Improving Cancer Outcomes

Jack Lopresti Excerpts

Thursday 5th February 2015 Commons Chamber

[Mr Baron]

That is a very good point, and I will touch on it briefly later; I know that my hon. Friend will do so as well. I agree that there is a danger of that. We need to raise our one-year figures significantly—not by just a few percentage points; if we want to be among the best in Europe, then it has to be by 10 percentage points—and that means that we cannot exclude a lot of the rarer cancers, because there is only so much low-hanging fruit. I hope that this sends out a general message that there must be initiatives across the whole spectrum of all 200 cancers. The rarer cancers are the poor cousin at the moment, and we need to address that specifically. I look forward to hearing what my hon. Friend says later.

Let me explain why it was important to get the one-year figures into the delivery dashboard. We were told that it was all very well to get them into the outcomes indicator set, but they also needed to get into the top tier of NHS accountability—namely, the delivery dashboard. Chief executives of CCGs have told us that they felt they were monitored on that delivery dashboard, or—shall I put it this way—that that was their first port of call.

It is great to be able to inform the House that cancer is now the only disease-specific outcome indicator on the delivery dashboard. I say “great” in the sense that I am delighted that cancer is included, although I wish the delivery dashboard had more outcome indicators, not just process indicators. Processes are fine, but they do not necessarily lead to better outcomes. In my view, if we are serious about improving outcomes, the more outcome indicators we can get on to the delivery dashboard across a range of diseases, the better.

Getting the one-year figures on to the delivery dashboard will be transformational only if we use the tools in the toolbox and ensure that CCGs are held to account effectively. That means not only addressing poor performance, but encouraging those with the highest survival rates in the UK to continue to strive for improvement. There is no point having such figures if we do not use them. Will the Minister clarify how CCGs are being made aware of the upcoming changes to accountability? More importantly, what measures will NHS England take to address underperformance in one-year cancer survival rates by CCGs?

On survival rates, I want to touch on another issue that the all-party group has campaigned on—inequalities. Our recent report, “Cancer across the Domains: A vision for 2020”, particularly highlighted the poorer outcomes for older people. We are not the only ones to have drawn attention to the issue. A recent report from the National Cancer Intelligence Network noted that

“over half of all cancer deaths occur in people aged 75 and over”.

A National Audit Office report on cancer services, published last month, found that

“cancer patients aged 55-64 are 20% more likely to survive for at least 1 year after diagnosis than those aged 75-99.”

Such variation is completely unacceptable. Evidence suggests that the under-treatment of older people happens because some clinicians base their prescriptions on chronological age, not necessarily on their fitness to receive treatment. There is general recognition that older people suffer worse outcomes. The NAO report accepted that

“survival rates for older people are expected to be lower”,

but stated that

“this is unlikely to explain fully the significant variation between age groups.”

I suggest that we need to look at that issue. The all-party group on cancer welcomes the increased focus on it. However, we must ensure that such focus results in action and, as with early diagnosis, that the right accountability levers are in place to deliver real change.

Our recent report highlights our concerns about the fact that all the cancer mortality indicators in the NHS outcomes framework are for under-75s. It is almost as though the NHS has made a decision that the lives of those over 75 are worth just a little bit less than those under 75. That impression has been created in certain quarters, and we need to address that perception. We believe that it sends the wrong message about the importance of older people with cancer. Will the Minister outline what steps the Department is taking to tackle the inequalities faced by older people with cancer?

To move on to patient experience, we tend to think of outcomes simply as survival rates, but it is essential for the NHS to deliver good outcomes for patients at every stage of the cancer pathway. Members will be aware that tomorrow marks two years since the report of the Francis inquiry into the Mid Staffordshire scandal. It therefore feels like an appropriate moment to highlight the importance of the patient experience not as an add-on or a facility that is nice to have, but as an integral part of how we deliver cancer care.

The cancer patient experience survey has given us valuable insight into the experience of cancer patients in the UK. The findings continue to reveal widespread variation in the experience of care that people receive. For example, people with rarer cancers, which were mentioned by my hon. Friend the Member for Castle Point (Rebecca Harris), continue to report poorer experiences than those with more common cancers. The same is true of people with long-term conditions, younger patients, older patients, some ethnic minority patients and patients treated in London hospitals. That widespread variation is unacceptable.

