MINUTES OF THE APPG MEETING OF 28th June 2016, 10:30am
Parliamentary Members in attendance:
Stuart Andrew MP; Nic Dakin MP (Chair); Mark Durkan MP; Baroness Masham; Lord Porter of Spalding; Nick Thomas-Symonds MP.
External Members and members of the public:
Maggie Blanks (CEO of Pancreatic Cancer Research Fund);Joe Brice (Shire); Charlotte Dawkins (Celgene); Jennifer Farr (APPGPC Member); Alex Ford (CEO, Pancreatic Cancer UK); Doug Goodman (APPGPC member); Andrew Hart (President, Pancreatic Society of Great Britain and Ireland); Anna Jewell (Pancreatic Cancer UK); John Lancaster (HPB CRG NHS England Patient Representative); Andrew Miller (Consultant Gastroenterologist); Leah Miller (PCUK – Secretariat to the APPG); Satvinder Mudan (Consultant Surgeon, Royal Marsden Hospital); Preth Rao (Head of Campaigns and Policy PCUK); Linda Reardon (PCUK Supporter) Kim Rowan (PCUK Supporter); Susan Speece (APPGPC Member); Ali Stunt (CEO Pancreatic Cancer Action); Maggie Watts (pancreatic cancer awareness campaigner
1. WELCOME AND INTRODUCTION
Nic Dakin (Chair) welcomed everyone to the meeting. He explained that the meeting was the Group’s AGM, meaning it would focus on the election of Officers to the Group and on planning the All Party Parliamentary Group’s (APPG) future work programme.
Apologies had been received from Lord Aberdare, Richard Benyon MP, Graham Brady MP, Sir Oliver Heald MP, Baroness Morgan, Lord Patel and Baroness Walmsley.
3. AGM election of Officers for 2016/17
The Chair explained that as this was as AGM, it would include the election of Officers for the next reporting year. He asked the Secretariat to state who was currently an Officer of the APPG.
Leah Miller (LM) explained that Mark Durkan, Stuart Andrew, Baroness Morgan, Lord Patel and Lord Aberdare were currently Officers of the APPG, whilst Nic Dakin served as Chair.
The Chair asked if all members were happy for him to continue serving the APPG as Chair. All members agreed that Nic Dakin should continue as the APPGPC Chair.
The Chair asked whether parliamentary members were happy for them all to continue to serve the APPG as Vice-Chairs. All members present agreed.
The Chair then proposed that Nick Thomas-Symonds and Lord Porter also be appointed Officers of the APPG, to which there were no objections.
Subsequently, Lord Aberdare, Stuart Andrew, Mark Durkan, Baroness Morgan, Lord Patel, Lord Porter and Nick Thomas-Symonds were elected as Vice-Chairs of the APPG. Nic Dakin was reconfirmed as Chair.
4. Minutes of the last meeting.
The Chair asked the Group to read through the minutes from the last meeting and make sure they were happy with them. No amendments to the minutes were made and they were signed off.
5. Group Secretariat & Future working practices
The Chair explained that Pancreatic Cancer UK had acted as Secretariat of the APPG on Pancreatic Cancer since it was first established in 2012. This meant the charity clerked meetings, arranged events and produced reports for the APPG. He asked whether members were happy for the charity to continue in that role. Members present confirmed that they were.
The Chair explained that clear protocol was now in place to ensure that all the key pancreatic cancer charities have equal input into the work of the APPG.
To make the APPG more transparent, inclusive and robust, the Group would be amending its working practices so that stakeholders were kept better informed of decisions and were better able to contribute ideas.
In practice, this would mean sending out six monthly updates on the APPG’s work plan and asking for any feedback and comments. Forward plans would also be sent out prior to any AGM.
Ali Stunt (AS) thanked and congratulated the Secretariat for their work.
6. Review of APPG work and achievements since 2012
LM gave a summary of the APPG on Pancreatic Cancer’s work since 2012.
She explained that the APPG on Pancreatic Cancer was formed in 2012. Following the 2015 General Election, the APPG was reconstituted and Nic Dakin MP was elected Chair, replacing Eric Ollerenshaw.
During the last parliament, the Group held two Inquiries that each led to the publication of an authoritative report.
