Minutes of the APPGPC AGM

2pm, Tuesday 19th June 2018, Room M, Portcullis House

 

Parliamentary Members in Attendance: Nic Dakin MP, Nick Thomas-Symonds MP, Colleen Fletcher MP, Jim Shannon MP, Lord Aberdare

External Members in Attendance: Diana Jupp (CEO, PCUK), Ali Stunt (CEO, Pancreatic Cancer Action), Maggie Blanks (CEO, Pancreatic Cancer Research Fund), Fiona Brown (Development Manager, Pancreatic Cancer Scotland), Ross McLaren (Nic Dakin’s office), Professor Andrew Hart (UEA), John Lancaster (APPGPC member), Doug Goodman (APPGPC member), Professor Helmout Modjtahedi (Kingston University), Richard Cooper (APPGPC member), Tim Elliott (Department of Health and Social Care), Susan Speece (APPGPC member), Blair Sasada (PCA), Preth Rao (PCUK), Georgia Papacleovoulou (PCUK, Alfie van den Bos (PCUK- Secretariat of APPGPC)

 

  1. Welcome and Introduction

Nic Dakin (Chair) welcomed everyone to the meeting. He explained that the meeting was the Group’s Annual General Meeting (AGM), meaning it would focus on the election of Officers to the Group and on planning the All-Party Parliamentary Group’s future work programme.

  1. Apologies

Apologies had been received from Lord Porter and Lord Patel. Kevin Hollinrake also sent his apologies and informed the Group he could sadly no longer be involved with its work.

  1. Election of Chair and Officers for 2018/19

Jim Shannon moved that Nic Dakin be re-elected Chair of the APPG and this was approved unanimously. Nic informed the Group that he was happy to continue for another term but would look to hand over to a new Chair next time round.

Nick Thomas-Symonds moved that all existing Officers be re-elected, including Lords Porter and Patel who were happy to be re-elected in absentia, this was approved unanimously. In addition, Colleen Fletcher and Jim Shannon were elected as Officers unanimously.

  1. Group Secretariat

Nic Dakin explained that Pancreatic Cancer UK had acted Secretariat of the APPG since it was first established in 2012. He asked whether members were happy for the charity to continue in that role. There were no objections to this.

  1. Discussion of proposed privacy policy for APPG

Nic Dakin explained that due to the new General Data Protection Regulation (GDPR) the APPG was required to approve a privacy policy. Pete Meacham of Pancreatic Cancer UK has drafted this and was invited to explain it to the Group. Following this, there were no objections to adopting the policy for the APPG.

  1. Discussion around next year’s work plan

Nic Dakin talked the Group through the proposed work plan for the APPG, as drafted by Pancreatic Cancer UK.

He covered the planned meeting with Steve Brine MP, the proposed joint meeting on Multi-Disciplinary Centres (MDCs) with the APPG on Ovarian Cancer, the PCAM reception in November and a potential pan-APPG meeting in Summer 2019 on less survivable cancer issues.

The item on the forward plan that resulted in the most discussion was the proposed inquiry in 2019 and whether it should cover research or supportive and palliative care. Maggie Blanks proposed a combined research and palliative care inquiry which several attendees agreed with. Maggie was particularly keen for an inquiry to look into the availability of palliative and supportive care services for those affected by pancreatic cancer.

Preth Rao argued that there was currently not enough research on palliative care and pancreatic cancer issues.

However, she also suggested that some relevant data on the availability of services may already be in place and it would be worth exploring building relations with the APPG on Hospice and Palliative Care who have done a lot of work in this area. She also added that any inquiry on palliative care should also refer to wider supportive care topics such as diet, nutrition, pain relief and psychological support.

Andrew Hart made the point that palliative care was more complex than commonly thought and also included elements such as supportive care. He said that understanding of pancreatic cancer was not really a part of current medical education curricula. He supported combining the research and palliative care inquiries, especially if the APPG were able to prioritise more involvement from physicians.

Diana Jupp and Ali Stunt, among other attendees felt that while palliative care was hugely important, research was a more pressing opportunity given recent political developments around research funding for other cancers.

