CPPG Patient Chair
I was diagnosed with kidney cancer in 2018 not long after having my youngest daughter. It was such an unexpected experience, and so unlike anything my peers were going through, that I felt really lost. Getting involved in volunteer work has given me an opportunity to use my experience to improve things for patients who come after me. But it’s also been such a joy to work with the patients and staff passionate about making things better.
I joined the Committee in 2019 and then was elected chair in early March 2020, right at the start of the pandemic. It felt like everything would stop, and I didn’t know what, if anything, I could possibly do to help. Then I looked around me and I saw volunteers and professionals equally confronted, throwing themselves into work. I’m really proud now of the work we did as a team to try and address and adapt to new challenges patients were facing.
My core motivation is identifying and removing barriers to accessing healthcare. Cancer patients are in the unique position to identify the barriers to their own treatment and come up with impactful solutions. As CPPG members, we work with clinicians to consult on and co-create cancer service policy, strategy, patient comms, clinician guidelines and co-design patient pathways. During the pandemic for example this included rapidly reflecting on how changes would affect patients, consulting with clinicians and producing patient and clinician focused optimal communication guides.
I’m keen to expand patient involvement in the CPPG. During my cancer pathway I often felt like I had to advocate for myself. This was mostly things that were easy for me, like chasing up appointments, or asking to be referred to the hospital. Cancer patients are in the unique position to identify the barriers to their own treatment, but it can be difficult to see where their own advantages improved it. It’s so important to me to make sure we are creating flexible opportunities for everyone to meaningfully engage with this work.
Everyone should have an opportunity to shape the service that serves them. It’s such a life affirming way for patients to use our experiences to make things better for those who come next. If you’re interested in getting involved or are curious about our work, please do reach out.