Improving Cancer Outcomes

Rebecca Harris Excerpts

Thursday 5th February 2015 Commons Chamber

[Mr Baron]

Obviously, I cannot comment on the specific case, but I repeat that putting the one-year figures up in lights will put pressure—the best kind of pressure—on CCGs to look at all the initiatives at their command.

I do not think that the Department of Health or NHS England should be too prescriptive about this. We have CCG managements earning six-figure salaries who should, frankly, be able to make these sorts of decisions by introducing initiatives that best suit their populations. Where there is, say, a black and minority ethnic population, an elderly population, or a mining community population, initiatives have to be skewed accordingly, and that is what CCG managements should be doing. We have to leave an element of local initiative. One cannot just sign a cheque to the NHS for £120 billion and not expect accountability. By putting CCGs’ one-year figures up in lights, we can, over a period of time—there is no quick fix—monitor how they are doing. In the case that the hon. Lady mentioned, I would hope that the CCG would have a look at local initiatives that could perhaps change the situation for the better.

[Rebecca Harris (Castle Point) (Con)]

I, too, welcome the one-year survival rates being put up in lights. Does my hon. Friend agree that there may be a risk of missing rarer cancers such as brain tumours in a drive to catch what might be seen as the low-hanging fruit through screening processes?

[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?

--- Later in debate ---

[Rebecca Harris (Castle Point) (Con)]

As one of the co-sponsors of the debate and as chair of the all-party group on brain tumours, I thank the Backbench Business Committee for scheduling the debate and the Minister for her presence in the Chamber. This is a timely debate: yesterday was world cancer day. It is also timely for me for another reason, which I will come on to later. I think we all agree on the importance of raising awareness of early diagnosis and I will come on to talk about that, but world cancer day has done an enormous amount of work with the many cancer charities to raise awareness of the risk of cancer. We are much more likely to spot the initial signs of the disease, but I think the consensus is that there is still a way to go.

I would first like to share the story of the Green family in my constituency. Their son Danny, who was a happy, sporty, energetic 10-year-old, suffered a dizzy spell after playing football. After a few days of being unwell his parents, Chris and Lisa, were very concerned about this health and took him to hospital. They were turned away and told that he had a migraine. After trying hard to persuade doctors that this was not how their son was normally and that it was not just a migraine, the family took him back to hospital and asked for a scan, only to be told that a scan could take months to schedule. Only when he collapsed in hospital, was he rushed to have a CAT and MRI scan.

Danny was taken straight to Great Ormond Street hospital, where he received incredibly good care. His brain tumour was removed and he stayed in hospital for many months fighting a little-known unfortunate side effect of brain tumour surgery—something called posterior fossa syndrome—that left him badly disabled and unable to speak. Unfortunately, the cancer came back. After a heavy course of chemotherapy it started to shrink again, but tragically, Danny lost his life after contracting pneumonia and another virus in Great Ormond Street in July 2012.

Like many people, the Greens had taken someone to hospital with balance problems and headaches that were dismissed as a migraine. Far too many people finally get treatment only after having had the symptoms for a long time. Mercifully, brain tumours are rare, but that is the problem, because rare cancers are not sufficiently picked up. The Greens would like to see patients displaying possible symptoms of brain tumours given scans much earlier, and greater awareness of the possibility of brain tumours among clinicians.

From this unbearable tragedy, however, sprang a determination by Chris and Lisa Green and Danny’s sister, Holly, to support families going through a similar ordeal and to tackle the lack of awareness about brain tumours. For that reason, they set up a charity, the Danny Green Fund, of which I am glad to be a patron. It has gone from strength to strength in supporting families of those suffering from brain tumours, and in particular the debilitating condition of posterior fossa syndrome. It has raised an enormous amount of money for research—in the past two years alone, this tiny charity on Canvey Island has raised more than £160,000.

