Secondary Breast Cancer
(9 years, 2 months ago)
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Craig Tracey (North Warwickshire) (Con)
I beg to move,
That this House has considered secondary breast cancer.
It is a pleasure to serve under your chairmanship, Ms Dorries, in the first Westminster Hall debate that I have secured. As a co-chair of the all-party group on breast cancer, I am delighted to be able to raise the extremely important issue of secondary breast cancer. I thank all the people and organisations that have provided me with valuable information for today’s debate, not least Breast Cancer Care and Breast Cancer Now, both of which provide vital support to the all-party group. I particularly welcome the volunteers from those charities who are in the Public Gallery, representing the approximately 36,000 people living with secondary breast cancer in the UK today.
Last Tuesday was Secondary Breast Cancer Awareness Day. It underlines the importance of the issue that, at an event held in Parliament, nearly 90 MPs from both sides of the House turned up to support. Cancer is a disease that will sadly affect us all in one way or another during our lifetime, but the subject of today’s debate, secondary breast cancer, is often overlooked. Before making progress, I apologise to everyone for the number of acronyms that I will use, but given the number of hon. Members who want to speak, if I used the full names each time, we would never get through everyone.
Secondary breast cancer, also known as metastatic, advanced or stage 4 breast cancer, is where breast cancer cells have spread from the breast to other parts of the body—most commonly to the bones, lungs, liver and brain. It is incurable, but treatable. On average, people live with the disease for two or three years after diagnosis. However, that can vary considerably from person to person, with some living only months after diagnosis and others living many years longer. Unfortunately, research has shown that many secondary breast cancer patients receive inadequate care. All too often, it is much poorer than that which they received following their primary diagnosis. They do not always have access to palliative care, specialist nursing or the treatments that could extend their lives. Much of the current discussion and debate on cancer focuses on promoting early diagnosis and improving survival outcomes. That is extremely important and should be at the forefront of any cancer strategy. However, it is vital that it does not mean that people living with incurable secondary breast cancer are forgotten about. For them, efforts to improve early diagnosis rates will have no effect.
However, there are many things we can do, and for the purposes of today, I would like to focus on five key areas. First, one of the key issues underpinning many of the problems in care is the lack of data about the disease. At present, we have no idea how many people are being diagnosed with secondary breast cancer or how the disease progressively affects life over time. It is surprising that we still do not have an accurate figure for the number of people living with secondary breast cancer. Without that number, it is extremely difficult for the NHS to plan and commission services effectively to meet the needs of patients.
Andrew Stephenson (Pendle) (Con)
I congratulate my hon. Friend on securing this important debate. He is making a powerful case—a case that has also been made to me by my constituent Jade Braithwaite from Colne, whose mother sadly lost her life to secondary breast cancer. Given that it is already mandatory for hospitals to collect the data on secondary breast cancer, does he agree that it is absolutely shocking how few data we currently have?
Craig Tracey
I thank my hon. Friend for that intervention. I am coming on to that point now—well anticipated! As I said, it is surprising that we do not have accurate figures and it is therefore difficult to plan and commission effectively. That is acutely demonstrated in the lack of specialist nurses and poor access to palliative care, which both Breast Cancer Care and the secondary breast cancer taskforce first raised in 2008.
In 2010, Breast Cancer Care, along with other breast cancer charities and the APPG, met the Prime Minister to discuss the issue. He agreed that data collection was necessary and committed to achieving that. As a result, in the 2011 cancer strategy, “Improving Outcomes”, there was a commitment to collecting data for the first time. It stated:
“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.”
The pilot was run by the National Cancer Intelligence Network, the NCIN, 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 having been referred to a clinical nurse specialist, palliative care nurse or specialist keyworker at the time of diagnosis. The pilot recommended that all breast cancer units in England submit data on patients with recurrent and metastatic breast cancer using the existing data collection mechanisms, and in January 2013 that was made mandatory in all new diagnoses recorded in England. Unfortunately, the data have yet to be published, and I understand that hospitals are not collecting them consistently. Indeed, a report was due to be published by the NCIN on the topic earlier this year but, disappointingly, it has been repeatedly delayed.
An investigation with health professionals by Breast Cancer Care into why data are not being collected consistently revealed that many of the barriers lie in the practicalities. Time constraints mean that there is often not enough time to input data manually, because patients’ needs, rightly, come first. Structural constraints were cited. Many of the data are expected to be collected through discussion at the multidisciplinary team meeting, but healthcare professionals tell us that most secondary patients are not discussed at MDT level. I welcome the recommendation in the new cancer strategy to review the role and function of the MDT in relation to secondary cancers. IT constraints cause further problems, because online record forms are not set up to collect the data in the cancer outcomes and services dataset, and there is a lack of access to online systems in some hospitals, especially in tertiary centres outside main hospital sites. Finally, there is a lack of awareness about what data are required and confusion about who is responsible for inputting various data items.
