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Secondary Breast Cancer

Volume 483: debated on Tuesday 18 November 2008

Motion made, and Question proposed, That this House do now adjourn.—[Ms Diana R. Johnson.]

I am delighted to have secured this debate on such an important subject. There are an estimated 2 million people in the UK living with or beyond cancer. An estimated 550,000 of them have had a diagnosis of breast cancer. That includes people who have completed their treatment and are cancer-free, as well as those who are living with the active disease. A sizeable proportion of those 550,000 people could be living with secondary or metastatic breast cancer, which occurs when cancer spreads from the breast—the primary tumour site—to another part of the body, such as the liver or the bones. At that point, the disease does not become, say, liver cancer. It is, in fact, still breast cancer that has spread to the liver.

Once breast cancer has spread in that way, it cannot be cured, but innovative drug treatments have been developed that allow the cancer to be controlled and improve the quality of life for patients living with it, thereby making the cancer life-limiting. Yet at present it is impossible to know exactly how large the group of people living with such secondary cancer is, as incidence data are not routinely collected or widely available.

The Under-Secretary of State for Health, my hon. Friend the Member for Brentford and Isleworth (Ann Keen), knows that Breast Cancer Care established the secondary breast cancer taskforce in 2006 to improve the treatment, support and care of people living with secondary breast cancer in the UK. The taskforce was set up when Breast Cancer Care heard that that patient group felt neglected, in terms of the care and support that it received. Since then, there have been some steps in the right direction, and both Breast Cancer Care and I offer our congratulations on that. However, there are four key issues that the organisation has focused on to ensure that those living with secondary breast cancer are given the same high standard of care and support that they received when diagnosed the first time around.

The first of those issues is the collection of data. We do not know how many people are living with secondary breast cancer in the UK, as those data are not routinely collected. Without those data, it is unclear how many people diagnosed with primary breast cancer go on to develop it in a secondary form. In addition, the median survival time for metastatic breast cancer is estimated at three years, yet some patients will live substantially longer—for up to 10 or 15 years, in some cases.

I welcome the formation of the national cancer intelligence network, which is committed to building and retaining a new national repository of cancer data. It is an important step. Without knowing how many people are living with secondary breast cancer in England, it is impossible to provide adequate services for them. However, I look for reassurances today from the Minister that the Department of Health will make every effort to ensure that the data are collected, and collected in a timely manner, so that the necessary assessments of care for secondary patients can be made.

The second focus is on co-ordination of care. Better co-ordination of care remains one of the most challenging aspects to improving care for this patient group, and access to a clinical nurse specialist or a key worker who has the skills and knowledge to manage metastatic breast cancer is a top priority. Breast cancer nurses bring immense benefits for people living with that cancer. They act as a point of contact, providing and signposting individuals to sources of emotional and psychosocial support—particularly as a secondary or metastatic diagnosis is treatable but not curable, and is therefore devastating for the patient.

National guidance states that breast cancer patients should have access to a named person whom they can contact about their care at any time. Yet breast cancer patients on the taskforce have highlighted the lack of access and the fact that secondary breast cancer patients seem to fall through a gap between the breast cancer unit and the palliative care services.

What my hon. Friend says is compelling, and surely there is a role for the hospice movement, provided that access is appropriate and people know that there is a local hospice that they can go to. There is always a worry, however, because we never seem to fund the hospice movement as generously as we could. Would my hon. Friend like to comment on that?

I agree with my hon. Friend and pay tribute to hospices throughout the country. I know first hand the work that they do, and, of course, they can play a part in the care of secondary breast cancer patients.

Cancer networks, working with primary care trusts, urgently need to reconfigure their work force to ensure that they can provide this much needed and necessary service for that patient group. Therefore, I ask the Minister to restate her support for access to specialist nurses for all cancer patients, and not just for those with a primary diagnosis.

The third focus is on adequate and sufficient access to information. Information empowers the patient, enabling them to understand their diagnosis and to make the necessary decisions about their treatment and care. Existing guidance from the National Institute for Health and Clinical Excellence states that information should be given to people living with breast cancer “at every stage”, yet the secondary breast cancer taskforce has recognised that the information needs of its patients are not being met. If patients had access to a clinical nurse specialist or to a key worker, as I have already said, those carers could point patients in the right direction and ensure that they were well informed and well prepared. Will the Minister therefore please reassure me that all cancer networks will have information managers in post by February 2009 to ensure that patients have access to the necessary support and guidance?

Finally, the key focus of Breast Cancer Care is the provision of good psychosocial support for patients. A diagnosis of secondary breast cancer can be significantly more dramatic than a first diagnosis, which, in itself, is recognised as a highly distressing experience for patients. Further, recent studies have proved that such patients have poorer emotional as well as physical and functional health. Therefore, it is important that people living with secondary breast cancer are able to access all levels of psychosocial support. Breast Cancer Care very much welcomed the NICE guidance entitled “Improving Supportive and Palliative Care for Adults”, which is very relevant to the work of the taskforce.

