Osteoporosis and Bone Health
Sharon Hodgson Excerpts(1 week, 2 days ago)
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The Parliamentary Under-Secretary of State for Health and Social Care (Mrs Sharon Hodgson)
It is a pleasure to serve under your chairship, Ms Lewell. I thank my hon. Friend the Member for Dudley (Sonia Kumar) for securing this important debate. She continues to work as a physiotherapist alongside her role as a serving MP, so she brings a wealth of valuable professional clinical experience and knowledge to this debate. I would be very happy to meet her afterwards to discuss her three recommendations.
I also thank her for her as the chair of the APPG on osteoporosis and bone health. As an MP for 21 years, I have done lots of work on APPGs, and I am—as I know our Chair today is—a big supporter of all APPGs. The work they do is so important and can really make changes to policy. My hon. Friend’s APPG does important work in raising awareness of osteoporosis, advocating for improvements to the care that patients receive, and promoting behavioural and system changes that are designed to strengthen bones and prevent osteoporosis.
Osteoporosis is estimated to affect more than 3 million people in the UK, and each year over half a million patients present to hospitals with fragility fractures. It is important that we acknowledge the significant impact that osteoporosis can have on individuals and their loved ones. It can seriously impact every aspect of a person’s life, as we have heard, and has a significant impact on the NHS and the wider economy. We hear too often—as we have today—of patients experiencing painful fractures that could have been prevented, of patients living in fear of having further fractures, and the impact that that has on their independence, wellbeing and quality of life. We recognise the importance of bone health and the benefits that early identification of people at risk of osteoporosis and the prevention of fragility fractures can bring.
The 10-year health plan sets out a vision for a health and care system that delivers more personalised, integrated and proactive care for people with long-term and complex conditions, including osteoporosis and other musculoskeletal conditions. More tests and scans delivered in the community, better joined-up working between services and greater use of technology will all support people in the management of osteoporosis. The neighbourhood health service, supported by the neighbourhood health framework that we published last month, will ensure that people can better access care that is joined up, personalised and designed to proactively meet their needs. Initiatives such as Diagnosis Connect will also directly refer patients to specialist charities at the point of diagnosis for personalised advice, information, guidance and support.
Resources are already in place to help support healthcare professionals in the early diagnosis of osteoporosis, such as the National Institute for Health and Care Excellence clinical knowledge summary on osteoporosis and the prevention of fragility fractures. The Royal College of General Practitioners also has an e-learning module for GPs on the diagnosis and management of osteoporosis, developed in collaboration with the Royal Osteoporosis Society—I am sure that my hon. Friend the Member for Dudley was telling me that she was the chair or the president of the society.
Mrs Hodgson
It must have been another body—I am giving her jobs that she has never had.
That e-module is designed to support the early diagnosis of osteoporosis by highlighting which groups are at higher risk of osteoporosis and fragility fractures.
Progress is being made on increasing early diagnosis and management of osteoporosis. Last year, more than 16,000 extra bone density—or DEXA—scans were delivered compared with the previous year, but we recognise there is still much more we can do. That is why on 1 March, the Government announced funding for 20 new DEXA scanners across England, supported by £2.4 million of investment. Tens of thousands of patients will benefit from faster access to bone scans as a result, and it will help ensure that people with bone conditions, such as osteoporosis, get diagnosed earlier.
Fracture liaison services can play a vital role in reducing the risk of refracture, improving quality of life and increasing years lived in good health, which is what we all want to see. The Government and NHS England support the clinical case for services that help prevent fragility fractures and support the patients who sustain them. We are committed to rolling out fracture liaison services to every part of the country by 2030. Integrated care boards remain well placed to make decisions according to local need. The renewed women’s health strategy published last week sets an expectation that ICBs prioritise community-based models when commissioning new fracture prevention services.
However, we need to be honest about the scale of the action needed, the challenges faced across the health and care system, and that change will not be possible overnight. Musculoskeletal community services have the longest waiting lists of all adult community services in England. We know that patients, including those with osteoporosis, are waiting too long for care and treatment, and that needs to change.
To support people with MSK conditions, such as osteoporosis, to access services when they need them, we are delivering the “Getting it right first time” MSK community delivery programme, which is working to transform MSK community services, reduce MSK community waiting times, improve data and metrics, and implement referral pathways to wider support services. As part of a major transformation of the NHS under the 10-year health plan, patients with MSK conditions, such as osteoporosis, will also soon be able to bypass their GPs and directly access community services, including physiotherapy, pain management and orthopaedics, in the NHS app.
