MINUTES OF THE APPG MEETING OF 14th OCTOBER 2015, 3pm
Parliamentary Members in attendance:
Nic Dakin MP (Chair); Lord Aberdare; Mark Durkan MP; Sir Oliver Heald MP; Colleen Fletcher MP; Justin Madders MP.
External Members and members of the public:
Dr Andrew Hart (Pancreatic Society of GB and Ireland (PANSOC)); Maggie Blanks (CEO of Pancreatic Cancer Research Fund); Alex Ford (CEO PCUK); Ali Stunt (CEO Pancreatic Cancer Action); Maggie Watts; Linda Reardon; Mandy Jones; Charlotte Dawkins (Celgene); Jennifer White (Lexington); David Park (Head of Campaigns and Policy PCUK); Leah Miller (PCUK – Secretariat to the APPG).
1. WELCOME AND INTRODUCTION
Nic Dakin took the Chair and welcomed attendees to the meeting.
Apologies had been received from 29 MPs and Peers: Graham Stuart MP; Robin Walker MP; Lord Williams; Derek Twigg MP; Andrew Gwynne MP; Debbie Abrahams MP; Tom Tugendhat MP; Teresa Pearce MP; Baroness Morgan; Baroness Thornton; Mark Prisk MP; Baroness Lister; Sir Roger Gale MP; Dr Caroline Lucas MP; Lord Hunt; Lord Puttnam; Catherine West MP; Dominic Grieve MP; Lord May; Ronnie Cowan MP; Bishop of Carlisle; Lord Ashdown; Baroness Hamwee; Lord Davies of Abersoch; Lord Lindsay; Meg Hillier MP; Andrew Rosindell MP; Lord Patel; Maggie Throup MP
3. 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.
4. Discussion on APPGPC follow-up report.
The Chair explained that the APPGPC had produced a draft follow-up report looking at what progress had been made on achieving the recommendations of the Group’s previous reports; “Time to Change the Story: A plan of action for pancreatic cancer” and “Pancreatic Cancer Research: A roadmap to change”. He asked Dr Andrew Hart, Ali Stunt, Maggie Blanks and Alex Ford to each speak for three minutes on the report.
Dr Andrew Hart spoke to Point 6 of the draft report on the education and training of professionals. He explained that pancreatology had not been included in the training curriculum for junior gastroenterologists. PanSoc was working on the development of a pancreatology training programme it hoped would be adopted by the Royal College of Physicians (RCP), he continued. He suggested that the APPG write a letter to the RCP supporting the inclusion of pancreatology in the training curriculum.
Following on, Dr Hart emphasised the importance of nutrition and the management of conditions like diabetes in pancreatic cancer patients. Greater priority needed to be given to supportive medical areas, like diet and nutrition, and should be included within the new National Institute for Health and Care Excellence (NICE) pancreatic cancer Clinical Guideline.
In addition, he stressed the importance prevention, suggesting that diet and nutrition may also have a role to play in helping prevent pancreatic cancer.
Ali Stunt focused on the importance of early diagnosis. She went on to welcome Health Secretary Jeremy Hunt’s announcement on 13th September that NHS England would look at adopting the Cancer Taskforce’s recommendation that by 2020 95% of people should be given a diagnosis or the all-clear within four weeks of GP referral. PCA also supported the Taskforce’s recommendation that that GPs should be given direct access to CT scans, adding that the charity had campaigned on this. However, argued it was crucial that this recommendation be adopted as policy. She suggested that MPs might want to ask questions on how many GPs currently have access to CT scans and on support for the Cancer Taskforce’s recommendations, to gauge how close the recommendation was to becoming policy.
On training, she noted that PCA, with the British Medical Journal, had developed a training tool for hospital doctors aimed at helping them diagnose pancreatic cancer. The tool followed on from an e-learning module the charity had developed with the Royal College of General Practitioners (RCGP). These modules offered a practical solution to the problem of late diagnosis. She also called for the diagnostic tool developed by Macmillan to be rolled out across the country.
