(3 months, 1 week ago)
General CommitteesIt is a pleasure to serve under your chairmanship this afternoon, Mr Stringer. Before discussing the regulations, I want to acknowledge their origin. The horrific Manchester Arena attack killed 22 people and injured more than 1,000 others. I express my condolences and good wishes to all those affected by that vicious attack.
Those running events such as concerts are required to comply with the law, to follow Health and Safety Executive rules, including the purple guide, and—of particular relevance to this debate—to ensure that they have appropriate medical cover. I thank Sir John Saunders for his work on the inquiry. He found very severe deficiencies in the medical cover that night.
SMG had contracted Emergency Training UK to provide medical cover. The person leading that organisation said he had a valid major incident medical management and support qualification—I am sure the Minister has done that qualification, as I have, because hospital MIMMS covers the response to a major incident. He also said that he had an Advanced Life Support Group qualification in advanced life support, but he did not. Again, that is a qualification that both the Minister and I have. I have taught on one of its courses.
This individual was not a health professional, so he was not regulated by the General Medical Council or the Nursing and Midwifery Council. He did not provide adequate training, equipment or record keeping, and he employed staff to do a job for which they were not qualified. Such events are required to have a certain level of medical cover, and although the staff he employed that night did their best, they did not have the level of medical training they should have had. He performed an inadequate risk assessment. Particularly horrifically, he had worked in the arena providing medical cover for a long time.
Of course, most of the time, all was well. However, the system, such as this individual had one, was weak, and when faced with the attack and multiple seriously injured casualties, fell apart. The consequence is that, despite the best efforts of his staff and many others who were present, a poorer quality of healthcare was given than should have been provided had he done his job properly.
Quite reasonably, that caused anger and questions. How on earth could someone be allowed to set up a service to deliver healthcare and safety provision, not through volunteers but as a company, and not provide the proper staff, training or equipment? It was either dishonest or incompetent. It was disgraceful, and the inquiry report was rightly scathing.
The report recommended that the regulation of event medical care be considered, saying that the CQC had suggested that it was the right organisation to provide that. It also recommended that the Government set a standard of medical care for different events to which individuals should be held to ensure consistency, and strongly recommended that sanctions be put in place so that people who do not comply, such as the company in this case, would be subject to criminal or civil sanctions, or both, for their actions. I was outraged when I read the report. Of course, we all want the highest quality healthcare for everybody on all occasions, but we have to consider soberly whether these regulations are the best way to achieve the outcome we all want to see.
The regulations remove exemptions for on-site healthcare at sports events and music festivals, but there is a question of scale. Manchester Arena holds up to 21,000 people, and sporting events or festivals can have many more participants and spectators. There are strong arguments that such events, which usually have commercial healthcare providers, should provide a great service with suitably qualified staff, and should face sanctions if they do not. However, not all sports events are at Wembley, Silverstone or Twickenham, and not all music events are Lost Village, Glastonbury or Manchester Arena.
What will be the effect on grassroots sport? Some small-volume events are high-risk sports and need medical cover, as the Minister suggested, but how small is too small to require healthcare? What regulation will the Government put in place for that? As the regulations also affect volunteers, will they discourage volunteering in healthcare provision? If so, will that affect the ability of sports events to take place, and how many events will be affected? The Government have admitted that they do not know the answer.
The other small peculiarity is whether medically qualified staff will need to step back in favour of non-medically qualified staff who have a first aid certificate to avoid the need for registration, which I will come to in a moment. Will cover, in some cases, be downgraded to first aid cover that, unlike TDDI cover, does not require registration? If there is such a downgrade, will it be good or bad for patients?
What is first aid? The Health and Safety (First-Aid) Regulations 1981 define it as
“cases where a person will need help from a medical practitioner or nurse, treatment for the purpose of preserving life and minimising the consequences of injury and illness until such help is obtained”,
or as the
“treatment of minor injuries which would otherwise receive no treatment or which do not need treatment by a medical practitioner or nurse”.
As the Minister said, first aid will remain exempt from registration, but it is not entirely clear whether that remains the case where it is provided by a healthcare professional. The CQC website says that first aid is exempt where it is provided by a non-healthcare professional with first aid training or by a healthcare professional who is acting in an emergency or unexpected situation, but if a person is at a sports event specifically to provide healthcare for people who might have an injury, is that an unexpected event? Does it count as first aid, or is it TDDI?
I note that many of the people who responded to the consultation said that it is not clear where first aid finishes and TDDI starts. It is important that the Government define that more clearly. If they do not, there is a risk that people will not provide healthcare when they could provide it perfectly competently, because they are concerned they do not have the registration status to do so and fear the sanctions that may be imposed, when those sanctions have been decided.
Some of this might be covered by the guidance. The recent Government scoping exercise planned 49 types of guidance, including the purple book and the green book. But it is notable that whereas the Health and Safety Executive used to publish the purple and green books or their equivalents together, they are now provided separately; the purple book costs £50 to read an online copy and the green book costs £30 to read an online copy. That might not be of any particular consequence to Twickenham, Wembley or Manchester Arena, but it is of consequence to people running very small events, whether sporting, cultural or musical.
Can the Minister say when the event healthcare standards will be published? He is asking us to vote to hold people to a standard he has not written yet. Will it be free to access? What consideration will be given to support specific courses? The Rugby Football Union, for example, provides specific courses for healthcare provision at its matches. What role will it play in event healthcare standards? What provision will be made for children? Children are not just small adults and specific healthcare considerations may apply.
Another issue, which the Minister himself touched on, is whether the CQC is fit for purpose. The Secretary of State said that it is not. I have not heard the Minister say what additional resources will be provided to the CQC to deliver the additional regulations. There is a difference between healthcare providers in a muddy field or on the side of a hill compared with medical care providers in a hospital with a full suite of equipment. What extra training will the CQC need to regulate this? What will be provided? Is the Minister confident that it can be done, particularly in time for the deadlines imposed by the regulations we are being asked to vote for today, given that the event healthcare standard has not even been written or published yet, and given the Government’s propensity to delay the publication of things such as the workforce plan, which was due over a year ago and has still not been published?
Another issue is mountain rescue. I should declare an interest as a former member of a mountain rescue service—the Minister is smiling. The service follows insurance licensing rules and the purple book. It also has training for remote rescue medical technicians that is governed by the Mountain Rescue England and Wales medical sub-committee under the auspices of the University of Lancashire. It has expressed significant concerns. First, if there is a healthcare professional on the team, what effect do these regulations have? Will they be able to carry the controlled drugs that they are able to provide for the rescue services if they need to administer healthcare on the side of the mountain? These are volunteers, not paid employees. Who will do the paperwork, who will pay for it and who will fund it? Will the Government consider exempting mountain rescue services and volunteers from the charges?
Will England be a less attractive place for events? The costs and numbers appear far higher than the Government estimate. Sports bodies have done a survey that suggests that almost half of doctors will withdraw from doing voluntary events because of the regulations. What about the wider costs for sports and events? They currently face costs for national insurance, employment costs, rising inflation and Martyn’s law, and now there will be the cost of these regulations. What sanctions will there be? It will be against the law to breach the regulations, but what will happen to people who do?
What will be the effect on international sporting events? Some international teams bring their own medical teams with them. The individual medical team applies for temporary GMC registration, usually a couple of months before they come over for events. They may provide TDDI to those in their care. Will that be affected by the regulations? Will they need to register or not? Physiotherapists too have asked whether the care they provide will count as TDDI or as first aid. Will they need to register?
In the previous Government’s assessment in 2023, the cost was put at £1,200 per registration and an ongoing £1,900 per annum. What will be the effect of meeting the event healthcare standard on the smallest events and how will volunteers manage those costs?
