Secondary Breast Cancer

Andrew Stephenson Excerpts

Wednesday 21st October 2015 Westminster Hall

[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.