Find out why we are campaigning to improve care for secondary (metastatic) breast cancer.
Why Secondary Breast Cancer?
For over a decade Breast Cancer Care has campaigned to improve care and treatment for people with incurable secondary (metastatic) breast cancer. In 2006 we set up and coordinated the Secondary Breast Cancer Taskforce which identified gaps in treatment, care and support for people living with secondary breast cancer.
Since then, we have set up a number of services to support people living with secondary breast cancer and have campaigned for improvements.
Secondary. Not Second Rate research
Our 2016-2018 Secondary. Not Second Rate campaign included research that helped to build a UK-wide picture of current need in the areas of diagnosis, data collection, support and impact, and nursing care.
Our research found:
- Many people living with secondary breast cancer experience delays in diagnosis, leading to a delay in receiving vital treatment and care
- In England, fewer than a third of hospital trusts are collecting data in full on their patients with secondary breast cancer, despite it being mandatory since 2013
- People living with secondary breast cancer are often not getting the care and support they need
- The current availability of specialist nursing for people with secondary breast cancer is wellbelow the level of need. There is also a marked disparity between the level of specialist nursing support for people with primary breast cancer compared to people who have a secondary diagnosis, despite the latter often having very complex emotional and supportive care needs
Put simply, our research showed that people with secondary breast cancer often feel forgotten. They tell us the care they receive is inferior to the care that is greatly valued by people treated for primary breast cancer.
In order to drive service improvements in secondary breast cancer, we published the Setting the Standard of Care: current best practice in Secondary Breast Cancer report. This best practice report aims to put forward potential solutions to the challenges identified in our campaign by presenting best practice work in the UK and internationally in secondary breast cancer that can be adopted by other healthcare professionals to support service improvements.
Since the Taskforce was set up, commitments have been made by consecutive governments to make improvements. However our research, coupled with insight from people who use Breast Cancer Care’s services, suggests that there is still much more work to do.
Current policies in the nations
In July 2015, the Independent Cancer Taskforce published ‘Achieving world-class cancer outcomes: A strategy for England 2015–2020’, which set out a strategy to deliver significant improvements to cancer care. This was followed by the publication of an implementation plan in May 2016. The majority of the Cancer Strategy focuses on the prevention, treatment, support and experience of people living with and beyond primary cancers, however there are some relevant recommendations relating to those living with secondary cancers. These include the collection and publication of data on all secondary cancers, the recommendation that all cancer patients have access to a clinical nurse specialist, and the streamlining of the MDT process to allow focus on more complex cases, such as secondary breast cancer.
The National Institute for Health and Care Excellence (NICE) has two breast cancer guidelines which are applicable in England and Wales . However there is a lack of clear guidance on ensuring people are aware of the signs and symptoms of secondary breast cancer once they have finished treatment for primary breast cancer. Additionally NICE’s suspected cancer guidance lacks advice for healthcare professionals on recognising and referring symptoms of secondary cancers. These shortcomings represent a missed opportunity to ensure GPs and patients recognise the signs and symptoms of secondary breast cancer, which would enable a quicker diagnosis. Furthermore, although it has been compulsory for data to be collected by NHS Hospital Trusts on the number of people diagnosed with secondary breast cancer in England since January 2013, in 2016 the government estimated that only a quarter of Trusts were collecting this in full and to date no data have been published.
The Wales Cancer Network produced the Cancer Delivery Plan for Wales (2016–2020) in November 2016. The plan recognises that ‘patient experience… among metastatic patients is not as well understood as experience for other patients’. It goes on to state that services should meet the different needs of the population and outlines the need for patients with secondary cancer to be quickly identified, have data collected and have full access to services and support to meet their specialist needs through improved collection of information on the care provided, and a peer review delivered by the Wales Cancer Network. Breast Cancer Care recognises the commitments to improving support and care services for people with secondary breast cancer in Wales. While we welcome the recent consultation on, amongst other things, the mandatory collection of data for patients with secondary cancers, there are still no up-to-date figures on the number of people living with secondary breast cancer in Wales. We urge the Welsh Government to set out plans for the delivery of these commitments.
The Scottish Government published Beating Cancer: Ambition and Action in 2016 but we believe that it does not appropriately address the needs of people with secondary breast cancer. The only relevant action in the strategy is related to data collection and prevention of secondary disease. It is worth noting that despite this action, data collection is still not mandatory though some progress has been made as the Scottish Cancer Registry, working with Breast Cancer Care, identified an estimated 4,090 patients with secondary breast cancer in 2013. We would like to see this figure updated on an annual basis. Given the number of people living with secondary breast cancer in Scotland, the focus on survivorship for people with this disease represents a missed opportunity to improve standards of care and support for this patient group. What’s more, there is currently no clinical guidance relevant to secondary cancers.