Such an insight is worth very little if we do not ensure that it is used to drive real change. I suggest to the Minister that the mechanisms for doing so simply do not exist at the moment, or if they do, they are disparate and unco-ordinated. The all-party group has real concerns. We know that some trusts develop action plans based on CPES results, but there is no requirement for them to do so. NHS England does not require trusts to report on results. CCGs and NHS England do not seem actively to measure NHS trusts’ progress against their action plans to improve their scores. All that leads to a gap in accountability on the cancer patient experience. There are still concerns about the accessibility of the data from trusts and other local bodies for patients. For example, trust-level reports do not seem to be available on official NHS websites.

The all-party group was pleased that the Minister, in her response to “Cancer across the Domains”, confirmed there were no plans to discontinue the CPES. However, we were concerned to hear that, due to procurement issues, the CPES may not report in 2015. Will she provide an update on whether it will report results in 2015? Perhaps more importantly, will she clarify how NHS England will ensure that the CPES is used to drive improvements in the cancer patient experience, and to hold trusts and CCGs to account?

[Jack Lopresti (Filton and Bradley Stoke) (Con)]

Aside from my hon. Friend’s points about the strategic level of decision making and accountability, does he agree that at an individual level it is crucial to have complete clarity, understanding and credibility from the point of view of the consultant and the patient, and that there should not be any room for ambiguity or confusion?

[Mr Baron]

My hon. Friend makes an excellent point. Good communication and indeed consultation is terribly important, and it is one of the key issues that the cancer patient experience survey addresses in trying to gauge patients’ experiences. The NHS can sometimes forget that patients with cancer, like those with long-term conditions generally, are often very knowledgeable about their condition. They need to be consulted, and there must be better communication. That is why we should formulate the cancer patient experience survey better, and ensure we draw out the lessons to be learned so that we can take action to improve experience. I completely agree with my hon. Friend, and I look forward to hearing his speech.

Finally, may I touch briefly on data access? The effective use of data is the foundation for improving cancer outcomes. Good data are at the epicentre of how we are going to improve outcomes. However, I suggest to the Minister that there are problems. Health charities play a crucial role in driving improvements in the health service, including in cancer services. For example, Macmillan’s research has provided invaluable new insight into patient clinical outcomes and the accuracy of GP cancer referrals, which has helped to improve services. However, charities and others are finding it increasingly difficult to access routinely collected data, leaving vital projects stranded for months. In some cases, they do not get the data at all.

There are a number of reasons for that. First, information governance rules are being applied inconsistently. Changes to the legal status of bodies under the NHS reforms have led to confusion about who data can be shared with and, in some cases, have reduced the capacity for analysis. Secondly, different parts of the system are failing to work together. Both nationally and locally, organisations are adopting an increasingly fragmented approach. Furthermore, organisations that are responsible for releasing data do not appear to have the capacity to do so. In a recent Public Accounts Committee hearing, Cancer Research UK indicated that the research group had been waiting 16 months to access data on cancer waiting times.

As the Minister will know, the recent National Audit Office report on cancer services made recommendations on that issue. First, it recommended that the Health and Social Care Information Centre should be

“held to account for how effectively it is discharging its responsibility to disseminate data to help drive improvements”.

Secondly, it recommended:

“As a minimum, it should seek, and publish the results of, regular feedback from NHS data users.”

The cancer community was concerned to hear Sean Duffy call for greater pressure to release and use data at our Britain against cancer conference. To me, that sent a clear signal that further leadership from the Government was needed on this issue. When she responds, will the Minister outline what plans the Department has to clarify the data access rules and to ensure that they are applied consistently, so that we can plan and make proper use of them? That is the essential point.

In conclusion, I thank the Minister for being here and for being prepared to respond to the debate. I have not had a chance to cover a great number of areas, including inequalities more generally, cancer commissioning and survivorship to name a few. However, I hope and expect that other Members will touch on those important issues. I will end where I began: by focusing not only on the scale of the challenge facing us, with the news that 3 million people will be living with cancer by the end of the next Parliament, but on the opportunity. Because of many of our campaigns over the past few years, the NHS now has the tools that it needs to accelerate the improvements in cancer survival rates. The challenge that I set for the Minister today is to ensure that NHS England uses those tools to full effect to deliver the best outcomes in Europe and, quite literally, to save tens of thousands of lives.

