Cancer Patient Experience

Albert Owen Excerpts

Wednesday 30th October 2013 Westminster Hall

[Mark Durkan]

I fully accept the hon. Gentleman’s point. The point that I was about to make myself exactly “rhymes” with his observation. It is that these people are in a position to offer advice to others diagnosed with cancer; to offer advocacy to politicians, service providers and managers as to how things can be improved; and to offer real insight in administrative terms, by helping to future-manage such services and review them against the sort of yardsticks that other hon. Members have said they must be measured against.

I said that the radiotherapy unit now to be based at Altnagelvin, which will be funded on a cross-border basis in Ireland, is really a roll-out of part of the wider cancer strategy in Northern Ireland. A number of years ago, I served as Minister of Finance in Northern Ireland in the first Executive following the Good Friday agreement, and then as Deputy First Minister. One of the most important things I did was when we negotiated what was called a reinvestment and reform package, with new borrowing powers coming from Westminster but also a funding package that was to complement the infrastructure fund that we as the Executive had developed.

The first item that I was able to insist on with Tony Blair and then with the right hon. Member for Kirkcaldy and Cowdenbeath (Mr Brown)—the two former Prime Ministers—was that funding should go to the regional cancer centre. It was meant to be a key part of the cancer strategy in Northern Ireland that was being led and advocated by Professor Paddy Johnston. We were able to fund that scheme, which was not coming forward and which did not seem to be breaking through in the Department of Health’s plans or budget submissions to me or to anybody else. We had been on the point of losing Paddy Johnston, who was going to go back to the United States, where he was going to be funded to do all sorts of things and use his skills.

However, as I say, we were able to create that cancer centre without going to a private finance initiative or anything else. Great work is being done there, not only for the patients it serves in Northern Ireland but because of the calibre of people it can attract and the clinical trials it can run, which are all part of improving the picture of cancer services throughout the United Kingdom.

As other hon. Members have said, staff at that centre and others are helping to work miracles every day with people who are suffering from cancer, but they are very conscious and very clear that their task is still to keep narrowing the gap between what the services ought to be and what they actually are, which is why we constantly need to drive on performance and outcomes in these areas.

Regarding the cancer experience, I am also very conscious of a constituent of mine who wrote a book a number of years ago, based on her experience, which basically says, “I have cancer but it doesn’t have me.” She is a lady called Kate Dooher and her book sets out very clearly her experience of a cancer journey and the implications for her family, colleagues and friends. Again, policy makers can get real insight from that about what the issues mean in real and practical terms.

I am a member of a number of the all-party groups on cancer, including all-party groups on different cancers, here in Parliament. Those groups can provide a platform for those with real insights, those who are providing care, those who are leading a lot of the professional fight against cancer and those who are driving the research platform. We should not underestimate the importance of either research or the linkage between good care networks and research. That is why Cancer Research UK is one of the most prominent advocates for more radiotherapy provision, because it believes that such provision not only makes services more accessible but that it is important in qualitative terms and in the research benefits that can come from improving services and treatment models in the future.

Going back to what the hon. Member for Hertsmere said, that is why, when we are talking about the patient experience, we very much have to listen to the patients themselves and base things not on what we think is the “nice fit, reasonable fit, just about cost-effective patient experience” but think in real and wholehearted terms about the patient experience.

Patients know how they have been able to improve their own experience for themselves, and they know how services whose staff might think they work do not really work for them, and how those services can be improved and modified. We need to gain their insight and emancipate their understanding as part of lighting the way forward for ourselves.

[Albert Owen (in the Chair)]

In calling Eric Ollerenshaw to speak, I remind Members that I will be calling the Front-Bench spokespersons at 10.40 am at the latest.

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[Liz Kendall (Leicester West) (Lab)]

It is a pleasure to serve under your chairmanship, Mr Owen, and I really want to congratulate the hon. Member for Hertsmere (Mr Clappison) on securing this important debate.

I will start with why this issue is so important. At the risk of stating the obvious, first and foremost, it is crucial for patients and their families, and as the hon. Member for Strangford (Jim Shannon) said, many of us—not only people of his age—are affected. Today, the father of one of my dearest and oldest friends is going through yet another operation for cancer. I saw him on Saturday night. I shall spend today thinking about him and all his family, and I hope that it goes well.

