Cancer Patient Experience

James Clappison Excerpts

Wednesday 30th October 2013 Westminster Hall

[Mr James Clappison (Hertsmere) (Con)]

Mr Owen, it is a pleasure to have you chairing the debate on a subject that is important to many families up and down the country. Some 2 million people in the UK are living with or beyond cancer, and that figure is set to rise to 4 million by 2030. Although it is a cause for celebration that more people than ever survive after a diagnosis of cancer, a significant challenge must arise in ensuring that their clinical and human needs are met and that patients have the best possible experience.

Before turning to the nature of the challenge and the points I wish to raise, I pay tribute to all those who work in and support the many charities and voluntary organisations that address the challenge posed by cancer. There are many such organisations, but, with utter respect to all those involved in the field, I shall mention just a few: Macmillan Cancer Support, Cancer Research UK, Breakthrough Breast Cancer, Marie Curie Cancer Care, Breast Cancer Care, Beating Bowel Cancer, the Roy Castle Lung Cancer Foundation and the Teenage Cancer Trust. There are many others. They all do fantastic work and much to improve patient experience and give hope to many of our constituents.

The Government have set great store by patient experience and all the issues that naturally interest cancer patients. I warmly welcome my right hon. Friend the Prime Minister’s ambition to give every cancer patient the opportunity to be a research patient if he or she so wishes; that must interest many people in that position.

The UK now leads the world in recruiting cancer patients to take part in research. One in five cancer patients in the UK takes part in some form of research, which compares with 3% of people in a similar position in the United States. I pay tribute to the research of Cancer Research UK in that regard. Last year, 36,000 patients took part in its trials in this country.

I welcome the fact that NHS England has said that it plans to continue the important national cancer patient experience survey. The results of the 2012-13 survey showed that there is room for improvement in some areas of care. I make that point not as a criticism of the NHS, but to highlight areas where there is room for improvement. Macmillan Cancer Support highlighted some such areas in particular, and has urged Ministers to take notice of and act on them. I urge Ministers to listen to the representations being made to them by Macmillan Cancer Support and others.

The national cancer patient experience survey highlighted several important issues, and I will mention three. The first is care planning and information. The most recent cancer patient experience survey reveals that before starting treatment, 45% of patients were not fully informed about the side effects that could affect them in future, that 78% were not offered a written assessment and care plan, and that 41% were not given enough support from health and social services after leaving hospital. As a result, not all patients felt that their families were given all the information needed to help care for them at home. That is clearly an area where there is room for improvement.

[David Simpson (Upper Bann) (DUP)]

I congratulate the hon. Gentleman on obtaining this important debate. He mentioned Macmillan, which says in the research paper on the survey:

“The lack of basic care, dignity and respect experienced by cancer patients in hospital is shocking.”

It also says that 15% of patients experienced humiliation. That should not happen to someone suffering from cancer.

[Mr Clappison]

The hon. Gentleman makes an excellent point, and some of the matters I will turn to in due course underline its strength. May I apologise to hon. Members? I mentioned NHS England, because that is what the survey covers, but I will turn to the situation in Northern Ireland, Wales and Scotland in due course. I am delighted that so many Members from Northern Ireland are here this morning.

The next issue is financial support. Cancer patients and their families obviously need financial support, just as everybody else does. Although significant progress has been made since the first cancer patient survey in 2010, almost half of patients who would have liked information about how to get financial help or benefits still do not receive it.

[Mr Robin Walker (Worcester) (Con)]

I congratulate my hon. Friend on securing this hugely important debate. He mentioned the importance of financial advice and support, but does he agree that service design is also important? I came across a case of one constituent, David Wilson, who, while undergoing chemotherapy, received 270 different pieces of paper from our city council in just one month—August this year. It is vital that we design services so that Her Majesty’s Revenue and Customs, local councils and the Department for Work and Pensions work together to make life for patients easier and simpler and to ensure that they understand the financial entitlements.

[Mr Clappison]

My hon. Friend makes an excellent point that I am sure the Minister will want to address. The last thing that somebody coping with the treatments and everything else wants is to be bombarded with different pieces of information and requests from central or local government bodies, which could do something much more coherent and easy to understand if they streamlined their services.

