Parliamentary Members in attendance:

Nic Dakin MP (Chair); Stuart Andrew MP; Karen Lumley MP; Sheryll Murray MP; Margaret Ritchie MP; Mark Durkan MP; Nick Thomas-Symonds MP; Richard Benyon MP; Lord Aberdare; Lady Sylvia Hermon MP.

External Members and members of the public:

David Park (Pancreatic Cancer UK (PCUK) – Secretariat to the APPG); Dr Andrew Hart (Pancreatic Society of GB and Ireland (PANSOC)); Jennifer Farr; Dr Andrew Smith (PANSOC); Maggie Blanks (CEO of Pancreatic Cancer Research Fund); Doug Goodman; Roxy Squire (Cancer Research UK); Mark Reale (Celgene); Justine Aldridge (Celgene); Jennifer White (Lexington); Clara Mackay (Deputy CEO PCUK); Alex Ford (CEO PCUK); Anna Jewell (Director of Operations PCUK).

1. Welcome and introduction.

Nic Dakin took the Chair and explained that as he was the only MP Officer of the Group following the election it fell to him to call the AGM of the Group and keep it going. He asked Members present if they were content for him to Chair the meeting and that was agreed.

2. Apologies.

Apologies had been received from 25 MPs and Peers: Andrea Jenkyns MP; Graham Brady MP; Mark Prisk MP; Andrew Rosindell MP; Caroline Lucas MP; Baroness Cox; Baroness Morgan of Drefelin; Lord Robertson of Port Ellen; Stephen Metcalfe MP; The Bishop of Bristol; Lord Davies of Abersoch; Alan Whitehead MP; Baroness Thornton; Lord Puttnam; Baroness Walmesley; Judith Cummins MP; Bob Blackman MP; Graham Evans MP; Pauline Latham MP; Lord Patel; Baroness Finlay; Maggie Throup MP; Lord Tebbit; Iain Stewart MP; and Stewart Jackson MP.

3. Update on new APPG rules.

Nic Dakin explained that the rules for APPGs had been changed and asked David Park to give a quick run through of key points, which included a requirement that the Chair of the Group be an MP, and a minimum of 4 other officers be elected, for an APPG to be valid.

4. AGM – election of officers for 2015/16.

Nic Dakin said although he had called the meeting, and was happy to take on the role of Chair, if another MP wanted the position they should say. Members unanimously confirmed Nic Dakin as new Chair of the APPG.

The following Members were nominated and seconded as Vice Chairs: Lord Aberdare, Lord Patel, Baroness Morgan, Stuart Andrew MP and Mark Durkan MP. All were elected unanimously.

The Chair noted that it was appropriate at this point to note the contribution made by Eric Ollerenshaw in leading the Group and helping to ensure it produced such authoritative reports, a view endorsed by all other Members present. The Chair suggested that he should write to Eric on behalf of the Group to thank him formally for his leadership, effort and collegiate approach, which was agreed by all present.

5. Minutes of meeting held on 11th March 2015.

These were presented and accepted as a true record.

6. Addition of other Members of the Group.

The new APPG rules require a list of active members of the Group, both Parliamentary and external, to be maintained and made publically available on the Group website or on request.

David Park reported that in addition to the Members present at the AGM an additional 12 MPs and Peers had indicated they wished to be added as members of the Group. He went on to say there had been 148 MPs and Peers on the Group’s mailing list in the previous Parliament and asked if he could contact each of them to see if they would be prepared to add their names again. That was agreed.

The new APPG rules also require a list of active external members to be maintained. Mark Durkan informed the Group that John Baron MP, as Chair of the APPG on Cancer, was keen that all cancer Groups had a joint approach to deciding who constituted an active member and would therefore be recorded as such on a publically available list. He suggested the Group liaise with John Baron to agree a common format and that was agreed by the Group.

7. Secretariat.

The Chair informed members that Secretariat support had been supplied by Pancreatic Cancer UK since the Group was formed in 2012. He said it was important that the role of Secretariat be agreed in a transparent manner by the Group and then asked David Park to briefly describe the work done by the Secretariat. Members were asked if they agreed PCUK should be reappointed as Secretariat in future, which was agreed.

