The case for change

For more than a decade we've been campaigning to improve the care and treatment of 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’ve set up a number of services to support people living with secondary breast cancer and have campaigned for improvements.

Building on previous research[i], in 2019 we undertook a comprehensive survey[ii] of people living with a diagnosis of secondary breast cancer, to understand the current experiences of those living with the disease. Over 2,000 people took part in the survey, making it the biggest ever survey for this patient group across the UK.

The results showed that many people with secondary breast cancer experience delays in diagnosis, struggle to access the support of a specialist nurse, fear they won’t be able to access the treatment they need in the future, and are not given sufficient information about clinical trials.

The survey found:

• 23% of respondents had to see their GP 3 or more times before they were diagnosed
• Only 13% of respondents who had previously had breast cancer felt they were given enough information from healthcare professionals on the signs and symptoms of secondary breast cancer to look out for
• 1 in 6 respondents said they didn’t feel confident they would have access to the most appropriate drug treatments in the future
• 53% said they had not been given enough information about clinical trials by healthcare professionals
• Only 30% of respondents said they see a CNS regularly

Based on the responses to the survey, we’re calling for prompt diagnoses, for fast access to treatments patients need at a price affordable to the NHS, and for more specialist support.

And we’re calling for a comprehensive understanding of the number of people living right now in the UK with secondary breast cancer. This is something we still don’t have despite a decade of calling for this and commitments from policy makers to tackle this.

Our campaign demands urgent change so that everyone with secondary breast cancer can live well for as long as possible.

[i] Breast Cancer Now (2016-2018), Secondary. Not Second Rate. Available at: https://breastcancernow.org/get-involved/campaign-us/secondary

[ii] Breast Cancer Now (2019), The Unsurvivors. Available at: https://breastcancernow.org/get-involved/campaign-us/unsurvivors

England

Following campaigning by Breast Cancer Now and our amazing supporters, a new National Audit of Metastatic (secondary) Breast Cancer (NAoMe) was announced in England and Wales in 2021. The audit will for the first time record the numbers of people diagnosed with secondary breast cancer.  

The aim is that more up-to-date figures on the number of people living with the disease will help local health services plan - and drive - improvements.  

As part of the audit, quarterly data releases will be issued – the first of which was published in April 2024. Whilst we welcome this, the first release highlighted the extent of missing data, which needs to be urgently addressed. The Annual ‘State of the Nation’ reports will also be published, with the first expected towards the end of 2024.  

NHS England set out ambitions in its NHS Long Term Plan that, by 2021, “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” [1].  

NHS England’s People Plan for 2020/2021 confirmed that “training grants are being offered for 350 nurses to become cancer nurse specialists and chemotherapy nurses” [2]. However, to date it remains unclear what progress has been made in increasing numbers of CNSs, particularly for people with secondary breast cancer.   

The National Institute for Health and Care Excellence (NICE) has two breast cancer guidelines which are applicable in England and Wales [3, 4]. However, there’s a lack of clear guidance for ensuring that people are aware of the signs and symptoms of secondary breast cancer once they’ve 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.

Wales

A Cancer Improvement Plan for NHS Wales 2023-2026 [5] is the plan to improve cancer outcomes and reduce inequalities in Wales.

The plan doesn’t refer to metastatic breast cancer. It does recognise that the number of metastatic cancers are increasing, the needs of metastatic patients are complex, and every person diagnosed with cancer – including those with metastatic cancers – should be supported by a named key worker (usually a clinical nurse specialist).

Campaigning by metastatic breast cancer patients and their supporters in Wales, during which they petitioned the Senedd, won further commitments for metastatic breast patients in Wales, including:

• A clinical pathway for metastatic breast cancer
• Modern data collection forms for metastatic breast cancer - rolled out in 2023
• NHS Wales joined the national audit of metastatic breast cancer, with reporting due later this year 
• A commitment for a clinical nurse specialist covering metastatic breast cancer in every health board

Scotland

In 2023 the Scottish Government published a 10-year Cancer Strategy for Scotland [6] and the first 3-year Action Plan [7]. The current action plan commits to collecting national data on secondary cancer by 2026, starting with secondary breast cancer. 

The Scottish Referral Guidelines for Suspected Cancer currently don’t provide advice for primary care healthcare professionals on how to identify the signs and symptoms of secondary breast cancer and when to refer.

The Scottish Government has recognised in the Action Plan the need to improve diagnosis for all cancers and support GPs to refer people with cancer as early as possible. It has committed to updating the Scottish Referral Guidelines for Suspected Cancer [8] and providing GPs with educational courses. 

There is no reference to Clinical Nurse Specialists (CNSs) in the 10-year Strategy. However, the Action Plan does commit to completing a workforce review of key professions in cancer services. And it is continuing to invest in the Single Point of Contact pilot project, which is meant to free up time for CNSs to support and address new complex care needs. 

Northern Ireland

A Cancer Strategy for Northern Ireland 2022-2032 [9] states that all people with cancer, including children and young people, will have access to a Clinical Nurse Specialist (CNS) throughout the entire care pathway, specifically highlighting the need for CNS support for metastatic patients. The strategy also makes a commitment to develop a Northern Ireland multi-professional cancer workforce strategy, alongside a training plan to ensure there are CNSs to provide this care.

References

[1] NHS England (2019), The NHS Long Term Plan (page 61): NHS Long Term Plan v1.2 August 2019

[2] NHS England (2020), We are the NHS: People Plan for 2020/2021 – action for us all (page 41): We-Are-The-NHS-Action-For-All-Of-Us-FINAL-March-21.pdf (england.nhs.uk)

[3] NICE (2009, last updated 2017), Advanced breast cancer: diagnosis and treatment: Overview | Advanced breast cancer: diagnosis and treatment | Guidance | NICE

[4] NICE (2018, last updated 2024), Early and locally advanced breast cancer: diagnosis and management: Overview | Early and locally advanced breast cancer: diagnosis and management | Guidance | NICE

[5] Wales Cancer Network (2023), A Cancer Improvement Plan for NHS Wales 2023-2026: executive.nhs.wales/functions/networks-and-planning/cancer/cancer-improvement-plan-docs/full-plan/

[6] The Scottish Government (2023), Cancer Strategy for Scotland 2023-2033 Cancer Strategy for Scotland 2023-2033 (www.gov.scot) 

[7] The Scottish Government (2023), Cancer Action Plan for Scotland 2023-2026 Cancer Action Plan for Scotland 2023-2026 (www.gov.scot) 

[8] NHS Scotland (2019), Scottish Referral Guidelines for Suspected Cancer Home (scot.nhs.uk) 

[9] NI Department of Health, A Cancer Strategy for Northern Ireland 2022-2032 (health-ni.gov.uk)