The landmark change will deliver faster treatment for the flare-up of existing conditions, while enabling GPs to focus on more complex cases, reducing pressure on hospitals and freeing up GP practices. As we have heard, osteoporosis affects around one in three women, compared with one in five men. We know that women are at greater risk of osteoporosis due to the decrease in oestrogen production at the menopause, which accelerates bone loss.
Since 2022, two new drugs have been recommended by NICE for the treatment of osteoporosis in post-menopausal women. I was so glad to hear the intervention from my hon. Friend the Member for North Warwickshire and Bedworth (Rachel Taylor), who said she had taken some of those new medications. They help to strengthen bones and prevent bone loss, reducing the risk of fractures. The renewed women’s health strategy published last week sets out our ambition to support healthy ageing, maintain independence and improve quality of life for women, while also reducing avoidable pressure on hospital services.
Turning to work and health, the Government are committed to supporting disabled people and those with health conditions, including MSK conditions such as osteoporosis, with their employment journey. We therefore have a range of specialist initiatives to support individuals to stay in work and get back to work. We are joining up health and employment support around the individual through the WorkWell programme, MSK hubs, the MSK community delivery programme, and the individual placement and support in primary care initiative. Measures also include support from work coaches and disability employment advisers in jobcentres, and access to work grants.
We also recognise the benefits of physical activity in improving bone strength and reducing the risk of fractures. We are exploring ways to expand access to MSK physical activity hubs in the community, enabling the delivery of evidence-based physical activity interventions for individuals with MSK conditions. By aligning with employment support at local level, this project will seek to improve both health and work outcomes for people with MSK conditions, such as osteoporosis, while prioritising those experiencing unmet MSK health needs and living in areas of deprivation, with the aim of addressing health inequalities.
I thank my hon. Friend the Member for Dudley again for securing this important debate and all the work she does in this area, and I thank other hon. Members for being present and for raising insightful points during the debate. I hope hon. Members are reassured by some of the measures I have outlined. I recognise that we must go further, but I reaffirm the Government’s commitment to support the millions of people in the UK who are living with osteoporosis to ensure that they get the support they need, including improved diagnosis and management. I look forward to meeting with my hon. Friend.
Question put and agreed to.
Sudden Unexpected Death in Epilepsy
Sharon Hodgson Excerpts(1 week, 2 days ago)
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The Parliamentary Under-Secretary of State for Health and Social Care (Mrs Sharon Hodgson)
I thank the hon. Member for Didcot and Wantage (Olly Glover) for securing this important debate. At the outset, I will say that I am happy to meet him to discuss all the action points he raised at the end of his speech—and as for where that meeting will take place, we can discuss that.
Sudden unexpected death in epilepsy, or SUDEP for short, is a vitally important issue for those directly and tragically affected, and for many Members. We must learn lessons when deaths occur and make the changes needed. We must also ensure timely access to the right specialist support for people with epilepsy. We must tackle long waits for neurology appointments, and continue to build the evidence base, so that innovative treatments, such as medicinal cannabis, where clinically appropriate, are available in a safe and consistent way. I will set out the actions that we are taking with the NHS and partners to reduce risks as well as improve outcomes for people living with epilepsy.
First, there is a statutory duty for organisations to respond to a prevention of future deaths report issued by a coroner when their investigation identifies circumstances that create a risk of future deaths. That provides a clear mechanism for organisations to set out the actions that they will take to address those risks. Alongside the PFD process, it is essential that the NHS continues to strengthen how it identifies and acts to mitigate risk in day-to-day epilepsy care. That is why, when it comes to epilepsy, we are working with the NHS and partners to embed structured risk assessments and consistent risk communication in routine practice, so that known risk factors are identified early, addressed where possible, and discussed openly with patients and families, in line with best practice.
Cutting waiting lists, including for neurology services, is a key priority for this Government. We have committed to achieving the NHS constitutional standard, which is that 92% of patients should wait no longer than 18 weeks from referral to treatment, by March 2029. We have already delivered 5.2 million additional elective appointments in our first year in government. Waiting lists overall are coming down, but we recognise that they remain too high, with neurology remaining a particularly challenged specialty.