--- Later in debate ---

[Jack Lopresti (Filton and Bradley Stoke) (Con)]

I was not entirely sure whether it was a good idea to apply to speak in the debate. It is the first time I have properly put anything on the record about my own experience. I am a cancer survivor. A year ago virtually to the day, I finished about 30 sessions of daily radiotherapy, with oral chemotherapy. It is like awakening from a bad dream. I wanted to get on with my life and not look back. Looking back and putting it all together has been quite difficult this week, but the thing that convinced me that I should say a few words was that, apart from support from family, friends and colleagues once I had my initial diagnosis, the most valuable thing for me in getting through the whole thing, keeping my spirits up and being positive was reading, as an inspiration, about people who had been through the journey.

I ordered tonnes of books from Amazon. I read Bob Champion’s story and re-read the chapter in Rudy Giuliani’s memoirs on beating cancer to give myself as much information as I could about happy endings and going through the process. So I will tell my story, with the message that anyone who is facing the journey, which is very daunting and can be a lonely process, despite the best efforts of friends and family, will get through it. All things end and I am pleased to say that, after I finished my treatment, I was back here within a week or two.

Within a few months of listening to my friends telling me not to overdo it, I managed to run the Bristol half-marathon and the Stroud half-marathon before Christmas. [Hon. Members: “Hear, hear.”] Thank you. I have just applied to run the first Bristol to Bath marathon in October. That points to a surprising thing. I was always incredibly fit and healthy. I had run my first full marathon nearly a year before my diagnosis. So this can come out of left-field. That is not an excuse for not looking after ourselves, however, because the fact that I had looked after myself and was fit and healthy meant I coped with my treatment better and got through it more easily than I might have done.

Two years ago in January I had what I thought was the normal annual virus or bug. I thought perhaps I had overdone it a bit at Christmas, so I carried on with the usual paracetamol and got on with things, but eventually, after a couple of weeks, I succumbed and went to see my GP. She was very good and very calm and said, “We’re not quite sure what it is,” but she did refer me quite quickly to my local hospital as an out-patient.

The staff there said they were worried about me and the fact that I kept flinching when they pressed on my appendix area. They did not let me go home even to get some books and my pyjamas, but my family helped me out. I stayed in for a few days, and the prognosis when the consultant let me go on the Monday morning was that they were pretty certain it was appendicitis but I had an abscess and it could well have hit a cancer. That was the first time I had heard that word. He quickly reassured me that I was far too healthy-looking and it was not very likely, but it was a possibility. They gave me intravenous antibiotics while I was there and sent me home to recover saying, “We don’t normally like to operate on appendixes straight away these days because it is a tricky operation and can be treated with antibiotics.”

To cut a long story short, this went on for two or three months. I kept finishing the antibiotics, and within about 10 days I would start to feel really ill again. My hon. Friend the Member for Basildon and Billericay (Mr Baron) said to me, “For goodness sake, go back to your constituency and get whatever’s in your body removed because you’re obviously very ill.” I even went to the nurse here at Parliament who said almost the same thing: “I’m very worried. I’m not happy. Get back and get it removed.” But the hospital said, “Oh, it’s a grumbling appendix” and kept me in for another week on intravenous antibiotics. Within a week or two of that not working three months had passed, so the initial stages of quick referral and reasonable expectation of what it could be had dragged on for a long time.

I again recovered quite quickly after the operation, but within a week was due to go back for a referral. I had a phone call in the morning: “You’re coming in to see the consultant tonight?” “Yes, I am. Is that still okay?” “Yes, it’s fine. Bring somebody with you.” That was the first indication that things perhaps were not going to work out. I took my mother, and they gave me the good news. I was being very cheerful because my mother was with me and I said, “The only thing I really want to know is can you sort it?” “Yes,” was the answer, so I was fine. “And can we get on with it?” I asked right away, and they did, in fairness. I started six cycles of chemotherapy over three months, which I got through relatively easily because of my health and my natural optimism.

I remember doing gardening for the first time in my life and planting a fig tree in my garden, and thought things were progressing quite well. Colleagues sent me books. My hon. Friend the Member for Bristol North West (Charlotte Leslie) sent me some poetry which was really nice of her and I will always be grateful. So that period passed well, and I had cracked it in my own mind: I was in that place, and I was moving forward.

