Minutes of the meeting of the All Party Parliamentary Group on Pancreatic
Cancer, 21st March 2013

MPs and Peers present
• Lord Patel (Chair)
• Nic Dakin MP
• Wayne David MP
• Mark Durkan MP
• Mark Garnier MP
• Eric Ollerenshaw MP
• Robert Wilson MP
• Lord Aberdare
• Baroness Jolly

Minutes

1. Opening of the meeting (Lord Patel)
Lord Patel opened the meeting, welcoming attendees from Parliament, patients and relatives of those with pancreatic cancer, the pancreatic cancer charities, and other guests. He noted the focus of the meeting on the patient experience.


2. Annual General Meeting

The Annual General Meeting of the All Party Parliamentary Group on Pancreatic Cancer was held.

• Lord Patel was re-elected as Chair.
• Baroness Morgan of Drefelin was re-elected as Vice-Chair.
• Nic Dakin MP was re-elected as Treasurer.
• Eric Ollerenshaw MP was re-elected as Secretary.

3. Update on recent meeting with Health Minister Anna Soubry MP
Eric Ollerenshaw MP, who had attended a meeting on behalf of the APPG with Health Minister Anna Soubry alongside Nic Dakin MP and Alex Ford and Clara Mackay from Pancreatic Cancer UK, provided an update of the Minister’s position.

In particular, he noted that the meeting was an excellent opportunity to “break the ice” and introduce the APPG, and that the Minister had been receptive and was interested in attending and addressing a future meeting of the APPG. He also noted that the Minister said she would look further at separating statistics relating to pancreatic cancer from those relating to all upper GI cancers.

Alex Ford, Pancreatic Cancer UK, added that she raised the need for developing appropriate pathways between primary and secondary care, and that the Minister was interested in this issue.

Nic Dakin MP added that he felt that the Minister was receptive to the concerns of the APPG and that it was important to maintain momentum following the meeting.
4. Inquiry into pancreatic cancer
Lord Patel gave an update regarding the APPG’s planned inquiry into pancreatic cancer, noting that the draft scope suggests it will cover geographical variations in pancreatic survival rates, early diagnosis and rates of diagnosis as a result of emergency admission, and differences in the NHS experience reported by pancreatic cancer patients compared to other cancer patients. The report will take both written and oral evidence with the aim of producing a report.

Lord Patel invited comments on the draft terms of reference for the inquiry and asked stakeholders to respond directly to the APPG secretariat.

Eric Ollerenshaw MP said that Ministers will respond to the inquiry if it receives good evidence and produces an authoritative report.

 

5. Speeches
Alex Ford, Pancreatic Cancer UK

Alex Ford addressed the APPG, offering her thanks to the re-elected officers and other Parliamentary and wider supporters of the APPG. She added it was vital to keep raising the profile of pancreatic cancer within Parliament and in Government, and thanked Lord Aberdare who had raised in Parliament the inclusion of pancreatic cancer statistics within upper GI statistics as part of the
National Cancer Patient Experience Survey (NCPES) 2010.

Turning to the patient experience, she noted the poorer experience of patients with pancreatic cancer compared to patients with other forms of cancer, as noted in Pancreatic Cancer UK’s own survey data and in the NCPES 2010. She noted Pancreatic Cancer UK’s concern about the results led to its Campaign for Hope – with the two goals of doubling the five-year survival rates and improving the patient experience from one of the worst to one of the best over the next five years.

She noted the detail of the findings in the NCPES 2010, which found that pancreatic cancer patients were more likely to visit GPs more often before receiving a diagnosis, were more likely to experience worsening health while waiting for a diagnosis, and were more likely to feel they had received conflicting information.

She read out a quote from the recent speech by Ann Clwyd MP, asked by the Prime Minister to review complaints within the NHS. The quote referred to a letter that Mrs Clwyd had received from a relative of a patient with pancreatic cancer:

“My husband of 84 underwent extensive tests to determine the reason for his illness, which didn’t manifest itself until the pancreatic cancer which had remained undiagnosed spread to his bladder. During all this time my main concern was the lack of nursing care.