The first Inquiry in 2013 focused on awareness, early diagnosis, treatment and care of pancreatic cancer. Written and oral evidence was gathered from patients, carers, clinicians and charities, as well as from the NHS itself. The Inquiry then led to the report entitled ‘Time to Change the Story: A plan of action for pancreatic cancer.’
The subsequent Inquiry ran over the course of 2014 and looked at how to increase the quality and quantity of research into pancreatic cancer in the UK. Four oral evidence sessions were held and written evidence was received from 12 respondents, all of which helped to produce the report called ‘Pancreatic Cancer Research: A roadmap to change.’
The Group held 3 annual receptions in the House of Commons in 2013, 2014 and 2015, the latter two to launch the reports produced in those years.
The Secretary of State for Health attended the receptions in both 2014 and 2015. The Public Health Minister also attended the 2015 reception.
In 2015, the APPG published a follow-up report to the 2013 and 2014 inquiries, entitled “Pancreatic Cancer and Care: A Health Check”. The report looks at progress made implementing the APPG’s recommendations since the publication of the reports.
Since the reconstitution of the APPG in June 2015, the APPG has held two meetings. The first, held in October, looked at the follow-up report and included a discussion on the removal of Abraxane from the CDF. The other, held in March 2016, focused on pancreatic cancer research.
APPG Members led campaigning efforts in both Houses to improve patient access to new treatments and to improve on current standards of awareness, diagnosis research and patient care, by asking Parliamentary Questions and taking part in debates. In addition to adjournment debates, the Group helped to ensure and make a success of the Backbench Business Committee Debate of September 2014, which was triggered by an e-petition started by Mrs Maggie Watts.
The Group was also instrumental in ensuring the new chemotherapy drug, Abraxane, was added to the Cancer Drugs Fund List for England in March 2014, although it was unfortunately delisted in September 2015.
Following the de-listing of Abraxane from the CDF and NICE’s decision not to recommend the drug for approval, the APPG signed two joint letters to the Department of Health calling on the Secretary of State for Health to intervene to ensure Abraxane remains available to patients in England. A disappointing, but not unexpected, response to the first letter had been received from Life Sciences Minister George Freeman, stating that the decision was one for NICE.
In February 2016, the APPGPC responded to the NICE/NHSE consultation on changes to the CDF.
The APPG on Pancreatic Cancer has also joined other cancer APPGs to coordinate work on areas of common interest. Two closed meetings were held last year, one on the Cancer Strategy and another on changes to the CDF. The APPG will continue to work with other cancer groups on areas of shared interest.
The APPG recently issued a joint response with PCUK, PCA and PCRF to the APPG on Cancer’s Inquiry into the Cancer Strategy. The response stressed the importance of the Cancer Strategy delivering for all cancer patients, including those with the lowest survival.
Andrew Hart (AH) also highlighted that the Chair, Nic Dakin, had written to the Royal College of Physicians regarding the development of a medical curriculum for training in medical pancreatology.
A letter had also been sent to Chair of the NICE Guideline Development Group Professor John Primrose regarding the development of a Clinical Guideline and Quality Standard for Pancreatic Cancer and the need for this to address supportive medical treatments.
Baroness Masham (BM) asked for an update on the Cancer Drugs Fund (CDF).
LM explained that Abraxane had been delisted from the CDF in September 2015, and had not been available to patients in England since its removal in November 2015.
NICE and NHSE had earlier this year consulted on future arrangements for the CDF, which would see NICE take over management of the fund. An announcement on the new operating system was expected soon and the new arrangements would be in place from July. The APPG and pancreatic cancer charities had fed into the consultation process, raising concern over how the new system would impact access to new treatments for pancreatic cancer patients. The APPG would continue to monitor the situation.
Joe Brice (JB) added that NHSE would be holding a webinar on the SoP for the new CDF arrangements soon.
Nick Thomas-Symonds (NTS) highlighted that although Abraxane was not available to patients in England, it was available to patients in Wales and Scotland.
7. Discussion around next year’s work plan
The Chair said that the main focus of the meeting would be on determining a plan for the APPGPC’s work over the next year.
He drew attendees’ attention to the draft Forward Plan, which set out ideas for future meetings. He suggested that the task would be to rationalise the plan and to decide which ideas the group wanted to take forward.