Leadership is required to help to drive robust data collection in all hospitals, and we want the Minister, who has responsibility for public health, to make that a priority and lead the way in ensuring that data are collected in every hospital. The new cancer strategy, “Achieving world-class cancer outcomes”, which was published earlier this year, includes a recommendation that data should be collected on all secondary cancer patients. We urgently need the implementation of the plan for how that will happen. In theory, as I have said, breast cancer data should be submitted through the COSD, which replaced the previous national cancer dataset in January 2013 as the new national standard for reporting cancer data in the NHS in England. It has the potential to provide a much broader overview of the treatment, care and outcomes of secondary breast cancer patients. Unless that happens consistently across England, however, we will not see the data that we need to improve care.
Julian Knight (Solihull) (Con)
I congratulate my hon. Friend on securing the debate and on the powerful case that he is forensically making. He knows as well as I do that, in our area of the west midlands, we were hit by the Ian Paterson scandal at Spire Parkway hospital. Does he believe that a greater ability to collect and collate statistics would have gone some way to alleviating that problem, because it could have been spotted earlier?
Craig Tracey
I agree completely. The lack of data is astounding, and they would help in so many different areas of treatment.
My second objective is access to specialist palliative care. For those living with a diagnosis of secondary breast cancer, such care can make all the difference in enhancing their quality of life, but for too many, support is not available. In many cases when support becomes available, it is too little, too late. Research for Secondary Breast Cancer Awareness Day in 2014 showed that 90% of people living with secondary breast cancer experience regular pain, and 78% find that it affects their ability to undertake everyday activities. For those reasons, palliative care is an absolute essential for secondary breast cancer. Hospices and community-based services can provide symptom management and pain control so that no one has to live with secondary pain. Furthermore, emotional support for both patient and family can help people come to terms with having an incurable disease, as well as ensuring that decisions are taken and adhered to about their choices at the end of life. Palliative care should come at the point of diagnosis, or at a timely point such as when a patient becomes symptomatic. It should provide both symptom control to help them live as well as they can for as long as possible, and emotional support to help them to cope with having an incurable disease and to make informed choices about the end of life.
The third area that I would like to mention is specialist nursing care. We know from the cancer patient experience survey that having a clinical nurse specialist as part of someone’s care is the biggest driver in improving patient experience. The National Institute for Health and Care Excellence quality standard states that everyone with secondary breast cancer should have access to a CNS. A CNS can help to co-ordinate care, provide emotional support and guide a patient through treatment and beyond. However, we know that it is far less common for someone with secondary breast cancer to have a CNS than for someone who has primary breast cancer, mainly because only a handful of CNSs have specific experience of and expertise in secondary breast cancer. A 2010 study found that there were only 19 dedicated secondary breast cancer nurse post-holders across the UK—the current estimate is 25—as opposed to 600 conventional breast cancer care nurse posts. That number must be increased, given that we estimate that there are 36,000 people living with secondary breast cancer—that figure is likely to grow as the population ages and treatments improve.
We need to commit to training more secondary breast cancer CNSs. Anecdotal evidence from existing nurses and from patients who receive care from a CNS suggest that that measure could save money in the long term by keeping patients out of hospital and highlighting problems before they become crises in A&E. We would also expect someone who has a CNS to be more likely than someone who does not to be referred to palliative care when they need it.
My fourth point is about access to drugs and treatments. The cancer drugs fund, which was introduced in 2011, has been an important initiative to improve access to clinically effective drugs that have been deemed by NICE not to be cost-effective enough to be provided routinely on the NHS. Government figures show that, to date, 72,000 people have received life-extending cancer drugs as a result of the CDF. However, it was recently announced that two secondary breast cancer drugs would be removed from the list with effect from November this year. Although NHS England has stressed that any patient who is on a drug when it is de-listed will continue to receive it until it is no longer clinically effective, the change creates anxiety for people living with secondary breast cancer. Cancer charities hear from a lot of people who are concerned that their options for treatment in the future, when their current treatment is no longer effective, are being reduced.
I understand that new cancer drugs can be extremely expensive and it is important to remember that the NHS has finite resources, but there is a clear opportunity to reform the drug appraisal system and bring together pharmaceutical companies with healthcare professionals to ensure that secondary breast cancer patients can access new drugs at a price that is affordable to the NHS. The CDF was only ever meant to be a short-term solution to the problem, and it is vital that we find a long-term solution.
The final key area that I want to see addressed is co-ordinated and joined-up care. The role of a multi-disciplinary team is to bring together all the healthcare professionals involved in a patient’s care to help to co-ordinate the support that that patient receives. For many primary breast cancer patients, it works very well, bringing together oncologists, nurses, radiotherapists and other professionals to ensure that the patient’s care is joined up and integrated. However, the secondary breast cancer taskforce found that that was simply not the case for secondary breast cancer patients, largely because people living with the disease are under the care of only an oncologist rather than a team of professionals. Because of that gap, opportunities—for example, the opportunity to identify when palliative care would be most beneficial—are being missed. The cancer strategy includes a recommendation that MDTs consider new pathways for secondary patients. The implementation of that recommendation would go a long way towards joining up care more consistently and ensuring that patients’ holistic needs are more likely to be met.