He had been shunted into a side room on his own for being ‘difficult’ and as far as I could see was simply ignored. On one visit I found him lying in his own excrement while the staff were gathered gossiping round the nurses’ station. All my requests to see a doctor were fobbed off, until one doctor mentioned casually in passing that a lump had been found on my husband’s bladder. No attempt was ever made to discuss his diagnosis with me.”
(HC Deb, 14 March 2013, c552)

She noted that as Chief Executive of Pancreatic Cancer UK she heard a huge range of patient experiences through the support line – many very positive but some far less so.

She added that patients not treated at specialist centres will likely not have access to a specialist nurse, and that nurses were frustrated about the lack of support and training from the Government.

Going forward, Alex Ford set out two issues of concern:

1. The outcomes indicators for clinical commissioning groups – do not include the cancer patient experience; and
2. It is not clear yet who is responsible for taking forward the National Cancer Patient
Experience Survey.

Carole Challen, pancreatic cancer patient

Carole begun by noting that it was rare to be a long-term pancreatic cancer patient, due to the poor survival rates. She added that she works for the NHS and is very aware of its strengths and frustrations.

Carole gave an overview of her experience as a pancreatic cancer patient, from diagnosis to post- surgery support.

1. Diagnosis – she noted that she was diagnosed early as a result of a random scan which her
GP had recognised as pancreatic cancer due to previous experience.
2. Secondary care – she was introduced to her clinician; she found it difficult to understand all of what was going on but felt that the help and support offered was positive.
3. Waiting for surgery – she did not have to wait, and in fact felt she went into surgery too early
and did not have enough time to properly reflect the issues she would have liked to consider before undergoing surgery.
4. Support – she felt that better signposting was needed as to how to use the support offered by specialist nurses, and that often the family and carer is overloaded. She found that the support offered by Macmillan and the pancreatic cancer charities was helpful.
5. Surgery – she found that the procedure went superbly.
6. Nursing – she experienced significant problems, and often had to pick up issues herself. In general, she experienced a general lack of attention with nurses focusing on patients who were more pushy or demanding. In addition, she found that there was a lack of good quality communication between professionals and that there was not a holistic approach – she sometimes felt alone and lonely. Furthermore, she would have welcomed dietary support in relation to chemotherapy.
7. Support networks – she felt that patients want to know what is “normal” and find it helpful to
discuss their experiences with others, for example through cancer charity networks.

In conclusion, she said that her experience was that the NHS seems process driven and not always focused on the patient. She called for a more joined-up approach, which would be more specific to her and reflecting her needs.

Reg Race, Quality Health

Dr Reg Race gave an overview of the data available, including statistics for England, Wales, Scotland, Northern Ireland, and the Isle of Man for all cancers, the National Cancer Patient Experience Survey, National Cancer Intelligence Network data, and radiotherapy and chemotherapy surveys. He said that he had produced the initial draft of the Minister’s response to Lord Aberdare’s letter regarding the separation of pancreatic cancer statistics from other upper GI statistics.

He noted the radiotherapy data indicate that people are often very happy to travel long distances. He said that pancreatic cancer strikes him as being similar to prostate cancer ten years ago in that prostate cancer statistics were very poor compared to statistics for all tumours combined.

He set out that specialisation works – and specialist centres with specialist nurses lead to much more positive outcomes than in general wards.

He noted there was a big issue with patients presenting with pancreatic cancer in accident and emergency wards.

He noted he found Carole Challen’s experience as a pancreatic cancer patient fairly typical and noted that patients can make sophisticated points in their response to the NCPES – while rating their experience positively overall they could have individually poor experiences in response to particular questions.