To begin with, the Chair highlighted proposals for an early diagnosis inquiry in spring, adding that there seemed to be support for this.
Ali Stunt (AS) suggested that the group should review the recommendations that resulted from the 2013 and 2014 inquiries, and consider where progress had not yet been made. This would help the group to narrow-in on asks before kicking off further debate.
The Chair agreed, stating that the need to reflect in more detail on where progress hadn’t been made was where the idea for an early diagnosis inquiry had come from. It would allow the APPG to revisit that aspect of its previous recommendations, honing in on where further progress was needed in that particular area.
Alex Ford (AF) highlighted that the Cancer Strategy had included some of the APPGPC’s recommendations, suggesting that this should be considered when designing the early diagnosis inquiry.
Turning to consider the proposal for a meeting on research, AS noted that Cancer Research UK (CRUK) had promised to double or triple funding for cancers of unmet need. She suggested that the meeting could be used to gather more detail on where that funding would be spent and to consider where it should be spent.
John Lancaster (JL) stressed the importance of coordinating pancreatic cancer research. He suggested that CRUK should consider where there were currently gaps in research and how to fill them.
Maggie Blanks (MB) highlighted that Dream Teams had already been set up, bringing together leading individuals in all fields of pancreatic cancer research.
AH argued that research tended to focus on interventions such as chemotherapy and surgery. Whilst these were important, supportive care, such as dietary interventions and pain management, should also be looked at.
Anna Jewell (AJ) agreed highlighting evidence to suggest proper symptom management could help improve survival, which AH noted that it could improve the effectiveness of chemotherapy.
Satvinder Mudan (SM) argued that a register of who was conducting what research was needed.
He also pointed to work the Royal Marsden was carrying out on early diagnosis, highlighting the development of a Multi Diagnostic Centre.
Moving on to discuss the suggestion of a meeting on new pancreatic cancer treatments, JB told attendees that Shire currently had a pancreatic cancer drug that was being appraised by NICE. He said he would be happy for a representative from Shire to speak to the APPG about the new treatment.
Mark Durkan (MD) suggested that the autumn session should focus on access to treatments, bringing in supportive care, whilst the November PCAM reception could focus on research. The APPG could then hold its early diagnosis inquiry in spring.
Attendees agreed with that proposal.
MB questioned what aspect of research would be looked at by the reception.
AS suggested that it could focus on inequality in research funding, noting that funding for pancreatic cancer had historically been low, despite a recent increase.
AH added that it could be used to highlight where there were research deficiencies.
The Chair surmised the discussion so far. There was agreement among the APPG that the Autumn session should focus on access to treatments, bringing in supportive care. The reception in November would then look at research. In spring 2017, the APPG would carry out an early diagnosis inquiry. After the inquiry, the APPG would review its work so far and consider what the focus should be for summer.
The Secretariat agreed to share an updated forward plan, incorporating the amendments discussed, with APPG members.
Stuart Andrew (SA) highlighted that there would likely be a reshuffle following the EU referendum. He argued that it was important to ensure the APPGPC contacted any new Secretary of State Health or Public Health Minister early on.
The Chair agreed, stating that the APPG would pursue meetings with any new Ministers as quickly as possible.
AH raised concern over decreasing morale among junior doctors, stating that people were leaving the profession in droves. This posed a problem for pancreatic cancer patients as it may mean fewer medical professionals specialising in pancreatic cancer.
Andrew Miller (AM) stressed the importance of educating the public about pancreatic cancer and its symptoms, suggesting that this was an area the APPG should raise with any new Public Health Minister.
AS agreed that this was important, noting that there was still little awareness of the link with smoking, noting that 29% of pancreatic cancer cases could be attributed to smoking.
AF highlighted that the Be Clear on Cancer Campaign was considering a campaign looking at abdominal systems. This would include pancreatic cancer, she explained, arguing that it was something the APPGPC should keep an eye on.
BM also noted low morale among doctors and nurses. She stressed the importance of ensuring foreign doctors and nurses did not feel unwanted in the UK following the referendum.
The Chair agreed that this was important, but conceded that it was probably beyond the remit of the group.
The meeting concluded at 11:30am.