Our Policy and Campaigns team has been hard at work talking about our Spotlight on Secondary Breast Cancer campaign.
Our Policy and Campaigns team has been hard at work talking about our Spotlight on Secondary Breast Cancer campaign.
This month we spoke about issues surrounding secondary breast cancer to the All Party Parliamentary Group on Breast Cancer (APPGBC) and at a conference for healthcare professionals and patient groups in Brussels.
Appearance versus reality
At an APPGBC meeting on secondary breast cancer former Breast Cancer Care researcher Dr Liz Reed presented her PHD work on the experiences of women with secondary breast cancer. The research was done while she was with us.
Many of the women Liz interviewed with secondary breast cancer described how they appear to have a normal life working, caring for family, and looking very well. In fact however they are often feeling unwell coping with extreme tiredness, pain, side effects of ongoing treatment and uncertainty.
This mismatch of appearances and reality leads to a lack of understanding of how debilitating secondary breast cancer can be for family, friends, colleagues and health professionals.
Campaign achievements
Our Policy and Campaigns Manager Dora Wheeler then spoke about the successes and challenges of the Spotlight on Secondary Breast Cancer campaign.
Dora reminded us that the campaign was led by a taskforce of women with secondary breast cancer and by healthcare professionals.
It has had some significant successes such as ensuring secondary cancer data collection is now mandatory in England. The number of specialist secondary breast care nurses is also increasing.
Dora finished by explaining the services we run for people with secondary breast cancer as well as highlighting our healthcare professional training and toolkit.
Collaboration
The meeting also heard from charity Breakthrough Breast Cancer and two Clinical Nurse Specialists at St Bartholomew’s Hospital London about the pilot Secondary Breast Cancer Service Pledge. This is a partnership between Breast Cancer Care and Breakthrough Breast Cancer working with healthcare teams to improve patient experience.
Researcher Dr Andrew Reynolds from Breakthrough Breast Cancer research centre explained how he is looking into new ways of treating the disease.
Three members of our user involvement panel Breast Cancer Voices who have secondary breast cancer came to the meeting: we were joined by Elisabeth (pictured above left) Shani (centre) and Sally (right). They asked questions through the Chair Annette Brook MP and contributed to the debate bringing up concerns over access to drugs and lymphoedema services.