MINUTES OF THE APPG MEETING OF 15th MARCH 2016, 10am
Parliamentary Members in attendance:
Lord Aberdare; Stuart Andrew MP; Nic Dakin MP (Chair); Mark Durkan MP; Colleen Fletcher MP; Baroness Masham; Nick Thomas-Symonds MP.
External Members and members of the public:
Pilar Acedo-Nunez (Research Fellow, UCL, Royal Free); Maggie Blanks (CEO of Pancreatic Cancer Research Fund);Joe Brice (Baxalta); Cllr Andrew Brown (London Borough of Hammersmith and Fulham); Richard Cooper (Pancreac Cancer Scotland); Tatjana Cruoforac-Jurcevic (Barts Cancer Institute); Melanie Fernandes (RPP Healthcare); Doug Goodman (APPGPC member); Jean Heery (Cancer Research UK); Anna Jewell (Pancreatic Cancer UK); Geri Keane (Research Fellow, University College London); Professor Hemant Kocher (Professor of Liver and Pancreas Surgery at the Barts Cancer Institute, Queen Mary, University of London); John Lancaster (HPB CRG NHS England Patient Representative); Larushka Mellor (Merck); Andrew Miller (Consultant Gastroenterologist); Leah Miller (PCUK – Secretariat to the APPG); Satvinder Mudan (Consultant Surgeon, Royal Marsden Hospital); David Park (Head of Campaigns and Policy PCUK); Professor Steve Pereira (Professor of Hepatology and Gastroenterology at University College London); Susan Speece (APPGPC Member); Ali Stunt (CEO Pancreatic Cancer Action); Laura Uriborri-Gonzalez (Research Fellow, UCL, Royal Free) Natalie Wood;
1. WELCOME AND INTRODUCTION
Stuart Andrew (Vice-Chair) took the Chair and welcomed attendees to the meeting. He explained that Chair Nic Dakin could make the full session due to parliamentary business.
Apologies had been received from 7 MPs and Peers: Sir Henry Bellingham; Julie Cooper MP; Mark Garnier MP; Eleanor Laing MP; Dr Caroline Lucas MP; Virendra Sharma MP; Baroness Walmsley.
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. UPDATE AND FEEDBACK FROM JOINT APPG MEETINGS
APPG Secretariat Leah Miller (LM) explained that the APPGPC Secretariat and Chair had been meeting with other cancer APPGs to coordinate work where there were shared objectives. The APPGPC had helped organize two joint meetings with other cancer APPGs. Both these meetings were closed meeting, meaning they were only open to parliamentary members of the APPG.
The first meeting focused on the Cancer Strategy and Members heard from Sean Duffy and Harpal Kumar. Actions resulting from the meeting included a series of PQs on workforce training, and a letter to Health Education England (HEE) Chair Professor Ian Cunningham on questioning how HEE would ensure the NHS has the diagnostic capacity necessary to deliver the Cancer Strategy’s recommendations.
The second meeting focused on changes to the Cancer Drugs Fund (CDF). Attendees heard from NICE, NHS England, Target Ovarian Cancer CEO Anwen Jones and a patient representative. The key action to follow from the meeting was a letter from those Members in attendance to NICE, following up on questions to emerge from the session.
LM said she would keep the APPG up to date with any future joint work between the APPGs.
5. PRESENTATION FROM PROFESSOR STEVE PEREIRA
The APPG heard from Professor Steve Pereira (SP) who gave an overview of some of the challenges facing pancreatic cancer and spoke of his own research into early diagnosis.
Beginning, he highlighted that pancreatic cancer had not seen the same improvement in survival rates as other cancer types over the last 20 years. Attributing this in part to early diagnosis, he noted that 45% of pancreatic cancer patients are diagnosed via A&E leading to poorer outcomes. Nonetheless, he highlighted that there were many improvements that could be made that could improve survival rates, including earlier diagnosis.
