(2 days, 15 hours ago)
Commons ChamberI start by thanking my hon. Friend the Member for Edinburgh South West (Dr Arthur) for securing this important debate. I am not sure if he is aware, but we could actually go on until about 5.30 pm, so we have hours at our disposal if we want to continue this conversation for that long. We do not want to test your patience too much, Madam Deputy Speaker, but we do not have to be too speedy. We can cover this properly and in depth.
I also must congratulate my hon. Friend on his huge achievement with the Rare Cancers Act 2026, which received Royal Assent, as he knows, on 5 March this year, with support from right across this House and in the other place. This Government are proud to have supported the Rare Cancers Act. During its parliamentary passage, it was described as “a Bill of hope”, and it does give hope to all those who face a diagnosis with a rare cancer, such as those with neuroendocrine cancer.
As set out in our national cancer plan, we will implement the Rare Cancers Act to make it easier for rare cancer patients to be contacted about clinical trials. This Act will help accelerate the clinical trials needed to deliver the most effective, cutting-edge treatments and the highest-quality care for patients facing a rare cancer diagnosis.
Since this Government took office, around 228,000 more people are getting a cancer diagnosis on time, around 40,000 more are starting treatment on time, and rates of early diagnosis are hitting record highs. Despite those vital signs of recovery, the NHS is still failing far too many cancer patients and their families. We know that improving outcomes for rare cancer patients is key to ensuring that we make the NHS fit for the future.
In February, this Government published our much-lauded national cancer plan. We now have a blueprint to shift the dial on rare and challenging cancers, including neuroendocrine cancers, underpinned by three key targets. The first is to save 320,000 more lives by 2035, ensuring that three in four people diagnosed in 2035 will be cancer free or living well with cancer after five years. Secondly, we will achieve the three cancer performance targets by the end of March 2029. Finally, we will improve the quality of life for people with cancer.
As we have heard, neuroendocrine cancer is a rare type of cancer that can develop in various organs in the body, including the pancreas, lungs and intestines. The National Disease Registration Service collects patient data on cancer, congenital anomalies and rare diseases, and provides expert analysis to support clinical teams, academics, charities and policymakers to help plan and improve treatment and healthcare in England. The NDRS understands the need for statistics on neuroendocrine neoplasms and has worked with an expert working group to identify these cases in the cancer registry data. The working group has included clinical experts and charity engagement, and the first statistics on these groupings are expected to be published as part of Get Data Out in a few months.
Furthermore, in the national cancer plan, we have committed to improving data on rare cancers to ensure transparency and to support the NHS to speed up diagnosis and treatment. To help cut cancer waiting times, we will give trusts and cancer alliances the detailed, practical information they need, from more granular data for individual cancer types to real-time pathway insights through the federated data platform. By streamlining cancer metrics, we will shine a much brighter light on unwarranted variation in care, so that issues cannot be hidden and action can be taken quickly.
Rare and less common cancers, including neuroendocrine cancers, are a priority for this Government, and this is the first ever national cancer plan with a dedicated chapter on rare cancers. We know that one of the most effective ways to improve survival from cancers, including neuroendocrine cancers, is to catch them early and treat them quickly. We know that raising awareness of symptoms is an essential part of that, which is why the NHS in England runs campaigns to increase knowledge of cancer symptoms and address barriers to acting on them. My hon. Friend mentioned the number of women who are told that it is menopause symptoms when they first present to their GPs. As a woman who has been in that position myself, I think he made a good point about how many different conditions are blamed on the menopause.
The campaigns have focused on recognising a range of symptoms, as well as on encouraging general body awareness to help people spot symptoms across a wide range of cancers at an earlier point. Cancer alliances across the country are also engaging with their local communities to deliver campaigns, community engagement and partnership activity to increase symptom knowledge and encourage people to come forward as soon as possible if they notice a change in their health.
I want to be clear that I have never had a cancer diagnosis blamed on the menopause, but there are lots of other things I might have gone to my GP about that have been blamed on the menopause. I know that my hon. Friend has done work on ovarian cancer as well—he took over the hosting of an event on ovarian cancer from me when I was made a Minister—and the symptoms of ovarian cancer are constantly blamed on irritable bowel syndrome, constipation or a bad back. It happens with so many cancers, so he made a really important point.
In addition to improving awareness of neuroendocrine cancers, we are targeting improvements to support diagnosis. The NHS in England has rolled out non-specific symptom pathways nationally, designed to speed up the diagnosis of cancer. Those pathways are intended to cover the cohort of patients who do not fit clearly into a single urgent cancer referral pathway but who are none the less at risk of being diagnosed with cancer. They benefit the detection of all cancers, including rarer cancers such as neuroendocrine cancers.
As announced in the national cancer plan earlier this year, we are prioritising access to specialist treatment and multidisciplinary teams for all patients diagnosed with rare cancers, which will ensure that patients with neuroendocrine cancer and other rare cancers benefit from the best evidence-based care. Furthermore, we have invested £70 million in 28 new LINAC—linear accelerator—radiotherapy machines to replace older, less efficient machines. Those new machines will reduce waiting times, provide 15% more treatments and enable 27,500 more patients to be treated each year. Going forward, the NHS is also harnessing the power of artificial intelligence to support oncologists to plan radiotherapy more quickly and accurately, improving contouring, reducing the risk of damage to healthy tissue and minimising complications.
We know that research and innovation are crucial to tackling cancer, which is why we remain committed to investing in cancer research. Cancer is a major area of National Institute for Health and Care Research spending, totalling £141.6 million in 2024-25, which reflects its high priority. The NIHR supports research into neuroendocrine cancers, spanning research to better understand and diagnose them through to research to advance treatment options for patients. Between 2020-21 and 2024-25, the NIHR has committed £3.5 million to new research projects, alongside supporting infrastructure, into neuroendocrine cancer.
Activity is under way through the NIHR James Lind Alliance, in partnership with the UK and Ireland Neuroendocrine Tumour Society and Neuroendocrine Cancer UK, to identify priority research questions regarding neuroendocrine cancer care and treatment. That will ensure that future research focuses on the areas that matter most to patients, families and clinicians. Our research investments have the potential to shift the dial and position the UK as a leading location for cancer research.
As set out in our 10-year health plan, we will make the UK a global leader in clinical research. Clinical research is one of the most powerful tools we have to improve healthcare. It helps us prevent, diagnose and treat cancer more effectively. Our vision is to embed research across the NHS, giving patients greater choice and control over their healthcare. To hold us accountable across these commitments and drive forward progress for rare cancer patients, we will appoint a national clinical lead for rare cancers, who will provide independent advice on improving outcomes.
The actions I have listed make up just a small part of our plan, which will turn cancer from one of the biggest killers into a chronic condition that is treatable. That will fulfil our desire to improve outcomes for all cancer patients, including neuroendocrine cancer patients.
In closing, I once again thank my hon. Friend the Member for Edinburgh South West for securing this important debate. It looks like we are going to finish early after all, but I do not want anybody to think that that is through lack of interest in this important topic. It is Thursday, and Members have their constituencies to get back to, so I will not delay the House any further. I thank my hon. Friend for all the work he does on rare cancers.
Question put and agreed to.
(4 days, 15 hours ago)
Commons ChamberThank you, Mr Speaker.
Embedding Healthy Babies services in a system that prioritises prevention is central to this Government’s ambition to raise the healthiest generation of children ever. We are starting by investing £200 million to maintain Healthy Babies services in 75 local authorities with high levels of deprivation, and we will deliver the 10-year health plan ambition to roll out Healthy Babies nationally over the next 10 years.
John Whitby
Sure Start delivered long-term health benefits, with the Institute for Fiscal Studies finding that it reduced the number of hospitalisations of young people with mental health-related causes by 50%. It is therefore appropriate for the Department of Health and Social Care to support our Best Start family hubs. Healthy Babies funding enables that and ensures that family hubs can deliver sessions on topics such as parent and infant relationships. Will the Minister confirm when Derbyshire will be able to benefit from Healthy Babies funding?
Despite the huge success of Sure Start, which my hon. Friend details, the Tory-Lib Dem Government disastrously cut Sure Start centres, leaving parents and babies without any support. That is why this Government are investing £200 million as part of an almost £1 billion package for Best Start family hubs and Healthy Babies. This funding will help all areas to integrate neighbourhood-based health services in hubs, and it will roll out to his area during the next decade.
May I welcome the Minister to her new post? The Government’s support for Healthy Babies is very welcome, but the best way to keep babies who have type 1 spinal muscular atrophy healthy and help them to lead normal lives is by screening them at birth, because they can then access transformative gene therapy. My constituent little Charlie, who will soon be two, would be walking now instead of learning to use a wheelchair if he had been diagnosed at birth through screening, rather than when he was a few months old. Will the Minister consider adding SMA type 1 screening to the newborn screening schedule?
I thank the hon. Lady for her good wishes. She may be aware that on 19 January, the Secretary of State met Jesy Nelson and Giles Lomax, the CEO of the charity SMA UK, to discuss the very issue of newborn screening for SMA. The NHS is planning an in-service evaluation offering SMA screening to newborn babies in England. The ISE is being brought forward to October 2026—it was originally planned for January 2027—so there will be more information to follow in October.
Tom Rutland (East Worthing and Shoreham) (Lab)
Ms Polly Billington (East Thanet) (Lab)
We are backing cancer patients with a plan to end the postcode lottery that was baked in by the previous Tory Government due to chronic underfunding. We have already announced that more cancer specialists will be allocated to rural and coastal areas, increasing capacity where it is most needed. Over the past year, around 39,000 more people started their cancer treatment within 62 days, compared with the 12 months prior to the 2024 election.
Dan Aldridge
Weston-super-Mare is a growing, thriving town with a population comparable to the city of Bath, yet cancer patients regularly make a round trip of 90 minutes by car or more than three hours by public transport to Bristol to get their treatment. After his own difficult battle with cancer, my constituent John Kiely is leading an inspiring campaign to finally bring a radiotherapy machine to Weston general hospital. A feasibility study is under way, so can Ministers outline how we can secure the support that we need to make his campaign a reality and improve the treatment experience for my constituents?
Too many patients experience issues in accessing radiotherapy treatment, and I am sorry to hear about the experience of my hon. Friend’s constituent, John Kiely. We are determined to change that. After the previous Government’s chronic underfunding, this Government have invested £70 million of central funding on 28 new radiotherapy machines across the country to replace the older, less efficient machines. Providers have been allocated £15 billion in operational capital for local priorities and £5 billion to support a return to constitutional standards on waiting times. We expect local systems to use that capital to deliver further investment, and I encourage my hon. Friend to meet his local ICB to discuss this issue.
