Breast Cancer

Annette Brooke Excerpts

Tuesday 25th November 2014 Commons Chamber

[Annette Brooke (Mid Dorset and North Poole) (LD)]

I am very pleased to have secured this debate, as it permits further discussion on some of the work that my hon. Friend the Member for Winchester (Steve Brine), the hon. Member for Washington and Sunderland West (Mrs Hodgson) and I, as co-chairs of the all-party parliamentary group on breast cancer, have been engaged in over the past four years. We work with all the major breast cancer charities, including Breakthrough Breast Cancer, which provides the secretariat for our group, Breast Cancer Campaign, which is merging with Breakthrough next year, and Breast Cancer Care. We thank them all for their work and support.

Breast cancer is a disease that many of us will know about and have experience of. With nearly 55,000 people diagnosed with the disease in the United Kingdom every year, everyone will know of somebody—a loved one, a friend or even themselves—who has experienced this disease. It is still the most common cancer in the UK, and around a third of all new cancers diagnosed in women are breast cancer.

Over the past few decades, great strides have been made in treatment and care, leading to much improved outcomes. Since the 1980s, breast cancer deaths have fallen by more than a third, and today more people survive breast cancer than ever before. More than eight out of 10 people are living five years or more following their diagnosis. The all-party parliamentary group recently carried out an inquiry into breast cancer in older women. The resulting report is entitled “Age is just a Number”. We discovered that there were many improvements that could be made to ensure earlier diagnosis, better communication, and better treatment and support. We are pleased that many of our recommendations will be implemented and hence overall life chances will be improved further.

[Steve Brine (Winchester) (Con)]

I congratulate my right hon. Friend, at the end of her time in the House, on bringing the topic of breast cancer to the Floor of the House of Commons in the way that she has. She conducted the inquiry with me and, as she knows, one of the things that I was so struck by is the belief out there that the risks of contracting breast cancer go down as one gets older and passes the screening age, whereas we know and the evidence shows that, on the contrary, they go up.

[Annette Brooke]

I thank my hon. Friend for the great leadership that he gave in the inquiry. I believe we brought out a great number of myths, which will much improve the approach to primary breast cancer. However, fewer people know about secondary breast cancer.

In October 2010, the United Kingdom had its first secondary breast cancer awareness day. In secondary breast cancer, sometimes known as metastatic, advanced or stage 4 breast cancer, the breast cancer cells have spread to other parts of the body, most commonly the bones, brain, liver or lungs. Secondary breast cancer is incurable and, sadly, 11,600 people die every year as a result of secondary breast cancer—the equivalent of 32 people every day. Many people diagnosed with secondary breast cancer live with the disease for a number of years. In such cases, the care and support that they receive can make a real difference to their quality of life.

I was able to raise the issue of data collection directly with the Prime Minister during Prime Minister’s questions in 2010. At that time there was no reliable data collection on how many people were living with the disease in the UK, meaning that care and support services could not be accurately costed or developed. Subsequently the main breast cancer charities and the three co-chairs of the all-party parliamentary group met the Prime Minister to discuss what was needed. We were very pleased to welcome in 2011 the publication of the Department of Health cancer strategy, “Improving Outcomes: A Strategy for Cancer.” The strategy included the aim of beginning a full collection of statistics on secondary breast cancer from April 2012, yet there still seem to be considerable gaps, as I shall outline later in my speech.

The purpose of data collection is to make sure that the quality of services offered is improved. Although we can undoubtedly find examples of best practice, there are still many concerns about the overall level of service provision in this area.

[Steve Brine]

I am sorry to interrupt my right hon. Friend’s flow again. One of the things that came out of our time with the Prime Minister on collecting the data on secondary breast cancer was the importance of secondary breast cancer care nurses. I pay tribute to the work of Breast Cancer Care in this respect. Does my right hon. Friend agree that those nurses can make a transformative difference to women and their families who are going through secondary breast cancer, by linking them up to other services in the NHS and providing knowledgeable support to them?