There were also questions around the scope and meaning of palliative care and research and what precisely was included in these topics.

Following this Nic Dakin stated that the idea of an inquiry was approved but more scoping needed to be done on the exact topic and nature of the inquiry.

  1. Presentation from Georgia Papacleovoulou, Senior Policy and Intelligence Manager at Pancreatic Cancer UK, on data outcomes

Georgia presented on the latest datasets on pancreatic cancer in the UK and how this compares to similar indicators in both Europe and the rest of the world, particularly in terms of diagnosis, survival and research funding.

  1. Presentation from Ali Stunt, CEO of Pancreatic Cancer Action, on raising awareness

Ali gave an overview of Pancreatic Cancer Action (PCA’s) campaigns to raise awareness of pancreatic cancer symptoms among GPs, pharmacists and members of the public.

  1. AOB

Nic Dakin asked if there was any other business. No other business was raised and the meeting was brought to a close.

Minutes of the APPGPC Meeting

Tuesday, 20th March 2017, Committee Room 14, Westminster Palace

 

Parliamentary Members in Attendance:

Lord Aberdare (Vice-Chair); Nic Dakin MP (Chair);

Member and Other Attendance:

Please see attached attendance sheet.

  1. Welcome and Introduction

Nic Dakin (Chair) welcomed everyone to the meeting, which would focus on the first ever NICE guidelines on the diagnosis and treatment pancreatic cancer. He explained that the APPG on Pancreatic Cancer has been calling for these guidelines since its first inquiry in 2013.  He believes the guidelines will serve as a benchmark for diagnosis and care going forward.

  1. Professor John Primrose, University of Southampton NHS Foundation Trust and Chair of the NICE Committee on Pancreatic Cancer (Session 1 Speaker)

Professor Primrose explained how the NICE Guidelines will deliver improvement and optimise care across the country.  Some of the key areas of the guidelines include imaging and staging, preoperative care pathway to surgery, the management of familial cancer and the preferred treatment for locally advanced and metastatic disease.  He emphasised how important it is for patients to be seen by a specialist MDT, as recommended in the guidelines.  It is also important that patients get the recommended PET-CT scan, because you cannot always detect metastasis on a regular scan.  Finally, he discussed fast track surgery and how it is cost effective and benefits patients.

 

During the course of his session, he discussed ongoing neoadjuvant trials.  He also explained that most cancer is complex but pancreatic cancer is even more so, because it has more heterogeneous, multiple mutations.  He believes precision panc and personalised medicine may help us determine who will respond to a certain treatment better going forward.

 

  1. Lesley Goodburn, Lay member of the NICE Committee on Pancreatic Cancer (Session 1 Speaker)

Lesley Goodburn’s husband was diagnosed with pancreatic cancer at age 49.  She described the emotional and psychological burden and how patients and family members need to be aware of the care they should receive early in the journey.   As a lay member of the NICE committee, she discussed multiple NICE recommendations, including recommendations related to specialist MDTs, CNSs, CT-PET scans, and support.  Specifically, she explained that the specialist MDT and CNS role are essential to a better patient experience.  The CT-PET scan and chemo can result in better treatment.  Information support is essential for care, as is psychosocial support.   She also emphasised the need to raise awareness to improve end of life care and associated quality standard.  Finally, she discussed the fact pancreatic cancer data is not consistently collected.  She called for better systems and rules for data collection.

 

  1. Questions/Discussions from Session 1:

It was discussed whether gastroenterologists could be a resource for patients with nutrition difficulties and symptoms of pain.  However, there was not sufficient capacity and guidance for this.

Fast track surgery was discussed.  John Primrose stated that the best evidence for fast track surgery came for the Netherlands.  This study showed that fast track surgery could prevent the complications associated with stenting.

There was also discussion on post-operative treatment, the evidence that patients are not offered adjuvant therapy post-surgery.

In addition, the use of the PET-CT scan, the role of the Specialist MDT, and familial screening were discussed.