Ms Billington
I welcome my hon. Friend to her place and congratulate her on her appointment. I noticed in the cancer plan the commitment to fill NHS workforce gaps in coastal towns such as mine—Margate, Broadstairs and Ramsgate—and to end the postcode lottery that means many patients in coastal communities are missing out on the best possible cancer care. Can my hon. Friend update the House on progress in closing workforce gaps in coastal areas?
I commend my hon. Friend on her great work campaigning for her coastal community in East Thanet. The national cancer plan sets out how we will make sure that everyone has timely access to high-quality diagnostic and treatment services by increasing medical training places in rural and coastal areas. The national cancer plan will save 320,000 lives over the next decade and deliver the fastest improvement in cancer survival in UK history.
Seamus Logan (Aberdeenshire North and Moray East) (SNP)
Cancer patients, like so many other patients, are worried and concerned about the resident doctors strike in England, which is reportedly costing around £50 million a day, not to mention its impact on waiting lists. Meanwhile, in Scotland, we have a Health Secretary and a Government who are competent in negotiations and have none of this industrial action. The final bill for this industrial relations shambles could be as high as £3 billion. What can the Secretary of State reveal to the House about the special skills he has in dealing with the BMA?
Patients are 30 times more likely to wait two years for care in Scotland than in England. Labour has ended austerity and provided Scotland with the biggest funding increase since devolution. The question is: where has the money gone?
May I pursue the point about coastal communities and cancer care? A young dad in Withernsea, a coastal town in my east Yorkshire constituency, went to the doctor repeatedly saying that there was something wrong with him and was repeatedly told that he was fine, before being diagnosed with stage 4 cancer. He survived, but only just. What, in real terms, will happen to ensure that communities such as those in Withernsea can see decent cancer care and proper diagnosis, especially given that, as was pointed out by my right hon. Friend the Member for Goole and Pocklington (David Davis), Hull university teaching hospitals NHS trust is one of the worst-performing trusts in the country?
The national cancer plan is a key part of our work to build an NHS fit for the future, and it explains how we will make England a world leader in cancer outcomes. The right hon. Gentleman’s constituents will now be able to see a GP much sooner than they could before the 2024 election, which will ensure that they can get that earlier diagnosis, which is the only thing that will help them to survive and live longer.
I 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.
No, it wasn’t—not at all.
Unlike the Conservative party, we trust our GPs. This will be consultant-led advice and guidance, on which GPs will then decide.
Matt Bishop (Forest of Dean) (Lab)
Daniel Francis (Bexleyheath and Crayford) (Lab)
My constituent Harley Harris is 15. He has spondylocarpotarsal synostosis syndrome, which has caused his spine to curve 120° and damaged his lungs, leaving him with significantly reduced lung function and in continual pain. Harley needs lifesaving surgery, but his family have been unable to get a referral to have it performed in the UK. Will the Minister commit to urgently reviewing Harley’s case to ascertain what support can be provided to him and his family?
I am very sorry to hear about Harley’s condition, and my thoughts are with him and his family. I am sure my hon. Friend understands that neither the Department nor NHS England can comment on the clinical appropriateness of suggested treatments for an individual. I understand that Harley and his family have already been in touch with the Department, and would suggest that my hon. Friend continues to raise this case with NHS England. We are committed to improving the lives of those living with rare diseases, including Harley’s condition of SCTS.
In 2022, Grantham saw the opening of one of the country’s first community diagnostic centres; since then, more than 100,000 tests have been completed for the local population. Now, I want the same for the town of Bourne. Will the Minister meet me, so that I can make the case for a new community diagnostic centre in Bourne?
(5 days, 15 hours ago)
Commons ChamberI thank my hon. Friend the Member for Mansfield (Steve Yemm) for securing this very important debate, which, as we heard, is taking place during Teenage and Young Adult Cancer Awareness Month. I thank him for his very important work on the all-party parliamentary group on cancer in children and young people, as well as for his role as a parliamentary champion for the Teenage Cancer Trust. I am grateful to him for the invitation he has just made for me to visit a Teenage Cancer Trust unit, which I would be very pleased to accept. I pay tribute to some of the fantastic charities that he and I have both worked with: Teenage Cancer Trust, Young Lives vs Cancer and Children with Cancer UK, to name just a few. They supported us to write the national cancer plan. Now that the plan is published, they will play a vital role in its delivery.
Cancer remains a leading cause of death for young people under the age of fourteen. I cannot begin to imagine what it must be like for those children and young people, who have their whole life ahead of them, to hear the words, “You have cancer,” not to mention those mums and dads who go through the nightmare of seeing their child suffer. It is true that 78% of children with cancer aged between eight and 15 said they were “very well looked after” by the NHS, but I will not be satisfied until that number reaches 100%. There are so many areas where we must do better, particularly when it comes to patient experience. My hon. Friend laid out clearly in his opening remarks what some of those areas are, so I will go through them one at a time.
Thanks to my excellent predecessor, my hon. Friend the Member for West Lancashire (Ashley Dalton), we now have a plan that includes a dedicated chapter on children and young people setting out how the Government will address their unique needs. We will begin to shift the dial on detecting, diagnosing and treating cancers in young people, and we will continue to listen to young people and their families, through our patient experience panel, to ensure that lived experience sits at the heart of everything we do.
Chris Bloore
I thank my hon. Friend for giving way. I congratulate my hon. Friend the Member for Mansfield (Steve Yemm) on securing this important debate; he has been a champion on this issue since he came to this place. The Minister mentioned patient experience. One issue that has been brought to my attention in my surgeries is that, after the often intensive clinical process of a young person going through a cancer diagnosis, getting treatment and getting through the other side, the period after the all-clear is an intense time of social isolation. Significant mental health support is required to get them back and integrated into school, college or work. Would she be prepared to meet me and young people who have been through that experience to discuss how we can improve the system, so that they can integrate back into normal life as quickly and as efficiently as possible?
I thank my hon. Friend for that important intervention. I will also commit to meeting him and the young people he mentions, perhaps in co-ordination with my visit to the Teenage Cancer Trust. I hope there will be plenty of opportunity to meet young people during that visit. It is a yes to both of those requests.
We heard from the children and young people cancer taskforce how many parents have been forced to cut back on food and other expenses to pay for the travel to treatment. When a child is diagnosed with cancer, their family’s only focus should be on helping them to recover and getting them well, not on whether they can afford the petrol or the bus fare to get to their next appointment. That is why, through the plan, we are investing up to £10 million a year to support families with travel costs. This fund will make the world of difference to parents. It does not matter what someone earns; if their child needs treatment, we will help to get them there.
We are also transforming the experience of care in hospital by making sure that every child and young person with cancer has access to high-quality, age-appropriate psychological support, which my hon. Friends the Members for Mansfield and for Redditch (Chris Bloore) both asked about. That support should be from diagnosis, through treatment and beyond; I will take on board the request of my hon. Friend the Member for Mansfield for that support to last up to two years post treatment. He spoke about the importance of early referrals to teenage and young adult multidisciplinary teams, with youth support co-ordinators on hand to help young people to navigate the huge journey they are going to have to go on, with the emotional impact of cancer alongside challenges around education, perhaps fertility and their long-term wellbeing.
The Government are committed to diagnosing cancer in children and young people faster to ensure that they get the treatment and care they need as soon as possible. As my hon. Friend set out in his speech, this speed is of the utmost importance, so we will remove the barriers that stand in the way of timely diagnosis by making sure that young people’s needs are embedded into the design of neighbourhood health services.
Just before recess, the Minister for Care announced the first 27 of 250 one-stop health shops that will be up and running next year, with 120 planned by the end of this Parliament. These offer a new model of care, as set out in our 10-year plan for health, with better access to specialist support and the safe roll-out of AI.
Many colleagues—not least my hon. Friend the Member for Mitcham and Morden (Dame Siobhain McDonagh)—have been pushing the Government for a long time to go further on research, which is why we are making research into improving outcomes for children, especially into kinder and more gentle treatments, a national research priority. The Department will take a more joined-up approach to research priorities using data, as my hon. Friend the Member for Mansfield urged us to do, so that efforts are focused where they can make the greatest difference. We will break down the barriers that prevent young people from accessing clinical trials, particularly those who do not often qualify for paediatric or adult trials, by requiring clinical justifications for age limits, while also strengthening data collection across the cancer pathway.
In the next few months, the Department will establish a reformed national cancer board, once a co-chair has been appointed to oversee and monitor the implementation of our cancer plan. The board will include a dedicated lead for children and young people’s cancer, ensuring that this work is driven forward with clear accountability and focus. They will make sure that we are staying on track. I know that my hon. Friend the Member for Mansfield will play his part in that too.
The Government believe that all children and young people, no matter their circumstances, deserve support to achieve the very best outcomes in life, but most importantly to live fulfilling and happy lives. Alongside our work on cancer, we are combating the drivers of ill health in children’s lives such as poor diet, damp homes, dirty air and a lack of opportunity. We have abolished the two-child benefit cap, taking half a million children out of destitution, shame and hunger. We have brought in free breakfast clubs and extended free school meals so that kids start school with hungry minds, not hungry bellies. We also introduced the soft drinks industry levy, a warm home discount scheme that reaches millions more, and a generational ban on smoking. Awaab’s law will cut pollution and clean up the air that our children breathe.
This year, I am determined to do everything I can for children and young people with cancer. I have my foot on the accelerator, and I look forward to working closely with my hon. Friend in the months ahead on this work.
Question put and agreed to.
(3 weeks, 2 days 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 Furniss. I thank my hon. Friend the Member for Cannock Chase (Josh Newbury) for securing this very important debate and for his excellent opening speech, in which he took great care to set the scene for us. I appreciate that.
My hon. Friend has been instrumental in bringing national attention to the challenges faced by people living with Ehlers-Danlos syndrome and craniocervical instability. Last year my predecessor in my role, my hon. Friend the Member for West Lancashire (Ashley Dalton), met him and his constituent, Connor Edwards, who has suffered greatly, as we have heard, from the impact of these devastating conditions. Connor has faced immense physical and emotional hardship as he has tried to navigate symptoms linked to EDS and CCI, enduring pain, uncertainty and long waits for answers, as we have heard. His experience reflects what too many patients and families have told us: that the system can feel fragmented, that they are often left to join up their own care, and that the lack of clear pathways can add to an already overwhelming burden. I want to assure Connor and others in his position that their voices have been heard.
