Breast Cancer

Jim Shannon Excerpts

Tuesday 25th November 2014 Commons Chamber

[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.

--- Later in debate ---

[Jane Ellison]

I certainly pay tribute to all those who are trying to drive awareness of this issue. There are a number of very important campaigns. Prevention is so important; for example, it was good that it was right at the heart of the recent NHS “Five Year Forward View”. There is a lot more to do, and I have recently had discussions with some of the breast cancer charities about how we use their reach and undoubted public credibility, which is enormous, to raise awareness more about some of the things that people can do on the prevention front, as well as about their important work on care and drugs. I join my hon. Friend in paying tribute to those campaigners.

The NHS is treating more people with cancer than ever, as I have said. Survival rates for breast cancer are improving, with more than 85% of women with breast cancer in England and Wales now living for more than five years. The work that all the charities have done in that regard is really important. They have all made significant contributions, but we know that more needs to be done, and that is the focus of this debate. We need to catch breast cancers earlier, and to avoid the risk of secondary breast cancers. We also need to improve the detection and treatment of secondary breast cancer, as my right hon. Friend has highlighted.

My right hon. Friend spoke very movingly about pain and its management. I am sure that we all agree that our NHS doctors and nurses do everything that they can to alleviate pain. In fact, it was good to see from the 2014 cancer patient experience survey that only 1% of patients reported that they did not think that hospital staff did everything they could to control their pain. Indeed, 86% of patients—the highest level in the four surveys so far—reported that staff did everything they could to control their pain. She is right to say that referral to specialist palliative care services can provide more by way of effective pain relief. The NHS must do what it can to ensure that women with secondary breast cancer have access to the right services. She is also right to highlight the room for improvement on that.

On the patient experience for women with secondary breast cancer, the results of the 2014 cancer patient experience survey show improvements in many areas, with 89% of all patients reporting that their care was either excellent or very good. As my right hon. Friend said, there are two specific references to secondary breast cancer in the NICE quality standard. The first states that people who develop it should

“have their treatment and care discussed by the multidisciplinary team”,

and the second states that people with recurrent or advanced breast cancer

“have access to a ‘key worker’, who is a clinical nurse specialist whose role is to provide continuity of care and support”—

she mentioned that—

“offer referral to psychological services if required and liaise with other healthcare professionals, including the GP and specialist palliative care services.”

NICE clinical guidelines represent best practice, and we expect commissioners and clinicians to take them into account when making decisions, including on the provision of cancer nurse specialists. On the whole, breast cancer patients reported a more positive experience than many other cancer patients, and 93% were given the name of a clinical nurse specialist. My right hon. Friend is right to highlight the fact that we are not doing as well for patients with secondary cancer or a recurrence of cancer—those patients reported a worse experience and were less likely to have a clinical nurse specialist. NHS England is working with NHS Improving Quality, Macmillan Cancer Support and strategic clinical networks to improve the cancer patient experience and spread good practice across hospitals providing cancer care. That includes support from a clinical nurse specialist for those with secondary breast cancer.

[Jim Shannon]

The Minister is good in debates such as this and we always appreciate her response. One thing that is not always mentioned is the work done by pharmaceutical companies and their investigations to find and perfect new drugs to combat cancer. Current TV programmes often show people saying, “We’re almost there” when speaking about a cure for cancer—well, we are halfway there anyway. Together with pharmaceutical companies, universities such as Queen’s university in Belfast do fantastic work to find new drugs to address cancer and many other things. Sometimes that point is missed in debates such as this, so perhaps this is an occasion to get that on the record.

[Jane Ellison]

I pay tribute to the hon. Gentleman who is always present in health debates and makes an important contribution. If he were to secure a debate on research and clinical trials, I would be delighted to respond. He is right to say that that topic is sometimes a bit unsung, and it is enormously hope-giving for people to hear what is in the pipeline. He is right to highlight that issue, and perhaps we could explore it in a bit more detail on another occasion.

I alluded earlier to work that is taking place to bring everybody up to the best standard. That includes pairing highly rated cancer trusts with those that have potential to improve, regional events for commissioners to consider how patient experience survey results inform commissioning decisions, and the publication of guidance on using survey data to drive improvement. The survey is used in very hands-on ways, and in previous debates I have been impressed at the extent to which data are used right at the front line to say, “This is what really good looks like”, or to highlight where services can be improved by reference to those who are doing things well.

The need to improve is recognised by the NHS. In his forward to the 2014 survey report, Sean Duffy, NHS England’s national clinical director for cancer, recognised the importance of clinical nurse specialists and the need to be particularly sensitive to the needs of patients with a recurrence of cancer. We all recognise the picture that my right hon. Friend painted of people telling others of their diagnosis and what they say and the enormity of the news they are trying to convey not really being understood. Sean Duffy also highlighted the need for sensitivity when the cancer has not responded to treatment as had been hoped.

I understand that NHS England has no plans to discontinue the cancer patient experience survey. I have drawn on it a number of times when responding to debates, and it has been extremely valuable to front-line clinicians for understanding where excellence is being practised. I am keen and have stressed to NHS England on a number of occasions how much Members of the House appreciate the survey and feel that it informs our debates and the knowledge of our constituents.

The survey is overseen by the cancer patient experience advisory group, chaired by Neil Churchill, NHS England’s director of patient experience. Suggestions for amendments or additions to the survey can be addressed to that group. I will obviously draw this debate to the attention of NHS England, and the all-party group on breast cancer will continue to engage with it on ways that the survey could be improved or amended.



