about the £6.75 billion estates safety fund, the whole intention of which is to target the most serious risks, such as those the noble Baroness refers to. Vital projects will attract that funding. They include overheating risks such as broken chillers, outdated air-handling units and, if needed, refrigeration—in other words, where there is a need for urgent upgrades.
My Lords, last night, here in the House, the Parliamentary and Scientific Committee, of which I am president, held a meeting on the effects of extreme heat in the workplace. During that meeting, reference was made to the fact that, during last week’s heatwave, several MRI machines failed. Will my noble friend extend an invitation to the Physiological Society, which has done a great deal of work on the effects of heat on the human body, and consult it on possible ways these types of events can be avoided?
My noble friend raises an important point. It is important to note that extreme heat particularly affects buildings with poor insulation and limited natural ventilation, which, by their very nature—I am describing many health settings—heavily rely on such measures if there is heat-generating equipment like imaging suites and IT systems. Also, 11% of buildings in the NHS estate are older than the NHS itself, which gives some sense of the scale. We have committed £10.5 million in research funding to develop effective cooling solutions that can be used across the whole system. It may well be that the organisation to which my noble friend refers is part of that, but I will take his suggestion back to the department.
My Lords, I am grateful to the Minister for answering the Question of the noble Earl, Lord Russell, on new-build hospitals, but there is clearly a question about existing hospitals and facilities. I wonder what plan or strategy there is, and whether it is written down, to identify hospitals that do critical and time-sensitive procedures, to make sure that they are prioritised when there are extreme heat conditions, and to commission independent hospitals with the appropriate cooling and ventilation systems to allow those critical operations to go ahead.
We are already investing some £30 billion of capital across the NHS estate. I have mentioned the most serious infrastructure risks, which the noble Lord rightly refers to. While we accept the age of the estate and its size—I noted in preparing for this Question that we are talking about the equivalent of 4,000 football pitches—we also have a backlog of maintenance issues, which have grown and grown. We estimate that some £15.9 billion is needed. While there are no easy solutions, we do have a resilience plan not just for overheating but for all threats to resilience arising from temperature. We are also providing the funding—although, to the point the noble Lord makes, it is down to local decision-making—and ensuring that we are assisting the estate across the country to meet the challenges, the priority being those areas that need it most.
Baroness Pidgeon (LD)
My Lords, aside from the estate, patients on medications known to cause issues in extreme heat are not always being given specific advice on adjusting use of these during extreme weather and, as a result, have been admitted to hospital. What work is the department doing, particularly given that we have further hot weather coming, to ensure that patients receive the right advice and support to avoid hospital admissions as a result of such hot weather?
The recent heat health alert was the first alert since July 2022. Importantly, the UK Health Security Agency has updated its weather health alert system in order that action can be taken and preparations put in place. It has also expanded its guidance, communications and the training of staff across the health and social care sector, so they can better deal with the challenges.
My Lords, I was very pleased to hear the Minister say in response to the Question of the noble Earl, Lord Russell, that all new hospitals and hospital projects in the pipeline will be climate-proofed, and that that will include resistance to extreme heat. However, I would like to ask about care homes. The most vulnerable in society include the elderly—a category to which I admit I belong, along with a number of other noble Lords—and care homes are therefore an important element of protection against extreme heat. What plans do the Government have to ensure that care homes are as well protected from extreme heat as the Minister says hospitals will be in future?
Clearly it is a different situation, in terms not of climate but of the estate. I know the noble Lord is aware of this, but it is worth pointing out that the social care sector is rather more fragmented and includes the private sector. However, for social care, advice is available about what measures to put in place, along with training.
My Lords, many workers across many sectors are suffering unbearable temperatures that they are expected to work in, and that is increasing demand on the NHS and its services. Does the Minister agree with the principle that health and safety laws can drive adaptations in workplaces necessary for the health and safety of the workforce, as happened with the introduction of a minimum working temperature? Is it time that we had a maximum working temperature, as the TUC has called for?
I acknowledge the push my noble friend is making. She will understand that the decision she asked me to comment on is not one for my department, but I will certainly draw it to the attention of the appropriate ministerial colleague.
(4 months ago)
Lords Chamber
Baroness Pidgeon (LD)
My Lords, the Statement before us today from the Secretary of State in the other place is distressing reading, as is the report by Donna Ockenden. This review shocks us all to the core and must shake the Government into real action at every level of our health service and its regulation. Staff concerns were dismissed, a board did nothing and regulators failed in their duties. There was a simple refusal to listen to women and their families, causing such loss, trauma, negligence and damage, alongside bullying, organisational failures and the horrendous misplacing of bodies. Words just cannot express this horror. What brave and resilient families to keep fighting for justice; I thank them all.
I heard the deeply moving testimony at the press conference last week about the mental health legacy for bereaved parents. One explained how she had lost all trust in the NHS and had the constant, triggering experience of having to engage in her daily life with the organisation she holds responsible for the loss of her baby. It is hard to imagine.
This review, and the upcoming wider review from the noble Baroness, Lady Amos, must draw the line. This has to stop. Mothers, babies, children and families must have confidence that they will be provided with first-class maternity services, wherever they live in our country. There must be quality services that meet their needs whatever their age or background, with respect and dignity at the heart.
I welcome the taskforce, chaired by the Secretary of State. It will be crucial to ensuring the implementation of recommendations at every trust and to ensure that whistleblowing throughout the NHS works. An independent patient voice must remain part of our health service to help hold NHS trusts to account. We will revisit this point with the NHS Bill later this year.