The taskforce believes that the full implementation of that guidance would significantly improve support and care for those patients. We should be working towards full implementation of the guidance by December 2009, with partial implementation by December 2008. However, it appears doubtful that that deadline will be met. It has been heard repeatedly that secondary patients are simply not receiving the psychological support that they need and that there is an apparent lack of priority for the implementation of the guidance.

Although national guidance in this area is very welcome, there has been no assessment of how the guidance is being effectively implemented. I therefore ask that the Department strengthens measures to ensure that PCTs and cancer networks fully implement the NICE guidelines. I further stress that PCTs will gain economic benefits, such as decreased hospital admissions, by ensuring that proper support care services are in place.

Finally, there needs to be a call for action. Cancer networks and PCTs should review the availability of clinical nurse specialists in their network who have the necessary skills and knowledge to deal with breast cancer patients. Service providers should be able to demonstrate that every one of their patients has access to a clinical nurse specialist and the NHS cancer patients’ experience survey must include the views of secondary breast cancer patients.

Breast Cancer Care, other affiliated organisations that help to make the lives of those living with cancer a little better, and I, welcome the Government’s focus on living with cancer and survivorship. But now we want that to happen at a local level, so that the patients receive the best supportive care and full access to the services to which they are entitled.

I pay tribute to all the women with secondary breast cancer who have contributed to the work of the taskforce. Not all of them survived the experience, but they contributed their experiences of dealing with the reality of living with cancer and coping with the demands of treatment. We owe it to those people, and those who have survived them, to ensure that the standard of treatment, support and care for people with secondary breast cancer improves.

I congratulate my hon. Friend the Member for Halifax (Mrs. Riordan) on securing this important debate on secondary breast cancer particularly. I am the joint chair of the all-party group on breast cancer.

Earlier this year, we had a hearing attended by people with an assortment of specialties; they were mainly survivors and breast cancer nurses. The survivors told us that they had received wonderful and targeted treatment during their primary cancer; they could not speak highly enough of their treatment then. However, things went a bit pear-shaped when they went into secondary cancer, because they felt cut adrift. They no longer had the attention of a breast cancer nurse, although they felt that they should have had, as they were suffering from a different form of cancer. They felt that they did not know where to turn. They were not sure of the nature of their cancer, nor of the relationship between the primary and secondary diseases and what sort of treatments were going to take place. The treatment and support that they received changed considerably. I support what my hon. Friend has said. The Government ought to consider the issue and focus more on how a woman who has been diagnosed with secondary breast cancer can survive; it is a different ball game from the original diagnosis.

As a member of the all-party group, I was invited to speak at a wonderful occasion in the magnificent premises of one of the engineering associations on either the Mall or George street—I am not sure which. It was a multicultural event for breast cancer survivors, mainly primary survivors. The women were Chinese, Indian, West Indian, Pakistani—you name it, they were there. There were many middle-class and professional people who knew what they were talking about. In my conversations that night, I learned from many of them about their concerns for other women from their community, who, having started with primary breast cancer, did not feel confident enough, because of a degree of anxiety within their family about family shame and pride, to go to their doctor for quite a while, and when they did their English was not sufficient and so they frequently had to take a child to translate for them.

I said to those women, and they agreed, that women are actually dying of embarrassment. They are so embarrassed that they are not going to the doctor when they should, at an early stage in their cancer, and by the time they get there it is often well down the line. Many of these women survive, but many do not, entirely because they have been worried about raising the subject within their own family and with a doctor. Can the Department consider how we can press to get more information to women in these communities, where little English is spoken and where they have come in as wives, possibly from the sub-continent, or wherever? Can we encourage doctors, health visitors and district nurses to be on the look-out for such women and encourage them to go to their doctor at an early stage and get an early diagnosis?

Apparently this debate can go on until 10 o’clock, but I will not keep us here for that long. However, I should like to pick up on what my hon. Friend the Member for Stroud (Mr. Drew) said about the hospice movement. The hospice movement is wonderful, but hospices often suffer from a lack of funding because primary care trusts are not injecting enough money into them. In Keighley, there is a wonderful hospice in Oxenhope called Sue Ryder Care Manorlands. Its problems have not been with Bradford and Airedale PCT but with North Yorkshire and York PCT, which, it is fair to say, has been a bit skinny with it in not giving it appropriate amounts of money to cover the number of cancer patients with whom it is dealing. Of course, many of those patients will be breast cancer patients. I have been having a big argument with that primary care trust. I think that we are now seeing the end of that argument because many of us are pushing for Manorlands to get adequate funds to carry on with its excellent work. My hon. Friend the Member for Halifax is right to suggest that the hospice movement can often be a perfect solution, particularly for women with breast cancer, because it offers a much more homely and less clinical atmosphere.

