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.

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