To conclude, I ask the Minister to consider five clear steps: better data collection; greater access to palliative care; more specialist nurses; access to better drugs and treatment; and co-ordinated and joined-up care. To achieve the Government’s aim of being the best in Europe for cancer care, we need to ensure that people survive cancer and that those who are living with incurable cancers like Sue, who I met at the event last week, and Dee, who I believe is in the Public Gallery, are getting the care and support they need to ensure that they can live as well as they can for as long as they can.
Jim Shannon (Strangford) (DUP)
Thank you for giving me the chance to speak in this debate, Ms Dorries. I congratulate the hon. Member for North Warwickshire (Craig Tracey) on bringing this matter to the House for consideration. This is an opportunity for all of us to participate and throw in our knowledge. We are all fond of the Minister and we know that her replies will be positive because of her knowledge of this subject, which we have discussed on many occasions. I look forward to her response.
This issue is of the utmost importance. I am my party’s health spokesperson at Westminster, so I am well aware of these issues back home, which come much too close to many of us and indeed our constituents.
In yesterday’s debate on the availability of cancer drugs, we discussed many issues. Today we are specifically discussing breast cancer and the hon. Member for North Warwickshire is right that we should take an interest in it. Almost 80 MPs attended the breast cancer function just over a month ago.
I would like to focus specifically on Northern Ireland. The Minister will know that health is a devolved matter, but I want to give some statistical evidence on how important it is to us in Northern Ireland and how much help we need for it in Northern Ireland and on the mainland. According to the Northern Ireland Executive, breast cancer is the most common form of cancer among Northern Irish women, excluding non-melanoma skin cancer. I am sure that Members will agree that the figures are worrying: some 1,200 women are diagnosed with breast cancer in Northern Ireland each year and one in nine is expected to develop the disease at some stage in their life.
We all know about the high-profile cases in the press every week—Angelina Jolie is one and Kylie Minogue is another. We think of them because they are household names, but, by speaking about their personal circumstances, they have raised the profile of this disease. In some cases, surgical operations have been done before the disease comes. When we hear about that sort of step, we know that we are talking about something most serious.
There have been welcome developments in breast cancer treatment and care in the Province, including free breast cancer screening for 50 to 70-year-olds every three years. That new initiative, announced by my colleague, Simon Hamilton, illustrates the need for specific action on diagnosis, and early diagnosis in particular, as the hon. Member for North Warwickshire mentioned. We need to step up to the plate and instigate action wherever we can.
Breast cancer screening is an effective way to detect cancer in its early stages. Early detection is essential to increase survival rates. Just yesterday I tabled a question, asking “what steps” the Minister’s Department
“has taken to ensure that people diagnosed with cancer are (a) diagnosed early and (b) treated immediately.”
Early diagnosis and the availability of treatment are important issues. As the hon. Member for North Warwickshire outlined in his speech, there is a period of time in between them, but we need early diagnosis and early treatment—let us have the two of them together.
Complications arise and treatment is made more difficult when the primary cancer spreads to another part of the body. It is the secondary cancer that we are here—
Nadine Dorries (in the Chair)
Order. More speakers have requested to speak in the debate than we realised at the beginning. Therefore, accounting for the winding-up speeches, the time available has narrowed considerably to just over five minutes each. I have to push you, Mr Shannon. Having now spoken for four and a half minutes, could you begin to wind up so that we can get everyone in? That would be fantastic. Thank you.
Jim Shannon
I appreciate that. I spoke to you earlier, Ms Dorries, and looked at the figures. I was not aware that we would be down to five minutes, so let me focus on these points.
It is estimated that over a third of those diagnosed with primary breast cancer will develop a secondary cancer within 10 years of their first diagnosis. Again, early detection is the issue. Advancing new treatments and improving those in existence is of the utmost importance, but we must also publicise and promote research and findings on what can be done to prevent both primary and secondary breast cancer and to reduce the risks of them developing.
I see that the hon. Member for Central Ayrshire (Dr Whitford) from the Scottish National party is here to make a contribution. I know of her interest in this issue from her previous job, so I look forward to hearing what she and her party have been able to do in Scotland. That is important for the debate.
We should also look at partnerships between Governments, universities and the pharmaceutical companies. In the Minister’s response, will she say what steps will be taken to review the NICE criteria? It seems that some new drugs on the market that could be used to reduce deaths from breast cancer are held up by those criteria. Will she look at that?
I do not believe that we can put a price on life and, when it comes to these issues, we cannot make decisions based on anything other than genuine human compassion and empathy. I hope that the debate will raise awareness for those with breast cancer.
The Minister always responds in a positive fashion. We need to look at the availability of drugs, early diagnosis and early provision of medicine and medical help. We also need to raise this issue with the pharmaceutical companies and review the NICE regulations, because, by doing so, I think we will get more drugs available.
Michelle Donelan (Chippenham) (Con)
I pay tribute to the Members who have made contributions so far on this important subject, which affects residents in all of our constituencies. Cancer is, as we all know, a harrowing illness for those who suffer from it and for their families and friends. Three million people will be living with cancer in the United Kingdom by the end of the Parliament.
Two of my close friends who helped me get into this place have fallen victim to cancer since the election. For their sake and that of the 550 people in Wiltshire under the age of 75 who die of cancer every year, cancer must remain at the top of the agenda. There must be a long-term strategy for combating this dreadful illness.
