Secondary Breast Cancer

Julian Knight Excerpts

Wednesday 21st October 2015 Westminster Hall

[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.