We know that a good experience makes all patients feel as though they have been supported and respected as individuals, whereas a bad experience can make them feel, at best, as though their needs do not matter and, at worst, that their basic human dignity has been denied. Cancer patients whom I speak to, such as those at the local Macmillan Cancer Support group, which I recently joined in my constituency, constantly emphasise their experience of care and how they are treated by NHS staff as absolutely critical at such a frightening time in their lives. However, the importance of the patient experience goes far beyond the personal value to individuals.

There is now strong evidence that good patient experience is consistently and positively associated with better health outcomes and safer and more clinically effective care. A systematic review of 55 studies, which was published in the British Medical Journal last year, found that good experience is linked to better outcomes for individual patients—both the outcomes that patients themselves report and objectively measured outcomes. It was also found that patients who have a good experience are also more likely to stick to their recommended treatments and medicines and to use preventive services, such as screening, immunisation and healthy living programmes.

The third reason why patient experience is important is that there is increasing evidence—from the US, if not from the UK—that it is linked to getting better value for money. A good patient experience, in the US at least, is associated with a reduced length of stay in hospitals and fewer problems with patient safety—so-called adverse patient events. Hospitals that achieve good scores on patient experience also have higher staff retention rates, which also contribute to lower costs through lower staff turnover. Understanding the link between staff experience and patient experience is absolutely essential in this debate. That is actually common sense: when staff feel valued and respected, they are more likely to treat patients in the same way.

What makes for a good experience for cancer patients? Macmillan Cancer Support says that three issues are consistently highlighted. The first is meaningful involvement in their care, not only for individual cancer patients, but for their families, too. The second is excellent communication, so the patient’s diagnosis, treatment options, risks and follow-up care are clearly and simply explained. The third is properly co-ordinated care. When people are going through a desperately difficult time, the last thing that they want to face is a battle between all the different services. They want their hospital, primary and community services, social care and wider help—such as financial information and welfare and benefits advice—brought together in a seamless package that is built around their needs and not the individual institutions. That kind of whole person care is vital to all patients, not only those with cancer, but if we can get it right for cancer patients, I think that we can get it right for all patients, too.

The previous Government made huge strides in improving cancer care through the work of the national cancer plan and the cancer networks. There is still further to go, particularly with earlier diagnosis, but major progress was made in starting to bring NHS care for cancer patients up to the standards in other countries. The national cancer patient experience survey, which was started under the previous Government, was absolutely integral to that. The latest results, from August this year, found that about 80% of cancer patients rate their care as good or excellent. However, there are warning signs that problems are building in the system, which could harm that progress.

Waits for vital cancer tests are getting longer. The number of people waiting more than six weeks for diagnostic tests, including ultrasounds, colonoscopies and gastroscopies, has increased by 65% between July 2010 and July 2013. The cancer networks that were so important in improving the quality and co-ordination of care have been abolished, with their work subsumed into generic clinical networks, and many staff say that that risks losing their vital specialist and local expertise. We have seen a reduction of 5,000 nursing posts since 2010, including in vital specialist services, which is putting huge pressure on remaining staff.

Many hon. Members have talked about the persistent long-term variations in the experience of cancer patients. The national cancer survey has consistently shown worse outcomes for patients with rarer cancers, for younger patients—an issue highlighted by the Teenage Cancer Trust—and for patients from ethnic minority communities, which is an issue particularly close to my heart as an MP for the very diverse city of Leicester. There are also continuing problems with ensuring that patients get the financial information and benefits advice they need and with the crucial issue of end-of-life care.

I am sure hon. Members saw the excellent report published earlier this week by Macmillan Cancer Support, which found that 73% of people with cancer would prefer to die at home but that less than a third are able to do so. Therefore, some 36,000 cancer patients died in hospital when they would have preferred to die at home. That is not only terrible for cancer patients and their families at an awful and difficult time; it does not deliver best value for taxpayers’ money either. Research by the national end-of-life care programme suggests that there are potential net savings of some £950 for every person who dies in the community, rather than in a hospital, because of the reduced use of hospital beds.

The Minister, whom I welcome to her post, may not be aware of this because she was not in her post at the time, but in the cross-party talks on Andrew Dilnot’s recommendations for funding social care, the shadow Health Secretary and I proposed removing the means test for end-of-life social care to help make choice a reality at that difficult time. I hope that the Minister will be able to update us on the Government’s actions.

I will now focus on what we need to do to put cancer patient experience much more fundamentally at the heart of the NHS. I understand that the national cancer patient experience survey is currently under review. Will the Minister commit to that survey continuing to happen during each year of the coalition? Those data are vital, but we must use them effectively. A key point highlighted by the hon. Member for Basildon and Billericay (Mr Baron), who chairs the all-party group on cancer, is that we must ensure that each clinical commissioning group is properly held to account for improving patient experience, including for cancer patients.