I thank the hon. Member for Cannock Chase (Josh Newbury) for securing this important debate. I apologise, Ms Furniss, that I was not in the Chamber for the beginning of it; my shadow ministerial role in relation to the Department for Environment, Food and Rural Affairs meant that I had to be in the main Chamber at the start of this debate.
Will the Minister join me in paying tribute to patients with Ehlers-Danlos syndrome and craniocervical instability—including my constituent in Epping Forest, Natasha Little—for their bravery and their advocacy in calling for the Government and the NHS to recognise the needs of people with these conditions, in terms of diagnosis, treatment and long-term support? Hopefully, this debate can be a catalyst for change.
I thank the hon. Gentleman on behalf of his constituent, Natasha, and I will make sure that I include her name later when I come on to name everyone referred to during the debate. I also thank him for managing to juggle and spin all the plates that we have to deal with as Members by making time to come along to this debate.
I also thank all the other hon. Members who managed to make it to this very important debate. We heard contributions from my hon. Friends the Members for Hitchin (Alistair Strathern), for Glasgow West (Patricia Ferguson), for West Dunbartonshire (Douglas McAllister), and for Stratford and Bow (Uma Kumaran); from my right hon. Friend the Member for Hayes and Harlington (John McDonnell); from my hon. Friend the Member for Truro and Falmouth (Jayne Kirkham); from the hon. Members for Strangford (Jim Shannon) and for Ashfield (Lee Anderson); from my hon. Friend the Member for Blaydon and Consett (Liz Twist); from the hon. Member for Tiverton and Minehead (Rachel Gilmour); from my hon. Friend the Member for Bury St Edmunds and Stowmarket (Peter Prinsley); from the hon. Members for Winchester (Dr Chambers) and for Epping Forest (Dr Hudson); and from the spokesperson for the Conservatives, the hon. Member for Fylde (Mr Snowden).
I also thank the hon. Member for Fylde for sharing his learnings from the experience of his sister, Kimberley, on her journey in treatment for epilepsy. As he explained, epilepsy is a well-known condition, especially in comparison with the conditions that we are discussing today. That was a very strong point, which I thank him for making.
I will not repeat the detailed clinical descriptions of Ehlers-Danlos syndrome and craniocervical instability that other hon. Members have already set out very clearly, but I do want to recognise the real and often profound challenges that people living with these conditions, and their families, face every day. I want those individuals to know that I hear them, and that I recognise the challenges they face and the uncertainty and distress that many describe. Their experiences will shape the Department’s ongoing work as we consider how services can better meet the needs of people living with these complex conditions.
NHS England continues to strengthen clinically led pathways for people with hypermobility-related disorders, with an emphasis on non-surgical management, co-ordinated physiotherapy, and pain management and rehabilitation, as is consistent with the best available evidence.
In response to the question from the hon. Member for Strangford about the number of people affected by these conditions, the Getting It Right First Time programme is supporting more consistent assessment and management of complex joint and spine conditions, and assessment of the number of people affected, helping to reduce the unwarranted variation in treatment that particularly affects people with EDS. The programme has a strong emphasis on robust, evidence-based and personalised pathways. Through RightCare, integrated care systems are supported to commission evidence-based pathways for long-term and complex conditions, including improved access to community-based musculoskeletal care, which many people with EDS rely upon.
My hon. Friend the Member for Blaydon and Consett mentioned some numbers in her contribution, quoting a ratio of one in 250 and saying that between 1% and 4% of the population are affected. I would imagine that those are the ballpark figures, but the Getting It Right First Time and RightCare programmes, which I have just mentioned, will look into that in more detail.
How can we facilitate better care and support? We need better clinical education, clearer referral routes and a stronger emphasis on shared decision making. We also need to recognise the burden of chronic pain and fatigue that comes with these conditions, and ensure that people can access appropriate services, even when a definitive single diagnosis may still be evolving. Where the evidence is established, the NHS should provide timely, appropriate care. Where evidence is uncertain, we have a responsibility to be transparent about what is known, what is not known and what options are supported by clinical consensus.
Patient safety must always be paramount, and decisions about invasive treatments must be made within appropriate specialist teams, with robust clinical governance, multidisciplinary review and clear plans to follow up. EDS illustrates why integrated care matters. Pathways must connect primary care, community therapy services and specialist support so that patients do not have to tell their story over and over again, or navigate multiple disconnected services.
Stronger evidence is also imperative. The Government support health research through the National Institute for Health and Care Research, and we want to see well-designed studies that can inform future guidance and reduce unwarranted variation.
Josh Newbury
One thing that we have come across consistently is that a huge amount of research has been done internationally and, as many hon. Members have outlined, constituents are funding themselves to go abroad for treatment and surgery. As part of that work with the NIHR, would the Minister be willing to look at international best practice in this area, so that we can draw on the experiences of many other countries as they work out how best to treat this group of patients?
I am happy to recommend that international best practice is looked at, and I will take that on board. I will also come to the suggestion from my hon. Friend the Member for Blaydon and Consett about the international best practice that we can learn from in Wales.
Guidance matters too, and clinical guidelines and service specifications help reduce variation and improve quality. My hon. Friend the Member for Blaydon and Consett asked about NICE guidance. Where NICE guidance exists, the NHS is expected to take it into account, and where it does not, we should consider what other guidance can support clinicians and patients in the interim. I commit to asking the NICE prioritisation board, chaired by its chief medical officer, if it will look at the Wales pathways that she suggested when it considers updating NICE guidance.
My hon. Friend also asked about multidisciplinary teams. NHS England, along with the neurosurgery and spinal surgery clinical reference group, has not currently identified a need for an MDT. NHS England has established clinical networks for spinal surgery and neurosurgery, and we expect those networks to work closely to ensure that both cranial and spinal pathways are optimised.
I was also asked about a pathway by my hon. Friend the Member for Truro and Falmouth. There is currently no separate national diagnostic or treatment pathway for CCI because it is not recognised as a distinct NHS diagnosis, and there is no agreed national definition, validated imaging criteria or robust evidence base to support creating one. However, the Department recognises the concerns that patients have raised, and we are working with NHS England, clinical networks and patients’ organisations to improve pathway consistency by strengthening the existing framework, so we will look further into that.
Jayne Kirkham
I understand that the Department will be looking at it further, but will it be looking at it further with the intention to create a pathway for CCI?
Yes, I would imagine that if the Department looks at it and it is deemed necessary, that is what will happen. I am sure that my hon. Friend can follow up on that as time progresses.
I will cover the last couple of questions from hon. Members. My hon. Friend the Member for Truro and Falmouth, the hon. Member for Ashfield and my hon. Friend the Member for Stratford and Bow made points about access to care and ensuring that people do not fall through the cracks. EDS and CCI often require input from rheumatology, neurology, pain services, physiotherapy, genetics and primary care, and the 10-year health plan’s emphasis on integrated multidisciplinary care models will help to join up those pathways for the first time. That will reduce repeat referrals and conflicting advice, and patients feeling that they must be the ones to join up the system. We will hopefully see progress on that through the 10-year plan.
The hon. Member for Ashfield also asked about wheelchair services. In England, they are commissioned locally by ICBs and eligibility is determined by functional need, lifestyle and clinical assessment, not by whether a patient has a specific condition such as EDS or CCI. NHS England has developed a model service specification for wheelchair and posture services that sets clear expectations for timely assessment, appropriate prescribing and user-centred provision. That specification enables commissioners to organise consistent, high-quality services that meet individual mobility needs, including those arising from complex conditions such as EDS and CCI, so I was keen to give the hon. Member an answer to that particular question.
The 10-year health plan sets a clear direction for improving outcomes for people with EDS and those experiencing symptoms associated with CCI. The plan prioritises earlier diagnosis, better co-ordinated care and stronger multidisciplinary working across primary, community and specialist services, which are key issues consistently raised by patients and families. It promotes integrated, personalised support closer to home, reducing the burden of navigating multiple services. The plan also expands the use of digital tools, remote monitoring and personalised care planning to help people manage complex, fluctuating symptoms more effectively. Importantly, it commits to strengthening research, clinical education and system-wide awareness of overlapping, multi-system conditions, helping to ensure that people with EDS and CCI receive more consistent, compassionate and joined-up care.
Let me clear about what I can commit to as the Minister today. I will ensure that the concerns that have been raised are shared with NHS England to help identify where guidance, pathways, referral routes or clinical advice could be clearer and where good practice is already emerging internationally—as well as in Wales—that could be spread more consistently. Meaningful engagement with those directly affected must sit at the heart of our approach. Departmental officials are already in discussions with patient groups, and that ongoing engagement will be invaluable in shaping our understanding and ensuring that future policy is grounded in the reality of patients’ lives.
We will be asking the NIHR to consider how best to encourage further quality research in this area. It is already expanding its work on conditions with overlapping symptom profiles, including myalgic encephalomyelitis and chronic fatigue syndrome, and post-viral syndromes, and we want to ensure that future research programmes recognise the clear need for better evidence on diagnosis, management and outcomes for people with EDS and suspected CCI. I commit to continuing to press for a culture that is compassionate and evidence-based—one that listens to patients, avoids dismissal and false certainty, and supports shared decision-making.
Josh Newbury
I thank the Minister for her words, but I would add one point to her list, if I may, which is aftercare for people who have travelled abroad to have surgery. I understand that that is a tricky issue for the NHS, but we have heard consistently from several hon. Members today that their constituents have been rejected for any meaningful aftercare once they have come home, despite having a clear clinical need for it. Could she add that to her list to take back her officials?
I will commit to looking into that for my hon. Friend. Obviously, aftercare for surgery abroad is tricky—not for conditions such as this, but often for beauty related purposes—but I will take that on board and take it back to the Department.
I apologise if I missed the answer, but I asked about research and how we can create partnerships with universities, which are very keen to do that—Queen’s University Belfast is one example, but there are many others across the United Kingdom—and with medical companies that want to pursue cures, as we all want to see them do. The Minister may not have an answer today, but I would be very happy if she would come back to me, and to all of us, to show that we are pursuing that research opportunity to find the cure and help people if we can.
I did touch on research, but I did not specifically mention universities. I am pleased that the hon. Member got in another plug for the wonderful Queen’s University Belfast—he did that when we were in this Chamber the other day—and I will take his point on board. I thank him for that.