[Annette Brooke]

Again, I thank my hon. Friend. Over the years we found that the provision of a specialist nurse makes a crucial difference. When someone has a symptom that they are not quite sure about and they think, “I don’t want to bother to go to my GP”, being able to pick up the phone and get expert advice deals with the problem quickly, takes away the worry, and if it is necessary to see a doctor, they can go, confident in the knowledge that they are not just imagining the symptom and that it is important for them to follow it through.

A recent survey by Breast Cancer Care, which was released to mark this year’s secondary breast cancer awareness day on 13 October, reported that 90% of people with a secondary breast cancer diagnosis have experienced pain as a result of the disease in the past month. Half of those described their pain as moderate or severe. For 78% of people, their pain meant that they were unable to undertake normal everyday activities, such as household chores, work, child care, hobbies or socialising. Pain is one of the most common symptoms of secondary breast cancer, but much of it can be controlled and managed through access to palliative care. In fact, guidelines from the National Institute for Health and Care Excellence state that referrals to palliative care should be offered soon after a secondary breast cancer diagnosis. However, the same survey by Breast Cancer Care found that only 41% had been offered a referral to a palliative care team. That means that thousands of people are experiencing pain that could be controlled and managed. I am sure that we can all agree that it is unacceptable that anyone should be expected to live with unnecessary pain.

Another indicator of where the care and treatment for secondary breast cancer is not good enough is the lack of secondary breast cancer clinical nurse specialists. The NICE quality standard for breast cancer highlights that everyone with secondary breast cancer should have access to a clinical nurse specialist. The most recent results of the national cancer patient experience survey also found that access to a named clinical nurse specialist was often associated with having a more positive experience in care. For primary breast cancer—I am pleased that progress has been made in this area—it is much more routine for patients to have a clinical nurse specialist to help to co-ordinate their care and provide the support they need.

[Mr Mark Spencer (Sherwood) (Con)]

I congratulate my right hon. Friend on not only securing the debate but the work she has done in the House on this topic together with my hon. Friend the Member for Winchester (Steve Brine). Will she recognise that as well as the physical pain, the psychological aspect of this disease is quite dramatic? One way of fighting the psychological impact is to give hope to those victims that their life can be extended for as long as possible. The data that she seeks to collate and collect can give medical advancement and hope to those victims at the same time.

[Annette Brooke]

I thank my hon. Friend, and yes, it is so important. We have the good news that life expectancy is increasing under these circumstances, but that makes it all the more important to think about the quality of those extra years.

There are far fewer clinical nurse specialists for secondary breast cancer. There is no definitive figure, but estimates from Breast Cancer Care suggest that there may be no more than 20 clinical nurse specialists who have expertise or experience of working with secondary breast cancer. This is despite there being approximately 36,000 people living with a secondary breast cancer diagnosis. Given the results of the cancer patient experience survey, and anecdotal evidence from those living with secondary breast cancer, we can assume that many secondary breast cancer patients are not having as positive an experience in their care as those with a primary diagnosis. Unfortunately, we do not know for certain as the cancer patient experience survey does not include a specific stand-alone question on secondary breast cancer. It is essential that the survey continues, so could it not include a question on secondary breast cancer?

Breast Cancer Care ran a taskforce on secondary breast cancer in 2006. Its final report, published in 2008, highlighted a number of issues, other than those already mentioned, that patients with secondary breast cancer face. Those include multi-disciplinary teams not discussing secondary breast cancer routinely, the information needs of patients not being met, and patients not being assessed for their psychological or social needs following a diagnosis—the point that my hon. Friend has just made. Unfortunately, it seems that little progress has been made in the six years since that report was released.

Underpinning the problems with care and treatment for secondary breast cancer—and key to much of this debate—is the lack of data and information about patients diagnosed and living with the disease. As I have already mentioned, we still do not have an accurate figure for the number of people who have been diagnosed with secondary breast cancer, only an estimate. We do not have enough quantitative evidence about the experiences of secondary breast cancer patients.