The Government have created an exemption for transport within a site. I want to understand why. For example, my husband was injured in an accident at Silverstone a couple of years ago. He received healthcare in the car, and then as he was being transported to the ambulance building within the complex. He was given excellent care, for which I am very grateful. The helicopter then came and took him to Coventry hospital. Why have the Government chosen to regulate the on-site care that a person receives in the vehicle they were driving, for example, and the care provided in the hospital, but not in the gap between the two? That seems a little peculiar to me. The Minister has obviously thought about it carefully, and I wonder what reason he will give.
The healthcare professional in charge at some events can be quite junior. I went to an event with 18,000 people and met the medical team there, which was led by a doctor three years post qualification. That seemed quite a junior doctor to be covering a whole medical team. I also noted that the responsible officer was his employee. Although there is no rule that stops a responsible officer being an employee, I should explain that the responsible officer is the doctor who signs off on one’s annual appraisal and General Medical Council revalidation every five years. Clearly, there is a conflict of interest if a person’s boss is asking to be signed off. Can the Minister please look at that to see whether it is appropriate a responsible officer to be an employee, as that was also happening in an event setting?
Although I think the draft regulations are born from a good place with an important motivation, and it is important that they are done correctly, we do not currently know their cost, effects, scope or standards, including their effects on grassroots event boards. We therefore cannot have confidence that they will achieve the goal we want. Everyone in this room—everyone in the country—wants everyone to receive the best possible healthcare, but I am not convinced at this stage that the Government have really got this right.
Dr Ahmed
My hon. Friend raises an excellent point; I am very happy for the CQC to take that away and answer her specific question. On the issue of what constitutes first aid or more complex medical care, all of us who have been medical cover at events have sometimes come across the incongruous situation where being a medically qualified doctor is sometimes not enough to provide first aid. Those incongruities have existed for as long as I have been in practice, and I do not think the regulations particularly change that. It is often down to individuals’ interpretation of first aid, as well as their insurance cover, and I am sure that we do not want to overly complicate this matter.
Dr Ahmed
The hon. Lady knows that I often indulge her interventions, but not today. These regulations are a response to a public inquiry and are designed to ensure that the CQC has the scope and oversight of events and arenas. It is for the CQC over the next 15 months to provide some of these definitions and clarity, and they are absolutely the right people to do it. On that basis, I ask colleagues to support this very necessary measure to protect those the people we were elected to serve.
Question put.
(3 months, 2 weeks ago)
Commons ChamberI welcome the Minister to her post.
To provide cancer care of the best quality, we need the right workforce. Before the election, the Secretary of State said that he would double the number of medical school places, but he now appears to be quietly dropping that plan. He said that he would provide thousands more medical training jobs, but now he is rowing back on that promise. He said in 2024 that he would publish a comprehensive NHS workforce plan, which was promised for summer 2025 and then for autumn 2025. We are now in spring 2026. When will the workforce plan be published, and does the Secretary of State still intend to double the number of medical school places?
We are well aware that there are issues with the workforce across the NHS, which is why we are working on a new workforce plan that will be published in the spring—very soon.
I hope that it will be published very soon, because for people with cancer, being seen quickly is key.
Let me return to what the Minister for Care said to my hon. Friend the Member for Hinckley and Bosworth (Dr Evans). The Government appear to have decided that referrals will no longer be triaged by a consultant, and that a set proportion will be rejected. What evidence do the Government have that it will be safe for others to provide this triage? If a set proportion are to be rejected, does that mean that the Government will ask doctors to change their clinical thresholds, and if so, what evidence do they have that that is safe? Surely the Minister would not compromise patient safety for a short-term improvement in figures.
(4 months ago)
Westminster HallWestminster Hall is an alternative Chamber for MPs to hold debates, named after the adjoining Westminster Hall.
Each debate is chaired by an MP from the Panel of Chairs, rather than the Speaker or Deputy Speaker. A Government Minister will give the final speech, and no votes may be called on the debate topic.
This information is provided by Parallel Parliament and does not comprise part of the offical record
It is a pleasure to serve under your chairmanship this morning, Sir John. I declare an interest as an NHS consultant paediatrician and as a member of the Royal College of Paediatrics and Child Health. I congratulate the hon. Member for Rossendale and Darwen (Andy MacNae) on securing today’s important debate.
The death of a child is every parent’s worst nightmare. It is perhaps even more horrific when such a death happens suddenly, without warning and when no explanation can be found. I would like to convey my condolences to the family of Frankie Grogan, to Cheryl, Darren and Louis, to Nathan and Fiona, to the Rogers, Pitts and Williamson families, and to all other families grieving such a profound loss.
Childhood death is thankfully rare. However, more than 3,400 children aged nought to 17 die in England each year, and in around 40 cases the death cannot be explained. Parents are left with more questions than answers. Why has this happened? Why now? Since many cases are unwitnessed, did the child suffer? What was the cause? Could it have been prevented? Will it happen again to a sibling or a future child?
I want to focus on two questions today: how do we identify the cause of death in more cases? And how can we use that information to prevent future deaths? We can do that because we have done it before. In the 1980s, 2.35 children per 1,000 live births died within between a week and two years. That has been reduced by over 90%. The key factors were research, the Back to Sleep campaign, general safe sleeping advice and the avoidance of cigarette smoke. There is more to be done, but with the right plan, we have shown that lives can be saved.
I would first like to acknowledge some progress, including through the work of Baroness Kennedy, whose 2004 report and subsequent work with the Royal College of Pathologists and the Royal College of Paediatrics and Child Health led to the introduction in 2008 of a standard set of clinical samples, called Kennedy samples, that must be taken in the event of a sudden child or infant death. In most of the trusts I have worked in, there is now a box in each emergency department with all the samples and a list of what needs to be taken so that nothing is missed in any cases.
Child death overview panels, which were also established in 2008, are multidisciplinary panels to review the deaths of all children aged nought to 17. That process was further updated in 2018. When a child dies, all registrars must inform the child death overview panel, of which there are currently 58 in England. An expected death goes to a review meeting to look at the detail of the causes and whether it can be prevented in the future. In an unexpected death, there is an urgent joint agency response meeting including police and education, and a review meeting takes place later. All that information then feeds into the national child mortality database, set up in 2019, which is there to spot patterns and aims to prevent future deaths. It produces several reports each year with detailed guidance for Government on how deaths can be prevented.
It might be helpful to discuss an example. In December 2024, the NCMD published a report on child deaths due to asthma or anaphylaxis. I commend those who produced that report, including my medical colleague Dr Emilia Wawrzkowicz. They found that certain factors increased the risks of asthma or anaphylactic death in children, and that milk was most likely to trigger a fatal reaction. They found problems with auto-injectors that were forgotten, out of date or not with the child, or that the training had not been adequate, particularly in schools. They found issues with indoor air pollution, a failure to recognise life-threatening asthma and that children did not have asthma action plans.
Work has been done in many of those areas, which will have saved children’s lives since. My hon. Friend the Member for Rutland and Stamford (Alicia Kearns) has been promoting Benedict’s law, which hon. Members voted for just last week, to ensure that children at school are protected from anaphylaxis. Can the Minister update the House on progress in delivering the recommendations of the national child mortality database’s report? At the moment, the Government are not obliged to produce a response to the recommendations of the national child mortality database’s reports, unlike many other reports, and I think they should be. A more recent report was on the effect of consanguineous marriage on the rate of child deaths. It would be helpful to have Government responses to show that those reports are being read and acknowledged, and that the work that has been done is leading to change.
I worry about the effect of the imminent abolition of NHS England on the national child mortality database’s work. Child death overview panels do very good work in investigating each child death individually, but ICB funding cuts mean that not only bereavement staff, but investigatory staff, are being cut. The mergers of ICBs mean that local knowledge may be lost as the areas become very large. That is not in line with the statutory guidance in the Children Acts. Can the Minister update us on the Government’s plans in that area?