In closing, I return to the people at the heart of this debate: those living with EDS and CCI. Connor, Jo, Rebekah, Carley, Hannah, Stevie and Natasha have been named by their MPs today. They and their testimonies, as we have heard, are just examples of the many more people across the UK and Northern Ireland suffering from these terrible conditions. They are not asking for miracles; they are asking for clarity, consistency, safe care and to be treated with respect. They are asking for a system that joins up around them, rather than leaving them to piece it together alone. That is a reasonable ask, and one that we should meet.
Again, I thank my hon. Friend the Member for Cannock Chase for securing this very important debate. I look forward to working with NHS partners, clinicians and patient groups to ensure that people living with these complex conditions receive the timely, safe and compassionate support and care that they deserve.
I call Josh Newbury, with two minutes to wind up.
(3 weeks, 3 days ago)
Written StatementsI am today announcing the publication of the new pandemic preparedness strategy, outlining the UK Government plan for improving our pandemic preparedness capabilities between now and 2030.
The covid-19 pandemic was the most significant crisis that we have faced in generations. It touched every aspect of our lives, and its impacts continue to be felt across our communities. It showed that a future pandemic is one of the most profound threats to our society.
The UK is already a world leader in life sciences. Building on our strengths and the huge amount of work that has taken place since the pandemic to improve preparedness, the 2025 UK Government resilience action plan set out a new national approach to resilience, based on continuous assessment of readiness and mobilising the whole of society.
This strategy, which is backed by investment of around £1 billion for health protection during the current spending review period, is a demonstration of our resolve to protect the health of our nation, safeguard our economy and minimise the unequal impacts that pandemics can bring. It sets out the improvements that we will make to our health system response capabilities, and how they underpin a whole-of-Government and whole-of-society approach. It builds on the lessons identified from the covid-19 pandemic and is shaped by the findings of the UK covid-19 inquiry and indicative findings from Exercise Pegasus, the largest non-military exercise ever to take place in the UK. The exercise tested the Government’s ability to respond quickly and effectively during a prolonged crisis, with a full report to be published in the winter of 2026.
The covid-19 pandemic demonstrated the crucial importance of Governments across the UK working together while also respecting, and taking full account of, devolved areas of responsibility.
In support of a joined-up approach to preparedness, all four nations endorse the principles of preparedness set out in the strategy, while individual nations will have their own plans to implement their preparedness.
These principles include protecting those most at risk, with Governments committing to tailoring their capabilities to protect all communities and aiming to deliver an effective and equitable response to pandemics.
The strategy contains commitments across a number of areas that outline how the UK Government will improve pandemic preparedness, many of which have been informed and shaped by the initial findings of Exercise Pegasus. They include to:
Take a dynamic approach to ensure access to vaccines and therapeutics, and address the perceived barriers to the development of novel vaccines and therapeutics for priority pathogens.
Develop the ability to rapidly develop diagnostics for a broad range of pathogens, with scaled up in-house capacity for laboratory testing and whole genome sequencing.
Develop UK manufacturing capacity for vaccines, therapeutics and diagnostics.
Further strengthen surveillance systems to be comprehensive, activation-ready and drawing on diverse sample groups across settings and communities, so that we can detect threats, understand disease spread and enable the analytical capability to act effectively and equitably.
Replenish PPE stockpiles, refine plans for mobilising and distributing PPE, and prepare a cross-Government model for procuring and prioritising the distribution of PPE to critical workers in a pandemic.
Strengthen Government co-ordination mechanisms, drawing from early findings of Exercise Pegasus, including through regularly reviewing and exercising response plans. Guidance will be put in place for local responders.
Publish evidence reviews on the effectiveness of community protection measures and build a suite of measures to support decision making and prioritisation.
Expand communication channels for and improve our understanding of how to make communications relevant to different communities, and strengthen guidance provided to different sectors.
Review the data capabilities needed to support decision-making and evaluate the impacts of pandemic response measures, and enhance data sharing capabilities to enable faster and more transparent information sharing between organisations and with the public in a pandemic.
Co-develop an adult social care pandemic action plan to respond to future threats with sector partners. As part of this, we will focus on how best to support the wellbeing of those with care and support needs and how to improve the resilience and preparedness of the adult social care workforce.
Strengthen the flexibility and resilience of the healthcare workforce, improve the NHS baseline capabilities to manage infections, and develop plans to minimise the risk of cross-contamination across services and maintain continuity of routine care during pandemics.
By integrating our health, security and scientific capabilities, we will protect the NHS, safeguard our economy and save lives.
[HCWS1458]
(3 weeks, 4 days 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, Mr Dowd. I congratulate my hon. Friend the Member for Ipswich (Jack Abbott) on securing this very important debate. I am honoured to respond to it on behalf of my hon. Friend the Minister for Secondary Care, who unfortunately cannot be here today—this area of policy would normally fall under her portfolio.
I want to start by thanking Monica for sharing her story with us today through her MP and—as we heard—friend, and for being with us today in the Public Gallery, along with a large number of women who are suffering from this most painful and debilitating condition. Monica’s distressing experience highlights that we still have more work to do to ensure that all women with endometriosis can access the care they need.
As we have heard, for too many years women with endometriosis have felt unheard or dismissed and have been left to cope alone. We recognise the wide impact the condition has on education, work, family life and wellbeing, as well as on mental health, as the hon. Member for Eastleigh (Liz Jarvis) said, and we acknowledge that that is unacceptable.
This year’s Endometriosis Awareness Month theme is “endometriosis doesn’t wait”. That highlights the urgent need to reduce diagnosis times, improve care and address the impact of this debilitating condition. The Government are not waiting: we have already taken action to ensure that women with endometriosis have access to the services that they need. Many women spend years seeking answers, as we have heard today, being misdiagnosed, having symptoms minimised or being passed from service to service. The experience highlighted by all hon. Members who have spoken in the debate and by Endometriosis UK’s recent report underlines why earlier diagnosis and consistent, compassionate care must be central to our approach.
That is why we have introduced Jess’s rule, requiring GPs to reconsider diagnosis where symptoms persist, as the shadow Minister, the hon. Member for Hinckley and Bosworth (Dr Evans) mentioned. We are also rolling out Martha’s rule, giving in-patients in acute hospitals in England the ability to initiate a rapid review of their case by someone outside their immediate care team. Those measures will help ensure that women’s concerns are not dismissed.
Those were the words that the Minister’s colleague read out in the previous debate, but I have no gripes about the Department saying the same thing. My question is about Jess’s rule and its interaction when there is a single point of referral. There will be a rub between GPs who say that someone needs to be seen because they might have a diagnosis of endometriosis and the system saying that those patients will be bounced back. I would be grateful if the Minister could clarify what that rule will look like in practice, because endometriosis is a good example to demonstrate it.
I was going to come on to what the hon. Gentleman said about that, as well as his request for an update on women’s health hubs. I will take the opportunity to write to him about that update and his specific question on how referrals will work. I am aware that colleagues have raised issues with referrals and, as the hon. Gentleman says, endometriosis will be a good example of whether that system is working as it should. I do not have the answer to hand, but I commit to writing to him on that.
We are also expanding access to diagnostic services. Community diagnostic centres are being rolled out countrywide for women on gynaecological pathways. Last month, 106 centres offered out-of-hours appointments so that women could get vital tests around work and caring responsibilities.
We are modernising how specialist care is delivered. In September, we announced the new online hospital NHS Online, which will be unconstrained by geographical boundaries. It will better align clinical capacity with patient demand so that patients will be seen and triaged faster. Earlier this year, we confirmed that menstrual problems, often a sign of conditions such as endometriosis, will be among the first nine conditions available for referral from 2027. Details are being worked through ahead of next year’s launch. Additionally, we are supporting integrated care boards to expand women’s health services at neighbourhood level, building on the successful pilot of women’s health hubs, so that good practice is spread and services are improved everywhere.
NHS England is currently updating the service specification for severe endometriosis, which will improve the standards of care for women with severe endometriosis by ensuring specialist endometriosis services have access to the most up-to-date evidence and advice. That will be published in due course.
The Minister is being very generous in giving way, and I wish her extremely well in her new post. On the point of the reconstruction of how services work, as mentioned by my hon. Friend the Member for Hinckley and Bosworth (Dr Evans): could the Minister undertake to do work, for people like my constituent Eleanor, so that there is a reduction in A&E visits because the other services are working? It is in the interests of the integrated care board to deliver these changes.
Yes—I or my colleague in the Department will undertake to look at that and ensure the hon. Lady receives a response.
In response to questions on data and research raised by my hon. Friend the Member for Hampstead and Highgate (Tulip Siddiq), and the hon. Members for Strangford (Jim Shannon) and for Bath (Wera Hobhouse), the Department, through the National Institute for Health and Care Research, has commissioned several studies focused on endometriosis diagnosis, treatment and patient experience. At present, the NIHR is funding six active research awards, totalling an investment of approximately £7.8 million. That includes a new £2.3 million award on the effectiveness of pain management for endometriosis, starting this month.
In response to the hon. Member for Strangford asking the Department to engage with health Ministers in the Northern Ireland Executive to discuss any learnings, best practice and areas to improve, I commit to do that. That is a great suggestion.
The hon. Member for Bath asked me about the Women and Equalities Committee inquiry into reproductive health conditions. I am grateful for the work that Committee is doing and welcome its report on that important topic. The Department will be issuing an official response to the report’s recommendations in due course.
Research has already led to new treatments being made available, including NICE approval of two pills to treat endometriosis, relugolix and linzagolix—oh, to have the skill of a doctor in pronouncing these complicated drug names! Those drugs are estimated to help around 1,000 women with severe endometriosis for whom other treatment options have not been effective.
No one should have to put up with chronic pain, which is one of the most common symptoms of endometriosis. The renewed women’s health strategy is under development, so I cannot say exactly what will be included, but the published strategy will set out the actions we are taking to improve women’s experiences, including around pain. As part of our engagement informing the renewal of that strategy, we held a roundtable on women’s experiences of pain, chaired by Baroness Merron and attended by women with lived experience and by expert organisations. That roundtable is informing our work to renew the strategy.
Better care also depends on better understanding. Improving public and healthcare professionals’ awareness of endometriosis will reduce the stigma, of which a number of Members spoke, and will ensure that symptoms are recognised rather than normalised or dismissed. In response to the concern of my hon. Friend the Member for Hampstead and Highgate about DWP training for assessors, I commit to write to the DWP to make that very point.
In response to the hon. Member for Chichester (Jess Brown-Fuller) and the Liberal Democrat spokesperson, the hon. Member for North Shropshire (Helen Morgan), the General Medical Council has strengthened women’s health representation in training. Since last year it has required UK medical graduates to pass the medical licensing assessment, encouraging a better understanding of common women’s health problems. That assessment includes topics on women’s health, including endometriosis.