Cancer touches everyone’s lives at some point. Most people with cancer want to ensure that they have the best information as fast as possible. Many go trawling through the internet, looking at not just drugs, but other treatments that could help such as diet, exercise and complementary therapies.
Today’s cancer patients know that there are things they can do to improve their chance of survival. They want to increase their knowledge so that they can make personal, well informed decisions and create personal treatment packages around their doctors’ treatments.
No two patients wish for identical forms of care, which is why it is important that the Government have taken steps on personal support. There are now clinician nurse specialists for those with secondary breast cancer, which is a good step in the right direction.
As the Minister will know, Macmillan Cancer Support is calling on the Government to fund an independent review of choices for end-of-life care. I encourage them to look closely at what Macmillan has to say. I know that Ministers are committed to improving the detection and treatment of breast cancer, in particular to avoid the risk of secondary breast cancer developing. I am encouraged that breast cancer survival rates have increased, but there is a lot more to be done.
The only way I can foresee that we can combat secondary breast cancer is by focusing on reducing primary cancer. Survival time post-diagnosis depends on several factors, including the stages of diagnosis, the overall health of the patient and the quality of care they receive.
I have been concerned for a long time that one group of people is often overlooked: the older generation. Cancer is not part of old age, although it is seen by many to be. We need to consider how we reach our elderly through information and support, to give them the confidence to seek medical treatment. Too often, pensioners such as my grandmother are too afraid to go to the doctor because they fear they will end up going into hospital and never coming back, so they leave it until it is simply too late. It does not have to be that way.
One solution to combat that is providing more services at a community level, so that the fear of going to hospital is reduced. I am pleased to say that that has already been piloted in Wiltshire for chemotherapy services with the help of Hope for Tomorrow, a charity that provides mobile chemotherapy units and for which I am a regular fundraiser. That is just one example of how we can go much further in the field.
There is work to be done to reduce the health inequality shown by higher rates of mortality in deprived areas. Assessing risky lifestyle behaviours such as smoking and poor diets, combined with active screening and symptom awareness programmes, is vital.
Last weekend, a close family friend of mine lost their battle and died of secondary breast cancer. I learned from first-hand experience that the most important thing we need to do is improve care across the entire cancer journey. We need to start looking at it as a journey and to ensure that a personalised and individual programme is developed, with the family playing a part. It is of the utmost importance that secondary breast cancer patients have access to appropriate services or are referred to specialist palliative care, which can provide more effective pain relief in the management of illnesses, if they so wish.
The cost of cancer will undoubtedly continue to rise during this Parliament. That is why I return to the need for a clear long-term strategy to address this problem. That includes investing in reducing the impact of primary cancers to save money and to save lives in the long run, as well as personal cancer care plans for those living with cancer.
In conclusion, I hope we will do even more to support those living with cancer because this disease touches so many of our lives and affects so many people. I hope the Minister will look closely at Macmillan’s proposals to fund an independent review of end-of-life care choices.
Dr Lisa Cameron (East Kilbride, Strathaven and Lesmahagow) (SNP)
It is a pleasure to speak under your chairmanship, Ms Dorries. I congratulate the hon. Member for North Warwickshire (Craig Tracey) on securing this extremely important debate. I refer Members to my entry in the Register of Members’ Financial Interests, having worked as a clinical psychologist in the NHS for 20 years.
A diagnosis of secondary breast cancer means that the cancer can be treated but not cured. In those cases, the aim of treatment is to control and slow down the spread of the disease, to relieve symptoms and to give the person the best possible quality of life for as long as possible. At present, there are many treatments that can keep the cancer under control, often for many years. However, when it comes to breast cancer, it appears that the focus has overwhelmingly been on primary breast cancer, and there has been a lack of awareness of and attention to secondary breast cancer. This is therefore an extremely important debate, particularly as this month is Breast Cancer Awareness Month.
There appear to be real problems with equity of care across the country. While there are examples of good practice, it appears that quality of care can depend upon location, and that people with secondary breast cancer often receive inadequate care. Access to a clinical nurse specialist from the point of diagnosis onwards has been highlighted as an extremely important development, as has a multidisciplinary team approach to people’s care.
I would like to highlight the relevance of continuity of care between hospital and community services, alongside timely information on all aspects of treatment and care for patients. Access to information, as has been described, about both local and national services is crucial, as well as access to expertise in palliative care for symptom control and ongoing management of troublesome symptoms. It is important that support is provided for the partners, families and children of patients, and I hope the Minister will comment on that in her response. Access to appropriate treatments is also important, as is being made aware of the availability of local clinical trials that may be pertinent.
There has to be a regular assessment of patients’ emotional wellbeing and access to an appropriate level of psychological support. That support should be available whenever needed by the patient, particularly at diagnosis, when cancer progresses and at the end of each treatment. I am aware that Breast Cancer Now has highlighted the huge emotional toll for women living with secondary breast cancer in terms of the anxiety and uncertainty of having to go for regular scanning to monitor their condition. In a video on Breast Cancer Now’s website, one patient describes her experience of going for scanning every three months and then having to wait two weeks to find out the result. During that period, she describes experiencing “scan anxiety” about the potential outcome. Before getting the results, she mentally prepares herself to expect the worst, so as not to be disappointed. She describes crying due to the emotional stress, even when the news is good, and then going away to live her life for another two months before having to start the cycle again.