Whole genome sequencing offers an increased likelihood of finding children’s causes of death, but there is a long wait for results; it can take six months. Families are in great distress while they wait for those results, as we have heard. The Government suggest that they want to expand genome sequencing work, but it has already taken a very long time and the workforce plan has not yet been published. What are the Government doing to make sure we have the right staff and the right capacity to deliver that ambition?
Skin biopsies can be very helpful, particularly in diagnosing inborn errors of metabolism, which in children can cause illness and death, but they are not yet available everywhere. Can the Minister update the House on what is being done to roll out these tests so that, where possible, all causes can be found?
The Liberal Democrat spokesperson, the hon. Member for Mid Sussex (Alison Bennett), mentioned the fact that there are not enough pathologists. That is very important because it causes distress and delays, including to post-mortems, and it means that families have to wait much longer for results. Also, some children tragically die overseas, as happened to one of my patients relatively recently. In such cases, SUDC panels rely on being told about it and find it more difficult to investigate. Does the Minister have any comments on that?
Hon. Members talked about research. The Lullaby Trust has been doing gene sequencing on tissue samples from children who died of sudden unexplained death. In four of 20 cases, the tests were able to find evidence of infection, so there is hope that people who have been bereaved by a sudden unexplained death in the past can, with more modern techniques and retained tissue samples, discover the cause in the future. However, that will only happen if the research takes place. This research is charitably funded. We heard about the charity-funded research being done in Bristol, but the Government also need to fund research so that we get as much information as possible to prevent these deaths.
Lastly, I will talk about bereavement support. We have heard about the vital role that it plays in helping families, including siblings, in their time of grief, but I have heard about cuts to that as a result of mergers and funding changes to ICBs. In one case, a phone line has been taken away, meaning that families who want to approach bereavement support have to email and wait for a response—I can see hon. Members frowning. This is clearly not good enough, so I urge the Minister to look carefully at it and take the time to find out what is going on in each ICB regarding the commissioning of these services, so that we are not leaving families without the support they need during the most awful time they could ever experience.
What we have heard today is a call for action. We have heard a call to explain the unexplained, support families better, improve on research and, ultimately, to prevent the deaths of children.
In calling my long-standing friend, Mrs Hodgson, I let hon. Members know that she has agreed to leave a couple of minutes at the end for Mr MacNae to wind-up. In turn, he is about to agree to leave a couple of moments at the end for me to move the motion.
Yes. I thank the hon. Member for his very moving speech; he often moves me to tears in moments such as this. I will take that away, and ask my officials to look at the work of Queen’s University Belfast, because he makes a very important point.
The shadow Minister, the hon. Member for Sleaford and North Hykeham (Dr Johnson), made a couple of points. I will write to her on the Government’s responses to recommendations, because it is a valid point and one that we should be aware of in future. On the point about ICBs making services more effective by cutting duplication and making sure we have the right people in the right places to deliver quality services, that is something I will also be paying particular attention to, as the Minister with responsibility for children’s health.
My point was less that mergers of ICBs would make services more efficient, but more that that is leading to services being cut, which may make them less good, and that the principle that CDOPs look at the local area is diluted if the local area becomes very large.
I take on board what the hon. Lady says. When I write to her on the point about responses to recommendations, I will elaborate further on that point, having made sure that I have understood it correctly.
(4 months ago)
Westminster HallWestminster Hall is an alternative Chamber for MPs to hold debates, named after the adjoining Westminster Hall.
Each debate is chaired by an MP from the Panel of Chairs, rather than the Speaker or Deputy Speaker. A Government Minister will give the final speech, and no votes may be called on the debate topic.
This information is provided by Parallel Parliament and does not comprise part of the offical record
It is a pleasure to serve under your chairmanship this afternoon, Mr Mundell. I must first declare an interest as an NHS consultant paediatrician. I thank James Esses for the petition and the thousands of people who have signed it, including many of my constituents, for enabling today’s important debate. I also thank the hon. Member for Caithness, Sutherland and Easter Ross (Jamie Stone) for leading the debate so well.
The petition asks the Government to cancel the puberty blockers trial and to safeguard vulnerable children. Perhaps it is worth considering whether clinical trials in children are a good idea in principle. The answer, of course, is yes. Children are not just small adults; they have different illnesses from adults, they present with different symptoms and respond differently to medication, and they require different doses at different ages. Properly designed clinical trials ensure that children’s medicines are safe and effective for them.
However, today we are discussing one particular trial: a proposal to give puberty blockers—gonadotrophin-releasing hormone analogues—to children, specifically for gender incongruence. Perhaps at this point it is worth considering why doctors and others prescribe medication; we do it to treat or cure disease, to treat or lessen symptoms and to aid in diagnosis.
What does this trial seek to do? On the face of it, it seeks to establish whether puberty blockers are a safe and effective treatment for gender incongruence. ICD-11 defines gender incongruence as:
“A marked and persistent incongruence between an individual’s experienced gender and the assigned sex”.
To suggest persistent incongruence with gender stereotypes is wrong could undo years or decades of rolling back gender norms. If it is not causing the person any distress, why would we want to treat it, especially when we know that most children, even those with gender dysphoria who do have distress, will get better without any puberty blockers?
Currently, there is no way to identify which children will persist with a trans identity as adults and which will not. The much-delayed data linkage study could help with that. It could enable more targeted interventions and may also provide information on the long-term outcomes for people who have taken puberty blockers in the past. However, the Government insist on pushing on with the puberty blockers trial anyway, before the data linkage study is complete. Why? In written parliamentary questions, Ministers have said that they expect the data linkage study to be finished by April 2027, so what is the rush?
What is the point of the treatment? It has been suggested that it helps transgender adults pass more easily as the opposite sex and potentially avoids surgical operations in adulthood, but how on earth can it be ethically, morally or medically right to treat a large group of children with risky medication to give cosmetic benefits to a much smaller number of adults?
There are also cosmetic risks to the treatment. The penis grows very little between the ages of three and 10 years. The use of puberty blockers restricts growth, meaning those with a persistent trans identity may struggle with having enough tissue for a vaginoplasty surgery, and those who do not have a persistent trans identity may struggle with normal intimate relationships.
As mentioned earlier, the Secretary of State has said that he has confidence in this trial. Now it has been paused, we can presume that he is not quite so sure. But can we, patients and the general public have confidence in this trial? There are certainly causes for concern. In fact, there are so many that I cannot speak of them all today, but I would like to speak of a few in the time I have available.
First, on the selection of patients, we have had a dramatic change in the demographic. There has always been a small number of children uncomfortable in their own bodies, but there has been a rapid increase, which is not fully understood, particularly among girls. Many of them are in care, some have autism spectrum disorders and many are same-sex attracted. We need to understand this before prescribing irreversible treatments.
We do prescribe—and I have prescribed—drugs that are high risk or potentially harmful to children. An easy example would be chemotherapy, but that is being given to save a child’s life; it is not used to pause a perfectly normal physiological process in a physically healthy child. The risks of these treatments have been listed today, but I will list just a few: fertility problems; idiopathic intracranial hypertension; demineralisation of bone density, leading to fractures; in some studies, an increase in depression and anxiety; and the long-term loss of sexual function in some patients. We have discussed consent. How do you get consent from a parent of a child—a boy or a girl at Tanner stage 2—about long-term sexual function and fertility?
On the design of the trial, it is said to be a randomised controlled trial. Well, it is, but that is a bit of a fudge, because instead of an actual randomised controlled trial where some patients receive puberty blockers and some do not, it has given some now and some slightly later, with a very short difference in the timing. The comparison group that does not have any puberty blockers at all is taken from a slightly different population, which introduces an unnecessary bias. The trial’s organisers have said that they are doing that because they think the children would get the drugs from elsewhere or from abroad, but that is not how we do medical trials. When I have raised this issue, Ministers have responded that it cannot be blinded, but blinding and randomisation are not the same thing. The trial is also far too short to provide data on long-term outcomes.
On the process of the trial, the hon. Member for Gower (Tonia Antoniazzi) raised questions about what children are being asked as part of this trial. Why is the trial proposing to ask children about their sexual experiences? Why is this helpful to the trial?
