Meeting of the Parliament 05 November 2024
It is an unusual night when we have two members’ business debates back to back. Nonetheless, we have had a sea of purple all evening in the gallery with those who have come to recognise and mark both world pancreatic cancer day, which is on 21 November 2024, and the fact that November marks pancreatic cancer awareness month.
I welcome to the gallery many people from Pancreatic Cancer UK with whom I have campaigned over the years—Dawn Crosby, Carol O’Connor, Ian Thomson, Wendy Thomson and Brian Green—and those from Pancreatic Cancer Action Scotland who have joined us this evening—Fiona Brown, Ross Carter and, as always, the person who has inspired me to do this every year, Lynda Murray.
We know and have discussed many times the issues around pancreatic cancer, why it is such a problematic cancer and why it is so important that we shine a light on the issues around it every year. It feels as though pancreatic cancer has been left behind, receiving just 3 per cent of the UK cancer research budget. Pancreatic Cancer UK’s recent announcement of almost £600,000 in funding for research that is taking place in Scotland into early diagnosis and treatment for the disease is very welcome. The announcement acknowledges how important that research will be, as only three out of 10 people will receive any treatment after diagnosis, which is the lowest proportion of all cancer types. It also acknowledges that, as we know, half of people with the cancer will die within three months of diagnosis.
This year, we have also been alerted to the fact that there is a shortage in available pancreatic enzyme replacement therapy—PERT—that will directly affect the quality of life of those who are living with pancreatic cancer and other conditions. We commend the health professional and pancreatic cancer charities for coming together to develop holistic support and guidance on what to do if a patient is running low on or cannot get PERT. I will discuss that further later.
As always, we must thank the campaigners in the gallery who have worked tirelessly during the year to raise funds and to educate the public on the symptoms of pancreatic cancer. We also thank those brave campaigners who, over the years, have shared the experiences of their loved ones as well as their own situation with pancreatic cancer. Very few survivors can come and speak to us, for all the reasons that I have just outlined, but there are people who have managed to survive for more than 10 years who are a very small part of the pancreatic cancer community.
As always, we need to shift the narrative to better outcomes for people who are living with pancreatic cancer. The devastating impact that it has on someone’s personal life needs to change. It is the deadliest common cancer in Scotland. Only one in four people who are diagnosed with pancreatic cancer survives beyond one year, and the five-year survival rate in Scotland is only 7.3 per cent. Across other cancers, the average five-year survival rate is 69 per cent. That is the quantum and scope of the issue with pancreatic cancer and the reason why we have to shift the dial for those who have been diagnosed.
Approximately 900 people in Scotland are diagnosed with pancreatic cancer every year, and there are more than 10,500 cases in the UK. It is the 12th most common cancer in Scotland, but it is responsible for the sixth-highest number of cancer deaths—a disproportionate effect for those who are suffering with it.
Hard-to-treat cancers must be a priority, and there is a clear need for research. Cancer Research UK notes that the overall survival rate for most cancers has doubled in the past 50 years, but survival rates for pancreatic cancer have barely shifted. More than 80 per cent of people with pancreatic cancer are diagnosed at a late stage. That emphasises the need for targeted research so that we can better understand the pathology of the disease and improve the treatment pathway and patient support.
I mentioned PERT shortages earlier. PERT is a capsule that can help people to manage the digestive symptoms of pancreatic cancer, cystic fibrosis, neuroendocrine cancer and pancreatitis. It is taken with food and it replaces the vital enzymes that help people to break down and get nutrients from their food, as that does not happen naturally for people with such illnesses.
The absence of PERT can have a devastating impact on people’s lives. Without access to it, people can become malnourished—can even literally starve to death. In the past nine months, there have been intermittent shortages across the United Kingdom, which is expected to be an issue until at least 2026. That is due to a lack of the raw material that is used to make PERT, and limited manufacturing capacity. We are therefore calling on the UK Government to develop a national action plan to proactively address and resolve PERT shortages. The UK Government must ensure that the UK’s PERT market share matches the demand for PERT across the UK. That includes ensuring that alternative brands of PERT are imported if required.
I will mention the Scottish hepato-pancreato-biliary—Scot HPB—pathway pilot. Ross Carter, the clinician who has been fundamental to that pilot, is in the public gallery this evening. The HPB cancers pathway is a diagnostic pathway pilot that offers people who are diagnosed with pancreatic or liver cancer in Scotland the biggest hope of accessing treatment as quickly as possible. I restate that most pancreatic cancer patients are diagnosed at a very late stage. I have worked with and had the pleasure of seeing the work that Dr Carter and Lynda Murray have led for a long time. The Government extended the pilot, with a view to its being embedded into the pathways for cancer. I am interested in hearing the minister’s view on what might happen next with that pathway.
Again, I thank the people in the gallery for all the work that they do in highlighting the issue and the challenges of pancreatic cancer and in educating people on its symptoms, to ensure that most people are aware and get the help that they need in a timely manner.
17:32