I understand that, in 2018, over 50 members of staff wrote to the chair of Nottingham’s board, stating plainly that there were significant safety concerns. The letter was not even discussed by the board—it went to a sub-committee and was buried. In 2023, the chief executive found that the trust had never formally investigated staff shortages. I cannot get my head around this, as someone who has sat on many different boards over the years. This is not good practice. I therefore ask the Minister what urgent work the Government are undertaking to assess the competence of NHS trust boards. What changes may take place to strengthen them and to ensure that they carry out their serious role and responsibilities thoroughly and robustly?
The Government must also take action to strengthen whistleblowing powers in the NHS. My Liberal Democrat colleagues in the other place have tabled amendments to the Health Bill which would provide new powers for coroners and medical examiners to report suspected health failings. Will the Government look to support those amendments to strengthen whistleblowing in the NHS?
Finally, families need to have confidence in their local maternity services, and those services need to all be at the highest standard. Will the Government commit to a maternity rescue package to deliver this, including one-to-one midwifery care for every woman in labour and consultant obstetricians present 24/7 on every labour ward?
A big step change is needed to transform maternity services across the country that every family and every individual can have confidence in. I look forward to the Minister's response.
My Lords, we find ourselves deeply affected, as we have heard from both Front Benches. I am grateful for the tone and for the acknowledgement of the experiences of bereaved and harmed families who are at the absolute centre of this. The noble Baroness, Lady Pidgeon, said that she could not get her head around many of these things; I am sure we are all in agreement on that. I share the views of both Front Benches. I am grateful for the support for action. I absolutely agree with the noble Lord, Lord Kamall, that there is only one test: action. As the noble Baroness, Lady Pidgeon, said, it is also about confidence and step change. We all want to get this right. It is not recent; it is not isolated—as both Front Benches identified. It should not be the case that those who are bereaved and harmed have had to show such courage and determination. This is an impossible circumstance that people are in. The noble Lord, Lord Kamall, said that people understandably often do not wish to add to their distress. The fact is that women, babies and families have all been terribly let down, not as a one-off but by a system—a system that failed to listen, failed to be transparent and, to make it even worse, failed to provide the truth when things went wrong. We are looking at 13 years, since 2012. This is a sustained approach that was totally unacceptable.
On behalf of the Government, I want to say how deeply sorry I am, and the Government are, for what every family has suffered and for those who have been affected. I also want to thank parents and families for their courage and determination for sharing their experiences. Without that, Donna Ockenden and her team—to whom I express great gratitude—could not have done the work that they did. They have been diligent; they have shown compassion and great detail, and it will make a difference.
To the noble Lord, Lord Kamall, I can say that, certainly, the Government are going to deliver a clear and deliverable plan by the end of the year. As the noble Lord and the noble Baroness have asked for, these will indeed be system-wide improvements, so that everyone can have full confidence across maternity and neonatal services—and, yes, it will have milestones and transparency. How will this be done? The noble Baroness, Lady Pidgeon, has spoken about the taskforce. That is important. It is personally chaired by the Secretary of State. There is a very good reason for that—to give the absolute authority of his office. I am the deputy chair of that taskforce. It brings together many groups, including through the expert reference groups, but, crucially, it includes affected families and Michelle Welsh, MP for Sherwood Forrest, who would describe herself as someone who has been harmed in this terrible catalogue of heartbreaking experiences. She is our first appointed maternity adviser to the Secretary of State.
How will we deliver through the taskforce a clear action plan that will make a difference? We will bring together the national recommendations from this review and the independent review from my noble friend Lady Amos, rightly established by the former Secretary of State, which will report this Wednesday. The work will also look at previous reviews. It is right to say that there have been many previous reviews and lessons clearly have not been learned, which is totally unacceptable. It will be our duty to deliver that lasting change through the National Maternity and Neonatal Taskforce.
I have some immediate responses to the points raised by noble Lords on the Front Benches. The Secretary of State announced last week that we are extending Martha’s rule straightaway to all maternity and neonatal services. That means that every parent or caring person supporting a birth can request a rapid review from an independent medical team if the condition of a baby or mother is deteriorating and they are concerned that it is not being responded to. This is a very important step on the point of real listening.
I was also absolutely shocked to read the findings on mortuaries. They are chilling and deeply distressing. It is hard to believe that these things could ever be allowed to happen. There is a live police investigation, and two people have recently been arrested—noble Lords will appreciate that I cannot say more. Two immediate actions are also being taken: the Human Tissue Authority is conducting an urgent national review of mortuary incident reporting and NHS England, on instruction from the Secretary of State, is writing to all trusts to ensure that they consider the findings on mortuary care in this report.
I will pick up some of the questions asked by the Front Benches. On the point about boards being accountable for an open culture and patient safety coming first, that is their job. Noble Lords will not be surprised to hear that there has been a change of leadership. This week, the Secretary of State is meeting the chief executive and interim chair to discuss this point. Boards are held accountable to ensure that there is a patient safety culture through strict duties, independent oversight and targeted regulatory assessments. Clearly, this was not the case here and in other areas, but I welcome the change in leadership and their commitment to delivering a change of culture. I am grateful to Donna Ockenden for recognising that there have been improvements, though she is right that more needs to happen. As I said earlier, this is not just one random situation in one area—it goes so much deeper than that.