I will not because I am aware of the time.
The Commission on Human Medicines’ report heard that, because trials of puberty blockers have been blocked, some clinicians are trying to use other drugs to limit puberty, such as spironolactone and cyproterone acetate. There have been reports that the number of prescriptions for spironolactone in 10 to 17-year-olds is going up. Could the Minister confirm whether that is the case and what the Government are doing to look into it?
The MHRA was happy with the process; now it is not. What has changed? None of the issues raised seem to have not been raised before. The Government are being secretive about it: in February, Ministers brought forward a written statement referencing an MHRA letter in November, but the Minister is refusing to publish it. I have asked Ministers whether they talked to MHRA officials about the trial before February 2026, and they will not answer the question. There was a letter between the MHRA and KCL; I asked when it was received, when the Department became aware of it and when Ministers became aware of its contents. They will not tell me.
What about the people controlling the trial? As has also been mentioned during this debate, Professor Jacob George has been recused from further involvement. According to the MHRA’s statement, this is “a precaution”, because of social media posts made before his involvement. Why have those who have made the opposite type of comment not been recused too? This will inevitably make members of the public think there is bias involved.
There is an oversight board. What has the Minister done to ensure that the clinicians and scientists on that board are impartial, and that it is balanced between both perspectives? The Tavistock trial was supposed to report to the MHRA, but it did not, seemingly with no consequence. There will be lay members on the board with lived experience; will one of those be a detransitioner, or will they all be people on one side? That would increase the perception of bias in this trial.
In summary, this is a trial of risky medication on healthy children, most of whose features of gender incongruence will resolve in time, given normal puberty. What is particularly worrying is that, at the end of this treatment, the trial has so many flaws that it is bound to be disputed, whatever the result.
To give this treatment, the lead clinician will need to think that there is a reasonable prospect of a patient benefiting from puberty blockers. Given all that has been said, how can any clinician believe that that is the case? I hope we can all agree that we do not need a clinical trial to know that helping a child to be at peace with themselves and their body is infinitely preferable to a lifetime of harmful medical intervention.
(4 months, 2 weeks ago)
Westminster HallWestminster Hall is an alternative Chamber for MPs to hold debates, named after the adjoining Westminster Hall.
Each debate is chaired by an MP from the Panel of Chairs, rather than the Speaker or Deputy Speaker. A Government Minister will give the final speech, and no votes may be called on the debate topic.
This information is provided by Parallel Parliament and does not comprise part of the offical record
It is a pleasure to serve under your chairmanship, Sir Alec. I declare an interest as an NHS consultant paediatrician and a member of the Royal College of Paediatrics and Child Health. I congratulate the Minister on her new role. It is a very important role in the Government, and I know that she will do it with great care and thoughtfulness.
I congratulate the hon. Member for North Ayrshire and Arran (Irene Campbell) on introducing this important debate. I also give condolences to Lyla’s family and commend them on their bravery and their courage. I pay tribute to their work to prevent the same tragedy from happening to other families.
When one becomes a doctor, one gets trained in resuscitation. Many people are familiar with the resuscitation ABC—“airway, breathing, circulation”—but the full version is ABCDEFG: “airway, breathing, circulation, don’t ever forget glucose.” Sadly, some people do, as we have heard today. Every doctor is taught the signs of diabetes mellitus, what to look for and when to test sugar. I am hesitant to legislate medical guidance, because that still requires the awareness of the guidance’s existence. Changing the guidance in law instead of simply in practice may also reduce flexibility as evidence-based judgment comes to the fore. What is the Minister doing to increase awareness among doctors and wider clinical teams, as well as families and the wider public, so that we do not see cases of tragedy and near misses like those that we have heard about today?
Diabetes type 1 can present at any age, but it commonly presents in primary school and the early years of secondary school. Detection before it develops is challenging, and presentation is often very acute in children. It is an autoimmune condition, so antibodies are developed by the insulin-producing cells in the pancreas, creating a deficiency in insulin, which is the cause of the illness.
The ELSA study, which has been mentioned, is looking at how we can detect that before a child becomes sick. It will look at 70,000 children. It starts with a simple finger-prick test, similar to that for sugar. It tests for three antibodies; if the person has any of those, they get a second test for four antibodies. We know that if they have two or more of those antibodies, their chance of becoming diabetic in the next 10 years is 75%. We also know that a medication called teplizumab, which was licensed in August 2025 for children over eight years old, may be able to prolong that time. There may be opportunities for further awareness and investigation for early diagnosis, but also for further drugs to be developed, which can delay the onset of diabetes in people who are susceptible to it. The analysis for the first 17,000 patients showed that 75 children had one antibody and 160 had two antibodies.
One of the challenges is determining the best age to test. When did these antibodies develop? What do they develop in response to? Does the test need repeating? If so, how often? I commend my hon. Friend the Member for South Northamptonshire (Sarah Bool) for her ten-minute rule Bill, which will provide leadership on those very important questions.
I also want to ask the Minister about diabetes treatment. For those who are diabetic, blood sugar control is a lifelong preoccupation, as my hon. Friend described. This is not just about the short-term risks of hypoglycaemia and diabetic ketoacidosis, although those are serious enough; the long-term complications from poor diabetic control include heart failure, strokes, amputation and blindness. The latest report from the Royal College of Paediatrics and Child Health showed that there were 33,437 children in England with diabetes mellitus, of whom 93.3% have type 1. These children have regular health checks, but only 66% of the over-12s receive those health checks. What is the Minister doing to increase the proportion? Haemoglobin A1c, or HbA1c, is a chronic measure of what the sugar level has been over time. It is 70.8 in black children, compared with 63.1 in white children and 63.9 in Asian children. What is the Minister’s understanding of what causes that disparity and what is she doing to improve the HbA1c in all children?
Technology can really help. The latest figures from an RCPCH study in this area, from 2023-24, show that continuous glucose monitoring of children increased from 49% to 79%, insulin pump usage increased from 45% to 56% in a year, and the use of the hybrid closed loop system increased from 15% to 36% in just one year. Such devices really improve diabetic control. What are the Government doing to increase the rollout of these technologies?
No one in this House wants to see any child become very sick or to see any family suffer the heartache that Lyla’s family have suffered. I pay tribute once again to Lyla’s family. This debate, the petition and the media reporting of this debate will all raise awareness, and I have no doubt that that will contribute to saving the life of some child somewhere in our nation. I look forward to hearing the Minister’s response on how she will increase clinician awareness and widen public awareness, improve research into screening and new treatments, improve early diagnosis, and roll out the best technologies and treatments to improve diabetic control for patients with diabetes.
(4 months, 3 weeks ago)
General CommitteesIt is a pleasure to serve under your chairmanship, Mrs Harris. The Opposition do not intend to divide the Committee on these regulations, as anything that improves trust in medicines and vaccines is important. We need to increase the uptake of vaccines; it has fallen gradually and continues to fall, and we need to reverse that.
I have a couple of technical questions. As the Minister said, the principle behind the amendment to regulation 3 of the 2012 regulations is to make prescribing pharmacists equivalent to doctors and dentists. However, regulation 3(8) currently refers to,
“another doctor or dentist…of the same…practice.”
Given that pharmacists will now also be included, should that be amended to “another doctor, dentist or pharmacist”, or “a doctor or dentist”?
Regulation 5 redefines an “occupational health vaccinator” and refers to a list in part 4 of schedule 16 to the 2012 regulations. That significantly broadens the list to include individuals such as speech and language therapists who are not accustomed to dealing with injectable medications, but appears to exclude operating department practitioners, who, as the Minister will be aware of from his practice, are used to dealing with injectable medications. Could the Minister explain the reason for removing those practitioners from the list?
