Breast Cancer

Debate between Annette Brooke and Mark Spencer

Tuesday 25th November 2014 Commons Chamber

[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.”