Carolyn Morris

I was treated for cancer in 1999 & 2009. I had a 3cm lobular breast tumour with 12 lymph nodes involved , treated with chemotherapy, mastectomy & radiotherapy followed by Tamoxifen & later Arimidex. I had a recurrence at end of 2008 and am now being treated with Exemestane.

My original involvements began locally, via Sussex Cancer Network's Partnership Group: saw a notice in a corridor when waiting for follow up appointment "Do you want to help improve cancer services...?", and nationally, when I found the UK Breast Cancer Coalition's website and was attracted to its patient-led advocacy approach to influencing services and research. I'd been much struck by the (then) figure of 1 in 11 of us who would develop breast cancer and wanted to know why prevention wasn't higher on anyone's agenda, and then by the people I met and the cracking training & events the Coalition ran. I had just become a Board member when we negotiated merger with Breakthrough; I was member of what became Breakthrough 's Campaigns and Advocacy Network & its steering group.

Sussex involvements include the Cancer Network's Research Management & Chemotherapy groups; have represented the partnership group also at the Divisional Board of the local acute trust where the cancer centre is & Network's Clinical Advisory group .
Elsewhere, I've been part of Cancer Peer Review, representing patient & carer interests on the National Steering Group, and (much more fun) out on reviews. Whatever its limitations, I do believe this process helps bring about change. And that it's done a lot for the patient voice. That involvement continues, others in the past are National Radiotherapy Advisory Group and Cancer Reform Strategy .
I've been an Expert witness for the NICE Technology Appraisals committee that looked at aromatase inhibitors, arguing for choice & flexibility for us; and am a member of the Board of the National Collaborating Centre for Cancer , i.e. the people who do the cancer work for NICE , producing the Guidelines & Guidances that shape cancer care in England.

My strongest research interests are in supportive care. I'm part of the Compass Research Collaborative whose focus is Supportive & Palliative Care.

My own background is as a psychologist, with a smidgin of anthropology ; working as both a careers and counselling psychologist , on 60's Clydeside and then in a University . I took early retirement from my job as Director of the Career Development Unit at Sussex a few years ago. This working experience helps shape my approach to advocacy now: client centred, supporting individual choice and responsibility and processes that impede or support organisational change .

Have worked on some studies of User Involvement - latterly a Macmillan user-led research project which looked at the impact on individuals of being involved: to be launched at NCRI Conference 2009.

Life outside cancer - my family, our house in France, a lot of books.