Regulations 8 and 9 talk about the vaccine group direction. The patient group direction is essentially a group prescription, where a clinician signs off the circumstances in which medication—say, paracetamol —may be given by a non-prescriber. We had such a direction for the covid-19 vaccine during the pandemic. This vaccine group direction would be different, so why does the Minister feel that we need a different process to the patient group direction that is already available for vaccines, which are prescription medicines? Instead, those directions can be signed by someone who is not a clinician—such as a manager in the Department of Health or, in fact, a private company—and they do not need to have any clinical skills or qualifications at all. A clinician, or one of the people listed, must decide whether the conditions have been met, and they can then give the patient the medicine without having prescribed it.
I want to ask a couple of questions on this issue. How does that improve trust, when we have a vaccine-sceptic population and lots of material on social media, some of which is not entirely accurate? How does allowing a prescription to be written by someone with no clinical experience help with trust and those rates? Is there a plan to contract out vaccine provision to the private sector, because that is what this provision allows for? Who is ultimately responsible? Is it the non-clinician who signs the vaccine group direction? Who is the clinician ultimately responsible for the decision to give the vaccine in the event that someone has an allergic reaction or an adverse reaction of some other type?
Dr Ahmed
I am grateful to the shadow Minister for her support; she is a learned Member of this House, and I know she takes these matters extremely seriously both here and in her own clinical practice.
She raised a technical point on whether the sub-paragraph should include the word “pharmacist”, given the updating of the regulations—I am very happy to explore that further to ensure that the wording is optimal. I also want to reassure her on the point she made about the workforce; training and a governance framework will be set up by the UK Health Security Agency, which will oversee all of this. Whether it is an operating department practitioner or anyone else, there will be a basal level of training that can reassure all Members of this House, whether we are the clinician prescribing the vaccination or the citizen receiving it. This will be overseen very tightly by the UKHSA.
Before the Minister moves on, can I just ask him why ODPs appear to have been removed from the list?
Dr Ahmed
I am not clear on why they have been removed from the list. However, I certainly expect that anyone who is reasonably trained will be able to deliver vaccines in the settings that we have proposed, which include community hospitals and everywhere in between, when we need to think about hard-to-reach communities.
The shadow Minister also asked a question on vaccine group direction versus patient group direction. The primary difference is that the VGD allows for the separation of the decisions to treat and provide consent by a registered healthcare professional, which still need to exist, from the administration of the vaccine, which is then done by a separate individual. That is not possible under a PGD, so it is about separating the roles. However, I reassure her that the consent process in prescriptions is paramount, and she is right that it must continue to be if we want to invite people’s confidence in the vaccination process.
Can the Minister confirm that the vaccine group direction—unlike a patient group direction, which ultimately needs to be signed by a clinician—would not need to be signed by a clinician, and can instead be signed by a senior manager either within a company or department?
Dr Ahmed
I will clarify that for the shadow Minister, but we are both cognisant of the wider point that clinicians ultimately take responsibility for prescriptions and informed consent of the vaccination process, and that will still continue. Healthcare professionals will still be seeking consent for treatment; the VGD simply means that they can be separate to the person who is then administering the vaccine in practice. There is no suggestion that there will not be clinical oversight or governance of this process—it is quite the opposite. This provision is designed to tighten governance frameworks and make them more transparent.
As I set out at the start of the debate, the proposed amendments aim to support the ongoing development of a vaccination system that is fit for the future. They are designed to build upon the benefits that HMRs have provided to date, as well as wider lessons learned during the pandemic, including recent polio and MMR catch-up programmes. In amending these regulations, the Government are seeking to maintain important safety measures while also increasing the effectiveness of the system’s supply chains and workforce in vaccination programmes.
The science unequivocally tells us that, after clean water, vaccination is the most effective public health intervention for saving lives and promoting good health. It is therefore a solemn duty of this Government to do all we can in this space to support the health system’s ability to deliver vaccines for all those eligible and, in turn, help support vaccine uptake. Given the overall support of the proposals in the consultation, and the ongoing need to support the continued safe and effective supply, distribution and administration of vaccines both now and in future, it is our intention to make permanent the provisions discussed during the debate. I commend the draft regulations to the Committee.
Question put and agreed to.
(5 months ago)
Westminster HallWestminster Hall is an alternative Chamber for MPs to hold debates, named after the adjoining Westminster Hall.
Each debate is chaired by an MP from the Panel of Chairs, rather than the Speaker or Deputy Speaker. A Government Minister will give the final speech, and no votes may be called on the debate topic.
This information is provided by Parallel Parliament and does not comprise part of the offical record
It is a pleasure to serve under your chairmanship, Ms Vaz. I congratulate the hon. Member for Bath (Wera Hobhouse) on securing this important debate and on her work in this area.
Eating disorders are deeply complex conditions. On the surface, disordered eating can take a variety of forms, including restricting the amount or the type of food eaten; binge eating large amounts of food in a short period and then purging that food through forced vomiting; excessive exercise; and laxative misuse to avoid weight gain. Beneath that surface lay a horde of drivers, such as control, shame, anxiety, obsessive-compulsive disorder, poor body image, and mysophobia, which is also known as germophobia.
The covid pandemic provoked intense scrutiny of germs and cleanliness, took away people’s control over when they could go out and when they could see their friends, and drove their activities from the personal to the online, so it comes as no surprise that it saw a spike in eating disorder referrals. By early 2021-22, 3,400 people were treated for an eating disorder, compared with 1,900 in the same period in 2019-20.
The last Government introduced the mental health investment standard to increase mental health spending in local health systems, and it also included a pledge to increase mental health spending as a proportion of total health spending every year. With mental health accounting for over 20% of demand for health services, and a 2021 report finding that eating disorders cost the UK economy a £9.4 billion per year—
Can I ask you to speak up, please? People in the Gallery cannot hear.
I am sorry.
The last Government’s work to channel more resources into mental health could not have been more welcome. This year, 2025-26, will be the first since 2016-17 that mental health spending has not risen as a proportion of health spending. That contravention of the mental health investment standard has raised alarm bells at the Health and Social Care Committee. Can the Minister enlighten us as to why the Government have decided to break the mental health investment standard after nearly a decade of progress? Does he think the percentage is now about right? Does it concern him that some ICBs have cut funding for mental health services? How does he expect that to impact on patients suffering from eating disorders?
I am particularly concerned about the impact on children and young people, and I declare an interest as a consultant NHS paediatrician. Some 6.4% of adults have a diagnosed eating disorder, but 12.5% of 17 to 19-year-olds have been diagnosed with an eating disorder since 2023. That amounts to one in five girls in that age group—four times the prevalence in boys. What specific action is the Minister taking to improve early intervention?
The previous Government got the ball rolling on establishing mental health support teams in schools, and had reached 35% coverage by the time of the general election, with a commitment to increase that to 100% of schools and colleges in England by 2030. Does the Minister plan to build on that work? What further action is he taking to improve links between eating disorder services, schools and families to ensure a joined-up approach to accessing specialist help and early diagnosis, which, as we have heard, is critical?
The hon. Member for Didcot and Wantage (Olly Glover) spoke of the challenges of transition. As a paediatrician, I see the challenges of transitioning many paediatric and adolescent conditions between children’s and adult services, but can the Minister say what he is doing specifically for those transitioning with eating disorders?
In my role as chair of the APPG on emerging drugs and online behavioural trends, I know the effect of social media on children’s and young people’s behaviours. Researchers from University College London, who examined evidence from 50 studies in 17 countries, found that social media usage is linked to eating disorders in young people, as it viciously promotes the idea that it is essential to be thin and fit, triggering a potentially extreme preoccupation with body image, weight and shape. Those obsessions are compounded by AI content, which can depict simply unachievable so-called perfection. As the hon. Member for Bath said, there are harmful videos online, with algorithms driving that harm, and those who look at these things seeing them more and more.