I had the opportunity to meet some women at a recent Breast Cancer Care event to mark secondary breast cancer awareness day last month, and they told me that the care they received was often inadequate, and certainly not at the same standard as the care that followed their primary breast cancer diagnosis. Some typical comments from patients with secondary breast cancer include:

“A diagnosis of secondary breast cancer changes your life completely—nothing is ever the same again”;

“When you’re diagnosed with secondary breast cancer you can have no idea of just how far and in how many different ways it’s going to change your life. So many people don’t understand what a secondary diagnosis means”;

“So many people tell me how great I look, or tell me that I can beat it with chemo and surgery. They don’t understand that I am in pain and I can’t be cured”;

“The pain I had, from when I was diagnosed, basically it was excruciating. But the pain had started slowly and I’d always had aching pains in my chest area. To the point that it was so bad that I couldn’t hold a glass in my hand or put a handbag on my shoulder. I couldn’t touch my head, I couldn’t dress myself. I couldn’t sleep. I couldn’t turn on my side. And also I couldn’t breathe properly”;

“One thing that does distress me is the lack of continuity in my care and I think that if I had one person who was with me through it all that would help a lot”;

and

“The strange thing about this whole disease is that they don’t really prepare you at all. It’s almost finding out as you go along”.

I think that those comments highlight how much progress we have made on primary breast cancer, with all the advice and support that is given to patients very early on. I want to use this debate to highlight not only that progress, but the need to address those issues for secondary breast cancer, some of which have been faced with primary breast cancer.

Although the comments I have just read out highlight the human story, they are not enough to help us find the solutions. Without firm data and evidence, it is impossible to understand fully the impact of secondary breast cancer. We do not really know enough about the types of treatment that patients are receiving or how the quality of a patient’s life changes over time. That lack of information makes it virtually impossible for commissioners to be able to plan and commission services properly that meet local needs. That, in turn, makes it much harder for clinical nurse specialists with the right knowledge and skills to be recruited, particularly when NHS budgets are under pressure. The result is that patients continue to miss out on the vital support and care they need.

As I mentioned earlier, the Government have committed to improving the collection of data on secondary breast cancer, making it mandatory for the NHS in England. When my colleagues and I met the Prime Minister, he agreed that adequate data collection was required. Following that meeting, in January 2011, the Department of Health published its national cancer strategy, “Improving Outcomes”, which committed to collecting data on secondary breast cancer for the first time, stating:

“During 2011/12 we will pilot the collection of data on recurrence/metastasis on patients with breast cancer with the aim of undertaking full collection from April 2012.”

[Jim Shannon (Strangford) (DUP)]

I thank the right hon. Lady for giving way and apologise for not being here for the beginning of her speech; I was at a do down below and could not get here in time. She has just outlined the importance of collecting and then using data to respond to those who have breast cancer. She will also be aware that Breast Cancer Care has campaigned strongly to ensure that data are collected in England. I understand that it hopes to have a similar initiative in Scotland, Wales and, hopefully, Northern Ireland. She refers to the NHS in England. Does she share my opinion that the data should be collected for the whole of the UK so that we can agree a strategy that all four regions of the United Kingdom of Great Britain and Northern Ireland can benefit from?

[Annette Brooke]

I thank the hon. Gentleman for his intervention. I hope that the Minister has taken that point on board, because it is really important. Although data are being collected, they are not being received by various groups, and the purpose of this debate is to address that.

The pilot was run by the National Cancer Intelligence Network in collaboration with Breast Cancer Care, and it involved 15 breast cancer units across England. The pilot report, published in March 2012, identified 598 patients with recurrent or metastatic breast cancer. Of those, only 53% were recorded as being referred to a clinical nurse specialist, palliative care nurse specialist or other key worker at the time of diagnosis. That is despite the NICE quality standards and the evidence in the cancer patient experience survey of the benefit to patients of a named nurse.

[Steve Brine]

The pathway—the person who can help to pilot the patient through services—is not only found in the public sector; there are also services in the third sector. Is my right hon. Friend aware of the amazing work of Breast Cancer Haven, which has two centres—and, I hope, a third on the way in our Wessex area next year? It provides a complementary service that helps women to feel human again after they have had surgery and a devastating secondary diagnosis. This is not just about connecting them to services in the NHS; it is also sometimes about the charitable sector.