SP went on to discuss his own research into developing a rapid diagnostic pathway for primary care physicians. He explained that the study was looking at developing non-invasive ways of identifying pancreatic cancer. This involved developing a protein test using blood samples collected from patients up to 5 years prior to diagnosis.
So far research indicated that protein markers of pancreatic cancer were evident in patients up to two years prior to diagnosis. Blood and urine tests could be used to identify these biomarkers, he continued. The next step was to bring biomarkers into assessments, he told the APPG, arguing that patients with positive biomarkers should be sent for further assessments. This could help lead to earlier diagnosis, lowering the overall cost of pancreatic cancer on the NHS.
6. PROFESSOR HEMANT KOCHER
Professor Hemant Kocher spoke the APPG about Pancreatic Cancer Research Fund’s (PCRF) new Tissue Bank, which he explained was a unique resource launched formerly in January
The Tissue Bank involved collecting tissue samples of different types of pancreatic cancer tumours and also ordering them according to different clinical annotations, such as familial history of pancreatic cancer. These samples could be saved for future use, accelerating further research.
Explaining how the Tissue Bank worked HK said the project was governed by the Health Research Authority’s research governance framework. Samples are collected in a standardised manner by local collection centres, he elaborated.
The PCRF funded the Tissue Bank, which was located at Barts Cancer Institute.
Discussing the next steps, HK stressed the importance of ensuring clinical data and research data was joined up and that information was shared between clinicians and researchers.
The session was then opened up to a Q&A.
Opening, the Chair asked what progress had been in research since the APPGPC held its inquiry.
Responding, SP said that the ability for rapid diagnosis was better than it was a few years ago, however, he added that there had been no major increase in the number of people working in pancreatic cancer research.
Meanwhile, HK highlighted the Ludsgart Foundation Research funding.
In addition, he argued that the new pancreatic cancer clinical guideline, which was currently in development, should be very useful in enhancing patient care.
There also seemed to be greater awareness of pancreatic cancer and the need for more research.
Nick Thomas-Symonds MP welcomed the development of the Tissue Bank, describing it as an excellent idea. He asked how Barts would ensure information was available to clinicians in digestable form as quickly as possible.
In reply, HK stated that once information was validated it would be available to GPs.
Lord Aberdare questioned what research was being conducted into new treatments for pancreatic cancer.
Responding SP noted that more treatments for unresectable pancreatic cancer were needed. He highlighted that new promising technologies, like immunotherapy, had shown great results in other cancers, but not pancreatic cancer as of yet.
HK argued that the Dream Team Awards would allow patients in the UK access to drugs currently available in other countries but not accessible on the NHS.
Baroness Masham questioned the p[anel about pressure on GPs not to refer patients for tests. She also asked whether cyberknife was used on pancreatic cancer patients.
HK said that there were a number of challenges with regard to pancreatic cancer that restricted how GPs worked.
On cyberknife, he said that currently there was no good evidence that cyberknife should be used as a standard treatment for pancreatic cancer, arguing that further research into its benefits as needed.
Following on from this, Consultant Surgeon Mr Satvinder Mudan (SM) argued that different treatments needed to be used in combination with one another for their full effectiveness to be realized. For example, treatments like cyberknife and immunotherapy had been shown to be effective in treating pancreatic cancer patients when used in combination with other technologies, he stated.
Cllr Andrew Brown (AB) explained that he had lost his uncle to pancreatic cancer. He asked what local councils could do, for example through working with Health and Wellbeing Boards, to overcome barriers to research.
Responding, HK and SP agreed that it was important to work with charities and local healthcare providers, adding that councilors were in a good position to raise awareness of barriers to pancreatic cancer research in their area.
Doug Goodman explained that his daughter had died from pancreatic cancer after visiting her GP six times before diagnosis. He argued that there was a presumption that pancreatic cancer did not affect young people. He asked for reassurance that changes were being made to improve early diagnosis.
In reply, SP highlighted that pancreatic cancer could be especially difficult to diagnose due to the vague symptoms and the fact GPs would on average only see one patient with pancreatic cancer in ten years.
