Minutes of the meeting of the All Party Parliamentary Group on Pancreatic Cancer
16th May 2012

MPs and Peers present

Lord Patel
Eric Ollerenshaw MP Baroness Morgan of Drefelin
Nic Dakin
Baroness Masham
Lord Turnberg
Lord Smith of Clifton Bishop of Hereford John Leech MP
Lord Aberdare Tony Baldry MP Rosie Cooper MP Pauline Latham MP Nick Boles MP
Jim Cunningham MP Fiona Bruce MP

Inaugural election of officers

The officers were confirmed as follows:

• Lord Patel (Chair)
• Baroness Morgan of Drefelin (Vice Chair)
• Nic Dakin MP (Treasurer)
• Eric Ollerenshaw MP (Secretary)

Speakers

Alexandra Ford, Chief Executive, Pancreatic Cancer UK
Alexandra Ford discussed the Study for Survival report produced by Pancreatic Cancer UK and its key findings – poor survival rates, poor patient experience, lack of funding for research, etc. She said that Pancreatic Cancer UK has two main goals – to improve survival rates for pancreatic cancer and to improve the experience for all patients.

AF said that Pancreatic Cancer UK were very pleased with the response to the Campaign for Hope, including the number of Parliamentarians who had supported the Campaign and the fact that the responsible Minister, Paul Burstow, had been willing to meet.

AF noted that the APPG had been set up in response to Parliamentarians. Pancreatic Cancer UK will provide the secretariat, but are pleased to see that other pancreatic cancer charities want to be involved. The next meeting of the group will be in November, as part of Pancreatic Cancer Awareness month.

Professor David Tuveson, researcher, Cambridge Research Institute
Professor David Tueveson talked about his work in pancreatic cancer research in Cambridge, which he has been involved in for six years. He said that since he started working in this area, awareness of pancreatic cancer has risen but survival rates are still low and pancreatic cancer generally remains a lethal disease. He discussed the lack of access to clinical trials.

In terms of improving outcomes, DT said that the main ways of doing this would be to detect the disease earlier and to continue work on finding a cure.

DT also discussed the “nihilism” around the disease, saying that many GPs thought that it was best to encourage a patient to get their affairs in order rather than try to be cured.

Finally, DT said that an increasing number of people are entering the field of pancreatic cancer research, and that a little bit of money could go a long way.

John Sproson, Pancreatic Cancer Voice
John explained to the group that he was lucky to be here. Having been put into a fast moving system by his GP, he was given chemotherapy with a 30% chance of success. John mentioned that he objected to being talked down to by clinicians and that he got in touch with Pancreatic Cancer UK, who were able to help him ask the right questions.

JS said that he was able to get into a clinical trial, and was referred to a team in Guildford with a “can do” attitude.

JS said that he had now been told that his tumour has shrunk and then stabilised. He said that the team in Guildford were able to organise transport for him, meaning that he avoided a lot of stress during his treatment. He went on to say that chemotherapy was followed by radiotherapy, and that he had suffered from relatively few side effects.

In terms of improving outcomes, JS said that there was a need for a greater focus on early diagnosis. He also said that organisations needed to share best practice, particularly good ones such as the team in Guildford.

General Discussion

The speeches were followed by general discussion, with members of the audience posing questions to the panel.

Post a comment