I would like to address relational care, which the hon. Member for Upper Bann (David Simpson) raised in his intervention. It covers matters such as communication, trust in nurses and being treated with respect, all of which are important for cancer patients. There is still room for improvement, according to the findings of the most recent survey. For example, 42% of respondents said that not all doctors and nurses asked what name patients preferred to be called by, which can be important to older people. It is a question of finding the right amount of kindness. Our clinicians—nurses and doctors—are marvellous, but that did emerge from the patient survey. Kindness can make a great difference to people in that situation.

Macmillan Cancer Support’s report showed that patient experience across the NHS is still not regarded as having equal importance as clinical effectiveness and patient safety. The Government’s decision to make patient experience one of the five domains against which the health service will be held to account should be warmly welcomed. It is clear, however, that a lot of effort needs to be put into the institutional framework to reinforce that priority.

The NHS mandate and outcomes framework needs a stronger focus on improving relational care. Hospital boards need to take a lead on prioritising patient care; a recent survey showed that its importance to different hospital boards varies considerably, which is clearly wrong, because all hospital boards should take it seriously. Commissioners of cancer services have a vital role to play, as does the chief inspector of hospitals. All such bodies need to reinforce the need for relational care and kindness in dealing with cancer patients.

[Nic Dakin (Scunthorpe) (Lab)]

I congratulate the hon. Gentleman on securing the debate, and I apologise for having to leave before the end. Does he think that it is also important that priority be given to communication skills between medical staff and patients? That is the core of what he has outlined.

[Mr Clappison]

I am grateful to the hon. Gentleman for that intervention. I agree that communication skills are important; the important factor is that kindness should be received by the patient.

I put a point to the Minister on behalf of Macmillan Cancer Support: I hope that the Government will deal with the matters we have discussed and put patient experience at the heart of the inspection process being put in place for our health service. One way of doing that is to use the results of the cancer patient experience survey to inform ratings at a cancer team and service level and to monitor and assess providers of care—for example, as part of the foundation trust assessment process.

In the light of all that, I have four specific questions for the Minister, on behalf of Macmillan Cancer Support and other charities. First, will the Government consider making relational care a priority area in the refreshed 2014-15 mandate to NHS England? Secondly, will the Government support the use of cancer patient experience data in the inspection regime of the Care Quality Commission, which is led by the chief inspector of hospitals?

Thirdly, will the Government work with commissioners and providers to ensure that the results of the national cancer experience survey continue to drive improvements in cancer care? Fourthly, and specifically on breast cancer, can the national cancer patient experience survey include a question asking whether the respondent has secondary breast cancer? The Breast Cancer Campaign specifically asks to have that included.

More generally, I welcome the Government’s ambitious plans to improve cancer care in the United Kingdom, including those they set out in January 2011 in “Improving Outcomes: A Strategy for Cancer”, which promised action on a number of important fronts, such as diagnosing symptomatic cancer earlier; helping people live healthier lives to reduce the incidence of preventable cancers; screening more people; introducing new screening programmes, as recommended by the National Screening Committee; and ensuring that all patients have access to the best possible treatment, care and support.

Those measures should save at least an additional 50,000 lives every year by 2014-15. Many of us will be aware of the efforts being put into those different fields, to encourage people to come forward for screening, to make screening available, to make members of the public more aware of symptoms and to encourage people to lead healthier lives. That has been much more evident than it had been hitherto. In the light of all that, it would be good to hear from the Minister what progress has been made on the ambitions that the Government set out in January 2011.

Furthermore, what progress has been made in tackling inappropriate regional variations in cancer outcomes? Many advances have been made in cancer treatment in the UK, of course, but historically there has been a disparity on cancer survival rates between the UK and other comparable western nations. That has been the case for many years, under Governments of all parties, but it was underlined most recently by a 2009 Eurocare study, which revealed a disparity between UK cancer survival rates and those achieved in countries with the best outcomes.

England rated 16th in the survey for both men and women. Wales was ranked just in front, and Scotland and Northern Ireland were just behind. Apart from Ireland, every other major western European nation performed better than the UK, and some of them much better. Sweden was the best performing country.

The 2009 analysis was a little old, because it was based on patients diagnosed between 1995 and 1999, although that had to be the case to detect survival rates. More recent surveys have also seen the same pattern, such as one comparing the USA with the United Kingdom. With older patients, there is an even more marked gap between the UK and other comparable nations and economies. I have seen figures from the British Journal of Cancer that show that for women over 70 with breast cancer, the three-year survival rate in the UK is 79%, but in Sweden, it is 91%.