However, some improvements had been made, he continued. In particular, he highlighted the development of decision aid tools, designed to help GPs identify when symptoms should lead to a referral, and the updated NICE referral guidelines, which for the first time included a dedicated section for pancreatic cancer.
Colleen Fletcher MP (CF) questioned how key GPs were in diagnosing pancreatic cancer.
Responding, SM said he was unconvinced that the GP gatekeeper model was the best clinical model for pancreatic cancer. Instead he advocated self-referral with a triaged front.
HK stressed that it was impotant not to disparage GPs. Stating that he had previously sat in with GPs during surgeries, he said the profession faced a number of significant problems, including a lack of resources. Significant investment was needed to improve early diagnosis, he argued.
CF went on to highlight the pressure on GPs. She added that awareness campaigns often resulted in increased attendances at GP surgeries. Whilst this was positive in that it led to earlier diagnosis, it also placed increasing pressure on GPs to determine which patients should be referred for tests.
In reply, HK stressed that this was why it was important awareness campaigns came hand-in-hand with better education for GPs on spotting worrying symptoms.
John Lancaster argued that there seemed to be a lack of coordination between healthcare bodies when it came to research.
Responding, HK highlighted that different researchers might approach different issues in different ways and that it was important to encourage this.
Nonetheless, it was essential that researchers, relevant healthcar5e bodies and politicians understood the research landscape, and that where research led to the development of effective treatments and technologies, those treatments were followed by funding. This was particularly important when it came to cancers of unmet need, he added.
Ali Stunt (AS) questioned whether any analysis had been carried out looking at where there were gaps pancreatic cancer research.
In reply, Anna Jewell said that Pancreatic Cancer UK would be conducting a research review this year looking at current funding for pancreatic cancer research.
Adding to this, Mark Durkan MP (MD) suggested it was important more research into pancreatic cancer was conducted as it was a cancer of unmet need.
Following on, Andrew Millar highlighted the piloting of Multi Diagnostic Centres in the UK. These could help improve early diagnosis by allowing patients with pancreatic cancer symptoms to have numerous investigative tests carried out in the same place on the same day. He also suggested that IT could be used to explore the patterns of symptoms in patients presenting to their GP who go on to be diagnosed with pancreatic cancer.
AB questioned whether using biomarkers to detect pancreatic cancer earlier would result in a lot of unnecessary investigations.
In reply, SP explained that his research was focusing on biomarkers among high-risk groups.
MD questioned whether it was worth looking at the funding of new emerging diagnostic technologies through NICE and the CDF.
In response, HK said it was very difficult to make the case for the funding of diagnostic technologies through the CDF.
8. FUTURE MEETINGS
LM explained that the APPGPC had considered the following proposals for future meetings:
- Meeting with Cally Palmer, NHS England Cancer Director – Cally Palmer had been invited to speak to the APPG on the Cancer Strategy at some time in March/April 2016, but her office had been unable to find a suitable date.
- Meeting with Public Health Minister Jane Ellison – Jane Ellison had been invited to speak to the APPG, but unfortunately her office had said she was currently unable to commit to a meeting due to her busy schedule. However, she had been asked to be kept updated with the APPG’s work.
- AGM for May/June – The APPG was due to hold an AGM In May/June
- Meeting on the new Pancreatic Cancer Clinical Guidelines
- Reception for Pancreatic Cancer Awareness Month at some point in November
LM asked whether attendees were still happy with those suggestions for future meetings and whether anyone had any proposals for topics they thought the APPG should hold meetings on.
It was suggested that the APPG Might want to hold a meeting on research funding, inviting the National Institute for Health Research along to speak.
BM suggested that the APPG should invite a GP representative along to a meeting.
These ideas were accepted by Members in attendance.
AS said that she was carrying out work looking at pancreatic cancer across Europe. Highlighting variation in survival rates and that one-year survival figures varied between countries in Europe, she suggested that the APPG should look to Europe to share ideas.
The meeting concluded at 11:20am.