The noble Lord, Lord Kamall, asked about workforce. One of the recommended actions from the Nottingham report is that a perinatal workforce tool be developed. This will be considered by the taskforce along with all the other recommendations, as we have discussed.
The noble Baroness, Lady Pidgeon, asked about the urgent work to assess the competence of NHS trust boards. For example, the Nottingham trust has a learning and improvement board to oversee the required improvements, chaired by Michelle Welsh MP. It is supported by a family board and a staff board, which is the model we need to see.
On strengthening whistleblowing as part of the taskforce’s work, we will be looking at all parts of the health system when things go wrong, including how accountability is established and, if necessary, strengthened. On a maternity rescue package, continuity of care, referred to by the noble Baroness, Lady Pidgeon, is an action in the report from Nottingham and will be considered closely by the taskforce.
The noble Lord, Lord Kamall, asked about sodium valproate compensation. The Patient Safety Commissioner rightly continues to press on that. I do not have a specific update for the noble Lord; as soon as I do, I will be very glad to write to him.
It is impossible not to be affected by this report, but I consider it a luxury that I am affected in how I feel rather than in what has happened to me. Again, I apologise for myself and on behalf of the Government for the harm, losses and trauma that continue to this day. I commit us to doing all we can to make sure this is not repeated, and I am grateful to have the support of the Front Benches in doing this.
This is the most appalling thing that has happened. I have great respect for the Minister, and I thank her for letting us know about some of the action plans going ahead. What has gone wrong with a profession where the professionals have seemingly no empathy for those they are caring for? Is this about society? Have we given up putting others first? Have we become a society where we do not listen and do not treat each person as an individual with needs individual to them? That is what I was taught when I was given my nursing training. Is that being taught now? Have we forgotten how we behave towards individuals when they are asking for help? Do we not listen and do everything in our power to make them feel better? Government cannot do everything; it has to be society that can, in some way, teach people in these very important roles how they treat the human beings in front of them.
I certainly agree. Every woman, in the case of maternity services, deserves safe and compassionate maternity care. That is why we are so determined to drive urgent improvements in maternity services. It is worth noting that this review—the largest ever of its kind, as the noble Lord, Lord Kamall, said—considered the experience of more than 2,500 families and 830 staff. I think it is important that your Lordships’ House also remembers how many staff have found themselves in situations they would never have wanted to be in. I am sure that the noble Baroness, like me, pays great tribute to the many NHS staff who are in the majority in doing their work in a compassionate way—as the noble Baroness has experienced.
I cannot comment on whether it is specific to society but, from Donna Ockenden’s conclusions, there was something deeply wrong here. Whether it was not listening, culture or racism and discrimination towards women, families and staff, and between staff, we cannot have it.
My Lords, to continue this theme, the report describes a bullying and toxic culture, with junior midwives not being sufficiently supported when dealing with complex cases. It was a culture that did not allow them to refer such cases up the chain. There was a constant turnover in senior midwifery leadership and those they appointed were not given proper induction, mentoring or even guidance about their roles. In the work that the Minister is taking forward with the Secretary of State, will there be a concerted national programme of training and development for senior midwives so that there is a real opportunity to try to grip these issues?
My noble friend’s analysis is quite right. One of the reasons we are developing an anti-discrimination programme is that cultural change across maternity and neonatal services is much needed. I use that as one example; all NHS trusts are to have completed that programme by 2027, and that is already under way.
I found it absolutely shocking that so many senior people at Nottingham did not give evidence to Donna Ockenden’s investigation. That is why, once the Hillsborough law Bill receives Royal Assent, we will extend the duty of candour to the Leeds and Sussex reviews so that the chair, Donna Ockenden, will have the powers to find the truth from organisations and staff. On the earlier point, it is quite shocking and totally unacceptable that they refused to participate.
The Ockenden report does a great job in looking at the problems in one specific trust. However, the problems go much deeper, as the Minister has said. It is cultural, and one of the cultural problems appears to be that there is a complete split between a contingent of midwives and the rest of the medical profession about medical intervention. Until that is tackled, I cannot believe that we are going to get to the root of the problem. Will the Minister commit that the taskforce will delve into that difficult issue? It is cultural, but it is a very deep difference of opinion that goes back to the noble Baroness’s question about what has changed. That is part of what has changed.
The key is to bring together the recommendations from Donna Ockenden’s report with the independent report that we established, chaired by my noble friend Lady Amos, which will report on Wednesday, as well as the reviews from before. I do not think we necessarily need a description of the problem but, to the noble Baroness’s point, we do need action to challenge and monitor this. Transparency and accountability will also be our friends, which in Nottingham they were not.
My Lords, as we know, this horrific failure is not confined to Nottingham University Hospitals NHS Trust. A number of other NHS trusts are being investigated, and I suspect it goes much further. Neither is this a problem of just the last 13 years; it goes back decades.
Forty years ago, one of my twin sons died at birth, a combination of bad decisions, inadequate systems and negligence. It was similarly impossible to get answers, with the name of the midwife withheld and the notes disappearing, including the only photo, and no one held accountable. The damage to families from this type of behaviour is unquantifiable. How is the Minister going to change this endemic culture of cover-up in the NHS and ensure that systems are put in place so that when even one baby is put at risk, is damaged or dies, the situation is properly examined so that it cannot happen again?
I am so very sorry to hear of the noble Baroness’s experience; I am grateful to her for sharing it with your Lordships’ House. I am sure we all offer our condolences and understanding as far as we can to support her and her family, and I say how sorry I am for her loss.