I am aware of three important articles in The Lancet from 2014 that looked at the prevalence of depression and mental health problems in oncology patients, including those with secondary cancer, the majority of whom were receiving no form of treatment for their mental health difficulties. The recovery from and management of physical conditions is aided by people having good mental health and wellbeing, and that is corroborated by NICE guidance from 2009. There is therefore a need for greater access to psychological therapy provided by the NHS, which has often been inadequate. There should be increased training for clinical nurse specialists in psychological modes of therapy such as cognitive behavioural therapy, so that they can directly assist patients. Greater parity between physical and mental health services is key, alongside greater integration of those services for patients who have a dual diagnosis.
Jo Churchill (Bury St Edmunds) (Con)
I thank my right hon. Friend—sorry, my hon. Friend the Member for North Warwickshire (Craig Tracey); I just gave him a promotion—for securing the debate.
I come to this with a slightly different hat on. As I prepared to speak, I tried to decide whether the word “cancer” or “secondary” was the scariest. For me, it is “secondary”. I have had cancer a couple of times, and the scan anxiety that the hon. Member for East Kilbride, Strathaven and Lesmahagow (Dr Cameron) talked of is so real, as is the need for joined-up services and clinical nurse specialists. We need to be able to be a person in the pipeline. Owing to the shortness of time, I will not say a lot of what I was going to say, but I will try to concentrate on what it feels like for the person.
We know the statistics. We know that 50,000 women and men—we must remember that there are men with breast cancer too—get breast cancer per year. The good news for primary breast cancer sufferers is that many of those people are survivors. Victoria Derbyshire is a fine example to us only this morning, in the papers; good luck to her with her battle.
Some of my friends and constituents to whom I have spoken have had secondary or metastatic breast cancer. It sounds hopeless, but it is not. With improved drugs and more targeted and tailored treatment, survival time is longer. Yes, there are 36,000 people living with breast cancer, but it is better quality survival that most of us want. It is about the quality of survival.
I started my journey to becoming an MP by talking in 2010 in one of the rooms in this place about primary cancers and how we had some of the poorest outcomes in Europe. Things are not so much better in 2015. We need to keep our feet to the fire and ensure we push hard on this disease, so that we start to get real progress for primary, and particularly secondary, cancers.
My hon. Friend the Member for Chippenham (Michelle Donelan) mentioned old age but those from various ethnic minorities also have extremely poor outcomes. We must pay heed to that. How can we get better outcomes? The cancer strategy for England calls for improvements from pre-diagnosis to post-treatment. That is vital but we should ensure that patients receive optimum support and interventions so that they can get on with their lives. We need to think about lifestyles and lifetimes, and about which cancer services we need, to enable people to carry on working for as long as they want, so that they feel like people, not like cancer patients. That is the important thing for people living with this disease. We want people to lead healthy, fulfilled and productive lives, whichever stage of the disease they are at. The strategy proposes the development of a national metric of quality of life, underpinned by a robust approach to measurement, which will incentivise the provision of better aftercare interventions.
We want multidisciplinary teams. They really improve outcomes for patients and, when people are diagnosed, they want people other than oncologists. They want to talk to a psychologist as the disease sometimes messes with their heads more than it does with their bodies. That important pipeline is, oh, so needed. There should be robust surveillance systems, as my hon. Friend the Member for North Warwickshire said. It is important that we know what we know, so that we know how to get to the root cause of the problem.
Since 2011, six breast cancer drugs have been available. There was a debate in this place yesterday about the cancer drugs fund. We need sustainable funding to ensure that women and men get the treatment that they need. Treatment should not be a lottery. In my view, this pot is a sticking plaster that has gone a bit curly around the edges. It needs revising and refreshing. There needs to be an efficient way of moving drugs from the cancer drugs fund into positive and routine commissioning. Currently, it is out of date and not fit for purpose.
I welcome the accelerated access review, which reports at the end of the year, and the cancer drugs fund, but I urge the Government to make some speedy decisions because, as 4 November looms, people are sitting on the edge of decision making, not knowing whether they are likely to get treatment or not. Although we have said that women and men who are on their treatment programme will still receive that treatment, it is not so certain for those who are not yet on those drugs.
We could learn a little from the Scottish Medicines Consortium because, on this, it does some things a little better than we are managing to do. It commissions and moves more swiftly. We could also unblock our pipelines. We are potentially disabling innovative medicines. We need to trial innovative drugs that can be used to prolong life and have a conversation with pharmaceutical companies if England does not want to fall behind in the race to make the medicines of the 21st century.
Research is so important, as is this debate on secondary breast cancer because science will unlock the ability to fight the disease. Geneticists on the 1000 Genomes Project have already discovered more than 100 regions of the genome that contain genetic variants. Work goes on in labs, such as the Genesis Genetics research, targeting who is susceptible and why. If we know people are more susceptible, the better they can be treated. Evidence-based is good but it charges industry and researchers with helping to drive things forward.
