What needed to change
There are approximately 35,000 people living with a diagnosis of secondary breast cancer in the UK. Nearly 1,000 people every single month do not survive breast cancer, almost all from secondary breast cancer. The experiences of people with secondary breast cancer are frequently unheard, their frustrations real and painful. But their will to live, and to have the best possible support and treatment, is palpable.
So, following on from our 2016 campaign 'secondary not second rate' we produced our Secondary Breast Cancer report in 2019. We called for prompt diagnoses, for better treatments and for more specialist support, as well as for a comprehensive understanding of the number of people living right now in the UK with secondary breast cancer - something we still don’t have despite a decade of calling for this and commitments from policy makers to tackle this.
What you helped us do
In 2019, we launched a petition demanding change for people with secondary breast cancer. Thanks to your incredible support, over 71,000 supporters signed our petition. This petition made governments across the UK stand up and listen; so, alongside our fantastic supporters, we met with the Scottish Cabinet Secretary for Health and Sport and sat down with the Secretary of State for Health and Social Care in England. At both meetings, we got the opportunity to discuss the importance of data collection and the need for a secondary breast cancer audit, access to Clinical Nurse Specialists, access to treatment and clinical trials and delays in diagnosis. When we delivered our petition to the Cancer Minister together with an amazing group of women living with secondary breast cancer, the experiences of people living with the disease were taken to the heart of Parliament.
In Autumn 2020, nearly 5,000 of you wrote to your MPs requesting them to call on the Government to secure the urgently needed funding for breast cancer in the Government’s Spending Review, including asking for the money needed for a secondary breast cancer audit and funding for recruiting and training more Clinical Nurse Specialists. Following this campaign, when the All-Party Parliamentary Group on Breast Cancer (APPGBC) secured a breast cancer debate in Parliament, our supporters helped us contact over 200 MPs asking them to attend. At the debate, MPs focused on secondary breast cancer and the need for an audit. We subsequently worked with the APPGBC to organise a roundtable, which brought together clinicians, pharmaceutical industry representatives and one of our passionate and dedicated secondary breast cancer campaigners – to make the case for this much-needed audit.
To mark a year since we handed in our petition, and ahead of the Scottish and Welsh Elections in May 2021, we wrote to both the Cancer Minister in England and Welsh and Scottish Party leaders to highlight the urgent changes still needed to support people living with secondary breast cancer.
Since the launch of this campaign, by continuing to share your experiences of secondary breast cancer treatments, you have also helped us make sure the patient voice is heard when a drug or treatment is being assessed for use on the NHS by the National Institute for Health and Care Excellence (NICE) and the Scottish Medicines Consortium (SMC).
What we achieved together
So far, with your help, we have:
- After 15 years of campaigning for data on secondary breast cancer, we finally secured a secondary breast cancer audit in England and Wales.
- Worked with Gateway C, a free online education platform, to develop a new course for GPs and other primary care professionals to improve their confidence in diagnosing potential cases of secondary breast cancer as early as possible
- Pushed for clearer guidance for healthcare professionals on the need to inform patients finishing treatment for primary breast cancer of the signs and symptoms of a recurrence, including secondary breast cancer
- Gathered evidence from Clinical Nurse Specialists to help us find out about nursing provisions in hospitals and what steps need to be taken to help them support people living with secondary breast cancer
- Made sure the experiences of people with secondary breast cancer are heard, including during drug appraisals by NICE and SMC. This has led to new drugs like trastuzumab deruxtecan being made available on the Cancer Drugs Fund
In our 2019 Secondary breast cancer report, there were a number of key recommendations and we’re continuing to push for change focusing on these specific issues that affect the treatment and care of people living with the disease.
To find out what our next steps our for this campaign and how you can get involved, go to our secondary breast cancer campaign webpage.