Currently, there are generic indicators on patient experience of hospital care and the friends and family test for acute inpatient care and A and E, but is NHS England developing more specific patient experience indicators for individual hospital services, including cancer, and, across the whole patient pathway, for primary and community services, too?

As hon. Members will know, last week, the Care Quality Commission published results of its new hospital inspection scheme, which is based on 150 indicators. I welcome and pay tribute to the excellent work of the chief inspector of hospitals, Professor Sir Mike Richards, who is the former national clinical director for cancer, but only two of the 150 indicators in the CQC’s new methodology currently address patient experience. Again, those indicators are generic. What plans does the CQC have to ensure that patient experience of individual services, including cancer services, is assessed? Will the chief inspector of hospitals work with the chief inspectors of social care and GPs to ensure that we join up our thinking in that area?

I will conclude on an important point relating to what the hon. Member for Basildon and Billericay said. We must ensure that we address patient experience locally and on the ground, not just nationally. Although holding CCGs to account and the CQC’s monitoring of hospitals are important, they essentially happen after the event—after care has been delivered. We must ensure that patient experience is at the heart of what all parts of the NHS and all staff do day in, day out. I have two suggestions for how we can make that happen.

First, we have to transform the use of what I call real-time patient feedback—not annual surveys or annual monitoring, but day in, day out use of patient feedback. There are brilliant services such as Patient Opinion, which allows patients to tell their story, positive or negative, online, by phone or in writing. Hospitals, GPs and social care providers that register with Patient Opinion can see what people are saying about them on that same day. I know because I used the service when I had to make an unfortunate visit to an urgent care centre this time last year. Patient Opinion is a powerful tool for individual patients to tell their story, for members of the public to see what others are saying about their service and for staff to hear first-hand, immediately what they can do to improve the quality of care. What plans do the Government have to encourage greater use of such services across the NHS and social care?

Secondly, the education and training of NHS staff is important. Last week, I visited the university of Worcester, which is doing pioneering work. Patients and users help to interview student nurses who apply for the course to ensure that they have the right values and attitude. Patients and users help to develop the curriculum used to train student nurses and other health professionals to ensure that it covers the issues that really matter to patients. Patients and users are also an integral part of the course, and they help with the training process.

In Leicester, we also have a groundbreaking project between De Montfort university and Macmillan Cancer Support in which students training to be nurses, NHS managers or pharmacists volunteer for Macmillan. Those students get vital skills and experience of communicating with cancer patients. How will the Government ensure that such work to improve the skills, knowledge, experience and training of staff starts when they begin working for health services? What vital work is being done to hold CCGs to account and to monitor the quality of care in hospitals?

[Albert Owen (in the Chair)]

I also congratulate the Minister and welcome her to her new role.

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[Jane Ellison]

Absolutely, and I will talk a little about some of the ways in which that will be done, but I would make the point that the Secretary of State has made this an absolute priority. He could not have been clearer recently about the priority that the Government and he personally put on the patient experience. We have never given such high-profile attention to talking about the patient experience and patient care. I hope that gives some reassurance, but I will talk later about some specifics.

In the same vein, let me pick up some of the shadow Minister’s interesting points. I was interested in some of the initiatives she mentioned. Again, they all feed into the idea of putting patient care and the patient experience absolutely at the heart of things. I certainly undertake to look at some of the specific local examples she highlighted.

To drive a good patient experience, we must listen to patients’ voices. In December 2010, the Government published the first national cancer patient experience survey report. The survey was the first cancer patient survey to take place for six years, the first to involve patients with all types of cancer and the first national survey explicitly to use the word “cancer”. The survey revealed that, while there had been substantial improvements in the patient experience since 2000, there are still unacceptable variations in the quality of care people receive, as hon. Members have highlighted.

To drive improvement locally, reports were produced for individual trusts. This is where the transparency agenda the Government set such store by is really important. The data are openly available and published, and all of us—not just people in the NHS, but hon. Members, local councillors and local government—can hold commissioners and providers to account, based on that openly published data at local trust level. Commissioners and providers can be directly challenged and incentivised to improve. Providers can benchmark their performance against each other’s. Quality Health, which provided the survey, also visits poor-performing trusts to discuss their results in detail. A number of those discussions have led to really quick improvements in local outcomes, but there is always more to do.