I congratulate my hon. Friend the Member for Halifax (Mrs. Riordan) on securing this important debate.

I confirm what my hon. Friend the Member for Keighley (Mrs. Cryer) said about ethnic minorities often presenting quite late with breast cancer and other forms of cancer. That is partly to do with a diffidence about English and about interacting with authority, but it is often also to do with a sense of stigma. In many ethnic minority communities, there is still a strong sense of stigma about cancer. I remember that when my own mother was dying of stomach cancer she was most insistent that nobody knew, because she felt that there was something shameful about it. In those circumstances, members of ethnic minorities often present late. I think that the Government have done an enormous amount on breast cancer and cancer in general since 1997, but in framing a strategy we should be looking at the very specific needs and issues in ethnic minority communities.

I congratulate my hon. Friend the Member for Halifax (Mrs. Riordan) on securing the debate on the national health service for secondary breast cancer patients. I am aware of her interest in breast cancer, and I realise that today’s debate has been prompted by the recent work of Breast Cancer Care’s secondary breast cancer taskforce on metastatic—advanced—breast cancer.

I was able to attend a meeting with Breast Cancer Care in May, and, in the past couple of weeks, a meeting of the all-party group on breast cancer. We welcome the work by Breast Cancer Care and the secondary breast cancer taskforce to raise the profile of secondary breast cancer.

We are aware that patients with secondary breast cancer have different needs from those with primary breast cancer. My hon. Friend the Member for Keighley (Mrs. Cryer), who spoke in her usual positive and passionate way, made important points about cultural differences and the work that remains to be done. My hon. Friend the Member for Stroud (Mr. Drew) raised the important issue of the hospice movement, and my hon. Friend the Member for Hackney, North and Stoke Newington (Ms Abbott) mentioned a certain stigma that persists among some older women in the community. I can relate to all those points because, as a nurse for many years, I experienced them with patients and their families. Many of us now represent constituencies that include groups of people who need the confidence and reassurance that the NHS can give women.

The National Institute for Health and Clinical Excellence’s guidance, “Improving Outcomes in Breast Cancer”, recommends how breast cancer services should be organised, and covers recurrent and metastatic breast cancer. It recommends that a patient with breast cancer

“should receive information relevant to her case about the disease, diagnostic procedures, treatment options and effectiveness”.

Of course, that includes information on the probability of recurrence.

Let me explain how the information is given. NICE is currently developing clinical guidelines for the diagnosis and treatment of secondary breast cancer, which we expect to publish in February 2009. At the all-party group meeting, I heard the very different experiences of women in respect of the way in which information is presented to them, and especially the burden that giving information only to the patient, who has to go away and explain it time and again to friends and family, creates. It cannot be acceptable for that burden to fall on the patient alone, especially of an unexpected secondary diagnosis. I emphasise that NICE is currently developing clinical guidelines for the diagnosis and treatment of secondary breast cancer.

Several key priorities that the taskforce identified in its excellent work, and that my hon. Friend the Member for Halifax highlighted today, were raised by stakeholders during the development of our cancer reform strategy, which we published in December 2007. Actions to tackle those issues, which affect all cancer patients, were included in the strategy.

The first priority that the taskforce identified is the need for a key worker for all secondary breast cancer patients. I cannot stress the importance of that enough. In its November report, the taskforce further recommends,

“that within every patient’s clinical team, there is a Clinical Nurse Specialist who has the skill and knowledge to manage metastatic breast cancer. This person will act as the patient’s key worker.”

I would say, key worker, advocate, friend, counsellor and nurse.

As my hon. Friend knows, work force planning is a local matter and is the responsibility of NHS organisations, with the support of their strategic health authority.However, the debate enables me to say that a strong message is sent to strategic health authorities, local health communities and primary care trusts at every opportunity to emphasise that we recognise the importance of employing nurse specialists, with that specific skill. We acknowledge the critical role that clinical nurse specialists play in cancer care. That has been confirmed by the importance of the role as part of the multi-disciplinary team, as set out in the NICE series of “improving outcomes” guidance. During the development of the strategy, patients repeatedly told us of the important role that clinical nurse specialists can play in improving the experience of people living with and surviving cancer. At our recent party conference, I was asked to speak at a meeting entitled “Long-term conditions”, but some years ago we would not have expected that to include cancer. We are so pleased that people are living much longer lives with cancer and secondary cancer. Therefore, they deserve to have—and must have—the support that the taskforce has set out.