The noble Baroness is right to talk about cover-up. That did happen in this case and has also been identified through other reviews. Certainly, as Donna Ockenden conducts reviews into Leeds and Sussex, we will be able to find out what happened there. But we are not waiting, and I assure the noble Baroness of that.
It is worth speaking about the role of the regulators, because it has come up not by using the word itself but by how account is kept. The Secretary of State is meeting with the GMC—which we currently have a three-month consultation on reforming—because he wants to hear its personal account for failings in care. The Nursing and Midwifery Council has been undergoing a widespread programme of reorganisation and change under new leadership, which, again, is much needed. I assure the noble Baroness that, as part of the taskforce, we are looking at all parts of the health system where things go wrong, including how accountability is established, because we should be avoiding that harm where it is avoidable.
Baroness Nargund (Lab)
My Lords, I welcome the report and thank my noble friend the Minister for all the work she is doing with the Secretary of State to support and to implement recommendations. Our thoughts are with the families affected. The report has yet again shown the racial bias in care, which is harming mothers and babies. I request that my noble friend the Minister ensures that cultural competency training is integrated in medical school and in midwives’ training, so that they are qualified after receiving that training and it is not left for later.
It is absolutely crucial, as my noble friend says, that the training should reflect the needs of the care that will be given. That is something that I know the taskforce will look at very closely. Donna Ockenden’s report offers insight and recommendations on workforce and training. The noble Baroness, Lady Amos, may also do so. I mentioned the anti-discrimination programme, but I should also say, on inequalities, that we have launched a maternal care bundle on what the best practice is for clinical conditions that are the leading causes of death for women from Black and Asian backgrounds. As I say, the numbers reflect a great inequality which cannot be allowed to continue.
My Lords, building on the Minister’s comments on the maternal care bundle, which was introduced because Black women are 2.3 times more likely to die in childbirth, this report also confirms that, in Nottingham and Nottinghamshire, infant mortality rates were significantly higher for Black and Asian women. In the report, a full dataset is not given of women of ethnicity. Can she also reflect on the recommendations from the Preterm Birth Select Committee report that we need more nuanced recommendations in this regard, and more work on causality? It is not clear, from what I have read in the report, why there is a 2.3 times greater likelihood that these women die; we need more work on that as well.
The noble Baroness is right to refer to the report undertaken by the Lords committee, which I was pleased to be invited to appear before. It is true that there is a complexity. Outcomes also vary between trusts. There are a lot of potential reasons, but “potential” is not good enough. In 2023, the number of stillbirths in the most deprived areas remained much higher than in the least deprived.
In all the ways that noble Lords, including the noble Baroness, have mentioned, there are deep inequalities. NHS England has published an inequalities dashboard. That is important because it supports the identification of areas where populations face the greatest disparity, so that interventions can be appropriate for them and there can be more equitable support. We will certainly look very carefully at the differences and the inequalities, because that will be a real driver for change.
Lord Roe of West Wickham (Lab)
My Lords, I thank my noble friend the Minister and the Secretary of State for their hard work, shining a light on the inadequacies in maternity services in this country. My question is more general. The Minister referred to the coming Hillsborough law—one would hope in the next Session—which will be vital to accountability and driving candour across reviews into areas of both public and private failure. I respectfully ask, if the Minister cannot update me on progress being made on an oversight mechanism, whether the relevant Cabinet Office Minister might write to me to provide an update on progress. I am afraid that without the addition of an oversight mechanism, whether through a powerful public committee set up within Parliament or an independent body, we will once again return to terrible stories, whether in maternity, construction or other aspects of care.
I will be pleased to raise that with my ministerial colleague in the Cabinet Office. I agree that an oversight mechanism is very important. On the Bill—which will, of course, become an Act—it is key to note that it will establish a new duty of candour and assistance at inquiries, inquests and other investigations. To the point that we are discussing here, the Bill will also allow for that duty of candour to be applied to health investigations by regulation. That is crucial, and it is by using that power that we will ensure that the Leeds and Sussex reviews, which are live, are included through secondary legislation.
My Lords, I align myself with the comments that have been made by the noble Lord, Lord Kamall, and the noble Baroness, Lady Pidgeon. This a totally devastating outcome. I pay tribute to the families that have been affected in this way.
I am just absolutely disturbed by the quality of the governance at the trust. I am shocked. I have chaired a number of trusts. To not put patient safety first and to not have the data available to make that judgment is absolutely appalling. Therefore, in terms of accountability, will the Minister assure me that the chief executive, the chair or, indeed, any members of the board who have been given honours as a result of their service to their trust are stripped of them? It is not an honour; it is absolutely devastating, and there has been a lack of duty in what they have achieved.
I completely understand the noble Baroness’s point. I am grateful for her sensitivity on this subject. I do not feel qualified to comment on honours and their removal, but I will raise it with the appropriate ministerial colleague to say that this is a view—exactly as the noble Baroness said. I know that she is not alone in feeling that.
My Lords, this is an appalling case, but some of the themes in it are common to other scandals, including the Post Office scandal: people being ignored, people not knowing how to complain and the system basically coming together to protect itself rather than representing and identifying failings. I accept that the Hillsborough Bill will be a step forward, but we also need a cultural change, and I stress that one of the issues is the GMC. Self-regulation has to go. It is about time that doctors were held to account, because anyone who has tried to complain about a medical situation through the GMC finds that it is labyrinthine and slow, and does not put the patient at the centre.
