Last year, we launched a campaign demanding change for people affected by secondary breast cancer.
We're calling on governments across the UK to take action. Asking them to improve the treatment, support and care received by those living with the disease. We’re also calling on Health Ministers across the UK to meet with people living with secondary breast cancer to discuss the issues facing them.
In this blog, we'll look at some of the results of the campaign so far. We'll also tell you about everything the team here at Breast Cancer Now have been doing behind the scenes. Working to make sure everyone with secondary breast cancer can live well for as long as possible.
Taking the campaign to UK governments
Over 60,000 people have backed the campaign by signing our petition. Thanks to this incredible support, we have already held meetings with Health Ministers in Scotland and England.
In December, we met the Scottish Cabinet Secretary for Health and Sport, Jeane Freeman, accompanied by members of our fantastic Secondary Breast Cancer Campaign Group, Jane and Alison.
In January, alongside Group members Miranda and Mary, we sat down with Matt Hancock, Secretary of State for Health and Social Care in England.
At both meetings, we got the opportunity to discuss the importance of data collection, access to Clinical Nurse Specialists, access to treatment and clinical trials and delays in diagnosis.
Following these productive meetings, we’re working hard to secure meetings with Health Ministers in Wales and Northern Ireland.
Getting secondary breast cancer on the agenda
We’ve been working to make sure the needs of people living with secondary breast cancer are at the heart of NHS plans across the UK. The huge backing the campaign has received has led to us:
- Working with the Scottish Government on their Cancer Strategy which we are hopeful will soon put forward plans for new work to improve care and support for people with secondary breast cancer in Scotland.
- Inputting into the new Northern Ireland Cancer Strategy to ensure the needs of people with secondary breast cancer are recognised and action is taken to address them.
- Pushing for the new cancer research strategy for Wales to include commitments on addressing the needs of people with secondary breast cancer.
Ensuring everyone with secondary breast cancer receives a prompt diagnosis
It’s crucial that people with secondary breast cancer are diagnosed promptly so that they can begin treatment and access supportive care as quickly as possible. However, we know that many are experiencing avoidable delays in diagnosis. That’s why we’ve been:
- Working with GatewayC, a free online cancer education platform for healthcare professionals. They're developing a course is to equip GPs with the knowledge to more confidently spot cases of secondary breast cancer, leading to quicker diagnosis. The course will be launched this summer.
- Calling on the National Institute of Health and Care Excellence (NICE) to improve its guidance for GPs on recognising and referring suspected cancers, so it includes guidance on recognising potential cases of secondary breast cancer.
- In positive initial conversations with the Scottish Intercollegiate Guidelines Network (SIGN) to develop guidelines for healthcare professionals on secondary breast cancer.
- Pushing 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.
- Working with NHS England to better inform healthcare professionals on the signs and symptoms of secondary breast cancer.
Ensuring everyone is supported by a clinical nurse specialist
We know that secondary breast cancer patients who see a Clinical Nurse Specialist (CNS) regularly receive much better support. However, far too many don’t get to see them often enough, or even at all. To help address this issue we have:
- Launched a survey for breast care nurses so we can understand the issue from their perspective. The survey will also help us to find out about nursing provision in hospitals across the UK and the challenges nurses face. We will use this as a basis for further campaigning on CNSs which we plan to launch in late spring.
- Talking to NHS England about how CNSs can be supported to develop their knowledge and skills to support patients with secondary breast cancer and pushing for commitments on this to be included in their upcoming People Plan expected in spring.
Ensuring everyone has access to the treatments they need
Having quick access to clinically-effective treatments is crucial for secondary breast cancer patients as it can significantly extend the time before someone’s disease progresses, in some cases extend lives, as well as improving people’s quality of life. But delays in accessing these treatments can mean patients miss out. We’re pushing for changes in this area by:
- Taking part in a review that NICE is undertaking into its processes for assessing treatments. This is an ongoing piece of work where we continue to highlight how things can be improved to benefit breast cancer patients now and in the future.
In the meantime, we’ve been responding to a number of ongoing drug appraisals,working with patients to ensure their views are heard by decision makers. This has included:
- palbociclib with fulvestrant for use on the NHS in England which has now been made available.
- a new treatment for certain patients with secondary triple negative breast cancer called atezolizumab with nab-paclitaxel. In a draft decision in October 2019, this treatment was not recommended for use on the NHS in England. We’ve been working behind the scenes to ensure this treatment will be made available on the NHS to eligible patients when the final decision is made. For an update on this please see our latest blog on access to this treatment.
Ensuring everyone with secondary breast cancer is acknowledged
We’re continuing to push for data to be collected on the number of people diagnosed with secondary breast cancer across the UK. This information is vital to ensuring that commissioners and healthcare providers have the information they need to effectively plan their services for people living with the disease.
In England, we are expecting the latest data from the Cancer Outcomes and Services Dataset (COSD), the national cancer dataset in England, to be published in April. The latest version of the dataset includes improved ways to record secondary breast cancer diagnoses so we hope to see this leading to more complete data being recorded.
We’ll continue to push for data collection in our meetings with policy makers across the UK – we have already raised it with both Matt Hancock and Jeane Freeman – and if the data published in April is still incomplete we will prioritise campaigning work on data collection in the coming year
Improving treatment and care for people living with secondary breast cancer is a priority for Breast Cancer Now. We’ll continue to campaign for change across the UK.
We’ll be handing in our petition to Cancer Minister, Jo Churchill on 3rd March. Add your voice by joining the campaign.