For patients with epilepsy, timely access to specialist advice, supported by clear referral routes and co-ordinated care across primary care, community services and hospitals, is critical to good outcomes. Nationally, NHS England’s neurology transformation programme developed a model of integrated care to support integrated care boards in delivering the right service at the right time to patients, as close to home as possible.
For those with refractory epilepsy who need highly specialised input, NHS England’s updated service specification for specialised adult neurology services is clear that specialised neurology centres must include services for the assessment and management of refractory epilepsy.
Progress is being made on the treatment backlog. Between February 2025 and February 2026, the number of incomplete neurology pathways reduced by over 10,000, the average waiting time reduced from 16.5 weeks to 15 weeks, and the proportion of patients seen within 18 weeks increased to 57.9%. We will continue to work with the NHS to improve access and reduce delays for patients, including those with epilepsy, and families.
Research is central to improving outcomes for people with epilepsy. The Department funds research into epilepsy through the National Institute for Health and Care Research—the NIHR—and, in the five years from April 2020 to March 2025, we committed almost £19 million to 15 epilepsy research projects. The NIHR welcomes applications on all topics, including epilepsy.
I fully understand why patients and families continue to press for safe and equitable access to medical cannabis, particularly for children with drug-resistant epilepsy. There is one licensed cannabis-based medicine, Epidyolex, that is available for prescribing on the NHS, where clinically appropriate, following clear evidence of its safety and clinical and cost-effectiveness. Most cannabis-based medicines that patients are seeking are unlicensed and have not been assessed for their safety, quality or effectiveness. Until the evidence base improves, the NHS will not routinely fund them, and clinicians will rightly be cautious about prescribing. That is why, through NIHR and NHS England, the Government are investing over £9 million in clinical trials of cannabis-based medicines for drug-resistant epilepsy, to strengthen the evidence and support consistent, safe decision making.
We know that around 30% of people with epilepsy have a learning disability, as my hon. Friend the Member for Lichfield (Dave Robertson) set out, and that the risk of SUDEP is higher for those with a learning disability. The most recent “learning from lives and deaths” report found that epilepsy was one of the most common underlying causes of death for people with a learning disability between 2021 and 2023. That highlights how crucial it is that information and support for patients with epilepsy who have a learning disability is tailored to their individual needs.
Dave Robertson
I thank the Minister for delineating everything that the Government are doing to support people with epilepsy. I was fortunate enough to secure an Adjournment debate a couple of months ago to talk about the Clive Treacey safety checklist. The Under-Secretary of State for Health and Social Care, my hon. Friend the Member for Glasgow South West (Dr Ahmed), said at the Dispatch Box that he expects every NHS trust to follow that checklist. Does she agree with him, and will she send the message that all trusts must follow that checklist?
Mrs Hodgson
I welcome the development of the Clive Treacey safety checklist. It is an important part of Clive’s legacy, notwithstanding the comments that my hon. Friend made about his legacy being much wider than that. We would encourage commissioners and service providers to use the checklist and its accompanying guidance as a key tool when designing services for their local populations, and to ensure that steps outlined in the checklist are followed whenever a patient experiences a significant change in their care. We hope that is being rolled out, followed and used.
At the national level, there are a number of programmes and tools supporting safer, more consistent epilepsy care. NICE guidance recommends that people with a learning disability have monitoring reviews at least annually, and information should be tailored and adapted. They should have access to specialist care and co-ordinated, multidisciplinary support. NICE is clear that where young people are transitioning into adult services, planning should begin early. While NICE guidance is not mandatory, the Government expect commissioners and service providers to take it fully into account when making decisions on how best to meet the needs of their local communities.
NHS England’s RightCare programme has developed an epilepsy toolkit to support commissioners and clinicians in improving epilepsy care and reducing preventable deaths. The toolkit makes structured risk assessment and risk reduction, and proactive conversations about SUDEP, a core part of guidance, and it signposts practical resources, such as the SUDEP and seizure safety checklist, to support consistent risk communication in line with NICE guidance.
Health Education England, which is now part of NHS England, has developed an epilepsy programme in collaboration with SUDEP Action. That includes evidence-based training modules, delivered through the NHS England e-learning for healthcare platform, covering practical diagnosis and management, medication adherence and SUDEP risk factors. Alongside that, Government-supported frameworks, including the national bundle of care for children and young people with epilepsy, are helping to drive more equitable access to timely intervention and rehabilitation.
