Advanced breast cancer is widely misunderstood by the public and people affected by it often feel isolated and unsupported. This was the loud and clear message from the ABC2 international conference in Lisbon.
Patient advocacy at the Advanced Breast Cancer 2 (ABC2) International Consensus Conference
Advanced breast cancer is widely misunderstood by the public and people affected by it often feel isolated and unsupported. This was the loud and clear message from the ABC2 international conference last week in Lisbon.
The conference used the term ‘advanced’ to describe breast cancer that has spread to another part of the body (also known as secondary or metastatic breast cancer) and to talk about locally advanced inoperable breast cancer. For more information see our Glossary.
I work in the Policy and Campaigns team at Breast Cancer Care and I was at the conference along with colleagues Jackie Harris Clinical Nurse Specialist (Family History and Breast Health) and Tara Beaumont Clinical Nurse Specialist (Secondary Breast Cancer).
Our places at the conference accommodation and travel were sponsored by corporate partners.
What did we do?
Tara presented a poster about patients’ views on palliative care and the important role of palliative care in the management of advanced breast cancer. I was invited to speak about our ongoing Spotlight on Secondary Breast Cancer campaign at a meeting for patient advocates.
I told the audience about the essential input into our campaigning work by people affected by advanced breast cancer. They heard how we held regular meetings with our User Advisory Group (all women living with advanced breast cancer) and surveyed by email or post the 61 women who made up our Secondary Breast Cancer Reference Panel in order to decide priorities for our campaign and to make recommendations to improve standards of care.
We also now draw on the rich evidence in Elizabeth Reed’s research study into the experiences of people living with metastatic breast cancer (in collaboration with Southampton University and funded by Breast Cancer Campaign). We continue to work with our Breast Cancer Voices to take the campaign forward.
I shared information about our specialist information and support services for people affected by advanced breast cancer.
Our campaigning
I also talked about how we led the successful campaign for the collection of metastatic breast cancer data in England – because of our influencing work incidence figures are now being collected which will allow better planning of services.
We’ve produced a nursing toolkit and provide support for breast units wanting to set up a dedicated service for advanced breast cancer patients – when we started campaigning in 2006 we knew of only five secondary breast care nurses in the UK now we know of 32.
We’ve successfully influenced for commitments to the care of advanced breast cancer patients in national policy documents and guidance. The Spotlight campaign’s work continues:
- we are calling for metastatic breast cancer data to be also collected in Wales and Scotland
- we want to increase access to breast care nurses for those living with advanced breast cancer
- we’ve set up a Secondary Breast Cancer Nurses Forum
- we’re working hard to turn national policy commitments into consistent healthcare practice.
Who else was there?
Patient advocates clinicians and researchers from around the world came together in Lisbon to discuss treatment care and campaigning for change. Some patient advocates were speaking from direct experience of advanced breast cancer and some were talking about the people with metastatic breast cancer they represent.
There was an ABC2 Breast Cancer Patient Advocacy Committee with representation from METAvivor Research and Support (USA) Europa Donna (Europe-wide) AdvancedBC.org (USA) Metastatic Breast Cancer Network (USA) Australian Breast Cancer Network and Komen Foundation (USA).
The conference had participants from 71 different countries and despite our many differences in terms of diverse healthcare systems cultures and economic situations there were some common themes.
Common themes
Widely misunderstood
Advanced breast cancer is widely misunderstood as for example in our ‘what not to say’ infographic. People living with advanced breast cancer often report that friends and family do not understand the impact of diagnosis or that treatments are ongoing. They also say they feel underrepresented or not represented in cancer policy and cancer awareness projects. One speaker called people living with advanced breast cancer the ‘forgotten heroes’. Secondary/metastatic breast cancer cannot be cured – it is a life-limiting disease – although it can be treated sometimes for several years.
Data collection
Hardly anywhere in the world is the number of people diagnosed with advanced breast cancer collected – this is a massive barrier to effective planning of services. The message from patient advocates was: People living with advanced breast cancer count – so start counting us! Through our lobbying and policy work Breast Cancer Care has secured this data collection in England we’re working hard to get this data collected in Wales and Scotland too.
Key worker
Advanced breast cancer treatments are often complex and can have debilitating side effects. People living with advanced breast cancer need a key worker (in the UK this could be a specialist nurse) to co-ordinate their care navigating complex treatment plans offering specialist information and providing essential support with the emotional impact of diagnosis and living with secondary breast cancer.
Palliative and supportive care
Supportive care needs to be introduced soon after diagnosis to help manage physical and psychological symptoms and side effects of treatment
Guidelines
The conference also had an expert panel (including patients and patient advocates clinical experts leading researchers) who voted on ‘consensus guidelines’ on the treatment and care of advanced breast cancer – the experts have the challenge of producing international guidelines suitable for all including some countries where there’s no national clinical guidance in this area. You can read the guidance from the previous conference (ABC1) here – the revised guidance from ABC2 should be available early in 2014.
Inspiring
It was an inspiring and informative conference. I was pleased to see that patient advocacy was given a central role at the event and I know that patient advocates and campaigning organisations will continue to play a central role in improving the standards of treatment and care for those living with advanced breast cancer.
Join us
If you want to help shape our campaigns and services and help us advocate for improved standards of care join our Breast Cancer Voices.
Our services resources and campaigns
Secondary breast cancer services
Secondary breast cancer publications
Spotlight on Secondary Breast Cancer campaign
Secondary Breast Cancer Awareness Day 2013