Why we want to see NHS clinical nurse specialists supporting more people with secondary breast cancer

The challenge  

We still hear that people living with the disease struggle to receive regular support from CNSs. i

We also know how challenging it is for CNSs who want to offer quality support to their patients but are stretched to capacity.  In research that we commissioned in 2020, CNSs highlighted the top two reasons why they don’t have enough time to support secondary breast cancer patients: ii 

•  increasing numbers of patients 

•  time spent on administrative duties 

What we wanted to know

We wanted to explore whether the experiences of people with secondary breast cancer, and the CNSs that support them persist or have changed over time.  

We recently held a focus group with CNSs in England and individual interviews with CNSs in Scotland, Wales and Northern Ireland. We also ran two patient focus groups with participants across the UK. Thank you to all those who took part and shared their experiences with us. 

What CNSs told us

CNSs told us about their experiences on several issues including capacity, funding, becoming a CNS, morale and retention. 

On the issue of capacity, one CNS told us:

Another CNS discussed how capacity was initially an issue which improved with additional support:

What people with secondary breast cancer told us 

Patients highlighted both the positive experiences that they had with CNSs, whilst also recognising some of the barriers. 

In describing their positive experience with their CNS, one person mentioned: 

One person who did not have a CNS told us that:

While another person highlighted that continuity of care was essential and stated that:

What we want to see

It's vital that all secondary breast cancer patients feel supported to live well with their condition. For Breast Cancer Now, this means making sure everyone with secondary breast cancer can access support from an NHS clinical nurse specialist with specific skills and knowledge relevant to people living with the disease.  

We are pleased that various health plans across the UK highlight the importance of improving access to CNS support.  For example, NHS England’s Long-Term Plan states that “all patients, including those with secondary cancers, will have access to the right expertise and support, including a Clinical Nurse Specialist or other support worker.” 

In Wales, the Cancer Improvement Plan 2023-2026 includes an action for all Health Boards to “ensure that all patients have access to a Key Worker by end of March 2024.” It states that this should include patients with metastatic cancer, and that the role is often undertaken by a CNS.  

The Scottish Government in its Beating Cancer: Ambition and Action in 2016 report committed to putting “the necessary levels of training in place so that by 2021 people with cancer would have access to a specialist nurse during and after their treatment and care.”  Similarly, the 2020 update of this strategy committed to improving access to specialist nursing, including funding and training.iii 

In Northern Ireland, the Department of Health’s Cancer Strategy for Northern Ireland 2022-2032 states that “CNSs should be available across the cancer pathway, through diagnosis, treatment for primary and metastatic disease and throughout follow up.” 

Yet it’s still unclear what progress has been made on these commitments since publication, particularly in ensuring access to CNSs for people with secondary breast cancer. 

We will use the insights that we received from our research over the summer this year to continue to push for better access to specialist support for people with secondary breast cancer.