My noble friend is right to draw comparisons and, as I said earlier, I certainly agree on the point about culture that is made very clearly in the report from Donna Ockenden. I will be looking very closely at that also in the recommendations of my noble friend Lady Amos. As I said earlier, we have sought to make change. I do also think that accountability and transparency are absolutely key. It is one thing to seek to make change, but another for people to feel confident and to know it has happened.
Baroness Shawcross-Wolfson (Con)
I am grateful to the noble Baroness for her eloquent and moving statement and her commitment to taking action on this. The noble Baroness said that the workforce planning recommendations from the Ockenden review and potentially also from the Amos review will be picked up in the maternity taskforce action plan, due at the end of the year. Can she tell us how that will fit with the upcoming wider NHS 10-year workforce plan? Will the wider 10-year workforce plan also look at the staffing and training needed for safer maternity services, and can she confirm when it will be published?
We are soon expecting the 10-year workforce plan. In its considerations, it will address patient safety, because that is one of the requirements when thinking about workforce. But the really close look in the way the noble Baroness seeks will be through the plan which the taskforce is overseeing, having received the recommendations. It is the case that maternity services, for a whole range of reasons, including the absolutely shocking experiences that we have all referred to, have suffered in some areas because of a lack of safety, a lack of listening, and the wrong kind of culture and leadership—the list goes on. I know that noble Lords will have looked at the report and I would want to ensure that maternity services have their particular focus, in order that what I believe will be a credible plan by the end of the year will take account of the very points that the noble Baroness rightly makes.
(4 months ago)
Lords ChamberMy Lords, I congratulate the noble Baroness, Lady Janke, on securing a very important debate. I am also grateful to all noble Lords for their contributions. I recognise many of the challenges raised, which is exactly why we are taking the action that we are. I am glad that the noble Lord, Lord Evans, in particular welcomed the direction of movement, as have so many noble Lords, including the noble Baroness, Lady Pidgeon.
It is important that we look at where we started, because I think it reminds us of the scale of the challenge. It was the noble Lord, Lord Darzi, who made the point that we inherited an NHS facing the worst crisis in its history. We all know of people stuck on waiting lists for many years, staff who have felt let down by bureaucracy and little support, and patients who have had to navigate a system that all too often felt complex, disjointed and fragmented—the noble Baroness, Lady Brinton, spoke about literal navigation, which I thought was a key point. Not only was that the situation but we recognise that, while we are making improvements, there is some way to go, and I want to set that out at the outset.
I am grateful to the noble Baroness, Lady Lane-Fox, for talking of her own personal experience, and I can say to her that, yes, the patient is at the centre of all the reforms that we are making.
The noble Lord, Lord Darzi, found that society is getting sicker. People are living longer but in poorer health and with more complex needs. I should emphasise that that burden is not shared equally. The gap in healthy life expectancy has grown between the richest and poorest areas, and the model of care that was in place, which we are still seeking to change, while making progress, is working least well for those with greatest disadvantage, who are most likely to have complex needs. I agree that the system we inherited and are changing has been too hospital-centric, too detached from communities and too organised into silos. To the noble Baroness, Lady Lane-Fox, I say, yes, modern technology has transformed everyday life, and the scale of change certainly had not reached the National Health Service. We had a stark choice, as noble Lords know, and our response is reform
We also heard from staff and patients that they do not want the status quo. To agree with the noble Lord, Lord Scriven, people said that they wanted radical reform, and we have embraced that. I believe that the 10-year health plan responds to that, setting out the three fundamental shifts—hospital to community, analogue to digital, and sickness to prevention—with neighbourhood health at its very core. Our neighbourhood health framework, which was published in March, gives partners the clarity to develop locally led plans.
What is at the core of this debate is how to make that shift real. For the first time, the medium-term planning framework sets a target to reduce long waits in community health services, with at least 80% of activity to take place within 18 weeks by 2028-29. We are restoring GP access; to some of the points made about the important role, which we acknowledge, of the GP, more than 76% of people are now saying that it is easy to contact their GP, which is up from 61% when we came into office.
The noble Baronesses, Lady Brinton and Lady Gerada, and the noble Lord, Lord Scriven, all spoke of the importance of GPs. We are training thousands more GPs, and we are boosting capacity. From July 2024 to April 2026, we had more than 2,000 additional GPs; in total, we now have over 30,000, which is the highest number since 2015. This has meant that we have delivered 12.7 million additional GP appointments this year compared with last year, and I am grateful to GPs.
We are investing directly in the services that will make neighbourhood health possible, which was raised, quite rightly, by the noble Baroness, Lady Cass. I totally agree with her about young people having that voice, and we ensure that that is the case, but I know where to come should we need further assistance.
We have invested an additional £601 million in general practice, taking total GP contract investment to nearly £14 billion in 2026-27. A number of noble Lords, including the noble Baronesses, Lady Janke and Lady Leaman, spoke about the importance of community pharmacy, which I totally align myself with. That is why, to recognise that key role, we have given a 10% uplift, which translates to £340 million. Further on funding, as a number of noble Lords have raised, including the noble Lord, Lord Scriven, over £9 billion is being invested through the better care fund, and there is a commitment to deliver 250 neighbourhood health centres, for which the first 27 sites have already been selected.
This is not just a vision, but vision is important: one of continuous, accessible and integrated care, centred around the patient, which prevents ill health, intervenes earlier and gives people more control, by 2035. I understand the wish for pace, and I share it, but we also have to be realistic. There is a reason it is a 10-year health plan: it is not so we wait but so we have a plan that will transform the model of elective care.
