Overview of Secondary Breast Cancer in Wales, Summer 2024

We want all people with secondary breast cancer, also known as metastatic breast cancer, to be supported to live well. We want the NHS in Wales to collect data on their treatment to inform how services are delivered with a treatment and care pathway which meets peoples’ needs and  gives access to a clinical nurse specialist (CNS). 

This blog provides an overview on the steps we’ve taken to work with stakeholders across Wales to help us ensure these goals are delivered. 

In September, National Cancer Audit Collaborating Centre published the first annual report of the National Audit on Metastatic Breast Cancer (NAoMe) for England and Wales. The data in this report helps reveal gaps in support and treatment for people living with secondary breast cancer in Wales. 

Unfortunately, the low level of data collection in Wales means that the latest report doesn’t give a full picture of secondary breast cancer treatment. There’s no information on how many secondary breast cancer patients in Wales have had a biopsy of a metastatic lesion. The report only identified 6% of patients have a record of their multidisciplinary team (MDT), who include surgeons, oncologists and nurses, discussing their care together in an MDT meeting. 

We’re pleased to see that the NHS Executive for Wales has taken steps to address this by rolling out a new data collection form for breast cancer. This should allow the NHS to gather and report more detailed data on secondary breast cancer patients. However, this new data won’t be used until the annual report in 2025, and won’t be used for the quarterly reporting until 2026.. That isn’t good enough.  

Health boards are also struggling to consistently use the forms to collect data. This could impact the quality of data reporting for future reports of the NAoMeaudit. 

Welsh Government and the NHS Executive need to support health boards so that they use these forms to collect data well and make sure the data can be used in the NAoMe audit annual and quarterly reporting as soon as possible. Otherwise, the NHS in Wales will continue to lack critical insights for planning and implementing services which will improve the lives of people with secondary breast cancer. 

We’ve also been monitoring the rollout of the metastatic breast cancer pathway. The pathway is a guide for clinicians on the treatments and support to offer secondary breast cancer patients to ensure they consistently receive best practice care. We were really pleased to feed into and support the pathway, as the first pathway to be approved specifically for secondary breast cancer in the UK last year. 

However, roll out of the pathway has stalled. Stakeholders in the NHS in Wales are meeting to discuss how to make sure this pathway is delivered.  

We’re looking forward to hearing more and working with different charities, health boards, and politicians across the sector, to make sure it’s delivered as soon as possible.

At Breast Cancer Now, we appreciate the important role CNSs play in supporting those who have received a primary or secondary breast cancer diagnosis. We are working to improve the inconsistent access throughout health boards in Wales.  

Earlier this year, we heard that the metastatic breast CNS at Wrexham Maelor Hospital was under threat due to budget cuts. We supported Mark Isherwood, a local Member of the Senedd, to engage the hospitals' health board, Betsi Cadwaladr, to raise the issue. We also engaged the Cabinet Secretary for Health and Social Services at the time, Eluned Morgan MS, about what the Welsh Government is doing to ensure secondary patients are supported by a secondary breast cancer CNS. 

The health board has since committed to protecting this role will until April 2025.We need longer term commitments at a national and local level to make sure there is access to CNSs for breast cancer patients across Wales.  

We submitted a response to Wales’ strategic nursing workforce plan to highlight the need to address this gap in access for secondary breast cancer patients. To build our evidence base and make the case to the Welsh Government, we held focus groups with people living with secondary breast cancer, to understand if and how they are supported by their CNS.

Despite these big challenges, we’ll keep pushing ahead and demanding better for people living with secondary breast cancer in Wales. We’re committed to making sure that no secondary breast cancer patient receives second-rate care. We continue to engage with Welsh government and NHS Executive, along with Members of the Senedd, including holding a parliamentary drop on 15 October as part of Breast Cancer Awareness Month to raise these issues facing secondary breast cancer. 

If you want to help support our work in Wales, you can sign up to join our Voices network, or become a case study here.