[Annette Brooke]

I thank my hon. Friend for reminding us of those very important services. I very much hope that I can visit one of Breast Cancer Haven’s units in due course, because I have not yet done so.

The pilot recommended that all breast cancer units in England submit data on patients with recurrent and metastatic breast cancer using existing data collection mechanisms. However, since the pilot no such data have been published. Since January 2013, it has been mandatory for all new recurrent and metastatic diagnoses to be recorded in England. The third annual report on the strategy confirms that this collection is taking place, but the problem is that the data do not seem to be publicly available.

A recent parliamentary question by the hon. Member for Ealing, Southall (Mr Sharma) about diagnosis of metastatic breast cancer in his constituency was responded to by the Office of National Statistics, which said:

“Detailed information about secondary cancer diagnoses is not routinely recorded on individual cancer registrations sent to ONS for processing and publishing as National Statistics. For these reasons it is not possible to provide figures on secondary breast cancer.”

This information needs to be made publicly available to allow scrutiny of the data and to help highlight areas that require action. It would be helpful if the Minister outlined what plans are in place to start publishing these data and whether the data include routes of referral. If there are no such plans, what is the reason for not making the data publicly available?

Not only have we seen no data published on secondary breast cancer, but there is also evidence to suggest that the data collection is not happening consistently across England. Breast Cancer Care is concerned that this will impact on the quality of the data that could be made available. Whether we will have a clearer picture on the needs of secondary breast cancer patients remains to be seen. Once consistently collected, it is also imperative that data can be accessed by research organisations, including charities, to drive improvements in care. Obviously, it is crucial that there are strong safeguards on privacy, but for numerous other reasons, including uncertainty following the restructuring of the NHS, there is great concern that routinely collected pseudonymised data sets are not consistently being made available for health research.

Breast Cancer Campaign has drawn my attention to some detailed points about data collection. The first relates to the current review of the national cancer peer review programme, which routinely monitors the quality and safety of NHS cancer services. I understand that it collects data on a number of key measures related to secondary breast cancer. There are concerns that it may not continue next year in its current form, or at all. I hope the Minister will comment on that. How will patients be provided with information on the safety and quality of their local cancer services, should the national cancer peer review programme be discontinued?

Secondly, if we are to achieve the Health Secretary’s goal of being among the best in Europe for cancer survival, measures to hold clinical commissioning groups to account for the cancer services they provide are vital. What consideration has the Minister given to the inclusion of indicators on cancer patient access to a clinical nurse specialist and multidisciplinary teams in the CCG outcomes indicator set, and what steps can she take to ensure that CCGs are held to account on their performance against that set? What further discussions is the Minister actually having?

In conclusion, the Government should be congratulated on the important progress they have made on cancer over the past four years. Initiatives such as the cancer drugs fund have made a big difference to patients in improving access to clinically effective drugs and treatments. However, in order to achieve the Government’s stated ambition of being the best place in Europe to survive cancer, more needs to be done. For that to happen, evidence is needed to provide the intelligence and insight required to enable local commissioners and health care professionals to plan effectively to meet their patients’ needs. I hope the Minister will join me in agreeing that it is no longer acceptable that the collection of data on secondary breast cancer does not consistently take place.

This is an important public issue. A petition by Breast Cancer Care calling for secondary breast cancer to be a priority for this Government has to date secured almost 12,000 signatures—a fitting milestone, given that almost the same number are dying from secondary breast cancer every year. Will the Minister commit to making secondary breast cancer a priority for her Department and, once more evidence is highlighted from the data, to working with Breast Cancer Care and other charities to improve the support and care that patients receive?

Only once everyone has the opportunity to access a clinical nurse specialist to support their care, to be referred to palliative care so they are not in unnecessary pain, and to receive the best possible care and treatment to live as good a quality of life as possible with the disease can we truly consider the United Kingdom to be one of the best in Europe for cancer care.