Written by James Coker | Senior Editorial Assistant, European Medical Journal | @EMJJamesCoker
On Thursday 9th November, the EMJ sat down with Ms Catherine Priestley, a clinical nurse specialist at the UK charity, Breast Cancer Care. With the annual Breast Cancer Awareness Month having concluded in October, and Secondary Breast Cancer Awareness Day occurring on 13th October, this was the perfect time to discuss the work of individuals like Ms Priestley in the organisation, and the role of the charity in raising awareness of the disease along with improving the lives of people with the condition. Ms Priestley specialises in secondary breast cancer, an incurable, and often an under-recognised advanced form of the disease, which formed the main basis of our discussion. With women able to live for longer despite the incurable nature of secondary breast cancer, it is imperative that a greater emphasis is placed on care and improving the quality of life these patients experience.
During the conversation, Ms Priestley described the day-to-day duties of clinical nurse specialists; campaigns the charity undertakes, including the recent secondary breast cancer ‘Manifesto for Change’ that was presented to parliament during Breast Cancer Awareness Month; the push to ensure a co-ordinated approach to breast cancer treatment across the UK; and finally, news of a possible change on the horizon in regard to the word ‘secondary’ being used for this stage of breast cancer.
Role of a Clinical Nurse Specialist
“To speak to somebody else who is in a clinical role in a hospital, like all of us have been at one time or another, and describe what you do is a really challenging thing because they are thinking: ‘I don’t quite get what you do’. But it is really very varied,” described Ms Priestley. It certainly seems that way; from working on the charity’s helpline, to participating in an advocacy capacity at events held by organisations such as the National Institute of Clinical Excellence (NICE), a clinical nurse specialist is a very multifaceted role. Ms Priestley estimates that around a quarter of their time is spent speaking to and answering the concerns and questions of breast cancer patients and friends and family of those affected via email and phone, providing reassurance as well as support and information about more technical medical issues. Substantial time is also spent helping review and update Breast Cancer Care publications and literature; this requires liaising with relevant practitioners such as oncologists and nurses to ensure they agree on the content.
Campaigning and instigating policy changes is a particularly important aspect of the work of Breast Cancer Care, and Ms Priestley believes the organisation makes a great deal of difference in this respect. Changes to the rules on data collection, which will come into effect in April 2018, are an example of this. Support for people living with incurable breast cancer is often inadequate and data on the numbers of people living with the disease are not being consistently collected. This makes it difficult for healthcare providers to plan services to meet their needs. The changes, which follow Breast Cancer Care’s ‘who’s counting’ campaign, will make it much easier for hospitals in England to submit data on secondary breast cancer. This will help give a more complete picture of the number of the people living with the disease: a key step towards improving care.
‘Secondary. Not second rate’ Campaign
This influence was demonstrated further by the ‘Secondary. Not second rate’ campaign document ‘Manifesto for Change’, a call for action on secondary breast cancer, which was presented to members of parliament on 11th October 2017. Outlining the lack of awareness, and insufficient support and care for patients with the condition, the manifesto makes four calls for action:
- EVERY breast cancer patient and all relevant healthcare professionals to be aware of the possible signs and symptoms of secondary breast cancer
- EVERY patient to be fully supported from diagnosis through treatment and as they approach end of life
- EVERY person diagnosed with secondary breast cancer to have access to a specialist nurse with the right skills, knowledge, and experience
- EVERY Hospital Trust and Health Board to collect data on their patients with secondary breast cancer and for this data to be published nationally.
“The vision of ours is that we want everybody living with incurable secondary breast cancer to receive the care and support they need,” explained Ms Priestley. “A lot of people with that diagnosis receive care which is really quite inferior; if they’ve had primary breast cancer they will see that comparison [where] they get a nurse specialist, that there are targets to be met and trusts are penalised financially if they are not meeting those targets. There’s nothing like that for secondary breast cancer.”
She continued: “It is unacceptable that there is this huge disparity between primary and secondary breast cancer and the amount of care and treatment that people get, but it shouldn’t be inevitable and our drive is to change that.” In relation to Point 4 of the call to action, Ms Priestley added that while it has been mandatory for NHS Trusts to collect data on secondary breast cancer patients since 2013, this hasn’t been achieved in practice.
The event in Parliament was a great success, with a significant number of MPs in attendance, many of whom were unaware of the scale of the issues related to this condition. The event included a very moving speech by a patient representative called Emma Cairns, which captivated the audience. This campaign, and the presence of the policy and campaigns team at political events, along with the assistance of MPs already very supportive of the issue such as Craig Tracey, Sharon Hodgson, and Philippa Whitford has helped forge good relationships with a wider spectrum of politicians. This will help ensure that the issue remains on the political agenda, according to Ms Priestley.
‘Not Just a Lump’
Another important aspect of this year’s Breast Cancer Awareness Month was the ‘Not Just a Lump’ campaign initiated by Breast Cancer Care, which included a video by television presenter Emma Willis. The overarching message of this initiative was that women often do not recognise and report any symptoms of breast cancer other than lumps, such as change in skin texture like puckering or dimpling. Even in regard to checking lumps, only certain sizes of lumps are seen as worth reporting by many individuals. “People think ‘oh it’s a pea-shaped, or rice-shaped or whatever and that it actually doesn’t matter; if there is a lump, or even if there is any change that is different to a woman, or a man, then that is what they need to be reporting,” said Ms Priestley. Ensuring early diagnosis of breast cancer is essential to improving the chances of survival.
Co-ordinated Approach to Care
A fundamental aspect of improving care in secondary breast cancer is ensuring that there is a joined-up nationwide approach. In particular, this involves the sharing of best practices: finding methods that work well in certain institutions and encouraging their implementation across the UK. This is work that Breast Cancer Care is heavily involved in. “One of the team is gathering examples of best practice from around the UK and abroad,” explained Ms Priestley. “And [this includes] talking to patients as well and saying have you got an example of good practice that your team did for you? Something like when you had to ring your breast care nurse at the point where you got persistent back ache, were breathless, feeling sick, or you got pain in your ribs and they said: ‘right we’ll get you into a clinic, you don’t need to go to your GP’, and that’s how you were diagnosed.”
Ms Priestley also mentioned that there would be events set up around the country to enable healthcare professionals to hear about and discuss these good practices. Ms Priestley added: “It’s about sharing what we know is good rather than waving at people when we know things are bad, and trying to motivate people to just make small changes; not redesign the whole of their service, but make some changes that will help drives things forward and improve care for these people.”
Change to Metastatic?
Ms Priestley also informed us about some interesting discussions that have been taking place about the term ‘secondary breast cancer’, widely used in the UK but not in the rest of Europe. At the recent Advanced Breast Cancer Conference, in Lisbon, Portugal, which she attended, it was clear that there was a preference for the term ‘metastatic’ rather than ‘secondary’ breast cancer. Ultimately, however, no matter what the condition is called, there is little doubt that secondary breast cancer requires greater attention amongst policy makers and healthcare providers. From talking to the passionate Ms Priestley, it is clear that a lot of work is already being undertaken in this direction.
Breast Cancer Care Resources and Further Reading
For care, support and information from day one, call Breast Cancer Care free on 0808 800 6000 or visit www.breastcancercare.org.uk.
Breast Cancer Care is calling for everyone living with incurable secondary breast cancer to get the care and support they need. To join and show your support, visit www.breastcancercare.org.uk/secondary.
The secondary breast cancer Manifesto for Change can be viewed here and if you’re interested in our information and support for people living with secondary breast cancer it’s here.
For the full transcript of the speech Ms Emma Cairns gave in Parliament, please see her Facebook page here: https://www.facebook.com/emma.cairns.5686/posts/10155085893116309