 

  1. Robin Hewings, Head of Policy at Diabetes UK (Session 2 Speaker)

 

He discussed the impact the NICE diabetes guidelines have had on the diabetes community.  He explained that local specifications are derived from the NICE guidelines and works well with NHS practice.  An area that is challenging is education for people with diabetes.  The NICE guidelines help form the best practice tariff for paediatric diabetes, which along with clinical audit and peer review has doubled the numbers reaching the target for blood glucose levels.  They also help with ongoing diabetes audits, services for peer review of services, and the care quality commission as well.

 

  1. Professor Bill Noble, Sheffield Hallam University, Executive Medical Director at Marie Curie (Session 2 Speaker)

 

As a general practitioner, he explained that he saw pancreatic cancer patients in his practice.  One advantage of NICE guidelines on pancreatic cancer is standardisation.  He explained that the NICE guidelines are important, because they are supported by science.  However, some of the guidelines may be very hard to implement.  Professor Noble stressed the importance of getting scientific studies and evidence to inform future NICE guidelines.   He explained that some end of life guidelines have not been implemented, especially those that are harder to measure.

 

  1. Questions and Discussion from Session 2

PET-CT scan is a key element of the NICE guidelines on pancreatic cancer, but hard to implement.  A big difference with diabetes, according to Robert Hewings, is that there was a very robust collection of data for a diabetes audit, and therefore it was easier to put in place.  Professor Noble expressed some of the difficulties they had with implementation of NICE guidelines related to end of life care.

There was discussion about how clinicians and commissioners respond to guidance.

Finally, Robin Hewings discussed sharing and promoting practice.

 

  1. Update & Possible Next steps
  1. Update
    1. Industrial Strategy mentions pancreatic cancer
    2. Cancer strategy debate mentioned pancreatic cancer 24 times
  2. Future Plans
    1. Steve Brine to attend a future meeting
    2. The upcoming AGM (where forward planning will take place)
  3. Next Steps for NICE Guidelines
    1. Possible audit – In the future, we may want to collect audit data to identify gaps and examples of best practice.  Very important to identify what makes patient experience better.  Ricochet study may serve as an initial step for an audit.

Bowel cancer has been able to have a successful audit, because there was relatively good data. With regard to pancreas cancer data, there is good data for surgery as it is centralised. It is more difficult to capture pancreatic cancer data related to other treatment areas.

    1. Priority for research areas – The research areas identified in the NICE guidelines should be research priorities.  We need to continue to call for more funding for research for these areas and others.
    2. We need to continue to call for better bridging between supportive care and treatment.

MINUTES OF THE APPG MEETING OF 17th July 2017, 16:00

Parliamentary Members in attendance:

Lord Aberdare (Vice-Chair); Nic Dakin MP (Chair); Colleen Fletcher MP; Oliver Heald MP; Kevin Holindrake MP (Vice-Chair); Baroness Masham (Vice-Chair); Virendra Sharma MP; Nick Thomas-Symonds MP (Vice-Chair)

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The next meeting of the APPG on Pancreatic Cancer will take place on 14th September at 10:30 in Committee Room 19, Palace of Westminster. 

The meeting will focus on pancreatic cancer treatments, considering current standard treatments for pancreatic cancer, emerging treatments and supportive interventions.

The session will include presentations from Professor Andrew Hart, former president of the Pancreatic Society of Great Britain and Ireland who will discuss supportive interventions, and Anna Jewell, Director of Operations at Pancreatic Cancer UK who will give an overview of current standard treatments for pancreatic cancer and what improvements are needed.

The meeting is open to all parliamentarians and the public. For more information, please contact APPGPC@Pancreaticcancer.org.uk

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.

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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.

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AGM to be held on 28th June 2016, 10:30, Committee Room 21

The APPG on Pancreatic Cancer will be holding its annual general meeting on 28th June at 10:30 in Committee Room 21, Westminster Palace. 

The meeting is open to all parliamentarians and the public. It will focus on the election of Officers and planning for the year ahead. For more information, please contact APPGPC@Pancreaticcancer.org.uk