Women’s health is also built into the Royal College of General Practitioners’ curriculum for trainee GPs, which brings together educational resources and clinical guidance to support primary care teams. Clinical guidance has been strengthened, too: NICE updated its endometriosis guidelines in 2024 to support more consistent decision making and faster routes to specialist input. NICE is working with the NHS to ensure the adoption of this best practice for endometriosis care, including access to approved medicines.
Research indicates that women’s experiences of healthcare are not uniform, as we have heard, and particularly that outcomes can vary sharply between different communities. Ethnically diverse women with endometriosis can encounter additional hurdles in getting a diagnosis and appropriate support. We will not accept those disparities as inevitable. Our ambition is for a fairer Britain, where people live well for longer and spend less time in ill health, and where women, whatever their background, can rely on high-quality care.
My hon. Friend the Member for Erith and Thamesmead (Ms Oppong-Asare) has just appeared, and under parliamentary conventions is not allowed to intervene, so I rise to say that she is hosting a screening of a BAFTA-winning film about endometriosis and the experiences of women in the Jubilee Room at 4.30 pm, if anyone is interested.
That was an excellent intervention, I have to say; I am glad that we will all be out of here in time to go and enjoy that. For the ladies and gentlemen in the Gallery, do not worry: it is free entry and no invite is needed. I thank my hon. Friend the Member for Erith and Thamesmead (Ms Oppong-Asare) for all she does on women’s health. She has led the way, more than most in Parliament, on the issue in her time here. That is recognised, and I thank her for it.
We are hopefully shifting the centre of gravity of care from hospitals to communities, with neighbourhood services designed around local need. Earlier this month, we published a neighbourhood health framework, setting out three reform agendas for ICBs, local authorities and civil society to deliver the aims of neighbourhood health. We have done this to improve services for people who need routine healthcare; to improve proactive care, including maintaining and developing access to women’s health services; and to deliver better alternatives to hospital care.
Adam Dance
Ami is at home watching, and thanks everyone for speaking, but one of the things she said would help her is continuity in seeing the same GP. As we heard earlier, it took 22 years for her to be diagnosed. The other issue she faces is that she cannot have children, and raising the limit for fertility treatment would be helpful. Will the Minister arrange to meet Ami with me?
I am grateful to the hon. Gentleman for bringing the details of Ami’s case to us. Waiting 22 years for a diagnosis is shocking, and I suppose it would have been very difficult to have continuity of care over such a long time, but I take on board the point that he makes. When we—myself included—go to the GP, we often see a different person every time. As I said, this is not my brief, so I will feed his request for a meeting back to the Minister for Secondary Care. I cannot promise on her behalf, but we have heard his request.
The framework I was just outlining provides clarity and consistency, supporting joined-up partnership between ICBs and local authorities, working together to develop locally led neighbourhood health plans. This will hopefully address some of the concerns raised by the hon. Member for Yeovil (Adam Dance) about continuity of care.
Since coming into office, this Government have delivered over 5 million extra appointments in our first year; reduced the numbers on gynaecological waiting lists by over 24,000 women; and given women easier access to the morning-after pill, free of charge. A lot done; a lot more to do. We have made strong progress in turning the commitments in the last Government’s women’s health strategy, which the hon. Member for Hinckley and Bosworth highlighted, into tangible action. Our renewed strategy will set out how this Government are taking further steps to improve women’s health as we deliver the 10-year health plan. It will address gaps from the 2022 strategy, and go further to create a system that listens to women, tackles health inequalities and makes progress on conditions such as endometriosis.
Renewing the strategy will help identify and remove enduring barriers to high-quality care, such as long waits for diagnosis, and will ensure professionals listen and respond to women’s needs. I thank my hon. Friend the Member for Ipswich for bringing forward this important debate, and all hon. Members for sharing so many of their constituents’ stories. I give special thanks to Monica and all the women who are in the Public Gallery to bear witness and push us to do more. We have heard them, and I commit to doing what I can to ensure that their efforts have not been in vain.
(3 weeks, 4 days 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 John. I thank my hon. Friend the Member for Rossendale and Darwen (Andy MacNae) for securing a debate on such an important issue. I am grateful to him for opening the debate during SUDC Awareness Month, a time dedicated to remembering children who have died suddenly and without explanation.
I also thank my hon. Friend for sharing Frankie’s story; it was profoundly moving to hear about it, as it was to hear all the contributions this morning. I want to acknowledge the courage of Frankie’s family in turning such devastating loss into a call for understanding and change. Frankie was clearly a much-loved little boy, as are all the children who are lost to SUDC, and no family should have to live with unanswered questions about why their child died. I am grateful to Frankie’s grandfather and SUDC UK for their determination in making sure that unexplained never means unexamined. I recognise the importance of the leadership, co-ordination and clarity that they are asking for.
It is important to me that we strengthen our understanding of SUDC and ensure that families can access the right support when they need it. This Government set out an ambitious commitment to raise the healthiest generation of children ever. To achieve that, we must ensure that families receive the best support and advice on all matters relating to child health, including SUDC.
I thank all hon. Members for their powerful and moving speeches and interventions today. I turn to some of the specific issues raised. I recognise the calls from a number of Members for a national plan. That is why we are strengthening pathology services, ensuring high-quality bereavement support and a growing research base. As that works progresses, we will continue listening to families, clinicians and researchers about where further improvements are needed.
My hon. Friend the Member for Doncaster Central (Sally Jameson) asked me about bereavement leave, and made a very strong case. I will commit to raising that with Department for Business and Trade Ministers as a priority. I will also raise the issue of police and paramedic training, which my hon. Friend the Member for Altrincham and Sale West (Mr Rand) raised, with the relevant Departments and Ministers. Both my hon. Friends raised very important issues.
My hon. Friend the Member for Warrington South (Sarah Hall) asked about the implementation of the recommendations in the paediatric and perinatal pathology workforce report. I will write to her on that, and on the four points she called for in particular.
I thank my hon. Friend the Member for Rossendale and Darwen for highlighting that information on SUDC was taken down from the NHS website. Parents who have lost a child to SUDC should be able to access the advice and support that they need. I have already asked my officials to investigate that and explore opportunities to include signposting on the NHS website.
No family should ever have to experience the loss of a child, as so many of us in this Chamber today have. It is vital all of us have access to compassionate and timely support when the worst happens. The child death review process ensures that every child’s death is understood sensitively and thoroughly, and is vital in helping families to understand what happened to their child. While bereavement support is commissioned locally to reflect the needs of each community, there is clear national best practice that sets out that every bereaved family should have a key worker to guide them through a time of inconceivable loss and heartbreak. That key worker helps to provide clarity, information and kindness, and helps families to access further sources of support where needed. We also encourage anyone seeking help to contact their GP, who can also guide them to appropriate services.
I also want to thank some of the wonderful organisations and charities across the country, such as SUDC UK, the Lullaby Trust, Cruse Bereavement Support and the Good Grief Trust, which provide exceptional support to families experiencing this devastating loss. Alongside that, the National Bereavement Alliance has published updated voluntary service standards to support continuous improvement in the quality of care. Putting the needs of children and their families first is at the heart of everything I will do in my role as a Minister. We will continue working with partners to ensure that bereaved families receive the compassion and support they deserve.
As we have heard today in detail, pathology waiting times can add to the distress experienced by families at a critical time when they need answers quickly. As was highlighted by the hon. Member for Mid Sussex (Alison Bennett), who speaks for the Liberal Democrats, there is a nationwide shortage of paediatric pathologists in England and Wales, which can affect the time taken to complete pathology testing following a coronial post-mortem. To address that, NHS England has launched a national programme to strengthen perinatal and paediatric pathology services. The Government have made more than £2 million-worth of additional funding available to increase post-mortem capacity. That has increased training posts and the number of trainee doctors and new pathologists.
Alongside that, genomic testing for SUDC is available through the NHS genomic medicine service. Decisions about whether genomic testing is appropriate are made after the post-mortem and through careful discussions with specialist multidisciplinary teams. NHS England closely monitors how genomic testing is delivered across the country, so that it can spot where services differ and work with local teams to improve services. That helps to ensure families can benefit from high-quality, consistent services where they live. Taken together, these steps will help to ensure that families receive timely, high-quality investigations at moments of profound difficulty, while supporting the workforce who deliver this critical service.
As hon. Members have said, SUDC remains an under-researched area, and I agree that we must do more to deepen our understanding. The Government remain open to funding high-quality research into SUDC through the National Institute for Health and Care Research, and we welcome applications on any aspect of child health, including SUDC.
For example, I thank my hon. Friend the Member for Rossendale and Darwen for raising the great work of Bristol University in hosting the national child mortality database and child mortality analysis unit. The Government’s support for the national child mortality database has already made a meaningful difference by bringing together national-level data on all child deaths in England and allowing a far greater understanding of deaths in children over the age of one.
I am encouraged to see that, building on that foundation, the University of Bristol has secured funding from SUDC UK for the Pioneer SUDC study. This will help to shape future research questions and contribute to deeper learning in this under-explored area. As this growing body of evidence develops, it will allow experts to identify where research can have the greatest impact and where gaps remain, including in areas such as febrile seizures. I thank my hon. Friend for raising that area today, because it is definitely one we need to look at.
On research, I will make a plea for Queen’s University Belfast, as I always do in such debates, because it does incredible work. It is not the only university that does so; many universities across this United Kingdom do so as well. Will the Minister engage with Queen’s University Belfast and other universities to ensure that the necessary research can be achieved and thereby save lives?
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.
Lincoln Jopp
The Minister is very generous with her time, and I am grateful to her for that. She welcomed the research funded by the SUDC UK in Bristol, but I do not think we have heard any commitment to Government-funded research into this area. Will she clarify whether she will take that forward?
I think I may have mentioned some Government-funded research, but I will commit to write to the hon. Gentleman on that point, rather than try to guess what I may have said.
In closing, I again thank my hon. Friend the Member for Rossendale and Darwen for bringing forward this debate, and all hon. Members for their heartbreaking speeches. Those of us here today who have had the privilege of taking part in this debate will never forget them and the names of the children either: Frankie, Miranda, Jack, Louis and Harry—as well as all the other precious children who we have lost to SUDC. The names, families and circumstances mentioned today are all in Hansard now forever. I want to thank all the families in the Public Gallery for being with us today and for their campaigning for change, research and better support.
