Patient and Carer Advisory Board
All of our work is informed everyday by the experiences of people affected by pancreatic cancer. Patients and carers are represented on our Board of Trustees, our Scientific Advisory Board and within our staff team. And almost all of our supporters, whether they are fundraising, campaigning or volunteering with us, have a personal experience of pancreatic cancer. Our nurses are in touch with people who are affected by pancreatic cancer every day via our support service.
Our Patient and Carer Advisory Board is there to help us ensure that we don’t miss any important opportunities to involve people affected by pancreatic cancer in the work and strategic direction of the charity.
So far this Board have:
- helped us with our thinking about how we extend our services
- helped us improve our website
- helped us develop our patient charter
- provided insight for the development of our latest five year strategy.
The Board is not fixed by way of membership - but we aim to always maintain a core group of between 8-10 patients and carers.
Meet the Patient and Carer Advisory Board
What our board members say
"I am delighted to be accepted as a member of the patient and carer board for Pancreatic Cancer UK. As one of the fortunate few survivors of pancreatic cancer, I feel motivated and passionate about sharing my experience and representing other patients to ensure that their voices are heard. Pancreatic Cancer UK provides such a valuable service and I look forward to supporting the Pancreatic Cancer UK agenda as part of the team."
"Being one of the fortunate few 'survivors' of pancreatic cancer I am passionate about offering support to fellow patients and carers . I had the whipples operation but was unfortunate enough to have my whole pancreas removed and really felt I needed to talk to (and still do) to someone in the same situation as myself which is proving impossible to do. However I am very lucky and really want to help anyone going through this so they do not feel so alone."
"After a delayed diagnosis of my pancreatic cancer I wish to help Pancreatic Cancer UK raise awareness of the symptoms to ensure less people are diagnosed too late. I wish there had been the support available now from Pancreatic Cancer UK when we needed it, as they help so many patients, relatives and carers.The Newly Diagnosed Packs available at some hospitals at their first visit are invaluable. The support I have received from other patients who I have got to know has helped me a great deal."
"I am passionate about the subject of pancreatic cancer after being diagnosed inoperable in December 2012. It became apparent very quickly that there was no single source of reliable experience-based information for patients and carers on the subject, which made the early days really difficult to cope with through simple ignorance. I now have the 'luxury' of still doing well 20 months after diagnosis and have during this time learned that I was wrong: there is so much really solid information out there based on experiences of all touched by this illness, we just need to pull it all together and present it to those who are new to this awful thing - we can influence this!"
We are extremely grateful to the people who support us as members of this advisory board with their insight and expertise: