Apologies for the delay in responding to your questions and comments; it's been a busy few weeks.
We will come back to you on our plans for SBCAD next week when we have finalised plans, but I would like to come back to you with a bit more information about our campaigning work as requested.
Our small Policy and Campaigns team is guided by the perspective of people who use our services, including forum users, healthcare professionals and up-to-date research. The team works on a small number of carefully chosen campaigns highlighting the voice of people affected by breast cancer to health policy decision-makers and others who influence breast cancer care in the UK.
We campaign in areas where we believe we stand a chance of driving beneficial change in policy and practice as well as improvements in our own services and understanding. We ensure our campaigns are breast-cancer specific and don't duplicate the work of other charities. We add the voice of our breast cancer experience group to the campaigns of other charities where appropriate. For example, Macmillan has a large team working on welfare reform so we support their campaign but do not lead one of our own in this area. This means we can ensure breast cancer is not lost in such campaigns while using our limited resources to greatest impact.
The major campaigns we've been working on in the past few years focus on secondary breast cancer, older women and breast cancer and, more recently, body image, sexuality and intimacy.
Our
Spotlight on secondary breast cancer campaign began six years ago because we were hearing from so many people that their experiences were vastly different and inferior to when they were diagnosed with primary breast cancer: we know that so many feel invisible and forgotten.
Through our campaigning work we have so far:
- achieved mandatory data collection on the number of people with local recurrence and secondary breast cancer in England. We are pushing for similar measures in Scotland and Wales, and working with Public Health England to monitor compliance
- raised the profile of the needs of people with secondary breast cancer in the NHS and charity sector by ensuring the National Cancer Strategies in England and Wales address the specific needs of people with secondary breast cancer. Scotland is currently reviewing its strategy, so we are working to influence this
- highlighted the importance of access to a secondary breast cancer clinical nurse specialist and developed toolkits and training to support nurses in this role
- involved sister charities Breast Cancer Campaign and Breakthrough Breast Cancer in raising the profile of secondary breast cancer in Parliament and with influential figures including Prime Minister David Cameron.
The older people and breast cancer policy work came from increasing evidence of inequalities in care and poorer outcomes for older people with breast cancer. We produced our first report in 2011 and presented it to the All Party Parliamentary Group on Breast Cancer. This powerful committee decided the issue warranted a parliamentary inquiry. We contributed heavily to the evidence, including submitting our policy reports and presenting research findings. The inquiry report was launched this week.
Our newest campaign is about body image, sexuality and intimacy, because we hear from so many women that they struggle in the long term with their altered body image and the impact of breast cancer treatment on their sexuality and intimate relationships. The anecdotal evidence is backed by research.
We hear that women and men often do not feel they should bother health professionals with these issues in the limited time they have at appointments or, if they do, that there's a lack services to meet their needs. The majority of the research evidence and our service feedback comes from people with primary breast cancer, but we also hear from a lot of people with secondary breast cancer too.
This policy campaign is not the one being discussed for secondary breast cancer awareness day, but a longer term campaign to bring about change in the NHS and government guidelines. You can read about the work so far and find future updates here on the link above.
We've been consulting with our advisory panel, which includes women with both primary and secondary breast cancer, clinicians, researchers and allied health professionals such as psychologists, lymphoedema specialists and therapists.
We also work on some reactive policy responses and consultations, for example, our clinical team respond to NICE (National Institute for Health and Care Excellence) consultations, lobbying hard for approval of new drugs to be approved, bringing our clinical expertise and the patient perspective to the table. We know there's been some concern that as a NICE stakeholder we may be restricted in criticising decisions. This is emphatically not the case.
We have also been working hard to make sure that nobody with breast cancer will lose out when the Cancer Drugs Fund comes to an end in January 2014. The Prime Minister has already made a commitment that anyone who currently receives treatment through the CDF will continue to do so. However we don't feel this is a strong enough commitment for the future of patients prescribed non NICE approved drugs. We've highlighted our concerns at meetings with politicians and at the Cancer Campaigning Group, a coalition of cancer campaigning charities that brings a very strong lobbying voice to any joint issues. We're continuing to seek concrete information and assurance on access to these essential drugs.
You specifically mentioned how our funding and connections may influence our activity. Being a NICE stakeholder does not stop us being critical of NICE's decisions or lobbying for change. In terms of funding from the Department of Health, we receive a relatively small amount of funding for specific pilot service development projects. But this doesn't affect our ability or willingness to highlight concern over decisions or standards of care. It is less than 1 per cent of our income and has no impact at all on our campaigning activity. Our priority is always people with breast cancer. If we felt a funding stream would restrict our ability to speak out for what we believe is right, we would not accept it.
With such a small team, we are always extremely busy, and updating our web pages may not always get the priority it deserves. But a great way to get up-to-date news is via our
policy blogs, which highlight much of our most recent work.
The Policy Campaigns Team