Many interactions will no longer take place in a hospital building, but they will be able to take place. The noble Baroness, Lady Lane-Fox, asked whether we are using technology to the best advantage; the NHS was certainly way behind where it should have been, but we are moving towards that, because interactions will be able to take place virtually or through neighbourhood services closer to home. We will see the first NHS online hospital, the development of the NHS app—which has already greatly improved, as many of us know, as patients access care, information and appointments more responsively through their phones—and, by 2035, two-thirds of out-patient care will take place digitally or in the community. Central to that will be the single patient record, which I look forward to coming to when we receive the Health Bill.
General practice will remain at the heart of neighbourhood health. I heard what the noble Baroness, Lady Gerada, said. We are introducing two new at-scale contracts—the single neighbourhood provider and the multi-neighbourhood provider—to support GPs and partners to work against larger geographies. I recognise the pressure on GPs. We are working with GPs to assist them in their effectiveness and in the way in which they serve patients. Integrated health organisations will take responsibility for local population budgets. They will support integration and move resources to where they have the greatest impact.
Key within this debate, and raised in particular by the noble Baronesses, Lady Pidgeon and Lady Gerada, the noble Lord, Lord Scriven, and other noble Lords, is funding. We know the importance of ensuring that investment supports the shift from hospitals to communities—and I say to the noble Lord, Lord Evans, that that will include mental health as well as primary care and neighbourhood care. The 10-year health plan sets out an operating model that shifts power from the centre to local commissioners and providers. As I mentioned, ICBs and providers are developing medium-term and multiyear plans through the medium-term planning framework to show how they will use funding in line with the priorities.
I assure noble Lords that ICB allocations give greater growth to community rather than acute services to support the community transformation that noble Lords and I seek and to support neighbourhood health. We will continue to set those national expectations, and we will support that by changes to system incentives, such as financial flows. I hear the call for ring-fences, which is often made. It is a legitimate challenge, but they do not by themselves guarantee better outcomes. Our approach is to set national priorities and accountability, as well as enabling ICBs to use funding flexibly, because they are best placed, as we know, to meet local need and secure best value.
My point was that flexibility is taken away when national directives come down, forcing ICBs to spend money on acute and emergency care.
I always appreciate the expertise of the noble Lord, but I have set out our approach. We are focusing on outcomes and the best way to achieve them. We keep them constantly under review and discussion, so it is not top-down but how we are going to get to the place that all noble Lords want us to get to.
I know that I will be able to refer to only a limited number of questions, and I hope noble Lords will forgive me. The noble Baroness, Lady Walmsley, raised dental deserts. We are offering incentives to attract dentists under the golden hello scheme, which is what it says on the tin. Importantly, we are also increasing the supply of dentists. We have just announced the first sustained expansion of dental school places since 2007. The noble Baroness, Lady Walmsley, also asked about progress being made on publishing health food standards and the consultation. I acknowledge her particular interest and expertise. We will soon be consulting on the proposals for healthier foods targets and reporting. Importantly, we remain on track for delivering on this 10-year health plan commitment in this Parliament. If the noble Baroness would like further information, I would be very happy to obtain it for her.
The noble Lord, Lord Evans, asked about milestones that will be used to ensure that the shift from hospital to community is taking place, which is important. That is why we have published the Neighbourhood Health Framework, which will ensure that accountability. I am very alive to the points he made about mental health services, and I am sure that he welcomes the mental health strategy that will bring together all the points. I am very enthusiastic about the fact that we are piloting community-based mental health centres. I was glad to visit the one in Birmingham, which totally persuaded me of their value, but we must of course wait for the evidence.
I know that noble Lords know that the NHS that we inherited was under intolerable pressure. We have chosen reform, we have invested, we are rebuilding access, we are enhancing digital tools and we will deliver an NHS closer to home that is more preventive, joined-up and equal. That is the way we will take the NHS into the future.
(4 months ago)
Lords ChamberMy Lords, in begging leave to ask the Question standing in my name on the Order Paper, I declare an interest as former chair of the Human Fertilisation and Embryology Authority.
My Lords, the PATHWAYS trial entry age was recently reviewed by the MHRA and the sponsor, resulting in a minimum age of 11 for females and 12 for males. It aims to study treatment when it is most clinically relevant while safeguarding participants. Eligibility is tightly controlled; it requires parental consent, a minimum two-year gender incongruence diagnosis, psychosocial support, and NHS and multidisciplinary team approval, as well as participant understanding of the risks and benefits, physical and mental stability, and compliance with safeguarding requirements.
My Lords, how can the Minister justify the age of 11 for a puberty blocker trial? A child under 16 cannot consent to sex or to medical treatment if they are not Gillick competent. They cannot join the Army, smoke, take drugs or alcohol, or even watch social media soon. We condemn FGM, but here is something much more profound. I ask your Lordships to think back to when you were 11—did you understand what it meant to be a woman or a man? The children in this trial are utterly unable to give meaningful consent.
A trial of just two years will tell us nothing. We need retrospective evidence from those who have already taken these drugs. It is only when they reach middle age that those experimented-on children might reflect on whether it would have been better to have been fertile, to have had fulfilling, intimate relationships and to have been themselves. I predict litigation on the scale of infected blood. The first principle of medical ethics is, “Do no harm”. This trial cannot avoid doing harm. I think parents will join me in asking the Minister to stop it.