He noted that the NCPES was very influential – and was the most influential data set from patients within the NHS. In addition, many NHS trusts had shown very significant improvements as a result of the survey, when teams in the trust look at the findings very seriously. However, he noted there was still significant variation, with London being particularly bad.

Turning to the detail of the study for pancreatic cancer patients, Dr Race noted that the results indicated a significantly worse result for getting into the “system” in the first place – i.e. patients had to see GPs many times before being diagnosed with pancreatic cancer. Additionally, the results showed a higher than average proportion of patients reported receiving conflicting information, and pain control was also an issue.

In concluding his remarks, Dr Race set out that he hoped that the data will “liven up” the performance of Multi-disciplinary Teams looking at the patient experience.

6. Questions from Parliamentarians and other attendees

Questions were asked about a range of subjects including what can be done to improve GPs’ understanding of pancreatic cancer to help them diagnose at an earlier stage.

• On improving GPs’ understanding of pancreatic cancer, the following points were made:

o Lord Patel said that NICE guidance should be reviewed and that opportunities with the Royal College of GPs could be used to inform GPs regarding early diagnosis.
o Ali Stunt from Pancreatic Cancer Action on its eLearning module developed in partnership with the Royal College of GPs, a partnership with Cambridge University into symptoms, and work with trainee GPs when on rotation to allow them to experience pancreatic cancer.
o Dr Race said that information for GPs was very important for patients with symptoms of rare conditions, as GPs need to easily access information about rare symptoms.
o Catherine Bouvier noted the work of the NET Patient Foundation which works with patients with neuroendocrine cancers.
o Eric Ollerenshaw MP noted that he had raised the issue with the Minister. He added that through Health and Wellbeing Boards members of the public can discuss cancer outcomes in their area, and that GPs with useful experiences of pancreatic cancer would be valuable in responding to the inquiry.
o Carole Challen argued that GPs need to consider symptoms which are often confused for common, more benign conditions, which may actually be a sign of pancreatic cancer.

• On the issue of how trusts can use patient experience data, Dr Race said that trusts can write their own action plan, and Quality Health can discuss it with them, and when doing so makes the point that clinicians need to be trained on issues with patients; trusts need good peer review of clinicians with patient experience data; trusts need a good number of clinical nurse specialists (CNSs) for each tumour group – and that their presence is the single biggest determinant of patient satisfaction. He added that a significant number of patients give permission for a further survey and there is a possibility of developing a follow-up survey regarding pancreatic cancer.

• On the issue on who is asked the survey, Dr Race noted that patients who are being actively treated for cancer throughout a three month period are invited to respond to the questionnaire. For the 2012-13 survey, this was 113,808 patients between September and November 2011. There was a response rate of 68%.

• On the issue of wider awareness raising amongst the public of pancreatic cancer, Lord Patel noted the symptoms of many other cancers such as prostate cancer were quite specific which allows for an easier self-diagnosis.

• On the issue of the percentage of people treated in specialist centres, and whether this information is published in the public domain, Dr Race noted that statistics are available on this issue, and that it is published through Essex University and the Department of Health. He added that the NHS Commissioning Board is currently deciding on a project to link NCPES data with NCIN data, a project which could possibly take six months to complete.

• On the inquiry, Hemant Kocher, a senior lecturer at Barts, said that the inquiry should look at how patients are diagnosed and their survival, and the need to improve the worst cancer networks to the level of the best.

• On what the pancreatic cancer patient experience would look like in ten years’ time, Dr Race said that survival rates and the patient experience would improve, and hopefully the currently intractable issues with late and emergency presentation would be resolved.

7. Conclusion
Alex Ford noted that Pancreatic Cancer UK was holding its Survival Summit on the 4th July 2013. Lord Patel closed the meeting by reiterating the invitation for attendees and wider stakeholders to
offer feedback on the terms of reference and call for evidence of the inquiry, and thanked speakers and attendees for coming to the meeting.

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