Ms Stunt went on to welcome the new NICE Referral Guidelines for suspected cancer, but called for age thresholds to be removed.
Noting EUROCARE 5 data released recently, she said the figures showed the UK lagged behind other European countries in terms of cancer survival. The NHS should look at what other countries are doing, she argued, pointing to specialist diagnostic centres in Denmark as an example of good practice. The piloting of Multidisciplinary Diagnostic Centres was highlighted as an example of progress on incorporating such a diagnostic model. The centres meant that patients presenting with vague symptoms, such as abdominal pain, could go to one centre and receive various investigative tests. This would prevent patients being referred backwards and forwards between specialists, prolonging diagnosis, Ms Stunt explained.
Ms Stunt noted that the APPG had called for a National Clinical Audit of pancreatic cancer, but regretted that this recommendation had not been implemented. She also spoke in favour of a symptoms awareness campaign.
Maggie Blanks discussed what progress had been made on meeting the APPGPC’s recommendations on research. She noted that Stand-Up to Cancer, alongside Cancer Research UK and the Lustgartern Foundation’s $12 Pancreatic Cancer Dream Team. She explained that 25% of all partnership funding would be UK based. Researchers had been invited to apply for the funding throughout the summer and the winner was expected to be announced in November, she added. Welcoming the programme as an “interesting illustration of strategically, ring-fenced funding”, she argued it was an important step for pancreatic cancer research. However, she cautioned that whether it could be relied upon as a consistent source of finding was yet to be seen.
Ms Blanks went on to welcome that the National Cancer Research Institute (NCRI) had increased its spend on pancreatic cancer research from £5.4m in 2013 to £7m in 2014. However, she noted difficulties in working out where that funding came from, adding that £1.1m was believed to have come from the Department of Health. Cancer Research UK was believed to be the biggest source of the funding, she continued, noting the charity’s pledge to double or treble it’s research spend on pancreatic cancer over five years. Whether the charity managed to stick to this commitment remained to be seen, she warned, suggesting that the APPGPC try to encourage CR UK to continue to increase its research spend on pancreatic cancer, whilst monitoring wider progress on increasing research funding.
On the need to build better pancreatic cancer research infrastructure, Ms Blanks highlighted that PCRF had set up a National Pancreatic Registry & Tissue Bank, the PR launch for which would be next month. She explained that the bank was designed to provide a range of tissue samples and comprehensive data for researcher. This would save time and power more research in the future.
Alex Ford noted that the APPGPC had called for the implementation of a clinical guideline for pancreatic cancer. She welcomed that this recommendation had since been adopted, with the development of a NICE Clinical Guideline and Quality Standard for pancreatic cancer underway. This was the first of its kind for pancreatic cancer. Nonetheless, she stressed the importance of ensuring that the guideline include well-being, nutrition and dietary advice, as these were important factors in improving the experience of pancreatic cancer patients. Evidence also suggested that better dietary advice could improve survival for pancreatic cancer patients, she noted.
On the APPG’s recommendation that every pancreatic cancer patient have access to a Clinical Nurse Specialist (CNS), Ms Ford noted that currently around 90% of pancreatic cancer patients were assigned a CNS. This was not good enough as access to a CNS should be universal. In addition, she emphasised the importance of ensuring CNSs had the time and resources they needed to deliver a good service, noting PCUK research showing that currently only 28% of CNSs felt they were able to spend enough time with their patients.
Turning to address the APPG recommendation that all pancreatic cancer patients should have access to a specialist dietitian, she said that this was still not the case, pointing to findings from the 2014 Pancreatic Cancer Patient Experience Survey. The need for dietitians to be considered vital members of pancreatic cancer Multidisciplinary Teams (MDTs) and for all patients to have their case reviewed by a dietician should be reflected in the NICE guidelines, she argued.