I appreciate that the noble Baroness has strong views—so do a number of noble Lords, as we heard on the Statement that I presented and responded to yesterday. On consent, I remind noble Lords that this is a sensitive, emotive and difficult subject, but that is why we have to be driven, as the previous Government were, by clinical evidence and experts. I recall that the noble Baroness, Lady Cass, who was rightly entrusted with an independent review, said:
“This is an area of remarkably weak evidence”.
There are always choices. We could continue with uncertainty and risks to the safety of children and young people, which I think none of us wants, or undertake a scientifically guided trial for 233 children, with all the right safeguards that I have referred to, and protect children and young people.
My Lords, am I right that these drugs are also sometimes necessarily available to quite young people who might otherwise go into premature puberty, with serious health results? With gender dysphoria, is it not better that we look into the possible use of these drugs rather than have children and young people fixate on surgery, which is much harder to stop or reverse?
My noble friend is quite right about the use of these drugs. It is important to note that we banned their use indefinitely for gender dysphoria outside of research settings because of the immense concerns about safety. That ban has been in place since January 2025. She is also right that the issue will not go away. The right way to protect children, as I have said, is to act on clinical evidence and opinion, and to make that decision with a cool head. That is why, despite the difficulty of such a decision, the Secretary of State has made it. He is doing the best he can to protect children in this situation.
My Lords, the review from the noble Baroness, Lady Cass, warned that having no formal medical routes risks driving families towards unregulated online pharmacies and private clinics abroad. Given that an indefinite pause of the trial left some highly vulnerable young people in a state of clinical limbo, does the Minister agree that getting an evidence-gathering trial under way would be an effective way to protect them from the dangers of these unregulated and unmonitored markets?
I certainly do agree. As I have said, having put a ban in place, we will take action against those who seek to transgress and benefit from it by seeking to sell drugs that are not permitted. That is a totally unacceptable route for them to follow. They risk the safety and well-being of children.
Baroness Cash (Con)
My Lords, yesterday the Minister told the House that the PATHWAYS trial would be covered by insurance. I have been unable to identify any insurance company that will cover such treatment, even in a trial setting, so can she tell us how insurance has been obtained, the information on which it is based and from which provider it has been obtained? I appreciate that this may not be possible in the Chamber due to time, but I would be grateful to see the information provided in detail and the terms of the policy.
Although I am keen to be helpful to the noble Baroness, my comments yesterday related to trials and insurance provisions. I do not know what research has been undertaken since then. I would be pleased to write to her; I cannot promise the detail she seeks, but I will seek to be helpful.
Baroness Cass (CB)
My Lords, I have spoken to my clinical colleagues about the issue of age at enrolment and they expect enrolment at 11 or 12 to be vanishingly rare. However, I ask noble Lords to consider the case of a child I will call Jo, who was a biological male socially transitioned at two and a half by his parents. At 11, she—I say this advisedly, because the chances of her reverting to her biological gender are vanishingly remote—has been in stealth and will not go to secondary school because she is so afraid of being outed in that environment. She is now refusing to come out of her room except very rarely and has weak bones, not as a result of puberty blockers but through inactivity. Should her subsequent treatment be decided by politicians or by the clinicians looking after her?
The noble Baroness brings her expertise to the subject and I am grateful to her. This is not a political matter. As I have said, it must be driven by clinical evidence and focus on the safety of our young people. The example she gave is deeply disturbing and is a result of not taking action that is evidenced.
My Lords, the only thing that matters in this instance is the right of the child to the best and most appropriate treatment. Therefore, does the Minister agree that puberty blockers are used for a range of conditions and that any approach must therefore be based solely on the recommendations of the multidisciplinary team, the clinicians involved and the needs of the patient?
Yes, it is certainly the case that this is a medical matter. We need to remind ourselves, and my noble friend gives me that opportunity, that puberty blockers, as we are calling them, are used for other conditions, but the reason why we are having the trial is because we have accepted the advice and acted on the principles that my noble friend has outlined.
Would the Minister agree that the scientific trials are the best way to try to remove this from the culture wars that are so damning this particular topic?
I am very glad to agree with the right reverend Prelate. As I said earlier, it is very important to have a cool head, to be evidence-based and to not politicise this. This is too important to take those risks.
(4 months ago)
Lords Chamber
Baroness Hyde of Bemerton
To ask His Majesty’s Government what steps they are taking to improve awareness and reduce the prevalence of foetal alcohol spectrum disorder.
My Lords, we continue to promote the advice of the Chief Medical Officers in the UK that pregnant women or those planning a pregnancy should avoid alcohol, alongside promoting the NICE quality standards on FASD. We are committed to ensuring that all pregnant women with alcohol problems are supported to reduce the risk of harm to them and the foetus. This includes providing local authorities, through the public health grant, with £3.4 billion of funding for alcohol and drug treatment and recovery over the next three years.
Baroness Hyde of Bemerton (Lab)
Labour Governments have a hugely successful track record of improving the health of the population, for example, reducing smoking in public places and the recent range of measures in the Tobacco and Vapes Act. Research evidence suggests that the impact of drinking alcohol in pregnancy—any amount of alcohol—may be comparable or greater than the risks of smoking. Therefore, would the Minister undertake to review all opportunities for enhancing prevention, such as adding foetal alcohol spectrum disorder prevention measures to the recent women’s health strategy, strategies for sexual and reproductive health and the interim mental health strategy? Will she also work with colleagues to ensure that FASD education and prevention is a policy priority for local authority health teams?