The strategy asked commissioners to give particular attention to that role for clinical nurse specialists. The strategy also recommends that good commissioners will use the peer review data to benchmark their local clinical nurse specialist provision against that of similar PCTs and take action where the clinical nurse specialist work force are found to be insufficient. There will therefore be much more transparency and other PCTs will be able to see how best practice is being portrayed.

As part of the implementation of the strategy, a small working group has been set up by the national cancer action team to look into the role and contribution of nurses across cancer services. The group will look at the outcomes required across tumour type pathways and the competences required to deliver them. The national cancer action team is now funding a survey of clinical nurse specialists.

My hon. Friend the Member for Halifax rightly raised the issue of collecting data. Collecting data on the number of those diagnosed and living with secondary breast cancer is the second priority. The national cancer intelligence network, which was launched in June, will build, maintain and quality-assure a new repository of national cancer data. That will help patients to make choices about their treatment, enable hospital teams to identify areas of weakness and encourage commissioners to seek improvements in quality where necessary. We are working hard to help the NCIN collect those data in a timely manner, and its first annual report is scheduled for publication in 2009.

The need for high quality patient information is another priority. Ensuring that all patients have access to high quality information and support is a key part of the pledge that we made to cancer patients in the strategy. The strategy sets out a number of initiatives to improve patient support services for those living with and, of course, beyond cancer. Those initiatives include: ensuring that patients receive high quality personalised information throughout their—as it is described in the strategy—cancer journey on issues such as cancer treatment, local and national support services, and, importantly, financial benefits; working with cancer professionals in the NHS to improve their communication skills when dealing with patients; the establishment of a new national cancer survivorship initiative; and monitoring progress on improving patient experience through annual surveys, which will include the views of secondary breast cancer patients.

I have listened to many of the women involved and, along with my hon. Friend, pay tribute to their courage and commitment. Even when they have not felt well enough to attend, they have bravely done so. We have made good progress on the national initiatives to improve information delivery and communication skills training since the publication of the strategy. That is so important. We all think that we are getting it right, but then we listen to the patient experience and discover that some things are still lacking. Therefore, the commitment to professional development and training is of the utmost importance.

The national cancer action team is working closely with cancer networks and charities to roll out national information pathways, and this is being linked to pilot work on information prescriptions. I take note of what my hon. Friends have said this evening—particularly about the culture and how the older woman is affected—and can now see that it is fed into the information pathway. National patient information pathways for bowel, lung, prostate and breast cancers were launched in July. They are nationally agreed sources of information that will be available for clinicians and clinical nurse specialists to give to patients at each stage of their cancer journey, including information for women with secondary breast cancer.

Improved access to psychological services for all secondary breast cancer patients and their families is the fourth priority. Once again, we recognise that that can be as important as any other aspect of treatment, and we have stated that commissioners will need to ensure that adequate provision is available so that all patients, and their families, friends and carers, can access the appropriate psychological support that they need. When a person is informed of a second diagnosis, they require different support. All the clinical people involved in the care of patients with a secondary diagnosis are aware that, sometimes, that support is not adequate. Everyone is trying to ensure that the psychological support is available, not only for the patient, but for family members.

Improved management of secondary breast cancer patient care is the fifth priority. I can confirm that the management of active cancer has been identified as a workstream to be taken forward as part of the new national cancer survivor initiative.

Cancer services remain a high priority for this Government, and my hon. Friends have praised the work that our clinicians and NHS staff have done. We have seen changes and significant improvements in cancer services in the past 10 years, especially since the publication of the NHS cancer plan in 2000. Our achievements include: extending breast screening to women aged up to 70; the roll-out of the bowel cancer screening programme; a reduction in waiting times for patients with suspected cancer; more cancer specialists—that is absolutely critical to the strategy, and there are more than 1,655 extra consultants in this area since 1997; and cancer mortality in under-75s fell by more than 18 per cent. between 1996 and 2006. We are on course to meet our target of a reduction of at least 20 per cent. in cancer deaths in under-75s by 2010. The public health and awareness agenda that all of us must take account of will make a significant difference to that figure.

That does not mean that we are complacent. We face significant challenges when dealing with cancer services for people with secondary cancer. We have opportunities to deliver further improvements through the strategy, which was developed with the help of more than 1,000 groups and individuals. It is very much an inclusive and involved strategy, which I believe was welcomed by all the cancer charities and patients who are not associated with them. We value the work of Breast Cancer Care and all other cancer charities, and look forward to continuing to work with them through the various strategy initiatives to improve the experience of all cancer patients, including, of course, those with secondary breast cancer. We owe that to those women and their families, and the NHS wants to deliver it.

Question put and agreed to.

Adjourned accordingly at two minutes to Nine o’clock.