A number of Members here today recognise that drive because it is what drove us here ourselves. I take on board the plea from the hon. Member for Spelthorne (Lincoln Jopp) to ensure that we see progress and do not all find ourselves back here in a few years’ time having the same debate. We will continue to work with clinicians, researchers, charities and—above all else—families to deepen our understanding, strengthen the support available, and ensure that every child’s death is fully examined and that their life is never forgotten.
Thank you, Minister. Before I call on Andy to wind up, I echo the thanks to all Members for contributing to this important debate. I also particularly thank all those who have taken time to attend in the Public Gallery. Thank you so much.
(3 weeks, 5 days ago)
Commons ChamberThank you, Madam Deputy Speaker. I beg to move, That this House agrees with Lords amendment 1.
With this it will be convenient to discuss:
Lords amendments 2 to 27.
Lords amendment 28, and Government amendments (a) to (c) consequential on Lords amendment 28.
Lords amendment 29, and Government amendments (a) to (c) consequential on Lords amendment 29.
Lords amendments 30 to 123.
Before I address Lords amendment 1, I would like to take this opportunity to pay tribute to my predecessor, my hon. Friend the Member for West Lancashire (Ashley Dalton), for her work on the Bill and the wider prevention agenda. I also extend my thanks to Baroness Merron for her work in the other place, ensuring that the Bill was expertly steered through the legislative process.
This is a landmark Bill, and I am honoured to have taken on responsibility for it as the House considers the amendments made in the other place. Creating a smoke-free generation is the most significant public health intervention since the ban on smoking in public places in 2007, under the last Labour Government. Tobacco claims around 80,000 lives every year, and in England it is responsible for a quarter of all cancer deaths. Someone is admitted to hospital almost every minute as a result of smoking, and up to two-thirds of deaths among current smokers can be attributed directly to smoking. Those are not abstract figures; they represent lives cut short by an entirely preventable harm.
The Bill also takes decisive action to tackle the rapid rise in the use of vapes and other nicotine products, particularly among young people, protecting a new generation from nicotine addiction. All the amendments to be considered today have been accepted by the Government, starting with Lords amendments 1, 2, 39 and 40, which change the parliamentary procedure for age verification regulations from negative to affirmative in England and Wales, and in Northern Ireland. The regulations will set out how retailers may ensure compliance when verifying a customer’s age. The changes were made as a result of a recommendation from the Delegated Powers and Regulatory Reform Committee, which the Government accept.
I have always wanted to give way to the hon. Member for Strangford (Jim Shannon).
Well done, Minister—it has been a joy to see the hon. Lady’s elevation to the position she now holds, and I wish her well. Is she aware that Lord Dodds, a DUP Member of the other House, continued to push for changes to age verification in the Bill, and that my party’s primary motivation for the amendments was retailer protection? Without strict parliamentary scrutiny of age verification rules, small businesses will face disproportionate burdens compared with large supermarkets, and the moving age restriction, which rises by one year every year, makes manual verification increasingly difficult for shopkeepers over time. Has the Minister had the opportunity to address that issue, as it concerns many people?
We do not intend to place undue burdens on retailers. Indeed, it should be easier because there is one only date that anyone will have to remember when verifying somebody’s age, which is 1 January 2029. It should be a lot easier as nobody has to do any complicated arithmetic in their head any more. I thank the hon. Gentleman for his intervention.
Lords amendments 3 and 4 provide a narrow exemption to the Bill’s ban on vape vending machines, allowing them to be used in adult mental health settings in England and Wales, and only in areas “wholly or mainly” for patients. That aims to support adult in-patients who may face limits on accessing vaping products used to manage nicotine addiction. The Government remain committed to the wider ban on vending machines, to prevent children and young people from being able to bypass age restrictions on vapes and nicotine products. However, we are aware that adults with long-term mental health conditions have a much higher smoking prevalence than the general population, and ensuring that adult in-patients are able to access vapes from vending machines supports smoking cessation.
Lords amendments 6, 7, 9 to 18, 20, 25, 27, 29 to 31, and 92 to 102 relate to the creation of a licensing scheme in England, and allow for the licensing authority to enforce the future scheme in addition to trading standards. The change was made in response to feedback from local government stakeholders that such a measure would strengthen the scheme and help it to be managed more efficiently following its introduction. Lords amendments 21 to 24 and 28 allow the proceeds from the £2,500 fixed penalty notice for licensing offences in England and Wales to be retained by local authorities for enforcement purposes. The Bill previously required them to be returned to the consolidated fund after costs were deducted. That aligns with the Bill’s approach to allow local authorities to retain proceeds from the £200 fixed penalty notices. Local authorities will be able to reinvest proceeds into strengthening enforcement of the Bill, and help to tackle the illicit market.
May I, too, welcome the Minister to her post, and say how wonderful it is to see her leading on this important work? On a point of clarification, I am sure the measure she mentions will be welcomed by local authorities. Certainly the experience in my area is that there are hotspots where local authorities struggle with enforcement on a range of issues, whether that is antisocial behaviour, noise, or other activities. Will the measure apply to all local authorities, or just those in some parts of the country? It would be wonderful if it is all local authorities.
As far as I am aware, it is all local authorities—I am getting an affirmative nod from the Box, so I am happy to give my hon. Friend that reassurance.
The Government have also tabled amendments (a) to (c) consequential on Lords amendments 28, and amendments (a) to (c) consequential on Lords amendment 29, to correct an error arising from changes made on Report in the other place. Without these amendments, trading standards officers in Wales would lose the ability to issue certain fixed penalty notices for a short period. The amendments resolve that issue and ensure consistency of approach between England and Wales.
On the Bill’s ban on advertising vape and nicotine products, Lords amendments 72 and 106 to 109 create a specific defence and provide additional clarity for businesses, ensuring that they can promote non-branded vaping and nicotine products where that is done in an arrangement with a public health authority for public health reasons. It was always the Government’s intention to allow public authorities to continue to promote effective smoking cessation tools, and these amendments strengthen that. I am pleased that we can provide reassurances to healthcare professionals that they can continue to promote smoking cessation materials in agreement with public health authorities.
There are also a number of more technical Lords amendments—71, 104, 105, 110 and 123—relating to advertising. They ensure that the policy works as intended by ensuring consistency of approach, and by taking account of changes to other legislation. They support the implementation and enforcement of the advertising provisions in the Bill.
The issue of filters has been raised throughout the passage of the Bill, both in this House and in the other place. Action on filters has been proposed by parties from across the political spectrum, because of concerns about environmental harms and harms to health. However, parliamentarians have advocated for restricting filters in a number of different ways. Lords amendments 32 to 34, 37 and 38, 42 to 48, 51 to 59, 62, 77 and 78, and 103 therefore contain a suite of powers that will enable secondary legislation to regulate filters, should evidence suggest that this is necessary. Regulations could ban filters in the future, or regulate their packaging, advertising and display. The evidence on the effect of filters, including their direct health impact, is still emerging, so no decision has been made on the use of those powers. The Government will look to consult on using the powers only if we think that there is sufficient evidence to justify action.
Jim Allister
On the review of the Bill, can the Government give an absolute guarantee that all its parts will apply to the whole United Kingdom, and particularly Northern Ireland? We are still, alas, subject to the EU’s tobacco directive, which many believe conflicts with a key part of the Bill. If that aspect of the Bill is overturned in Northern Ireland, will the Government commit to legislating to ensure that it does apply across the whole UK?
We are content that the measures in the Bill, which are intended to apply to Northern Ireland, are compatible with the obligations under the Windsor framework. I hope that answers the hon. and learned Gentleman’s concern.
We hope that the review will be a clear demonstration of the Government’s commitment to monitoring progress against our smokefree ambition. Finally, Lords amendments 5, 8, 36, 41, 60 and 61, 63 to 76, 79, and 81 to 88 are technical amendments, some of which are consequential to the commencement of several other Acts. They also improve consistency in drafting across the Bill.
I encourage all Members to support all the amendments. These are meaningful changes that strengthen the Bill and respond to concerns raised by Members across the House and in the other place. The Government amendments tabled today will return to the other place for consideration, and I look forward to their timely agreement, and to the Bill completing its final stages.
Ms Julie Minns (Carlisle) (Lab)
Before I begin my brief speech, may I say how good it is to see my hon. Friend the Member for West Lancashire (Ashley Dalton) in the Chamber? We owe her a debt of gratitude for both introducing the Bill and piloting it through the House. She leaves behind—I was going to say large shoes, but that seems a bit rude—significant shoes to be filled, but I know they are shoes that the Under-Secretary of State for Health and Social Care, my hon. Friend the Member for Washington and Gateshead South (Mrs Hodgson), is more than capable of filling, and I am very glad to see her in her place this evening.
I wish to speak briefly about Lords amendments 11 and 61, which, as we heard from my hon. Friend the Member for Falkirk (Euan Stainbank), clarify what we mean by a “relevant enforcement authority” and, in particular, clarify the duty that will be placed on that relevant enforcement authority to consider annually whether it is appropriate to carry out a programme of enforcement action. As has been said, we acknowledge, and know, that vaping can support adults who want to move away from smoking, but we nevertheless cannot ignore the rapid rise in youth vaping and the growing presence of illegal, non-compliant and counterfeit vapes and cigarettes in all our communities. That is why a robust, mandatory licensing framework is so urgently needed. The Bill will give the Government the power to introduce such a framework, and that can only be strengthened by a requirement for licensing authorities to consider annually the programme of enforcement.
Contrary to what the hon. Member for Windsor (Jack Rankin) seemed to suggest, one of the strongest arguments for licensing is its ability to combat the sale of illegal cigarettes and vapes on our high streets. Local authorities and enforcement bodies have warned repeatedly that rogue sellers are flooding the market with untested, high-nicotine, incorrectly labelled or counterfeit products, and my constituency is no exception. Just a few weeks ago, Cumberland council trading standards seized 6,000 illegal cigarettes in raids, and that was in addition to the £20,000-worth of illegal tobacco and vapes seized last summer. The introduction of on-the-spot fines of up to £2,500 and the ability to revoke retailers’ licences entirely are therefore welcome.
Mandatory licensing will also make it much easier to shut down dodgy shops that knowingly stock or distribute illegal vapes and cigarettes. Under the new framework, any premises found storing, displaying or supplying unregulated products will lose their licences, because licensing applies not just to the act of selling, but to the possession of regulated products for retail purposes. This means that enforcement officers will no longer have to rely on repeated seizures or warnings; they will have a fast, lawful route to closing down problem retailers for good.