On access to treatments, Ms Ford said that the APPG recommendation that pancreatic cancer treatments shown to be effective should be made available as soon as possible had not been met, noting the removal of Abraxane from the Cancer Drugs Fund (CDF). Its removal from the CDF and the NICE decision not to recommend it for use on the NHS showed how the drugs appraisal system did not work for pancreatic cancer and other cancers with poor survival rates. Upcoming consultations on merging the CDF and NICE, restructuring NICE and the Accelerated Access Review represented a “huge opportunity” to replace the current system with one that worked for pancreatic cancer patients. Noting also the regional implications of the NICE decision, she said the drug would not be available in Northern Ireland, whilst its availability in Wales had been threatened. She pointed to the PACE system in Scotland as an example of a mechanism that better worked for end of life drugs by placing more emphasis on the views of patients.
Following on from the discussion, the APPG agreed to send a letter to the BSG calling for pancreatology to be included in the training curriculum for junior gastroenterologists.
The APPG also agree to write to NICE urging it to include well-being and nutrition in its Clinical Guideline for pancreatic cancer.
The Group agreed that it would invite Dr Steve Pereira and Dr Andrew Millar to a meeting next year to speak about progress on delivering their MDC.
The APPG agreed to try to bring in CR UK to discuss progress on increasing research spend into pancreatic cancer
The Group agreed that the draft APPG report should be published as a PDF and treated as a live document, updated every six months.
5. Discussion on Abraxane
David Park updated the Group on action the APPG was taking with regard to the removal of Abraxane from the CDF and the NICE decision not to recommend the drug for approval.
The APPG had signed two joint letters to the DH, one on the CDF decision and another following the NICE decision. The letters set out the reasons for opposing the decisions and called on the Secretary of State to intervene to ensure Abraxane remained 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.
Colleen Fletcher asked about the drug appraisal system in Scotland, to which Ms Stunt replied that the mechanism was different as it placed more weight on patient views. The NICE “one-size fits all” system was failing cancers of unmet need she argued.
Adding to this, Mr Park explained that the Quality-Adjusted Life Year (QALY) measure, on which NICE decisions were based, failed pancreatic cancer patients as the average survival of three to six months was often not long enough for the measure to apply.
Following on, Maggie Watts update the Group on the Abraxane petition she had started, stating that it had now reached 86,000 signatures. She went on to discuss her family’s experience, noting that her husband had faced the same survival chances as his mother when he was diagnosed with pancreatic cancer years later. Abraxane represented progress for a cancer where little progress had been made for 40 years. People in England were now being disadvantaged due to the CDF and NICE decisions.
Ms Stunt then updated the Group on the PCA petition, which had received over 20,000 signatures. Noting that the last petition had sparked a debate in Parliament, she said she hoped the new one would too.
The Chair then informed the APPG that there would be a debate in the House of Commons next Tuesday on access to cancer drugs, adding that he would be raising the issue of Abraxane.
Oliver Heald argued that there was a need to ensure the drugs appraisal system worked for all cancers with poor survival rates, which were currently disadvantaged.
Ms Stunt then raised concern that the NICE decision would put pharma companies off investing in the UK as it presented the NHS as a health system in which they could not operate.
Following on from this, Charlotte Dawkins stressed that Celgene remained committed to investing in the UK and would continue to work for Abraxane to be made available.
The APPG agreed to continue supporting petitions as a useful vehicle for awareness raising.
APPG Members agreed to keep trying to raise the issue of Abraxane in Parliament and to speak with George Freeman about the need for a small meeting with him on the matter.
6. Date and format of future meetings
Leah Miller told the APPG that Public Health Minister Jane Ellison had been invited to speak to the APPG on the follow-up report. The APPG agreed that this should form the next meeting, agreeing to a date of December/January
7. Concluding remarks
The Chair asked if there was any other business.
David Park updated the APPG on plans for Pancreatic Cancer Awareness Month.
He explained that awareness raising activities organised by charities and volunteers were taking place across the country. This included a Parliamentary Reception on 27th October hosted by PCUK.
The Chair thanked members for coming.
The meeting concluded at 16.20pm.