As a survivor and someone who has held too many women for whom secondary breast cancer has not offered longevity, I dream of a day when immunotherapy, CyberKnife and the work of drugs companies means that this insidious disease is a has-been. We need a lifetime approach, preventive medicine and preventive care. We need to watch our weight, keep healthy and be active, and the drugs that we need when we need them—in hospital or in the community.
Dr Philippa Whitford (Central Ayrshire) (SNP)
I commend the hon. Member for North Warwickshire (Craig Tracey) for securing this debate, which marks breast cancer awareness month. Most Members know my interest. I was a breast cancer surgeon for 33 years. The hon. Gentleman said that secondary breast cancer does not gain from the focus that we put on primary breast cancer. I have to disagree with that. In Scotland, we collect the stage at diagnosis and one in five patients still have metastases at the time of diagnosis. That means that we still have a huge job to do to get earlier diagnosis through screening and raising awareness, which is what October is all about. We are limited for time and I will do my best to respond to as many points as possible.
Regarding audit, I chaired the discussions on quality improvement standards for breast cancer in 2001, at which time we discovered that about a quarter of units did not gather any data at all. By 2003, we had managed to change that and we were getting data on the primary treatment of patients. That was against the breast cancer standards that we had set for the entire journey that a patient would go through. In 2007, I was chair for the update of those standards and, at that point, it became a standard that all patients with recurrence or metastases must come back to the multidisciplinary team for discussion. At that point, those data are also gathered. As yet, we do not have a Scottish-wide, absolutely rock-solid way of providing the data. They are being collected through our cancer registry, from SMR01 data and from what we do in-house.
In my unit in Ayrshire, we had a follow-up page for the patient at the end of the data system. Every year when the patient came for the follow-up, a chitty was ticked, sent up to the office and on it went, showing that the patient was alive and well on whatever date they had come. For patients moving to mammographic follow-up, if the mammogram is clear and there are no issues, the procedure is the same. The data on patients with recurrence or metastases must be collected at the multidisciplinary team. That is something that we were doing. We have to look at the systems to make it easy and not burdensome, but that requires that hospitals and trusts have an audit team. Our auditor sits in the multidisciplinary team, where she captures all the treatment of the primary and secondary patients. That is really important.
The hon. Member for North Warwickshire mentioned CNSs. There are different approaches. In our unit, we treat approximately 400 new breast cancers every year, which means that a significant number of patients have recurrent and secondary breast cancer. We talked about whether we should split our teams and have one for secondary breast cancer. We decided against that because we have a breast cancer team, which the patient will have met at the beginning. I felt that meeting the same team—a friendly face or someone the patient knew from three or four years ago—is a benefit.
Many units have surgical cancer nurse specialists, who do not move into chemotherapy or oncology. Obviously, that would not work that way. Our cancer nurse specialists travel the whole journey with the patient, looking after the patient in the surgical part of the journey and in the oncology clinic during chemotherapy. They are also there if the patient is unlucky enough to face recurrence or metastases. I believe that this linear approach—as long as enough nurses are provided for that support—gives the advantage of continuity.
My hon. Friend the Member for East Kilbride, Strathaven and Lesmahagow (Dr Cameron) mentioned looking at the wellbeing of patients. In Scotland, we use something called the distress thermometer, which is used for patients undergoing treatment for primary and secondary breast cancers. It is quite a quick, easy tool that, at least, allows us to pick out a patient who is not doing so well and therefore identify them for additional support. Our cancer nurse specialists have all had additional training. We have a specialist oncology psychologist on our health board, who provides additional training to the nurses. Therefore, for someone who needs it, that extra help and counselling is available. For someone with more complex needs, or where the diagnosis of breast cancer or metastatic breast cancer comes on top of mental health issues, the oncology psychologist would give us that back-up by taking on the patient.
The hon. Member for North Warwickshire mentioned palliative care. In Ayrshire, we are lucky enough to have a hospice. It is routine for us to refer patients at the point at which they are metastatic and symptomatic. We do not refer them as soon as they are metastatic because if a patient is hormone-sensitive, they have a 50% five-year survival with metastatic disease. That is because we have so many treatment options and breast cancer appears to behave quite differently from other cancers in that we can get it into a balance. The patient can be very well and active, yet the disease is sitting there. As soon as the patient starts to have symptoms, we have liaison nurses in our hospitals and we make a referral. Part of our GPs’ quality outcome framework is that patients who are defined as palliative must be discussed regularly in primary care and be on a palliative care register.
We had the debate on assisted dying just last month. The clear decision of the House was that we would not go down that route. That throws back on to the Government, and us all, the responsibility to ensure that high-quality palliative care services are there. We cannot vote that way as convincingly as we did and then not step up to the mark. That is really important.
I do not have a lot of time to speak, but I should say that we are doing good things in Scotland. Because we are smaller, we have been able to create a single day when all the teams in Scotland come together—actually, they come together for two days: a trial and research day and an audit day. Our whole audit—all the dirty washing—is put up in a PowerPoint presentation and we have a completely open learning discussion about it. A one-year project is starting now, so hopefully the data, including detail on secondary, recurrence and survival, will be available in autumn next year.
