My Lords, I greatly welcome the amendments proposed by my noble friend. In fact, I put my name to the equivalent amendments earlier, proposed by my noble friend Lady Morgan of Cotes. I rise to speak to my Amendment 294, the purpose of which is to draw attention to the dire state of the services and treatment offered to people suffering from cancer of the pancreas—although I could also say that there are other, equally forgotten and equally deadly cancers, such as bile duct cancer, that deserve a debate as well. I am grateful to my noble friend Lord Vaizey of Didcot and to the noble Lords, Lord Patel and Lord Aberdare, for their support of the amendment.
Many of us have seen family members and friends fall prey to this disease. Pancreatic cancer is the deadliest common cancer. It affects 10,000 people a year across the UK, and more than half will die within three months. Three in four will die within a year. Vague symptoms, lack of a simple early test, and low symptom awareness among both the public and primary care professionals result in three in five people with pancreatic cancer being diagnosed at a late stage, when curative treatment and life-saving surgery are no longer possible.
Research into pancreatic cancer has been underfunded for decades: it receives only 3% of the UK cancer research budget, despite being the deadliest common cancer. The result is that pancreatic cancer has the lowest survival rate of all common cancers, with five-year survival rates less than 7%. Five-year survival in the UK lags behind the rest of the world, with the UK ranking 29th out of 33 countries with comparable data. These survival statistics have barely improved in decades.
In addition, there is an unacceptable variability of services for pancreatic cancer sufferers, depending in part on geography, with those living near the few specialist centres able to access some services barely available elsewhere.
I wrote last year to my noble friend Lord Bethell with a particular suggestion being promoted by the small but excellent charity Pancreatic Cancer UK. In due course, on 1 December, I received a reply from my honourable friend Maria Caulfield, who said that NHS England and NHS Improvement had launched an audit of pancreatic cancer services with a view to reducing variations in treatment and improving outcomes. That is wholly welcome. The information we have nationally on pancreatic cancer treatment in the NHS is woefully poor. An audit is a good place to start. But she went on to say that the first data were expected in 2023—not the report, not the action plan that we need, and not the funding allocation, merely the first data.
My amendment seeks to impose certain reporting obligations on the Secretary of State, but its real purpose, and the real purpose of this debate, is to inject some urgency into the Government and the NHS. We cannot afford to wait years just to begin to understand the state of pancreatic cancer treatment and care, let alone to take action to improve outcomes. Pursuing the audit with urgency and dispatch should be a top government priority.
There is one thing the Government could do right away that would at least alleviate the suffering of pancreatic cancer patients—and this indeed is the subject I wrote to my noble friend Lord Bethell about at the urging of Pancreatic Cancer UK. The symptoms caused by pancreatic cancer have a very distressing impact. In particular, people are often unable to digest their food, ultimately starving the body of nutrients and calories, leading to rapid weight loss, malnutrition and loss of muscle mass.
The solution to these symptoms is pancreatic enzyme replacement therapy—PERT. PERT comes in tablet form; you take it with your food. It replaces the digestive enzymes that many people with pancreatic cancer can no longer produce. Taking the tablet helps food to be digested and absorbed by the body, and can vastly improve people’s quality of life. It can also, crucially, help them to gain the strength needed to undergo treatment. If people have lost weight and are too weak, they are sometimes not able to have surgery for that reason. NICE guidelines clearly recommend PERT for people with pancreatic cancer, whether the cancer is operable or inoperable, and there is widespread clinical consensus on its effectiveness. It is widely available and is cost-effective: it costs the NHS just £7 per day per patient.
However, a recent study has shown that only half the people with pancreatic cancer across the UK are prescribed PERT. The May 2021 RICOCHET study, undertaken by the West Midlands Research Collaborative, found that 50% of pancreatic cancer patients were not being prescribed the tablet they needed to digest food. The key reason people are not being prescribed PERT currently is a lack of dissemination of specialist knowledge about pancreatic cancer and the benefits of PERT to general healthcare settings. PERT is more likely to be prescribed in specialist surgical centres than in general hospitals, meaning that people whose cancer is operable are more likely to be prescribed PERT than those whose cancer is inoperable, because people whose cancer is operable are more likely to be moved to a specialist setting.
However, three in five people with pancreatic cancer are not diagnosed until their cancer is at an advanced stage and no longer operable, so they will tend to be treated with palliative care in a non-specialist setting. This means they will be far less likely to be prescribed PERT than if they had been diagnosed early.
What I would hope to hear my noble friend the Minister say this evening is that without waiting for the results of the audit, he will immediately set a national priority that PERT should be routinely prescribed as a feature of pancreatic cancer care. Without setting this focus and without corresponding leadership from national and local health bodies, knowledge and expertise will continue to spread far too slowly for the people with the quickest-killing cancer.