Although awareness of more mainstream cancers, such as breast and prostate cancer, has dramatically increased over recent years, and with it funding for research into cures and treatment to improve patient outcomes, it appears that the same level of awareness of, and funding for, brain tumours is not forthcoming. In fact, brain tumours receive just 1% of the entire national spend on cancer research. I find that shocking, considering that brain tumours are the biggest cancer killer of children and adults under 40. Outcomes remain relatively poor, with patients diagnosed with brain tumours having a five-year survival rate of just 18.8%, compared with cancer as a whole, where 50% of patients can expect to survive for at least 10 years.

Between 1970 and 2010, while cancer survival rates doubled, brain tumour survival rates increased by a mere 7.7%. Rare or not, how can we improve these outcomes for the 16,000 people diagnosed every year with a brain tumour? With more than 120 different types, brain tumours are notoriously difficult to diagnose, and our understanding of other cancers does not readily translate to them. I therefore appreciate that improving outcomes will not be easy, but that does not mean that brain tumours should remain an overlooked cancer.

Having worked with two excellent cancer charities, Brain Tumour Research and the Brain Tumour Charity, along with two charities in my constituency, the Danny Green Fund and the Indee Rose Trust, I know that the charities are doing an exceptional job in raising awareness about brain tumours and increasing the funding and research to improve treatments. However, I believe I speak for all these charities and those affected by brain tumours in saying that we need to focus on at least four key issues if we are to improve outcomes.

The first and most obvious area is funding. Brain Tumour Research estimates that to bring research and treatment of brain tumours into line with other cancers and improve patient outcomes, research funding would need to increase to £35 million a year for a decade. We urgently need earlier diagnosis. About 58% of brain cancers are diagnosed in A and E, which is considerably higher than the figure for cancer overall. We need a far better understanding among GPs of symptoms, and better pathways to secure early treatment. Early diagnosis is essential for starting early treatment. As the cancer proceeds, the brain tumours grow, becoming far harder to treat and manage, and for brain tumours, even benign tumour growth, this is potentially fatal.

New NICE guidelines need to improve the early diagnosis of brain tumours so that more patients are diagnosed by a GP and receive early treatment. We also need a national register of all site-specific cancer research to track the research work, the grants and their results. That is vital, as currently there is not a great deal of transparency in the research field and no clear idea of what research is being funded and results achieved. This leads to confusion, duplication of work and a system that prioritises research into more common cancers, rather than those disease areas of most need, such as brain tumours. A national register would make research more transparent, reduce duplication and allow greater variation in type and scope of research.

Finally, we need better and easier access to available treatments. Research into new treatments and early diagnosis is essential to beating brain cancer, but more can be done with existing treatments through the NHS. One such example that has been in the news in the last year is proton beam therapy. It is similar to traditional radiotherapy, destroying cancerous cells with beams of high-energy radiation, but it is far better suited to the brain as it only affects the cancerous cells. More widespread centres using this technology could be set up and the therapy given to as many brain tumour patients as possible.

I hope that some of the issues that I and others will cover in the debate will raise awareness of how outcomes could improve for all cancer patients, particularly brain tumour patients, and put the spotlight on just how deadly brain cancer is in comparison with other cancers.

[Mr Baron]

Before my hon. Friend moves too far from the subject of proton beam therapy—something I would have raised had time allowed it—may I suggest that she is absolutely right to raise it? A new generation of technology is coming out of CERN and going to British companies, and we must do our best to at least explore the feasibility of embracing that within the NHS. Not only is it cheaper and better technology, it is smaller, which means that we could have more sites around the country. I know the Minister is aware of this, as we have raised it before, but I hope that it will be addressed in the debate.

[Rebecca Harris]

This sort of therapy gives great hope to many sufferers of brain tumours in particular.

The debate is timely for another reason; tomorrow is Danny’s birthday. He should have turned 14, and his family, in his memory, have funded a further day of research with the money they have raised. Mercifully, brain tumours are very rare but, as Lisa Green—Danny’s mum—pointed out, “They are not rare enough when it is your child.” I very much hope that the spotlight can be put on the urgency of improving care.