My right hon. Friend mentioned the need to improve detection and treatment of people with secondary breast cancer. We need to have good data about those affected. As she said, in the 2011 cancer outcomes strategy we committed to pilot the collection of data about metastatic disease, which had previously not been recorded. In March 2012, a report on the pilot data collection project was published. The pilot programme included data from 15 units and enabled the National Cancer Intelligence Network to identify deficits in the information recorded for those patients. Lessons learned from the pilot have now been applied to a country-wide programme. Since April 2012, all breast units have been required to submit information on all patients diagnosed with a new recurrence or with metastatic disease through the cancer waiting times process.

Analysis of the cancer waiting times data, based on referrals to hospital between 1 April 2012 and March 2013, shows that 7,176 patients were diagnosed or treated for recurrent breast cancer in England. However, we know we need to improve the quality of the data to ensure that we are getting the full picture. There are significant discrepancies between trusts and the analysis will need to be updated with more recent cancer waiting times data to ensure that the figures are robust. The NCIN, Macmillan and the Public Health England knowledge and intelligence teams are working collaboratively on a system to detect patients with recurrent breast cancer by looking at treatment patterns. Results from that collaborative work should be available in 2015. I know it is a source of frustration that they have not been available to date, but that work is at least ongoing. I will pursue that point further with Public Health England after the debate. We have regular meetings. I will of course raise the issue and ensure we keep the House up to date.

On the national peer review programme, I would like to assure my right hon. Friend that NHS England is currently reviewing the national cancer peer review programme with a view to considering how its success might be extended into other new areas of specialised commissioning. Regardless of the outcome of the review, cancer peer review will continue to play a critical part in any broader peer review programme the NHS might introduce. Further details will be published shortly as part of the wider review into specialist commissioning.

The clinical commissioning group outcomes indicator set is not designed for use as an accountability tool. For that, NHS England uses the CCG assurance delivery dashboard—I apologise for the jargon, which, unfortunately, is a feature of these debates—to hold CCGs to account. “Everyone Counts: Planning for Patients 2014/15-2018/19” was used by NHS England to identify the relevant indicators for reporting in the CCG dashboard. In addition, as new data have come on line throughout 2013-14, as well as feedback received on the indicators that are currently being used, NHS England has reviewed whether there is potential to make improvements in 2014-15. The cancer indicators used in the CCG assurance dashboard are based on cancer waiting times. NHS England is continually looking to improve the delivery dashboard. I know the all-party group will continue to engage with that process, as will the charity that supports it and the other charities.

As well as improving patient experience, we want to ensure that women are informed about the risks of metastatic disease so it can be diagnosed early. NHS England breast cancer clinical reference group is determined to ensure that everything possible is done to reduce the risk of secondary breast cancer. It is preparing a service specification for the provision of breast cancer services in England. NHS England knows that the information currently given to patients on the risk of secondary breast cancer is variable and frequently inadequate. That was brought to life for all of us in the Chamber by the deeply moving extracts from the comments of sufferers that were read out by my right hon. Friend. I do not think that any of us could have been unaffected by them. The clinical reference group’s service specification will require that all patients should have an end of primary treatment consultation, which will include advice on signs and symptoms that might indicate secondary breast cancer. That information needs to be delivered together with an holistic needs assessment as part of a recovery package. The evidence that this has been done will have to be recorded in the records of every breast cancer patient.

Touching briefly on research, the National Institute for Health Research is enabling patients to take part in trials of new treatments for metastatic breast cancer through its clinical research network.

As we all know, early diagnosis is key. Alongside the work to increase awareness, the Government have committed £450 million to achieve earlier diagnosis and the associated improved cancer survival rates. On breast cancer specifically, in February and March, we ran a Be Clear on Cancer campaign to increase awareness of breast cancer in women over 70. The proportion of women spontaneously mentioning breast cancer rose significantly, as did confidence in people’s knowledge of signs and symptoms of breast cancer. The campaign was well recognised, with many agreeing that the advertising would prompt them to talk to somebody close to them about the symptoms to watch out for. As well as increasing awareness, the campaign appears to have resulted in a large increase in referrals to secondary care in the target age group. The analysis, although only interim, suggests a significant increase in the number of women over 70 self-referring for breast screening. We are encouraged by that.

In addition, Public Health England is funding the biggest randomised control trial in the world and extending the NHS breast screening programme to women in the 47 to 49 age group and the 71 to 73 age group. As the trial is studying the effects of screening on breast cancer mortality rates over time, the results will not be known until the early 2020s, but it is an important and extensive study.

To conclude, I thank my right hon. Friend once again for bringing this debate to the House, the manner in which she introduced it and her important work on this subject throughout her parliamentary career, and I thank my other hon. Friends who have supported her and who also take a great interest in this subject. She is right to point out that fundamentally there is a message hope: so great is our progress that we can now compare of where we want to be with secondary breast cancer with where we increasingly are with breast cancer. However, she also rightly reminds us that more progress needs to be made.

I shall draw this debate to the attention of the national clinical director, Sean Duffy, and make him aware of the concern expressed in the House on this subject. I reassure my right hon. Friend of the Government’s commitment to reducing the incidence of secondary breast cancer and to improving outcomes for everyone diagnosed with this terrible disease. I offer a message of hope and improvement to all of them.

Question put and agreed to.