Andrew Gwynne (Denton and Reddish) (Lab)
I congratulate the hon. Member for North Warwickshire (Craig Tracey) on securing this important debate and the laudable and worthwhile work he is doing as a member of the all-party group on breast cancer.
We have made huge progress on improving cancer services—in the past decade, five-year survival rates for nearly all types of cancer have improved—but we still lag behind other countries, and there is worrying evidence from the past five years that the progress we have been making on cancer care has stalled, or potentially even gone backwards. In government, Labour created 28 cancer networks to drive change and improvement in cancer services. The networks brought together the providers and commissioners of cancer care to work together to plan and deliver high-quality cancer services in their areas. They helped to oversee and drive up the quality of services delivered to cancer patients. By significantly changing their structure and cutting millions from their budgets, as well as by scrapping the highly regarded national cancer action team, the coalition Government disrupted those networks.
Our hard-working clinicians and staff are trying their best within the system; despite the challenges, they continue to deliver quality care, so we should all pay tribute to them. Early diagnosis is critical to improving cancer survival because treatment is more likely to be successful at an earlier stage. Naturally, far too many of those people diagnosed through the emergency route are in the advanced stages, meaning the prognosis is poor compared with that for cancer diagnosed through other routes.
The nature of cancer is changing. Just as with AIDS, rapid advances in technology have meant that for many cancer is no longer the death sentence it once was. Such welcome changes do, however, mean that cancer is increasingly being considered a long-term condition, which has its own requirements in terms of long-term care and support. The chance of recurrence, as in secondary breast cancer, underlines the importance of remaining vigilant. It is possible to reduce considerably the probability that people with cancer will experience long-term poor health following treatment by providing appropriate and co-ordinated support and intervention. That is what we must do.
No breast cancer patient should end up lost in our vast health system, unable to find the treatment to which they are entitled. Cancer survivors have to be properly supported once their treatment stops to help their recovery and minimise the impact of their illness on their overall health and wellbeing. The current formulaic approaches are not meeting the needs of cancer patients, and the current hospital-based follow-up service simply will not cope with the growing cancer population.
If implemented, the strategy developed by the Independent Cancer Taskforce in its report would be a huge leap forward. I am pleased that the Department of Health has already made some commitments, and we look forward to hearing more following the spending review, but we need to ensure that these things actually happen. Equally, the cancer strategy recommendation of a “living with and beyond cancer” programme to ensure that people are fully supported and their needs are met should be followed through. I commend those developing support networks in their local areas, but they deserve more backing from the Government. I welcome the Government’s commitment to ensuring that everybody has a recovery package by 2020. That is crucial, as one in three people experience moderate to severe unmet needs after their treatment.
We owe it to the families battling secondary breast cancer today to continue to have high ambitions. I thank all Members for their contributions. Despite political differences, we do all have the same ambition: to bring forward the day when this terrible disease is beaten.
The Parliamentary Under-Secretary of State for Health (Jane Ellison)
I congratulate all colleagues on an excellent debate. It is a shame that time has slightly beaten us. I fear it will beat me as well: if I am to allow a minute or so for my hon. Friend the Member for North Warwickshire (Craig Tracey) to respond at the end, I might not have the chance to make some of the points I would like to have made. Nevertheless, this debate in Breast Cancer Awareness Month is very timely for all the reasons mentioned. There have been some important contributions. I always enjoy listening to the hon. Member for Central Ayrshire (Dr Whitford); she brings incredible experience to debates of this nature.
As the cancer drugs fund was debated in this Chamber only yesterday with my hon. Friend the Under-Secretary of State for Life Sciences, I will not touch on that so that I save a little time. As others have said, we want to do a lot better in tackling cancer, and our aim is to lead the world. Survival rates are getting a lot better: for people diagnosed between 2011 and 2015, we are on track to save a projected 12,000 more lives a year. But we do want to go further. Nevertheless, as we ask what more we can do, we should acknowledge that we are making progress, although much of the rest of the world is too.
In January, NHS England asked the independent cancer taskforce to draw up a five-year strategy. It was published in July and recommends a range of improvements across the cancer pathway. Some Members were present in the House in July when the chair of the taskforce, Harpal Kumar, presented its conclusions to us. The strategy is an excellent bit of work and, as our manifesto made clear, we are working with the NHS, charities and patient groups to deliver it. It is important to tell the House that to support the delivery of the strategy, NHS England has appointed Cally Palmer, chief executive of the Royal Marsden NHS Foundation Trust, as NHS national cancer director. While continuing in her current position, she will lead the implementation of the strategy, alongside work to test new models of care at the Royal Marsden hospital and University College London hospital, in partnership with Manchester Cancer. Those are important developments.
The importance of secondary breast cancer was acknowledged in the taskforce report, which noted that all NHS trusts should now be recording recurrent and secondary breast cancer patients, but we acknowledge that uptake has been variable thus far, as highlighted in the opening speech. I made the importance of data collection one of the strategic priorities in my letter to Public Health England earlier this year, so we know that we need to do better.