8. Review of APPG work and achievements since 2012.

A note was circulated listing some of the Group’s work in the previous Parliament.

Again, the contribution of Eric Ollerenshaw was noted by Members.

9. Discussion around future activities beyond 2016.

The Chair asked those present to suggest activities for the Group over the coming years. As a starter, he suggested it would be helpful to conduct a review of the impact of the Group’s previous work, contained in the two reports of 2013 and 2014.

Dr Andrew Hart informed the Group that the Pancreatic Society of GB and Ireland (PANSOC) had met a few days before and received input from the various pancreatic cancer charities. There was a lot of common ground around gaps that appeared in the care process, especially in terms of patients being given information, prognosis and specific treatments. There was a need to manage better issues of diet, psychology, exercise, control of jaundice, diabetes and depression. In particular he talked about the need for a bridging clinic for patients, between first diagnosis and appointment with a specialist, to ensure earlier access to dietary support and, for instance, enzyme replacements. He hoped PANSOC and the charities would produce a paper on key issues that the APPG might then be able to use to take matters forward in late 2016.

Clara Mackay suggested the APPG might want to hold sessions on new developments in cancer policy and how they would help, or otherwise, pancreatic cancer patients. For instance, the new Cancer Strategy was due to be published in July and new National Institute of Health and Care Excellence (NICE) Cancer Referral Guidelines had just been published.

Dr Andrew Smith also noted that NICE was due to commence work on a Clinical Guideline and Quality Standard for Pancreatic Cancer and that this would have a major impact on care in future. It would begin scoping in September and it would be helpful for the APPG to feed in to the development of the Guideline.

Lord Aberdare asked what the status of the chemotherapy drug Abraxane was, as members of the Group had campaigned for it to be made available through NICE and the Cancer Drugs Fund (CDF). Nic Dakin asked David Park to update the Group. In summary, Abraxane had been approved for use on the NHS in Scotland and Wales. NICE was about to issue a refusal for routine use on the NHS in England (due to cost-benefit issues) and should this happen it was possible Wales would withdraw access in future. Northern Ireland was likely to follow the NICE decision. However, Abraxane was still available to patients in England via the CDF. There had been an attempt to remove it in Dec/Jan but it had remained on the list. There was now another assessment of the drug due to take place in late July, which could see it withdrawn from the CDF list. Nic Dakin suggested he send a letter from the APPG to the Health Minister noting that it seems odd the drug will have been assessed three times within the past year to fifteen months before there has been a proper chance to evaluate its impact in a clinical setting. It was agreed the letter should be sent.

Andrew Hart suggested there should also be more work done on preventive measures, such as smoking and body mass index.

Mark Durkan said that the Group needed to work with other cancer APPGs to address wider cancer issues, e.g. prevention and the Cancer Strategy. He also spoke of the need to address cross-border issues, such as access to cancer drugs across the whole of the UK: should there be a UK-wide cancer drugs fund for instance? A joint meeting of cancer APPGs to look at how devolution of health impacts on cancer care would be useful.

David Park suggested an initial review of success or otherwise of the two previous APPG reports could incorporate some of the other suggestions – e.g. how many recommendations were taken up in the new Cancer Strategy or new Referral Guidelines. It could also help provide a way for the Group to feed into the new NIICE Clinical Guidelines. Other joint meetings or work with the Cancer APPG could take place as required where joint working was helpful.

This was agreed as a way forward for the next few months.

10. Concluding remarks.

The Chair asked if there was any other business.

David Park said he had drafted some possible written questions for Members to table just to keep pancreatic cancer as an issue on Ministers’ radars. It was agreed a few questions would be sent to each Member.

The Chair asked about the Abraxane petition which had been presented to Downing Street before Christmas. David Park explained it could be resurrected, more signatures collected and then presented to Parliament. It was agreed the link to the online petition would be circulated to Members and the Chair would try to arrange to present the petition before the summer recess. Mark Durkan pointed out that there was now also a petitions committee as a possible route to progress matters,

The Chair thanked members for coming and noted the good turnout.

The meeting concluded at 10.40am.

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