I recently held a policy debating competition among year 10 and year 12 students in my constituency, where students chose the topic of debate. Many of them spoke in favour of a social media ban for children as young as 16. It is a difficult issue, and that is not a perfect solution, but having just got a new mobile phone myself, I wonder why, when someone buys a phone, it cannot be set at a fixed age that can be changed only by the adult who pays the bill. A change in the law to restrict social media for under-16s would help to reduce that problem. I am interested in the Minister’s thoughts on that.
NHS guidance on eating disorders for ICBs has been raised in the debate. The NHS has refreshed that guidance, which is welcome, but patients will feel the difference only if it is actually implemented. The Minister has confirmed that there will not be a dedicated strategy for eating disorders, and there is no mention at all of eating disorders in the 70,000-word 10-year plan. Is the Minister confident that the refreshed guidance for ICBs will be sufficient on its own to improve care for people with eating disorders and to get waiting lists down? Does he have a strategy for how it will be enforced?
We have talked about the effects on families and carers. What action is the Minister taking to engage families, carers and supportive charities in plans for care? What support is available for parents, carers and siblings?
Workforce is key to delivering this strategy. We know that waiting times for eating disorder treatment are getting worse; analysis from Beat found that, in some cases, people with eating disorders face a three-and-a-half-year delay between falling ill and starting treatment. For someone with an eating disorder, that is three and a half years deeper into the illness. As we have heard, that makes it all the more difficult to treat the patient effectively and quickly pull them out of that difficult, dark place. What steps is the Minister taking to increase workforce capacity to help treat these patients and restore some stability and normality to their lives? I feel as though I ask this question every time, but the NHS long-term workforce plan is still not with us, having been delayed from last year, so when will it be published, and what tangible action will it take to boost the NHS eating disorders service?
It is not just about hiring more staff; it is also about where we are hiring them. That is important work, but more needs to be done to build on the progress. The Healthcare Quality Improvement Partnership produced a highly detailed report about in-patient eating disorder service provision in the UK. As expected, there were blackspots for those vital services in many rural and coastal areas, such as in Lincolnshire. For adults and families in constituencies such as mine, where the closest service may be an hour’s car journey away, accessing eating disorder services is remarkably difficult. The Government have been insistent that rural and coastal areas will not be left behind on healthcare, but the blackspots tell us otherwise.
Dr Arthur
I thank the hon. Member for giving way—I have to say that she is one of my favourite Tories. Does she agree that there is a real inequality here? A one-hour car drive is a challenge, but if someone does not have a car, it is even more difficult. If they have a child, they might have to take a day off work to take them somewhere. So getting services, or capacity in the community, closer to people should absolutely be the ambition, shouldn’t it?
I completely agree. This is not just about people who have a car; for people who do not have a car and who are reliant on public transport, it can be even more difficult. People also struggle to take time off work because of the financial cost. For those who do have a car, there is also the cost of the petrol or diesel to get to the appointment. I would appreciate it if the Minister could update us on what he is doing to ensure that the neighbourhood and community slant of the three pillars of his health improvement plan are working in that regard.
As the hon. Member for Bath said, in-patient services are limited in capacity. In my paediatric practice, I have seen patients waiting on acute general paediatric wards—sometimes for several weeks—but those are really not the right place for them to be cared for. Could the Minister update us on what he is doing about increasing capacity in regional services?
I would like to speak a little about two other types of eating disorder: avoidant/restrictive food intake disorder and Prader-Willi syndrome. ARFID involves limiting the amount or variety of food consumed. It is not just picky eating. I have seen a teenager who lives on just plain pasta, nuggets and chips, and a younger boy who lives on a single flavour of one brand of milkshake and no solid food at all. That can be driven by fear and sensory and other issues. What is the Minister doing to make sure that services are available for these young children? NHS England’s refreshed eating disorder guidance recommends:
“ICBs should develop and deliver ARFID care pathways”.
What steps is the Minister taking to improve early diagnosis of ARFID, and what work will be done to train primary carers to identify it in children and adults, particularly in cases of neurodivergence?
Prader-Willi syndrome is a rare genetic disorder causing excessive appetite and overeating, which can lead to dangerous weight gain and restricted growth. Around 2,000 people live with Prader-Willi syndrome in the UK, and there is no cure. It is not mentioned in the NHS guidance, so what work is the Minister doing to ensure that people suffering from PWS have access to the care they need? What steps are we taking to expand genetic testing at birth to identify PWS and improve early access to treatment for these patients?
To sum up, mental health challenges are on the rise, and eating disorders are no exception. I urge the Minister to implement a clear approach to tackling eating disorders for adults, children and young people.
Dr Ahmed
I wholeheartedly agree. The Government are committed to ending the revolving door for many conditions—this is an exemplar, in many ways—by joining up care and the streams of information that underpin it. One of our main commitments in our 10-year health plan is to have more joined-up care, to move it from sickness to prevention and to move from hospital into community, where that join-up can happen.
This community can thrive only when it is built on a foundation of timely, effective care. That is why we are focused on reforming eating disorder services so that people can access help when they need it, not after their condition has escalated. That approach underpins the new NHS guidance for children and young people’s eating disorder services, published last month, which is clear that care should be timely, joined up and delivered as close to home as possible.
As many here know, demand for mental health support, including eating disorder services, rose sharply during the pandemic, and the rise has been sustained thereafter. Although services remain under significant pressure, as a result of the additional investment there are some green shoots in system capacity and capability to better meet rising demand and reduce the waits that hon. Members have described.
In December 2025, 83.3% of routine referrals to children and young people’s community eating disorder services and 78.8% of urgent referrals started treatment within four weeks and one week respectively. That is a marked improvement in performance, compared with the situation six months earlier. In June last year, only 72.2% of routine referrals and 63.7% of urgent referrals were seen within four weeks and one week respectively. Although those are encouraging signs, I am under no illusion: too many children and young people are still waiting far too long for support. That is exactly why further reform and delivery are needed.
The Government’s long-term approach to mental health reform is set out in the 10-year health plan, which is clear in its direction. It shifts care from hospital to community, from sickness to prevention and, of course, from analogue to digital, which will be so important when it comes to having joined-up care. I assure hon. Members that those shifts are not abstract principles, but practical changes that are already being embedded. I know that they matter deeply for people living with eating disorders, and the families and loved ones who support them.
But I recognise that plans alone do not deliver care. Delivery depends on people and having the right workforce with the right skills in the right places. That is why, on top of the workforce plan that will come to fruition in late spring or early summer, we are investing in the workforce. We are committed to providing an additional 8,500 new mental health professionals across child and adult mental health services, to cutting waiting times and to ensuring that people access treatment and support earlier than ever before.
We are also working to strengthen skills and capability across the system. NHS England has introduced comprehensive training to ensure that staff across mental and physical health services can recognise eating disorders early and respond safely and effectively. That training supports clinicians working not only in the community but in primary and, crucially, acute care settings, where I used to work. I often saw such patients on my acute general surgical receiving ward rounds. The training includes specialist programmes, including the Royal College of Psychiatrists’ eating disorders credential, expanded access to family-based therapies, cognitive behavioural therapy for eating disorders, and dedicated training on ARFID, which the hon. Member for Sleaford and North Hykeham (Dr Johnson) mentioned. That work is about giving staff the skills, confidence and, crucially, clarity they need to deliver safe, high-quality care and reduce some of the avoidable harm that we have discussed today.
I am pleased to say that funding for children and young people’s eating disorder services has increased significantly, from £46.7 million in 2017-18 to an actual spend of £106.3 million in 2024-25. With that extra funding, we have focused on enhancing the capacity of community eating disorder teams across the country, because we know that timely, effective care leads to better outcomes, supports recovery and helps to prevent conditions escalating to the point at which hospital admission becomes inevitable.
When admission is necessary, stronger community care can reduce length of stay when it is safe. We recognise the concerns that in-patient capacity remains under pressure in some parts of our country. There are reports of individuals being discharged at very low body mass due to bed availability, as the hon. Member for Bath highlighted. Discharge decisions must always be about clinical judgment and patient safety, not capacity constraints. NHS England reassures me and continues to work with providers and integrated care boards to ensure that sufficient specialist provision and safe step-down pathways will be in place.