Then, on 17 September, after a sort of debriefing appointment to ask me how I felt and how I was getting on with things, I had a letter which said: “I saw Mr Lopresti today in clinic. He has chosen to stop his chemotherapy after three months and so has completed treatment.” I thought to myself, “That conversation never took place,” and started to question myself and wonder whether I had heard correctly. Fortunately, I then had a consultation with the oncologist who said, “You will have six rounds of treatment over three months.” For the first time in my life I did not question instructions: I did as I was told. Actually, I am very impatient, and I just wanted to get on with it and get on with the next stage of my life, but I had started to question whether I had heard that correctly.

I thought about what had happened and spoke to my mother and my wife who had been there. They said, “Yes, they said, ‘It hasn’t spread, we’re going to cure it, and we’re going to give you six rounds.’” So I made a complaint. I said, “This has knocked me back probably almost as much as the original diagnosis,” because it shatters confidence in getting straightforward, reasonable, objective analysis and projections of treatment. I also thought, “What would have happened if I was an older person on my own and feeling quite vulnerable?” The apology I received explained that it was because a randomised control was being carried out and they were trying to work out whether giving somebody six rounds in three months was as good as 12 lots in six months. That is fine, and as it turned out my next scan was clear—as have been all my scans, so I am in good order. If they had told me, “You are relatively young and fit. You don’t need 12 lots because it can damage the nerves and there are long-term consequences”, I would have been okay with that, but in fact a conversation that did not take place was recorded and they wrote to me about it. I started to think, “If they can make a mistake on this, what else have I discovered?”

So I had the apology, and I went back to see my consultant. He said to me, “I have really good news. Your scan is clear. You are fine. We can just keep an eye on you or you can have some radiotherapy.” I said, “Look, given what has gone on, I want everything you’ve got. Whatever you’ve got, let’s do it once, get it done. I do not care if you have to carry me out of here, let’s try to get it first time.” In fairness, they did that. I had daily radiotherapy, which surprisingly was more debilitating and took more of my energy than my long course of chemotherapy. I think that was because it was daily and because of the way radiation reacts on the body.

As hon. Members have said, early intervention is, obviously, key. The referral to the hospital was done quickly in my case and was great. The problem was that three-month delay, when a tumour about the size of a fist was in my body. Fortunately, the cancer had not gone anywhere else, but I had a very lucky escape. It could have moved and gone elsewhere, and we could be having a different conversation. I agree that early intervention is key and people should get off to the hospitals quickly, but if there is any suspicion that something is cancer, people have an obligation to get on with dealing with it as quickly as possible, for all the obvious reasons.

I received great medical support and care from the nurses—the people at the sharp end, the people in the wards, the people who did my PICC line—but I felt slightly detached from the consultants. As I say, the experience of a letter completely misrepresenting an interview that took place was shattering and it shredded my nerves for quite a time. I am pleased that the Government have been working to achieve earlier diagnosis of cancer and to set up a strategy to save 5,000 lives by 2015. The latest projections are that, as a result, the NHS is on track to save an extra 12,000 lives each year. That is all fantastic.

What I wish to say in conclusion—I apologise for my emotion—is that when someone gets the diagnosis, they have to stay focused and stay as positive as they can. There are lots of help groups, such as Macmillan.

[Mr Baron]

I commend my hon. Friend for the bravery he has shown, not just in how he dealt with his complaint, but in sharing his journey with the House, because nothing is more powerful than hearing personal testimony. He illustrates better than anybody in the Chamber will do today the importance of good communication and consultation between patients and the NHS and the consultants. For me, at least, that is the key message he is portraying. It is terribly important, and I hope all of us and, in particular, the NHS learn from it.

[Jack Lopresti]

I thank my hon. Friend for his kind remarks, which I shall not dwell on. You do become, if not an expert, certainly quite knowledgeable, and are introduced to the cancer world. There is a lot of information out there. I was told by some consultants not to spend too much time on the internet, as you can go down different avenues and worry yourself to death, but there are lots of good books. I would recommend talking to Macmillan and other cancer groups, reading others’ stories, being inspired and being motivated. You should never lose heart.

[Bob Stewart (Beckenham) (Con)]

Will my hon. Friend give way?

[Jack Lopresti]

I had finished—

[Bob Stewart]

I will finish for my hon. Friend. This is a very brave man, because he wants to join the Royal Air Force. He is fully fit, he does marathons—he is a lunatic of course—and he wants to join the Royal Auxiliary Air Force, whose tie I am wearing in support of his bid.