Following a 2012 pilot managed by the National Cancer Intelligence Network, all breast units have been required to submit information on all patients diagnosed with a new recurrence or metastatic disease through the cancer waiting times process. For breast cancer cases, that now includes a data item on cancer recurrence. Data have been submitted monthly since January 2013, but collection remains challenging because relapsed patients may re-present in many different ways and through many referral routes, as the hon. Member for Central Ayrshire mentioned. For example, they might re-present through a routine follow-up appointment, by contacting their GP with renewed symptoms or by presenting with another unrelated condition, at which point secondary breast cancer has been diagnosed. There are some practical barriers, but we do need to do better.
To drive up the quality and completeness of the data, trusts are sent monthly reports so that they can benchmark themselves against other trusts, which has been effective in driving up performance in other areas of cancer care. Over the next year, those reports will include data on recurrence of cancer. In addition, more work is being scoped by NHS England and Public Health England based on the recommendation from the cancer taskforce to establish robust surveillance systems to collect relevant data. We know there is more to be done on the detection of secondary breast cancer, which can be diagnosed many years after primary breast cancer, as other Members have said. Although survival rates are improving, the breast cancer clinical reference group of NHS England is determined to ensure that everything possible is done to reduce the risk of secondary breast cancer. The group is in the final stages of producing a guideline on breast cancer services to improve information given to patients about the risk of secondary breast cancer. Such information is currently variable and sometimes inadequate, as highlighted by my hon. Friend the Member for Bury St Edmunds (Jo Churchill).
Mark Durkan
The Minister touches on a point that reinforces the fact that, as a basic rule of thumb, policy makers and service planners should know the numbers and the needs. She addressed the numbers when she spoke about data. Knowledge about needs is best developed by listening to the patients themselves, who expressed those needs forcefully in the five-point bucket list from Breast Cancer Care.
Jane Ellison
I am sure we would all agree with that important point.
I will finish by discussing the new guideline that the clinical reference group is developing. The guideline will state that all patients with primary breast cancer should have a consultation with a clinician at the end of treatment that will include advice on spotting signs and symptoms that might indicate secondary breast cancer. That information will be delivered together with an assessment of the patient’s physical, psychological and social needs—I am interested in the distress thermometer that the hon. Member for Central Ayrshire mentioned, as well as in the contribution of the hon. Member for East Kilbride, Strathaven and Lesmahagow (Dr Cameron). The overall recovery package is being developed in partnership with Macmillan Cancer Support. The evidence is that that work is very effective where it has been done well. The advice that has been given will be recorded in the records of every breast cancer patient so that we know it has happened and so that we can track it.
NHS England hopes to publish the new guidance as a cancer resource on its website in the next few weeks. We will promote that guidance through the usual channels, but we would appreciate it if hon. Members with a particular interest, and particularly my hon. Friend the Member for North Warwickshire—I congratulate him on his appointment as co-chair of the all-party group—could draw this important document to people’s attention.
The clinical reference group will also consider how the care and support of patients diagnosed with secondary breast cancer can be improved, including through the provision of clinical nurse specialists. Of course, we agree that clinical nurse specialists play an important role. The number of patients reporting that they have been given the name of a CNS rose from 84% in 2010 to 89% in 2014, including 93% of breast cancer patients. We are doing a lot better, but hon. Members are right to highlight that, in the case of secondary breast cancer, we have some distance to go.
Members have said that we need to step up on palliative care, particularly in the light of last month’s debate—the hon. Member for Central Ayrshire made an important speech in that debate. We are committed to ensuring that everyone has access to high-quality, personalised palliative care. Breast Cancer Care’s new report, “Too little, too late”, is an important contribution to the debate about what we need to do. The Government have introduced five new priorities for end-of-life care—those are five important new principles—and my ministerial colleagues will be taking that forward. Nevertheless, I welcome Parliament’s new focus on palliative care and quality end-of-life care, which is important.
In the few seconds that I have remaining, I want to give people confidence that a lot of research is going on in this area. There is more research into cancer than any other disease in terms of National Institute for Health Research funding. In particular, the NIHR’s clinical research network is currently recruiting patients for nearly 100 trials and studies in breast cancer. One is a global trial that aims better to control secondary breast cancer using a drug called a dual mTOR inhibitor. I am delighted to say that the network recruited the first patient in the world to this trial, which I hope is an indication of the importance of our research infrastructure.
Jane Ellison
I am afraid that I do not have time to give way. We can speak after the debate; I apologise.
A lot of other things are going on in that area, but I will leave just a few seconds to my hon. Friend the Member for North Warwickshire. However, I reassure Members that this subject is of huge importance to the Government.
Craig Tracey
I will be very quick.
I thank the Minister for her response. I also thank the other Front-Bench spokesmen, especially the hon. Member for Central Ayrshire (Dr Whitford) who obviously brings a great deal of expertise to the debate. I thank all colleagues who have taken part in this debate, particularly my hon. Friend the Member for Bury St Edmunds (Jo Churchill) for sharing her experience.
It is clear from the debate that we all have the same objectives; we all want to get the same thing and there are many common arguments. However, the fact remains that 11,700 people still die from secondary breast cancer every year, so there is more that we can do. I ask the Minister to ensure that more is considered in relation to secondary breast cancer.