The Minister’s speech is very interesting. He talks about an increase in capacity, much of which will require workforce. I noticed that when he mentioned the workforce plan, he said “spring or early summer”, which is a change from his previous wording, which was always “spring”. Is that a sign that it is being delayed further?
Dr Ahmed
As always, the hon. Lady reads too much into my words. I am a Scot, so for me, spring and summer sometimes mean the same thing—and indeed winter. I can reassure her that there was no subtext to that nuance earlier in my speech. We remain committed and are on track to deliver on the workforce plan.
We recognise concerns, of course, and NHS England is addressing them. Prevention must be central to how we respond to eating disorders, particularly for children and young people. That is why we are also providing £13 million to strengthen the role of mental health support teams in schools and colleges through enhancements, so that concerns about disordered eating and body image can be identified and addressed much earlier. Acting sooner improves outcomes, reduces the need for more intensive treatment later and helps to ensure that our young people get the support they need, at the right time.
We are encouraged by the progress being made, but I am under no illusions. I know that sustained improvement depends on clear, consistent expectations for high-quality care across the whole pathway. That is why, alongside the 10-year health plan, we are developing a modern service framework for severe mental illness, which I can reassure the House will include eating disorders, to help to reduce avoidable harm from them and improve outcomes for persons affected by them. However, to get it right, we need expert input across the system, so my noble Friend Baroness Merron, the Minister responsible for mental health, will be hosting a roundtable discussion with eating disorder charities, clinicians and those with lived experience, to ensure that the modern service framework delivers meaningful improvements for people with eating disorders, with lived experience at the heart of it.
We have spoken, rightly, about online safety issues as they intersect with mental illness and eating disorders. As a parent, I of course remain deeply concerned about the widespread availability online of harmful material promoting eating disorders, suicide and self-harm, which can be far too easily accessed by people, including young people, who may be vulnerable. The UK’s Online Safety Act 2023 makes platforms—including social media, search and pornography services—legally responsible for keeping people, especially children, safe online. All providers must mitigate the risks of illegal harm on their services, and all providers of services likely to be accessed by children must take steps to mitigate their risks to children, especially as regards content related to eating disorders.
(5 months ago)
Commons ChamberI declare an interest as a consultant paediatrician in the NHS. Prevention of ill health is crucial. It is particularly important in children, perhaps most especially when one is trying to prevent ill health in children caused by doctors. I have expressed concerns previously about the puberty blockers trial, as have many in both Houses. The trial has now been paused due to a Medicines and Healthcare products Regulatory Agency letter. When were Ministers first aware of that letter and when were they first aware of the concerns described within it?
The regulators are doing their job. This is a perfectly ordinary occurrence in certain research trials. As the hon. Member has made the House aware—I am sure it was already aware—the trial has been paused. We will leave the regulators and the clinicians to do their jobs to ensure that all the trials, including this one, are done in an appropriate fashion.
That is a very interesting answer. Before Christmas, the Secretary of State had confidence in an allegedly vigorous and rigorous process. Fertility preservation techniques have not deteriorated over the last few months. The ages at which children reach the Tanner stages of puberty have not changed over the last few months, but the MHRA’s view has. Why? Given that this is such a scrutinised trial, does that not call into question the MHRA’s wider competence and due diligence? Will the Minister publish the MHRA’s letter from November referred to in the more recent correspondence published on Friday?
What the hon. Member highlights is part of this rigorous process. That is what happens. Why the MHRA has changed its view is a question for the MHRA, but it is up to the MHRA to raise these issues through the process. That is why we run such trials. [Interruption.] It is an independent regulator.
(5 months, 2 weeks ago)
Westminster HallWestminster Hall is an alternative Chamber for MPs to hold debates, named after the adjoining Westminster Hall.
Each debate is chaired by an MP from the Panel of Chairs, rather than the Speaker or Deputy Speaker. A Government Minister will give the final speech, and no votes may be called on the debate topic.
This information is provided by Parallel Parliament and does not comprise part of the offical record
It is an honour to serve under your chairmanship, Dr Allin-Khan. On behalf of the Opposition, I thank the hon. Member for Chesham and Amersham (Sarah Green) for securing today’s debate. She has campaigned tirelessly on this issue, giving a voice to thousands of women who have been let down by the state. I also thank Henrietta Hughes for the Hughes report.
Thousands of pregnant women were prescribed sodium valproate between 1973 and 2017 despite growing evidence of harm. In 1972, scientists found in animal studies that it was harmful to foetuses, and in 1984, foetal valproate syndrome entered the medical literature. Studies in the 2000s highlighted the link between valproate and birth defects. I remember, as perhaps you do, Dr Allin-Khan, learning about it at medical school. Yet it was only in 2018 that the valproate pregnancy prevention programme came into force, which was too late for more than 20,000 children with entirely preventable disability.
Over 10,000 women in England were harmed by pelvic mesh. Mesh kits were issued in the 2000s to treat urinary incontinence and prolapse, despite a lack of long-term safety data. Women suffered hideous complications: mesh tearing through tissue, bleeding, infection and sexual dysfunction. Shockingly, it took until 2018 for NHS England to suspend the routine use of these implants.
I want to raise the case of a lady, now in her 30s, who had a mesh implant put in to prevent a hernia in her abdominal wall, something that is often missed from the discussions about mesh. She describes how she is unable to leave her home because there is a hole in her stomach wall where the mesh has eroded. It cannot be removed. The surgeon described it as being stuck in there like chewing gum. She described her wish for a family. She described the smell of the constant infections. She described the fear of waiting for the next infection and wondering whether the sepsis from it will kill her. Yet there seems to be no way for her to get this mesh removed.
The previous Government did not sit on their hands. The former Health Secretary, my right hon. Friend the Member for Godalming and Ash (Sir Jeremy Hunt), commissioned the independent medicines and medical devices safety review after hearing from over 700 affected people and medical stakeholders. The previous Government issued a formal apology to victims and appointed a Patient Safety Commissioner. They began to establish a network of centres to provide treatment, care and advice for those affected by the implanted mesh. I would be grateful for an update on that from the Minister, particularly in the light of the case that I described.
In 2022, the previous Government asked the new commissioner to report on options for compensating victims. Dr Henrietta Hughes did so in February 2024, a full 24 months ago, and that report set out what justice should look like for victims: an interim redress scheme and a permanent one to follow. As my right hon. Friend the Member for New Forest East (Sir Julian Lewis) said, it was a package of clear, practical steps to right the wrongs done to so many women. Yet two years on, we are no further forward.
After the 2024 election, the hon. Member for Chesham and Amersham asked the Government when they would respond to the Hughes report. The response was that the Government would consider the recommendations and meet with the commissioner. In January 2025, when asked by Baroness Ritchie of Downpatrick, the Government said they were “carefully considering” report and would provide an update “at the earliest opportunity.” In March, in this very room, a Government Minister said that recommendations were being actively considered and that a report was coming “at the earliest opportunity.” In that debate, the Minister suggested that research by Dr Rebecca Bromley was material. Can the Minister update us on that research?
In October, when the hon. Member for Rushcliffe (James Naish) asked whether funding had been allocated for redress, a Minister said that recommendations were being carefully considered and a response would come at the earliest opportunity. In December, when the shadow Secretary of State for Health and Social Care, my right hon. Friend the Member for Daventry (Stuart Andrew), asked whether financial support was forthcoming, the Government said that recommendations were—still—being carefully considered. Last month, when my hon. Friend the Member for Harrow East (Bob Blackman) asked whether funding was forthcoming, a Minister said the Government were “carefully considering” the report and an update was coming “in due course”.
