Five-year survival rates for pancreatic cancer patients in the UK are amongst the worst in the world and also the worst of the 21 most common cancers. While survival rates for almost all cancers have improved, they have not done so for pancreatic cancer, hardly changing from three per cent for forty years. Deaths from pancreatic cancer actually increased between 2002 and 2013 while deaths from most cancers decreased.

Although pancreatic cancer is the fifth most common cause of cancer death in UK, it received only one per cent of the site specific research funding from the National Cancer Research Institute in 2013. Some research funding also comes from the pancreatic cancer charities. However, those are relatively small charities making small-scale project grants with an annual value of less than £2 million.

A cross-party group of MPs recently held a debate on pancreatic cancer following an e-petition raised by campaigners to push pancreatic cancer up the political agenda and raise its profile. The debate explored what is known about pancreatic cancer and what it can mean for patients and their families.

Pancreatic cancer is termed the “silent killer” because many of its symptoms mirror other, less critical illnesses. Diagnosis by GPs is difficult as symptoms tend to be non-specific and emerge late. Late diagnosis results in many cases in limited treatment options and poor prognosis.

A campaigner had told MPs that she felt fortunate to have had 20 months with her husband post-diagnosis and before his death. The average survival is 2-6 months but others lose their loved ones weeks, or days, after diagnosis.

Almost half of pancreatic cancer patients get their diagnosis after an emergency hospital admission, which is more than twice the total for other cancers. At that point, the disease is more advanced and is associated with poorer survival rates than diagnosis through other routes.

While 75 per cent of all cancer patients are referred to hospital after only one or two visits to their GPs, the experience is very different for pancreatic cancer patients. Over 40 per cent of pancreatic cancer patients visit their GPs three or more times before being referred to hospital, and 16 per cent have to visit their GP or hospital seven times or more before the correct diagnosis is made.

What is the experience of treating a cancer like pancreatic cancer? A doctor working in palliative care told me the following about treating patients with pancreatic cancer: “The issue is not only about survival rates but that pancreatic cancer presents a massive challenge to the NHS in terms of the consequences of this awful disease. The burden of symptoms in patients with pancreatic cancer is substantial in the number of patients affected but also in the intensity of those symptoms. From the research, 75-80 per cent of patients present with pain initially and 44 per cent of the patients admitted to a palliative care setting have severe pain. Many will have neuropathic pain which is often difficult to treat and may require complex pain interventions, including nerve blocks.”

Campaigners and pancreatic cancer charities want to see increased research funding but also a more strategic approach to marshalling high quality research and researchers into pancreatic cancer. The Government should commit to a specific research strategy for those cancer types with the lowest survival rates, based on the lead given by politicians in the United States. In the US, pancreatic cancer is one of a group of “recalcitrant” cancers targeted for specific action because they are big cancer killers with worse survival rates than other cancers.

However, there was no specific mention of, or strategy for, dealing with recalcitrant cancers in the recent NHS Five Year Forward View report. The report focussed more generally on cancer survival being at its highest ever, stating “half of those with cancer will now live for at least 10 years”. Better cancer outcomes are to be welcomed but, with the number of deaths from pancreatic cancer increasing for over a decade, pancreatic cancer is clearly not part of that improving picture.

It is time the Government and the NHS recognised the stark facts about pancreatic cancer and developed a strategy to increase research funding and develop higher quality research, improve awareness of the symptoms and ensure speedier diagnosis of this awful disease.

This article was published in the December Edition of Politics First. Barbara would like to express her gratitude to Pancreatic Cancer UK who provided briefings on which facts in this article are based on.