In closing, I thank the hon. Member for Didcot and Wantage for securing this very important debate; it is great to see it so well attended. I thank all hon. Members who took part in it and made interventions, including my hon. Friend the Member for Bracknell (Peter Swallow), the hon. Member for Strangford (Jim Shannon), and my hon. Friends the Members for Stroud (Dr Opher), for Lichfield, and for Southgate and Wood Green (Bambos Charalambous). They made a number of very important points, and if I need to follow up on any of them with colleagues in other Departments or in my Department, I definitely will.
I also thank those with lived experience of epilepsy, and the families who have lost loved ones to SUDEP. Their courage in speaking out continues to drive change through the work that we do in this place. We will continue to work with partners across the health system to support people with epilepsy and, ultimately, reduce deaths from epilepsy.
Question put and agreed to.
Meningitis B: Dorset
Sharon Hodgson Excerpts(1 week, 3 days ago)
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The Parliamentary Under-Secretary of State for Health and Social Care (Mrs Sharon Hodgson)
I am updating the House on the recent cases of meningococcal disease in Dorset.
As of 9 am on 21 April, the UK Health Security Agency has confirmed three cases of meningococcal disease among young people in Weymouth, Dorset. These three cases have been confirmed as meningitis B and are the same sub-strain serotype P1.19, P1.15. UKHSA has confirmed that these cases are not linked to the recent outbreak of meningococcal disease in Kent. The onset dates of these cases were between 17 March and 12 April. Close contacts of the patients were offered antibiotics as a precaution.
Two of the cases attend Budmouth academy but are in different year groups and are contacts of each other via a social network not related to the school. Currently no confirmed epidemiological link has been made between these two cases and the third individual who attends Wey Valley academy. This may mean that this strain of menB bacteria is transmitting more widely among young people in Weymouth. Due to this, and as a precautionary measure, antibiotics and the Bexsero vaccine are being offered to young people currently in school years 7 to 13 (or equivalent in terms of age), or anyone not in full-time education who would be in one of these year groups, who study or live in the Weymouth, Portland and Chickerell areas of Dorset. UKHSA and Dorset council have issued advice to staff, parents and carers at all educational settings in the area.
A single dose of antibiotics is effective at reducing transmission. UKHSA has currently deployed 6,500 doses of stockpiled antibiotics to the local area. The roll-out began on Saturday 18 April 2026, initially for pupils who attend Budmouth academy and Wey Valley schools, as the cases attend these settings. Pupils that attend other schools and colleges and other eligible children and young people in Weymouth who do not attend education settings will be invited to receive antibiotics and vaccination over the course of this week.
As of 5 pm on 20 April, antibiotics have been given to 2,226 individuals.
We are not recommending any precautionary measures for schools or other educational settings in Dorset outside of the Weymouth area at this time as the risk to others is very small.
This response is in line with UKHSA guidance on meningitis and is being rapidly co-ordinated and delivered by UKHSA, Dorset council, the NHS, the Department for Education and local education settings.
UKHSA is providing support to education settings, in close partnership with the Department for Education. All affected education settings in Weymouth remain open and events involving children and young people should continue as normal. UKHSA has published up-to-date information to ensure parents and concerned members of the public can find the latest information on how the incident is being managed and who can access antibiotics and vaccines: https://www.gov.uk/government/news/antibiotics-and-menb-vaccination-to-be-offered-to-young-people-in-dorset
Children and young people should attend their education setting normally, unless specifically told otherwise by a health professional. Attendance supports the education, health and wellbeing of children and young people.
As the Secretary of State for Health and Social Care told the House on 17 March in the context of the recent meningococcal disease outbreak in Kent, I have asked the Joint Committee on Vaccinations to re-examine eligibility for meningitis vaccines to assess, for example, an expanded offer to older children and/or young adults. JCVI will provide updated advice to the Department this summer around whether, and to what extent, a vaccine programme for older children and/or young adults would be clinically effective as well as an assessment of the cost effectiveness of such a vaccination programme.
Meningococcal disease is a serious illness that can cause meningitis—an inflammation of the protective membranes surrounding the brain—and sepsis (blood poisoning). Symptoms include a rash that does not fade when pressed with a glass, sudden high fever, severe or worsening headache, stiff neck, vomiting or diarrhoea, joint or muscle pain, dislike of bright lights, cold hands and feet, seizures, confusion or delirium, and sleepiness or difficulty waking. The onset can be extremely rapid. Anyone experiencing symptoms should urgently seek medical attention. Early treatment saves lives.