In short, mandatory licensing is not just another layer of regulation; it is a powerful tool to crack down on illegal vapes, remove bad actors from our high streets, and support safer and more responsible retailing. More important, it will give local authorities the powers they need to shut down dodgy shops quickly, decisively and permanently. I therefore welcome both the Lords amendments and the Bill as a step forward to cleaning up our high streets and ensuring that we have a healthier, happier country.
With the leave of the House, Madam Deputy Speaker, I would like to place on the record my sincere thanks to all Members who have contributed to this thoughtful and constructive debate, and throughout the Bill’s passage in this House. It has been a real privilege to take it through this stage, following in the elegant and tiny footsteps but great ability of my hon. Friend the Member for West Lancashire (Ashley Dalton), who, along with our colleague Lady Merron in the other place, has done sterling work.
I am so grateful for the engagement of colleagues across the House, and for the shared commitment to improving public health and protecting future generations. As Members are aware, smoking remains the leading preventable cause of death, disability and ill health in this country. Despite significant progress, 5.3 million adults were still smoking cigarettes in 2024, and while tobacco remains the greatest threat, owing to its unique harms, we are also seeing a rapid rise in the use of vapes and other nicotine products, particularly among young people, creating a new generation at risk of harm and addiction. That is why this Bill matters, and why the action that we are taking today is so important.
Let me now turn to the points raised by hon. Members, who were small in number but mighty in their contributions. The shadow Minister, the hon. Member for Hinckley and Bosworth (Dr Evans), made an excellent speech, and I enjoyed hearing his thoughts—but he is not listening while I am talking about him.
The Parliamentary Secretary to the Treasury (Torsten Bell)
She is trying to be nice to you!
I am trying to be nice, and the shadow Minister is ignoring me, but I really enjoyed listening to what he said about being a practising doctor, and about his concerns which made it so apparent that we had to do something about this. I am sure that, having got here, he is proud to have played a part in getting this legislation on to the statute book, for those very reasons. He asked me about the illicit market. The creation of a smokefree generation will prevent people from ever becoming addicted to smoking in the first place. When the age of sale was increased from 16 to 18, 1.3 million more people could no longer to be sold cigarettes, and would, in theory, be in the market for illegal cigarettes. In practice, the number of illicit cigarettes consumed fell by 25% between 2005-06 and 2007-08.
The Bill takes bold action to strengthen enforcement and crack down on rogue retailers. We are investing up to £10 million of new funding in trading standards annually until 2028-29 to tackle the illicit and under-age sale of tobacco and vapes, and to help enforce the law. That funding is being used to boost the trading standards workforce by hiring 120 apprentices across England. The illicit tobacco strategy establishes a cross-Government taskforce, enhancing the ability of His Majesty’s Revenue and Customs to disrupt organised crime. Between April 2015 and March 2023, over 10 billion cigarettes on which UK duty had not been paid were seized by His Majesty’s Revenue and Customs and Border Force. The hon. Member for Windsor (Jack Rankin) asked about the illicit market, so I hope that addresses some of his concerns.
The shadow Minister asked about an appropriate balance. The Bill rightly takes strong action against youth vaping while recognising the important role that vapes play in helping adult smokers to quit smoking. The Government have been cautious to strike the right balance between reducing the appeal to children and ensuring that vapes remain an accessible tool for smoking cessation. That is why the Bill provides powers to tackle the appeal of vapes to children through elements such as packaging, display, flavours and device features. However, in order to avoid unintended consequences for adult smoking rates, the scope of restrictions will be carefully considered and consulted on.
I am glad the Minister has addressed many of the questions that I posed. One was about the designation of vape-free places, and I think there is consideration of what that will look like. How will the Government approach that? I would welcome it if she could at least set out the framework of what she might think about in her new role.
That is being looked at, and I can write to the shadow Minister with the details as we progress. I will commit to doing that.
I welcome the Minister to her place and congratulate her on her new role. She has a hard act to follow, but I am sure she will be brilliant in her job. Could she say what metrics the Government will use to measure whether the Bill successfully reduces youth vaping?
I will definitely write to my hon. Friend, rather than just guess, but I suppose that we will see fewer young people vaping—the numbers should go down. To quote chief medical officer Chris Whitty, as someone did in an excellent speech earlier:
“If you smoke, vaping is much safer; if you don’t smoke, don’t vape.”
That is what we want the message to be, but I will commit to writing to my hon. Friend about how we will follow the metrics.
I come to the contribution from my hon. Friend the Member for City of Durham (Mary Kelly Foy), who asked about the levy. The measures in this Bill to reduce the use of tobacco are world leading. Given that the Bill will create a smokefree generation, and that we have a proven and effective model for increasing tobacco duties, we do not think that introducing a new, bespoke levy is the best way forward.
My hon. Friend also asked about advertising. We must stop the advertising and promotion of products that risk addicting a new generation to nicotine. The Bill delivers on this Government’s manifesto commitment to stopping the blatant advertising of vapes to children while continuing to support adult smokers in quitting. She said that it would be appropriate for nicotine pouches to be in scope of the ban on advertising, and I can commit to that.
My hon. Friend the Member for Chatham and Aylesford (Tristan Osborne) made a very thoughtful contribution, which sadly was followed by a not-so-thoughtful contribution from the hon. Member for Windsor. He and the hon. and learned Member for North Antrim (Jim Allister) called this a “socialist Bill”, but I remind the House that it started its life under a Conservative Government, and was lost in the wash-up prior to the general election.
I will finish responding to the hon. Member’s ideological arguments. This is not about liberty or choice for smokers. Up to two thirds of deaths among smokers can be attributed to smoking; three quarters of smokers wish they had never started; and the majority want to quit. That is not freedom of choice. The tobacco industry took away their choice by addicting them at a very young age.
Jack Rankin
I thank the Minister for her implied compliment to the Leader of the Opposition, who voted against this Bill on Second Reading when the previous Prime Minister brought it forward. She voted against it because the Bill does not respect the proper relationship between the state and the individual, and does not deliver equality under the law, so we will take that as a compliment in the new Conservative party, which is being refreshed in an authentically conservative direction.
The freedom to be addicted—I think that is what the hon. Member has just defended. I am sure that those on his Front Bench will take note of that. He also asked me about smokefree places. No smoker wants to harm people, but they do so through second-hand smoke, as we all know. On 13 February, the Government published our consultation on “free from” places. As we have previously set out, this Government are consulting on making outdoor public places smokefree and free from heated tobacco, including children’s playgrounds and spaces outside a number of health, social care and educational settings. Children and medically vulnerable people who visit such places should not be exposed to harm through no choice of their own. Additionally, we are consulting on making areas outside playgrounds and schools vape-free. With regard to indoor spaces that are currently smokefree, we are consulting on making the majority free from heated tobacco and vape-free. The consultation does not consider extending the proposals to outdoor hospitality.
Moving on to the excellent speech from my hon. Friend the Member for Falkirk (Euan Stainbank), I can confirm that, for smoking cessation purposes, flavoured vapes can still be promoted by businesses if they have an agreement with public health authorities. We recognise that vape flavours are an important consideration for adult smokers who are seeking to quit smoking, which is why the Government recently committed to consulting on regulating flavour descriptors as a first step before considering broader restrictions on flavoured ingredients.
The hon. Member for South Antrim (Robin Swann), in his really good speech, mentioned concerns about Northern Ireland. The Bill is UK-wide and has been developed in close partnership with the Scottish Government, the Welsh Government and the Northern Ireland Executive. We are content that the measures in the Bill, which are intended to apply to Northern Ireland, are compatible with the obligations under the Windsor framework, as I said earlier. The UK Government notified the EU’s technical regulation information system—TRIS—that certain provisions in the Bill relate to Northern Ireland; this is a standard process, not an approval process. Certain EU member states issued opinions setting out concerns about the compatibility of the smokefree generation policy with EU law, and it is not unusual for member states to submit opinions on TRIS notifications. For instance, several member states recently wrote to France when it proposed a ban on nicotine pouches, despite several other member states having already introduced such a ban.
The Government have provided a comprehensive response to the opinions that we have received, which sets out the strong public health justification for the policy, and explains why the smokefree generation policy complies with EU law as it applies under the Windsor framework, and the European Commission has now responded, noting our response. This concludes the TRIS process. I hope that answers some of the hon. Gentleman’s concerns.
We had really good contributions from my hon. Friends the Members for Dartford (Jim Dickson) and for Carlisle (Ms Minns). If I have not answered any of their questions because I was not quick enough to write stuff down, I commit to writing to both.
I very much hope that this House will support all the amendments under consideration, and that the Governments amendments will return to the other place for due consideration. I hope that this landmark Bill can complete its passage shortly, and that we can move forward with delivering a smokefree UK.
Lords amendment 1 agreed to.
Lords amendments 2 to 28 agreed to, with Commons financial privileges waived in respect of Lords amendments 21 and 22.
Government amendments (a) to (c) consequential on Lords amendment 28 made.
Lords amendment 29 agreed to, with Commons financial privileges waived.
Government amendments (a) to (c) consequential on Lords amendment 29 made.
Lords amendments 30 to 123 agreed to, with Commons financial privileges waived in respect of Lords amendments 32 to 34, 37, 38, 43 to 48, 51 to 59, 62, 77 and 78.
National Insurance Contributions (Employer Pensions Contributions) Bill: Programme (No. 2)
Motion made, and Question put forthwith (Standing Order No. 83A(7)),
That the following provisions shall apply to the National Insurance Contributions (Employer Pensions Contributions) Bill for the purpose of supplementing the Order of 17 December 2025 (National Insurance Contributions (Employer Pensions Contributions) Bill: Programme):
Consideration of Lords Amendments
(1) Proceedings on consideration of Lords Amendments shall (so far as not previously concluded) be brought to a conclusion three hours after their commencement.
Subsequent stages
(2) Any further Message from the Lords may be considered forthwith without any Question being put.
(3) Proceedings on any further Message from the Lords shall (so far as not previously concluded) be brought to a conclusion one hour after their commencement.—(Imogen Walker.)
Question agreed to.
(1 month, 1 week 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 from the Dispatch Box, Sir Alec. I thank my hon. Friend the Member for North Ayrshire and Arran (Irene Campbell) for opening this important debate, following the petition related to funding for infants to receive type 1 diabetes testing and routine care. I am grateful to all hon. Members who have taken part and for all the heartfelt speeches that we have been privileged to hear.