My noble friend is quite right. There are tremendous opportunities to link up work on tackling foetal alcohol spectrum disorder with other parts of our work, not least the major principle of moving from treatment of sickness to prevention. I assure my noble friend that we are working across government. We will also continue to work with all local areas so that we can address unmet need, prioritise prevention and make sure that we have improvements to alcohol treatment services. All of these will make a difference.
My Lords, according to the association for FASD, every prevented case saves over £400,000 in lifetime costs, as well as the personal tragedy. Universal antenatal alcohol history taking is recommended by NICE guidelines, but implementation remains variable. Will the Government embed NICE guidelines everywhere, alongside a national public health campaign on alcohol in pregnancy, equivalent to the effective existing smoking in pregnancy campaign?
In addition to the ring-fenced funding I spoke of, we are going further on alcohol labels to get across the important points. In 2022, NICE produced and published a quality standard, which the noble Baroness referred to, so that the system can help diagnose but also support those affected by FASD. I am not aware of there being widespread difficulties with its adoption, because it is so fundamental to pre-pregnancy and pregnancy care, but, if the noble Baroness has particular examples, I would of course be pleased to look into them.
My Lords, the Government’s initiatives on alcohol prevention in pregnancy are to be welcomed and are very impressive, but can the Minister assure us that the industry itself will not be involved in consultations and in designing public health programmes? To date, the tiny pictograms on bottles, particularly of wine and other alcohol products, are so small that they are ineffective. We really need consistent messaging in a much broader sphere where people eat out, drink out and socialise, and in all public health measures.
I take the noble Baroness’s point, which is why I am glad that we committed in the 10-year health plan to making it a legal requirement—therefore strengthening it—that alcohol labels display health warnings and consistent nutritional information. That is something else that noble Lords have raised. As was referred to in the previous question, it is also important that we note that part of care for pregnant women is dealing with alcohol consumption.
Baroness Nargund (Lab)
My Lords, no amount of alcohol is considered to be safe in pregnancy. Foetal alcohol spectrum disorder—FASD—affects roughly one child in every classroom of 25 children, and it is a preventable neurodevelopmental disorder. A report published just two days ago by the National Organisation for FASD suggests that inaction in addressing this problem is costing the UK economy £9.2 billion annually. As most people in the UK drink alcohol, and as nearly half of pregnancies are unplanned and one-third of births are unplanned or associated with feelings of ambivalence, I ask my noble friend the Minister: do the Government have any plans to extend the public health campaign to pre-conception clinics and to advise women who are planning to get pregnant? That requires pre-conception advice, as so many pregnancies are unplanned. Will the Government also link that to school education, please?
My noble friend is quite right about the potentially lasting effects of foetal alcohol spectrum disorder on children, which is why the main priority is preventing it. There are three approaches. First, the clear advice—the safest approach, if you are pregnant or could become pregnant—is not to drink alcohol, and that will remain consistent. I have just referred to the legal requirement for alcohol labels. We will of course continue to look at how prevention messaging can best reach people pre conception. The obvious point here is that so many pregnancies are not planned, so there is no neat solution to getting to the right people. We have to get our messaging right, which is why we are taking the approach we are.
My Lords, the Department of Health and Social Care’s own health needs assessment noted that there are still no reliable prevalence studies for foetal alcohol spectrum disorder in England, despite estimates suggesting that the UK may have one of the highest rates in Europe. How can the Government effectively reduce the prevalence of foetal alcohol spectrum disorder when they still do not know with confidence how many children and adults are living with the condition? What steps have the Government taken to improve diagnosis and data collection?
The noble Lord is quite right that we are working on estimates, and there are a number of practical reasons for that. To come to the noble Lord’s real point, the first National Institute for Health and Care Research challenge funding call was launched in 2024, backed by £50 million. That tasked researchers and policymakers with finding new ways to tackle maternity disparities and poor pregnancy outcomes, and clearly that will support further research and policy. So we are looking to the future and I take on that challenge; it is one that we are meeting.
My Lords, of course prevention is important, but does the noble Baroness agree that children with foetal alcohol spectrum disorder need continuing specialist education and support throughout life, as do their families, many of whom of course are adoptive families?
The noble Baroness is quite right. This is one of the many reasons that I am enthusiastic, as we move towards the single patient record. We will absolutely ensure that carers and parents—however families are formed, because of course they are formed in different ways—are part of our consideration. The noble Baroness is absolutely right about that.
As my noble friend said, this is important before people become pregnant. Many people who become pregnant are of course young women, but so much of the advertising by the alcohol industry is aimed at exactly those youngsters. Although I take the point from the noble Baroness, Lady Finlay, about not involving the industry in the solutions, I do think that the Government should talk about advertising that is not aimed at young women, because they are exactly the ones who might become pregnant.
On the matter of advertising, particularly when we think about other areas as well, we work on the basis that we are not banning alcohol use: I absolutely know that my noble friend is not asking for that. I am sure that would not be popular in your Lordships’ House, so it is probably good that I put it on record. However, what matters is that we are all equipped to make the right health decisions and are actively supported, not just through information. Industry has a role to play in promoting responsible drinking, which is important in pregnancy and in general terms as well. It is one of the health risks that we need to tackle. As we move to create the healthiest generation ever, our work on alcohol as well as tobacco and obesity is absolutely key.
(4 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 £1.33 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.
(4 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.
(4 months, 1 week 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 £555 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.
(4 months, 1 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 £113 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 £42 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.
(4 months, 1 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 £4.75 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.