Volunteers who also share their lived experience: Karen's story

As always, we love to put the spotlight on inspiring volunteers who are making a huge difference. From time to time, those who have lived experience of pancreatic cancer may bring this experience to support us with other activities at Pancreatic Cancer UK.  Some may have or have had a diagnosis themselves, have a loved one living with  the disease, or have lost someone to the disease). And here’s one example of how a volunteer, Karen (pictured above), shared her lived experience to help improve health services locally. 

On Friday 9th May, our Policy and Campaigns team presented our Policy Programme of work at the North East and Yorkshire network meeting. This included the Optimal Care Pathway aimed at understanding the obstacles people face, and what needs to happen to improve diagnosis, treatment and care of pancreatic  cancer.  

The event shared exciting work taking place by the network to improve local pancreatic cancer services. The meeting included a range of experts across the region from health professionals to cancer alliance programme managers, and the network group were also keen to bring in lived experience voices into the discussion. 

On the day, volunteer Karen joined Alice and Ellie (pictured below) from our Policy and Campaigns team. Karen has previously got involved with Pancreatic Cancer UK in a number of ways, including in her role as a Local Volunteer.

This involves raising the profile of Pancreatic Cancer UK and awareness of pancreatic cancer in her local community. During this event, Karen took part in a range of different discussions. This included; patient experience surveys, psychosocial support, multi-disciplinary meetings and Pancreatic enzyme replacement therapy (PERT) shortages. 

Karen offered valuable insight into a patient’s perspective on the Optimal Care Pathway. There was space for her to give her input about her previous experience as a patient. Health professionals and cancer alliances really valued the feedback and input for upcoming projects. On her experience, Karen says “it was a great event, happy to have been involved as a patient and share my views.”. 

Karen’s story is a powerful example of how we make more noise and listen to people affected by pancreatic cancer. If what we’re doing affects the lives of people affected by pancreatic cancer, we can’t do it effectively unless we involve those people.   If you would like to hear about opportunities of how you can draw on your experience to influence our work, please complete this short form and select participation opportunities. 

We’re aware there’ll be many of you who can relate to Karen’s story, whether you’ve been affected by pancreatic cancer directly or you know someone who has. Please do reach out to our support services if you ever need it.