Minutes of the meeting of the All-Party Parliamentary Group on Pancreatic Cancer
19th November 2012
MPs and Peers present
• Eric Ollerenshaw MP
• Stuart Andrew MP
• Nic Dakin MP
• Mark Durkan MP
• Bernard Jenkin MP
• Wayne David MP
• Lord Patel
• Baroness Morgan of Drefelin
• Lord Aberdare
• Lord Rea
Lord Patel, Chair (LP)
Lord Patel opened the meeting and gave an overview of the importance of early diagnosis, which he said was key to improving outcomes for pancreatic cancer.
Clara Mackay, Charity Director, Pancreatic Cancer UK (CM)
Clara Mackay (CM) provided an overview of issues relating to early diagnosis and its importance saying that only around 80% of pancreatic cancer patients in the UK are diagnosed at a point where they had no hope of curative treatment.
CM noted that, while there are genuine challenges with early diagnosis, the Early Diagnosis Summit held by Pancreatic Cancer UK had identified some practical steps which could be taken, such as a pathway for referral of symptoms. She said that pathways from primary to secondary care for patients with non-specific symptoms are required and that GPs needed to be able to access secondary care clinicians to informally review patients where there are concerns – it is importance to ensure that communication channels exist. CM said that it is important that the 2013 generic cancer symptoms awareness campaign addressed these challenges if it is to make a difference.
Trace Allen, Chair of Pancreatic Cancer UK and pancreatic cancer survivor (TA)
Trace Allen (TA) discussed his diagnosis with pancreatic cancer in 2004, including the symptoms which he had experienced such as stomach pain and jaundice, which led him to go to Accident and Emergency. Following this, TA went to a GP who referred him for an ultrasound – he said he eventually had a scan done privately to avoid the wait.
TA said that he had been lucky in going to A&E, and also in having a GP who had a recent experience of pancreatic cancer and recognised the signs. His cancer had not spread and he was able to be operated upon.
TA compared his experience with pancreatic cancer to his additional experience with prostrate and bowel cancer – saying that these diseases were easier to recognise and treat.
Chris Carrigan (Head, National Cancer Intelligence Network (CC)
CC commented that he recognised the power of data for cancer. CC said that 24% of all cancers were diagnosed through emergency presentation, but that the figure for pancreatic cancer was 50%. He said that this figure ranged from 42% for patients under 50, up to
64% for patients aged over 85.
CC noted that this increased level of emergency presentation led to a significant difference in overall survival – this difference can even be seen in one-year survival levels. He noted that the statistics, which are available on the NCIN website, are very powerful and a source that no other country has. The statistics allow researchers to look at the differences between those who are diagnosed at different stages of pancreatic cancer.
CC also mentioned the UK Bio Bank, which has over 500,000 tissue samples which can be linked back to later diagnoses of pancreatic cancer. He said that they are working on updating the registration process to improve the speed and the timeliness of the data.
CC also suggested that there should be a case review where late diagnosis does occur – he said that this already happens for some cancers which are diagnosed between screening rounds.
Dr Jamie Dalrymple (GP and Chair of the Primary Care Society for Gastroenterology) (JD)
Dr Jamie Dalrymple (JD) explained the role of the Primary Care Society for Gastroenterology (PCSG). He said that diagnosing pancreatic cancer is often frustrating, as many of the symptoms are nonspecific. However, he added that there was a lack of research into pancreatic cancer in primary care, and that every new case should be investigated to help turn non-specific symptoms into specific symptoms. JD said that there was also a need to make sure that GPs were having the right conversations with those in secondary care. He said that all cancers would be present in primary care at some point, even if they were eventually diagnosed in secondary care.
The speeches were followed by general discussion, with members of the audience posing questions to the panel. One of the key areas of discussion is what could be done to enable GPs to consider pancreatic cancer sooner given that many of the symptoms can be attributable to other conditions.
Pancreatic Cancer Action Network noted the pancreatic cancer e-learning module which they had produced with the Royal College of GPs (RCGPs). It was also noted that it could be useful to raise the issue with NICE and the Royal Colleges. Suggestions for patients who should be given particular attention included new presentations of IBS over the age of 45 and new-onset type 2 diabetes in non-obese patients, as well as looking at clusters of symptoms. It was reported that Risk Assessment tools were being piloted in Cancer Networks and an evaluation would be undertaken.
The Department of Health also noted that they were testing local and regional pilots for generic cancer awareness campaigns, which would highlight symptoms which could be associated with a range of cancers. The issue of screening was also discussed, but it was noted that this was a long-way off for patients not considered to be at high risk. Lord Patel thanked everyone for attending and encouraged Parliamentarians to take forward further work on this topic.