I am not surprised at all that the petition received 120,000 signatures after it was started, following—as we know—the tragic death of two-year-old Lyla Story from diabetic ketoacidosis mere hours after seeing her GP. I was deeply affected when I heard that a child so young had been taken so cruelly by a condition as common and manageable as type 1 diabetes. I thank and pay enormous tribute to Lyla’s parents, John and Emma Story, who have campaigned so passionately and powerfully at a time of such unimaginable grief. It is truly inspiring, and we hope that it will help to ensure that no other families will suffer as they have. I am so sorry, and I offer Mr and Mrs Story my deepest sympathies. No child or their family should be let down in this way.
We have started to make improvements to raise awareness, and this debate forms a very important part of that. During World Diabetes Day in November 2025, NHS England made a big push to raise awareness of the four Ts, which, as we have heard today, are the main symptoms of type 1 diabetes: thirst, tiredness, thinning, and an increased need to go to the toilet. This work was channelled via social media and a cascade to clinical networks, as well as by updating the nhs.uk pages to make them clearer. A RightCare toolkit was also published by NHS England, which is designed to support integrated care systems to design, plan and deliver high-quality treatment and care for children with all types of diabetes.
I warmly welcome the Minister to her place. I should declare that I was diagnosed with type 1 diabetes at the age of three, so I cannot begin to imagine the pain that Mr and Mrs Story, and other affected families who are in the Public Gallery or watching this debate online, have felt—particularly my constituent Levi, who lost her beloved son Eli at the age of two after five misdiagnoses of viruses and infection. Will the Minister undertake to ensure that future guidance will be drafted to emphasise to clinicians that infections and viruses can be not only a symptom, but sometimes a trigger of type 1 diabetes, so that clinicians will have, we hope, the understanding to avoid the tragic losses that we have heard about today?
I thank the former Secretary of State for Health for her important intervention. I was not aware that she was type 1 diabetic herself, and the case of Levi that she mentioned is so pertinent to what we are discussing. Mr Story has been working with NICE, and that guidance is currently being updated. As the right hon. Member says, it is so important to get that information out there, so that all GPs are brought up to date and know that infections and viruses can be a trigger, so I thank her for that intervention.
The RightCare toolkit that is being brought forward also contains important information for clinicians in setting out what good quality diabetes care looks like for children and includes guidance on timely and accurate diagnosis. However, we recognise that more needs to be done, and that is why NHS England is working on how we can better support NHS staff to diagnose patients as quickly as possible and raise awareness of symptoms for parents and families.
Tom Gordon
The Minister is talking about how the toolkit will outline for GPs what good diabetes care looks like. That independent advocacy and scrutiny function often came from Healthwatch, which will be abolished in the changes to the NHS and rolled into DHSC. Can she outline how we will ensure scrutiny of services such as diabetes care, which have the patient voice at their heart?
If I may, I will write to the hon. Member on his important point, rather than giving a possibly unsatisfactory answer off the top of my head.
The NHS is exploring how IT can be better used to support GPs in making more accurate diagnoses. That includes how existing electronic patient record—EPR— systems could be used more effectively to provide prompts for GPs to consider type 1 diabetes when particular symptoms are added. I can update the House that clinical leaders in NHS England are also working with digital diabetes education providers to develop a primary care healthcare professional education module.
While we are working on options to improve type 1 diabetes diagnosis, a requirement for a mandatory finger-prick test for those presenting with possible symptoms of type 1 diabetes is difficult to enact and could not be delivered quickly. I hear the point made by the hon. Member for South Northamptonshire (Sarah Bool) in her excellent speech—many others also made this point—about how all GP practices should have the necessary equipment and finger-prick testing kits, and several hon. Members raised the issue of NHS funding for point-of-contact testing kits. I can reassure them that there is good clinician access to those tests. What we need to do is ensure that their use is at the forefront of clinicians’ minds when the symptoms present, which is exactly what Mr and Mrs Story called for in their petition.
One Member raised the abolition of NHS England. I can reassure Members that, as part of that change process, policy functions will transfer into the Department as appropriate. Clinicians follow clinical guidelines set out by NICE, which are advisory and not mandatory. They are not mandatory because they are designed as evidence-based advice to inform rather than to replace clinical judgment, allowing for tailored care for individual patients. Guidelines cannot cover every unique patient scenario, and clinicians must therefore maintain responsibility for treatment decisions.
Tom Gordon
I thank the Minister for being so generous with her time. Before entering this place, I worked for Breakthrough T1D, and one thing that came up all too often was that clinicians did not feel that they had the funding to give people the treatment they needed. The Minister makes the point about giving them independence, but does she acknowledge that if they do not have the funding to do that, the guidance falls at the first hurdle?
That might be a fair point on some treatments more widely, but funding is not an issue for the finger-prick test—it is very affordable for the NHS, and I am told that funding is not the issue on the point we are debating today. I am pleased that NICE has been able to respond very quickly to Mr and Mrs Story. It has engaged with them in detail and listened to their concerns about how the guidance could be clearer.
I am very pleased that NICE has recently said it will update the guidance and guidelines on the diagnosis and management of type 1 and 2 diabetes in children, to raise the prominence of the risk of diabetic ketoacidosis in children with undiagnosed diabetes. I understand that the conversation Mr Story is having with NICE is ongoing, and that NICE is also considering an update to the adult guidance in due course. I know that Mr Story has raised further recommendations with NICE to improve that guidance. I am sure NICE will be considering it very carefully.
I would like again to put on record my admiration for the huge effort and determination of Mr Story in campaigning to raise awareness and advocating for improvements. The updating of NICE guidance is tangible proof of his efforts; his time has not been wasted.
I recognise that the immediate issue raised is point-of-care testing, but I should update the House in saying that, more broadly, we are also funding the delivery of research to develop and test novel approaches for diagnosing type 1 diabetes earlier and more accurately through the NIHR. That includes an investigation of the use of a new home test for type 1 diabetes in children and young people. Studies are also identifying ways to improve the diagnosis of type 1 and 2 diabetes based on genetics, making prediction more accessible and more effective.
We are also supporting the delivery of research into type 1 diabetes treatment, again through the NIHR. That includes supporting a new UK-wide type 1 diabetes cell therapy clinical trials network. The aim is to ensure all people with the condition gain access to the latest cutting-edge treatments as early as possible. The NIHR’s research delivery network is also supporting the delivery of a study that aims to identify infants at risk of developing type 1 diabetes, and to study new treatments with the aim of preventing the development of the condition.
In addition, following the publication of NICE’s guidance recommending the use of hybrid closed loop systems as a treatment option for type 1 diabetes in children, the NHS began a five-year roll-out of HCLs in 2024. For those who are not familiar with that technology, an HCL acts as an artificial pancreas that lets a person’s insulin pump talk to their continuous glucose monitor. I am sure that adults in particular with type 1 diabetes are very aware of HCLs, but the use of HCLs in children under 19 has now increased from 36% in 2023-24 to 70% in 2025-26. That is significant progress in making that life-changing technology available to more children and young people.
Returning to the issue of diagnosis, the NHS is exploring how IT can be better used to support GPs in making more accurate diagnoses. That includes how existing electronic patient record systems could be used more effectively to provide prompts for GPs to consider type 1 diabetes when particular symptoms are added. I can inform the House that clinical leaders in NHS England are working with digital providers of diabetes education to develop an education module for primary care healthcare professionals.
A few Members mentioned screening, so I would like to take this opportunity to set out the Government’s position. Although we know that screening for antibodies would sadly not have helped Lyla, screening tests may help to improve our ability to identify those who are most likely to develop type 1 diabetes in future. We are guided by the independent scientific advice of the UK National Screening Committee, as it is vital that screening programmes are evidence-based and evidence-led. The committee does not currently recommend screening for type 1 diabetes, due to a lack of evidence.
However, the committee received a submission, via its 2024 open-call process, to consider screening for autoimmune type 1 diabetes through blood testing. Once NICE has published its recommendation on the drug teplizumab, which is expected this year, the National Screening Committee will consider whether a fresh review of the evidence for type 1 diabetes screening should be undertaken.
In addition, NHS England is looking carefully to see what further improvements might be made to the red book and to support increased awareness for parents and families so that they can see what the symptoms of type 1 diabetes are. I know that was an important part of the petition.
In closing, I thank all those present for taking part in this very important debate, as well as our constituents—all 120,000 of them—who took the time to sign the petition and press us all on this very important matter. I hope that the work that is currently being taken forward across diagnosis and awareness shows the seriousness with which this issue is being taken.
I am pleased that John and Emma Story will be meeting the Secretary of State for Health tomorrow to discuss this further, along with their constituency MP, my right hon. Friend the Member for Kingston upon Hull North and Cottingham (Dame Diana Johnson), who is here for the debate. I am sure that will be a very emotional and powerful meeting for Mr and Mrs Story. I wish them well and, in closing, pay tribute to them again for everything they have done in Lyla’s name to try to ensure that no other family follows in their footsteps.
(3 months ago)
Commons ChamberThe hon. Gentleman will have noted that we have committed to tie-ins for future dentists going through the training programme. It costs the taxpayer hundreds of thousands of pounds to train a dentist, and we believe it is absolutely right that a significant percentage of their time should be put into NHS dentistry.
In terms of improving access, in financial year 2023-24 there was a shocking £392 million underspend on NHS dentistry at a time when demand was going through the roof. I made clear that every penny allocated to NHS dentistry must be spent on NHS dentistry, and I am very pleased to report that we have got that underspend down to just £36 million. The decrease in the underspend is leading to an increase in NHS dentistry, but I accept that there is still a long way to go.
I also put on record my condolences to the family and friends of Colin Pickthall, the former Member for West Lancashire. As the current Member for that seat, it is my privilege to build on his legacy.
We are committed to furthering investment to unlock new treatments and improve outcomes for brain cancer patients, including by investing in cutting-edge equipment to improve access to samples for research. Individual pathology services in England maintain their own standard operating procedures, and they outline local capabilities and practices, but we are continuing to invest in England’s pathology networks to deliver productivity and transformation improvements.
I welcome the Government’s focus on improving survival rates for cancer, particularly in the forthcoming national cancer plan. Will the Minister agree to attend the campaign for Owain’s law event here in Parliament on 3 February and meet the families, who will have travelled from across the country to brief Members of this House on the urgent importance of fixing the current tissue freezing postcode lottery?
We are determined to ensure that everyone who receives a brain tumour diagnosis, regardless of where they live, has access to the latest treatment options. I look forward to meeting Owain’s wife, Ellie, later this month to hear more about their story and the next steps on this topic.