[Mr John Baron (Basildon and Billericay) (Con)]

I congratulate my hon. Friend on securing the debate. Although comparisons are always dangerous, a further acknowledgement of how far we remain behind our European partners is that even if we met the Government’s laudable target of saving an extra 5,000 cancer lives over the next couple of years, that would still only bring us up to the European average on survival rates.

[Mr Clappison]

My hon. Friend makes an excellent point. I am sure he would agree that there is a lot of ground to make up. The important point is that we should not only take encouragement from the improvement of survival rates as a result of advances in medical science; we should judge ourselves by how well we use those advances compared with other countries. We should set ourselves the more ambitious target of not just improving survival rates, but improving them so much that we close the gap on other countries.

Members of the British public who fall ill with cancer and their families expect cancer treatment to be on a level with that of comparable countries, our neighbours and other western developed economies. Sadly, it is not at that level, although I hope the Minister will tell us that we have made some progress.

Yesterday, some encouraging statistics were released that showed a trend of increasing survival for patients diagnosed between 2007 and 2011. The Minister will agree that that is good news, but I look forward to hearing from her that the Government’s ambition is to close the performance gap between ourselves and other countries and that the gap is being closed.

In closing, I should like to pay the utmost respect to doctors, nurses and all clinicians working in the field. We owe them a great debt of gratitude and my comments are no reflection on them. We are all hugely indebted to their work and I am sure that many of our constituents would echo that sentiment. I am just drawing attention to how the system has operated in this country over a number of years, and the experience of the patients within it. I hope that the Minister can tell me that the Government have ambitious plans for improving the cancer patient experience and that there is evidence that those plans are on the road to fulfilment.

--- Later in debate ---

[The Parliamentary Under-Secretary of State for Health (Jane Ellison)]

Thank you, Mr Owen. It is a pleasure to serve under your chairmanship.

I congratulate my hon. Friend the Member for Hertsmere (Mr Clappison) on securing this debate. I am conscious that I am still relatively new to my post—I am in my fourth week—so if I am unable to respond in total detail to some of the points raised, I will undertake to get back to the relevant hon. Members.

This has been a very good debate. Many extremely constructive points have been made, and there have been some thoughtful contributions. Members, some of whom have not been able to stay for the end, have brought great insight and experience to the topic.

Cancer patient experience is close to our hearts, and I echo the tributes paid to NHS staff and, particularly, to the charities that campaign in this area. We have all taken part in moonwalks and Macmillan Cancer Support fundraisers or gone round at the back of the race for life year after year talking to cancer survivors and people running or walking with the names of loved ones on their chests, and we know what amazing work those charities do, particularly on highlighting patient experience.

In England, each year more than 250,000 people receive a cancer diagnosis. As we have heard this morning, being diagnosed with cancer can be a traumatic experience. Like the shadow Minister, a dear friend of mine has just had that experience, so I am going on that journey with my friend to understand how she will be cared for and treated as she goes through what I hope will be a full recovery.

We know that receiving personal care that is responsive to people’s needs is vital. The Government have committed to making England a global leader in producing great cancer outcomes. We are making strides, but we know there is further to go. We are improving access to treatments, including investing £750 million during this Parliament, and we are strongly committed to saving an additional 5,000 lives by 2015.

The cancer outcomes strategy remains at the core of what we are doing and what we hold the NHS to account for in terms of delivering. However, if the NHS is to deliver high-quality care, patients’ voices and experiences are vital, and I could not agree more with what everyone has said about the end-to-end experience of care being important and a big part of recovery.

My hon. Friend rightly asked that the NHS give parity of esteem to the patient experience, alongside patient safety and clinical effectiveness. I agree, and through the mandate we have asked NHS England to deliver continued improvement in patients’ experience of care. Domain 4, which is one of the key areas of the NHS outcomes framework, is

“Ensuring that people have a positive experience of care”.

I reassure my hon. Friend that that is of equal importance to the other key areas.

[Mr Clappison]

I was remiss in not welcoming the Minister to her post. I welcome her most warmly, and I am sure she will do an excellent job. Will she take on board the fundamental plea made by Macmillan Cancer Support and echoed in the debate that the patient experience be put at the heart of the inspection process and of the assessment of different NHS organisations? Will she ensure that that is made a real priority?

[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.