Cancer Patient Experience

Andrew Percy Excerpts

Wednesday 30th October 2013 Westminster Hall

[Eric Ollerenshaw (Lancaster and Fleetwood) (Con)]

I would like to think that I take the message, Mr Owen. It is a pleasure to serve under you.

It is also a pleasure to congratulate the new Minister, my hon. Friend the Member for Battersea (Jane Ellison), on her appointment. She has a reputation as a listening Minister and I am sure that, when she makes her closing remarks, she will prove to have listened to all of us here today.

I start off in a very partisan situation. As the hon. Member for Strangford (Jim Shannon) said, we are getting to the “cancer world”, as I call it; it is like a separate world that involves different people, often through personal experience. My experience of it is personal, but also through being secretary of the all-party group on pancreatic cancer. If I may, Mr Owen, I will give a little plug here—the all-party group is producing a report, which the Secretary of State for Health has agreed to take at a meeting on 25 November. All hon. Members will be invited to that meeting.

The report is about improving outcomes. I congratulate my hon. Friend the Member for Hertsmere (Mr Clappison) on securing this debate at this timely moment. What we in the all-party group are trying to see is a further improvement in outcomes, at a time when outcomes for cancer patients are improving. When I was growing up in the 1950s and 1960s, if somebody mentioned the word “cancer” it was almost as if a life sentence had been passed. We are in a different situation now.

Pancreatic cancer is seen as perhaps the most difficult cancer, and there are issues connected with that. I will cite some statistics to demonstrate the situation that pancreatic cancer patients often find themselves in. My hon. Friend the Member for Basildon and Billericay (Mr Baron) is far more experienced in this area than I am, and he put his finger on the issue by stressing the importance of early diagnosis.

I will give the figures from the national cancer patient experience survey: 40% of pancreatic cancer patients visited their GP three or more times before diagnosis; and 25% visited their GP five or more times before diagnosis. Those figures compare with 75% of all other cancer patients who are referred to hospital after one or two GP visits.

From the investigation that the all-party group made, I can cite the specific example of someone who came to us to give their own personal experience. They said:

“With regard to early diagnosis, the most important aspect for us was the fact that Gemma went to her GP on a total of 10 separate occasions between the middle of April 2009 and the end of August, when she was finally referred to a specialist”.

That is the experience of most people with pancreatic cancer. In my own case, I think that my partner went to the GP six or seven times before somebody then said, “Better go to a hospital.”

Then, when a patient gets to the hospital situation, quite often there is no access to a specialist in pancreatic cancer. If a clinical nurse specialist is not available, the patient is even more lost. I underline the importance that the all-party group attaches to the clinical nurse specialist in almost holding the hand of somebody with cancer as they go through the system.

[Andrew Percy (Brigg and Goole) (Con)]

I want to tell my hon. Friend about a meeting that I had with a radiotherapist in my constituency just a week or two ago. They told me that, all too often, patients who appear for treatment tell him that they visited their GP on numerous occasions and, sadly, often they were sent home. I know that it is incredibly difficult for GPs. We are expecting a lot of them, but there is still a lot more to be done in ensuring that GPs across the country are consistent in their approach to people who present with certain symptoms.

[Eric Ollerenshaw]

My hon. Friend is absolutely right and I totally agree with him. That is the kind of information that we, as an all-party group, have been receiving from right across the country.

As I said, there is a lack of specialism, even in a hospital situation sometimes. The issue with pancreatic cancer is that there is a repetition of non-specific symptoms. Again, I cite my own personal experience from the case of my partner—he just had a stomach ache that went on and on, without a particular issue. Other hon. Members have referred to what males tend to do, and they are absolutely right; we often put these things to one side and say, “It is a stomach upset”, despite the repetition of symptoms. What we are trying to get GPs to look at is this: if they are seeing somebody who has never been to them before, somebody who never really goes to a GP but keeps turning up, an alarm bell should be sounding.

I will cite some other figures, although I am aware of the time factor. Some 33% of pancreatic cancer patients feel that they have been given conflicting information, compared with 29% of all other cancer patients. Some 13% of pancreatic cancer patients did not get answers to important questions all or most of the time, compared with 9% of all other cancer patients. Some 36% of pancreatic cancer patients felt less likely to feel that their views were being taken into account by doctors and nurses when discussing treatment, compared with 30% of all other cancer patients.

As I said, I am being totally partisan. The all-party group’s experience and my experience personally is that, for some reason, this country is way down the line on pancreatic cancer—despite it being the fifth biggest cancer, in terms of the number of people who die from it—when it comes to international comparisons for improved outcomes. There are treatments, but far too often they are far too late, because of people’s constant appearances at GPs.

Other Members have talked about dignity and humiliation. I will be utterly personal about the issue, because, in one sense, that is what has driven me to get so involved. I remember my partner’s situation. It was a case of finally going to hospital, being told that people there would do some tests and then that they would carry out an operation because they thought it was cancer. “What does that mean?” We did not know.

I can remember being sat in the hospital and my partner coming back, straight from surgery, with things wrapped round. We said, “What is it?” The doctor turned round and said, “Oh, it’s terminal.” That is the kind of situation that happens. Where is the understanding? Where are the few minutes where they say, “Let’s just go through this. Let’s look at the options”?

I understand that people working in hospitals are under pressure, but there were repeated examples of such experiences at the all-party group. As other hon. Members, particularly those from Northern Ireland, have said, a person should not have to be brain of Britain or have gone on a training course to have a little more time and to treat people with a little more dignity.

I finish with two particular demands, or requests, for the Minister. The all-party group wants consideration to be given to an awareness campaign, particularly about pancreatic cancer. I add my praise for the involvement of Macmillan and Pancreatic Cancer UK, which is the charity that backs up the all-party group and continues to support us, in terms of the campaign on awareness.

Macmillan has been piloting decision tools to help GPs assess the risk of cancer, including pancreatic cancer, and make decisions about further referrals. We would like to see those properly evaluated with consideration given to a full roll-out of the pilots that Macmillan has been spearheading so fantastically.

We have also been trying to raise awareness that pancreatic cancer is not an old man’s disease, in crude terms. The risk increases with age, but 35% of all diagnoses of pancreatic cancer occur in people under the age of 65—that is about 3,000 of the 8,500 diagnosed each year. The split among men and women is reasonably even, with slightly more cases in women than in men. I am not sure that that is clear, so that would be part of what we would request in a campaign. It would lead to greater awareness and, hopefully, earlier referrals and better outcomes.

My final request relates to the national cancer patient experience data. Pancreatic Cancer UK paid for a separation of data for pancreatic cancer patients—in fact, the Department of Health paid for that to be done once. We would like pancreatic cancer patients to be routinely separated out from all upper-gastrointestinal cancer patients as part of the system of getting such statistics. I do not see why a charity or the Department should try to do that as an extra thing. It should be part and parcel of the routine, given the nature and impact of this dreadful, increasingly misunderstood cancer.