What we have heard from Ministers is so frustrating. For 18 months, Members have asked what is being done, and time and again, this Labour Government have refused to give a clear answer. I note that the previous debate was responded to by the Under-Secretary of State for Health and Social Care, the hon. Member for West Lancashire (Ashley Dalton), and both she and the Under-Secretary of State for Health and Social Care, the hon. Member for Glasgow South West (Dr Ahmed), have answered questions on the matter. We have a different Minister today, and it is a delight to see her, but perhaps she can confirm which Minister takes responsibility for this issue in the Commons.
I have some further questions for the Minister. On which date did work begin on a response to the Hughes report? How many civil servants are working on the response? Have there been any conversations with the Treasury about the costs of the redress scheme? If work has been taking place, why is it invisible? If, in fact, nothing has been done, why have the Government persisted in telling Members that a response is forthcoming? Why, despite Dr Hughes visiting the Department in December, has nothing materially changed? Will the Government, as my hon. Friend the Member for North West Norfolk (James Wild) asked, make an interim payment this calendar year?
Over the weekend, the Patient Safety Commissioner told ITV:
“This is a disgraceful way that patients and families are being treated by those in power.”
She is absolutely right. The state’s No. 1 duty is to protect the public from harm, yet after inflicting harm, the state has failed to make things right. This is part of a pattern under Labour whereby systemic failings, particularly those affecting women, go unresolved. Every day that victims of mesh and valproate do not receive justice, confidence in health professionals is undermined.
We know that the Chancellor is fast running out of other people’s money, but it is wrong to balance the books on the backs of those who are suffering. Justice is the state’s duty. It is not optional. It is not something just to be carefully considered for years on end, indefinitely, while women and children suffer. The Government can respect the victims and the work of the Patient Safety Commissioner today by answering our questions, or they can continue their parade of platitudes and evasions. I look forward to the Minister’s response.
(5 months, 2 weeks ago)
Commons ChamberI thank the hon. Members for Mitcham and Morden (Dame Siobhain McDonagh) and for Witney (Charlie Maynard) for bringing forward this debate on a very important subject. The hon. Member for Mitcham and Morden talked about the people she had met who had experienced brain cancer and brain tumours. For me, this debate is about my grandfather, who sadly died of a brain tumour some years ago.
Some 12,000 people have a brain tumour diagnosed each year, and this debate is supposed to focus on how we improve the survival rates for this condition, which are very poor. It is the leading cause of cancer deaths among children and adults under 40. The five-year survival rate is poor and—unlike the rate for many other cancers over the last few years—has not really moved at all. How can we improve the survival rates for people with brain tumours? There are essentially three areas that we can look at: prevention, early diagnosis and better treatment.
On prevention, if we look on the NHS website to see how we can prevent a brain cancer or brain tumour, it talks about having a good diet and preventing obesity. These things are important, but not specific to brain cancer. It also talks about trying to avoid head injury, for example by wearing helmets. What about early diagnosis? Some people have genetic conditions, such as neurofibromatosis, Li–Fraumeni syndrome, tuberous sclerosis and Von Hippel-Lindau syndrome, that make them genetically predisposed to having tumours in their central nervous system. Those individuals can receive regular screening, which can help identify these tumours at a much earlier stage, but what about people who do not have such conditions?
I apologise, Madam Deputy Speaker, for intervening despite not being here for the beginning of the debate. My hon. Friend will know that I chair the all-party parliamentary group for acquired brain injury, and I am also president of the Lincolnshire Brain Tumour Support Group—she is right about the connection between the two. Does she think it would be advisable for those who have suffered a brain injury to be screened routinely, given the correlation between an earlier brain injury and the later advent of cancer?
My right hon. Friend invites me to speak outside my area of expertise; I am afraid I do not know the answer to that.
I will, particularly if the hon. Gentleman has an answer for my right hon. Friend.
Peter Prinsley
I cannot understand how there can be a relationship between head injury and brain tumour. Repeated injury causes some neurological conditions, particularly for footballers, whom we see getting early dementia, but I do not see a connection between head injury and brain tumour. Does the shadow Minister?
It is certainly something that I have read about. I am happy to be corrected by the hon. Gentleman if he feels that my resources are incorrect, but that was certainly one of the suggestions for how to prevent these tumours. I do not think that prevention will necessarily be the major way in which we improve the survival rate. I also do not think that it will be early diagnosis, but I would like to finish talking about that. Regular screening for people with genetic disorders can really help to identify tumours early, and the second thing that can help is access to diagnostic tests. The Conservative Government introduced community diagnostic centres across the country, which increased the number of scanners available to those who needed a scan to identify whether they had a brain tumour. This Government have said that they will double the number of scanners available. Can the Minister comment on whether they are on track with that?
We need the workforce plan, so that we have the people to perform and interpret the scans. I do not know whether the Minister has had any tips on whether the workforce plan is imminent, but can he give us a date for when it is likely to be published? It has been delayed, but it is important. We have the cancer plan, but so much of it is dependent on the workforce plan. Thirdly, opticians have a role to play. Since a South Tees project pioneered in 2015, opticians have been able, during regular eye tests, to identify people who have signs of brain tumours, and to refer them, when necessary. Encouraging people to get regular eye tests may contribute to early diagnosis.
The fourth thing that can help with early diagnosis is symptom awareness—among both the general public and healthcare professionals. I want to talk about HeadSmart, a 2011 programme about the types of symptoms that could help identify a brain tumour. It had quite significant cut-through with both healthcare professionals and the public. It halved the time for a scan, and for diagnosis of children with brain tumours. It also improved the cognition of survivors, but it did not significantly improve the survival rate. While early diagnosis helps a bit, it is very difficult—particularly in children, who are quite neuroplastic, so symptoms appear quite late. The location and type of tumour are more important in the treatment and prognosis, and there are many different types. That makes this area of medicine extremely complicated, so I think the answer is that we need better treatments.
Treatments currently include steroids, chemotherapy, radiotherapy and surgery, but there are many others with promise. Convection-enhanced delivery enables chemotherapy to be delivered across the blood-brain barrier more effectively. Many hon. Members have talked about freezing, and last month there was a debate on the topic of freezing brain tumour samples; does the Minister have an update following that debate? His colleague, the Under-Secretary of State for Health and Social Care, the hon. Member for West Lancashire (Ashley Dalton), said that she would look at the detail and report back, so I hope that he will have an update for us this evening. Gene therapy has also shown a lot of promise, and there has been talk this evening about the trial in which an adeno-associated virus is used as a vector to seek out the glioblastoma cells and use the patient’s immune system to kill the tumour cells. That trial has promise; if it works, it could lead to real improvements in treatment.
Research will be key. BioNTech’s 2023 partnership promised that there would be 10,000 patients in cancer vaccine trials by 2030, but new innovators face barriers. This is a global fight; work is going on right across the globe, and we need to make the UK’s environment one that stimulates and supports research, so that British people can have the earliest possible access to the newest treatments. At the moment, the wider economic picture for research is not great, and we have seen some researchers pull out of investments in the UK. Taxation, national insurance, employment rules and the speed of adoption by the NHS are all factors that I hope the Minister will try to improve.
The hon. Members for Edinburgh South West (Dr Arthur) and for Strangford (Jim Shannon) talked about the devolved Administrations. Could the Minister comment on how he and his team are working with those Administrations to encourage research right across the United Kingdom? I also wanted to talk about rural areas, because it is all very well encouraging trials in the UK or England, but so many of those trials are in the centre of London, or in the other big cities; it is much more difficult for people living in rural areas, such as my constituents in Sleaford and North Hykeham, to access them. Could the Minister please update the House on how he is making it easier for research to occur in rural spots?
The hon. Member for Witney summed it up perfectly when he said that ambition is important, but actions, not words, are the key. We need specific, measurable targets, not just warm words—this Government have been very good at warm words on health, but much poorer on delivery. For the sake of the one in two people who will get cancer, and all their friends and loved ones, I hope that on this occasion, there is more action, not just words.