(1 day, 15 hours ago)
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Dr Scott Arthur (Edinburgh South West) (Lab)
I am grateful for the opportunity to bring this vital issue to the House. The term neuroendocrine cancer may not be familiar to many, but tens of thousands of people across the United Kingdom have had to educate themselves after receiving a diagnosis. As with any rare cancer, this is often an uphill struggle marked by delays, misdiagnosis and a persistent struggle for visibility in our healthcare system.
Hon. Members, possibly including the Minister, will have heard me make this point before: a cancer being considered rare does not stop it from impacting many thousands of people right across the UK. Indeed, about 6,000 people are diagnosed with neuroendocrine cancer each year in the UK, which works out at roughly one person every 90 minutes. Today, more than 36,000 people in the UK are living with the condition. To put that into perspective, it is now more prevalent than stomach or pancreatic cancer. The rate of growth is incredibly alarming. Between 1995 and 2018, the incidence of neuroendocrine cancer increased by a staggering 371%. This is not a niche health concern; it is a rapidly growing challenge that our NHS must be equipped to meet.
Statistics can often feel abstract in the Chamber, which is why I want to share the story of a meeting I recently held with three neuroendocrine cancer patients, Liz, Carolyn and Craig, at my office in Fountainbridge in Edinburgh South West. Their stories were both moving and illuminating. We have just been talking about modernising the House of Commons. Given that that meeting took place just four weeks ago, I find it incredible that in four weeks I can meet someone, request a debate and then have that debate, with my favourite Minister answering my questions—it restores my faith in democracy.
Craig, whom I met that day, is in the unique and challenging position of being both a professional advocate and a patient himself. He and the others I met expressed immense gratitude for the care they eventually received, describing it as nothing short of fantastic once they were in the right hands. However, they also spoke about the exhausting battle it took to access specialists who properly understood their condition. They described a system where specialist doctors and centres of excellence are too often hidden behind a wall of referral delays and low clinical awareness. That is particularly in evidence in Scotland, where patients currently face the worst waiting times since records began, but it is also true—albeit possibly to a lesser extent—in our health systems south of the border and in Wales and Northern Ireland.
One of the most powerful parts of our conversation centred on a symptom that is often difficult to discuss yet utterly debilitating: the frequent and urgent need to access a toilet. This is not a minor inconvenience but a symptom that robs people of their autonomy and their dignity. They spoke of how that invisible burden prevents many patients from working, from attending social events and even from leaving their homes for long periods of time. It is a barrier to a normal, fulfilling life.
They also brought a message of hope regarding the drug telotristat. They described how that treatment has quite literally given them back their lives. By managing the symptoms and stopping the cycle of incontinence, the drug has allowed them to return to work, to contribute to their communities, to pay their taxes—that is quite important—and, most importantly, to enjoy a fulfilling family life. This is a clear example of where the right medication does not just treat a disease but restores a person’s dignity and their place in society. It is a powerful reminder that when we invest in the right treatments and pathways, the system burden is reduced because patients are empowered to live independently.
Despite those successes, the single biggest driver of poor outcomes remains the time it takes to get the initial diagnosis. At a meeting I attended at the Royal College of General Practitioners in December, bringing together UK-based healthcare professionals involved in trials, patient care and leading research into neuroendocrine cancer, I heard that, on average, it takes four-and-a-half years for a patient with a tumour to be correctly diagnosed. During that time, the average patient visits their GP 11 times.
Because the cancers can occur anywhere in the body and the symptoms are often non-specific, they are frequently dismissed as more common conditions such as irritable bowel syndrome, asthma, the menopause or anxiety. I hope somebody somewhere is taking a list of all the conditions that get confused with menopause, because I think it is quite a long one. Many patients, including the three who came to visit my office, look perfectly well, even while harbouring the disease. The consequences are severe, however. Over half of all patients are diagnosed at stage 3 or 4, when treatment options are more limited and the cost to the NHS is significantly higher. Neuroendocrine Cancer UK estimates that it costs between £200,000 and £300,000 more per patient when treating at a later stage rather than at an early one.
Currently, the UK has 13 accredited centres of excellence, including a specialist team in Edinburgh and an accredited centre in Glasgow. Those hubs deliver multidisciplinary, evidence-based care that is proven to improve survival rates—yet access remains a postcode lottery. Whether a patient is in rural Scotland or in a coastal town in England, the quality of care they receive should not depend on whether their local hospital happens to have a neuroendocrine lead. In Scotland we see a stark divide between our urban hubs and our rural communities, whereas in England the access issue is more related to the divergent priorities of different cancer alliances. In both cases, patients suffer because we do not have a standardised diagnostic pathway for everyone.
The closest we have to a standardised service, which all neuroendocrine patients can access, is the one that is offered by Neuroendocrine Cancer UK. It provides a critical safety net, offering helplines, counselling and peer support, and it regularly steps up to fund the small-scale, early-stage studies or trials that are needed to get research off the ground. It is sobering that 95% of Neuroendocrine Cancer UK’s income comes from community generosity. It delivers system-critical services that support the NHS, yet it does so with almost no statutory resourcing.
In closing, I ask the Minister to address five specific priority areas. The first is clinical awareness. May we embed neuroendocrine cancer into primary care training and early diagnosis initiatives to stop these patients being lost in the system for years, perhaps reducing the number of GP appointments needed before a diagnosis?
The second area is clear pathways. As I mentioned previously, we need to tackle the postcode lottery when it comes to treatment, and the only way to do that is through a nationally recognised diagnostic and referral pathway to centres of excellence. Will that be considered?
The third area is the guidance gap. Currently, the NG12 guidance is critical to cancer diagnoses in England and Wales. Neuroendocrine cancer is not included in that guidance. May we review whether there could be a way to include it?
The fourth area is data and visibility. Neuroendocrine-specific cancer data is not routinely published. We need that to accurately track the incredible rate at which cases are rising and our response to that. May we also ensure that more data is published more regularly?
The fifth area is research equity. The issue of funding for research into rare cancers was one of the key asks that charities raised with me when I was consulting on my Bill, which is now the Rare Cancers Act 2026. What more can we do to ensure that the Government are using all the mechanisms at their disposal to stimulate research in this rare cancer and all the others that currently fall through the cracks of major funding streams?
In summary, earlier recognition, clearer routes to specialist care and access to life-changing drugs have the protentional to transform outcomes. I look forward to hearing the Minister’s plans to make that a reality.
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.