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.