The cancer outcomes strategy, which we published in January 2011, built on those results. We have acted to improve the patient experience at national level by implementing the cancer information prescriptions programme and expanding the Connected national advanced communications skills programme, which is a bit of a mouthful, but which is essentially about supporting thousands of clinicians to work more effectively with patients, picking up the many issues highlighted by my hon. Friend, the hon. Member for Strangford (Jim Shannon) and others regarding how seemingly small issues and small aspects of communication actually matter an awful lot at an intensely difficult time for patients and their families.

Since 1 April this year, NHS England has been responsible for delivering improvements in the cancer patient experience. That is one reason why I cannot just stand here and make particular commitments. Such debates are, however, useful because they help NHS England to know parliamentarians’ priorities in terms of where it should focus some of its attention.

Building on the work of the 2010 and 2012 patient experience surveys, NHS England published its report on the 2013 survey at the end of August. It showed improvements in many areas and some very positive experiences of aspects of care, including on privacy, being treated with respect and being listened to. Overall, 88% of cancer patients reported their care had been excellent or good, and there were some real highlights. As my hon. Friend highlighted, some of the percentages in key areas were in the 80s and 90s, although we are obviously interested in the areas where we could do better.

It is clear that many trusts acted on the findings between 2010 and 2013, and they are to be congratulated on that. Many have reorganised their pathways and services, retrained staff and created further mechanisms for patients. Cancer charities have been involved in further analysing the data to understand particular aspects of care and particular groups of patients and to create new information for patients, where needed. Much of that has been touched on this morning.

We have also looked at some of the variations in care. The hon. Member for Strangford and others mentioned care plans. Over the past three years, more work has been done on them, but given that only 22% of patients were offered care plans, everyone would acknowledge considerable improvement is still needed.

NHS England has convened a cancer patient experience advisory group to get direct input on priorities for service improvement. The group includes clinicians, experts concerned with cancer care and, crucially, patients. The group’s first meeting has now taken place. It examined the results of the 2013 survey, and actions have been agreed. As a result, NHS Improving Quality will develop a rapid-response programme to visit trusts with poor scores to discuss results and suggest improvements. I hope that gives Members some assurance about the fact that the survey does not just sit there; it is very much being acted on.

NHS England also wants to highlight high-performing trusts and identify best practice. It will put that information into toolkits that other trusts can use to develop better service in response to poor scores. NHS England is also encouraging the use of the Macmillan values-based standard and other patient-led tools, which engage patients and staff in co-creating and measuring some of the things that matter so much with regard to dignity and respect. All organisations involved in delivering care are urged to look at the survey and take it extremely seriously.

Time is a little short, so I will try to answer some of the specific questions raised. First, we recognise that making relational care a priority is important. That includes communication, trusting nurses and all the other things that have been talked about today. Rather than include references in the mandate, we have included important pledges in the NHS constitution, setting out what patients have a right to expect. All NHS services have a duty under the constitution when carrying out their functions, and we have a range of indicators to capture how well the NHS is performing in delivering dignified and personal care.

On the CQC inspection regime, I can reassure my hon. Friend that the CQC has made a commitment to listen and to take the experiences of people using services very much to heart. The new inspection teams include trained members of the public called “experts by experience”. In addition to public listening events, that will be an important way of putting patient experience at the heart of inspections.

A specific question was asked about including secondary breast cancer in the survey. NHS England is trying to ensure the survey catches the needs of all patients and looks across all cancers, but my hon. Friend’s point will have been taken.

I was asked about the future of the survey, including by the shadow Minister. NHS England has confirmed it will be run in 2014. The organisation will then undertake a review of all the surveys it runs. The debate will have highlighted to it the value that so many people place on the survey and the important role it has played in driving improvement. I cannot say whether NHS England will continue it, but I will certainly vividly describe to NHS England how strongly Members feel and what role they think the survey has had in driving change.

My hon. Friend’s last question was about using the survey to improve cancer care, and I have alluded to the ways in which we are trying to do that. In particular, I give him the assurance that the patient experience, putting the patient first and championing their care is absolutely at the heart of what all of us at the Department of Health are doing, taking our lead from the Secretary of State.

I thank my hon. Friend for highlighting the issue, and I echo his words from the start of the debate. I, too, thank the NHS staff and charities that do such amazing work in this area, and I hope hon. Members will continue to debate this important topic.

[Albert Owen (in the Chair)]

I am grateful to the Minister, the sponsor of the debate and all the Members who took part.