Around 300 to 400 cases of meningococcal disease are diagnosed in England every year. It is important for teenagers not only to take up the MenACWY vaccine routinely offered by the NHS, but also to be aware that this vaccine does not protect against menB, which is why knowing the symptoms and seeking early treatment is so important. It is important that those who are eligible for antibiotics and vaccinations do come forward and take up the offer, as this will help to reduce the risk of more young people becoming unwell.
I want to thank everyone who has worked tirelessly to care for those affected and keep people safe: the UKHSA, the Department for Education, Dorset Council and public health officials working to contain the outbreak; the NHS teams administering antibiotics and vaccines, and those who have cared for young patients in hospital; the school staff keeping students and parents informed, helping young people through this outbreak, and keeping their education going; and the thousands of students, pupils, and other members of the public who have so readily and responsibly come forward for antibiotics.
[HCWS1532]
Neuroendocrine Cancer
Sharon Hodgson Excerpts(2 weeks, 1 day ago)
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The Parliamentary Under-Secretary of State for Health and Social Care (Mrs Sharon Hodgson)
I 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.
Oral Answers to Questions
Sharon Hodgson Excerpts(2 weeks, 3 days ago)
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The Parliamentary Under-Secretary of State for Health and Social Care (Mrs Sharon Hodgson)
Thank 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?
Mrs Hodgson
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.
Munira Wilson (Twickenham) (LD)
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?
Mrs Hodgson
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)
The Parliamentary Under-Secretary of State for Health and Social Care (Mrs Sharon Hodgson)
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?
Mrs Hodgson
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?
Mrs Hodgson
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?
Mrs Hodgson
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?
Graham Stuart (Beverley and Holderness) (Con)
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?
Mrs Hodgson
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.
Dr Caroline Johnson (Sleaford and North Hykeham) (Con)
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?
Mrs Hodgson
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.
Dr Johnson
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.
The Secretary of State for Health and Social Care (Wes Streeting)
No, it wasn’t—not at all.
Mrs Hodgson
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?
The Parliamentary Under-Secretary of State for Health and Social Care (Mrs Sharon Hodgson)
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.
Gareth Davies (Grantham and Bourne) (Con)
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?
Young Cancer Patients: Experiences and Outcomes
Sharon Hodgson Excerpts(2 weeks, 4 days ago)
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The Parliamentary Under-Secretary of State for Health and Social Care (Mrs Sharon Hodgson)
I 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?
Mrs Hodgson
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.
Ehlers-Danlos Syndrome and Craniocervical Instability
Sharon Hodgson Excerpts(1 month ago)
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The Parliamentary Under-Secretary of State for Health and Social Care (Mrs Sharon Hodgson)
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.
Dr Neil Hudson (Epping Forest) (Con)
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.
Mrs Hodgson
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?
Mrs Hodgson
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?
Mrs Hodgson
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?
Mrs Hodgson
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.
Jim Shannon
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.
Mrs Hodgson
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.
Gill Furniss (in the Chair)
I call Josh Newbury, with two minutes to wind up.
Pandemic Preparedness Strategy
Sharon Hodgson Excerpts(1 month ago)
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The Parliamentary Under-Secretary of State for Health and Social Care (Mrs Sharon Hodgson)
I 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]
Endometriosis Services
Sharon Hodgson Excerpts(1 month, 1 week ago)
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The Parliamentary Under-Secretary of State for Health and Social Care (Mrs Sharon Hodgson)
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.
Dr Evans
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.
Mrs Hodgson
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.
Mims Davies
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.
Mrs Hodgson
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.
Tulip Siddiq
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.
Mrs Hodgson
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?
Mrs Hodgson
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.
Sudden Unexpected Death in Childhood
Sharon Hodgson Excerpts(1 month, 1 week ago)
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The Parliamentary Under-Secretary of State for Health and Social Care (Mrs Sharon Hodgson)
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.
Jim Shannon
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?
Mrs Hodgson
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.
Dr Caroline Johnson
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.
Mrs Hodgson
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?
Mrs Hodgson
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.
Sir John Hayes (in the Chair)
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.