Experts by Experience
To get involved in improving cancer services across the East of England you might like to consider joining our Patient Partnership Group. The group are all local people who have expereince of cancer, either their own cancer or through friends and family members. They meet in a virtual capacity once a month, with occocasional face to face meetings through the year. Patients and former patients listen to educational talks by various experts, give their views and experiences, and provide their perspective and expertise to help shape cancer services.
Patient experience is at the core of our work, it forms part of our key values and enables us to include the patient voice at the heart of cancer service improvement. Co-producing our improvements makes use of the knowledge and insight patients can offer, making them equal experts by experience. The patient perspective informs what we do and how we transform cancer services in the East of England.
Holly Master, co-chair of the Patient Partnership Group, talks about why she joined the PPG.
Ray Anderson, co-chair of the PPG, encourages other patients to get involved.
"I joined the Patient Partnership Group after I was diagnosed with bowel cancer at the age of 23 in 2021. In March 2022 I was involved in a project called ‘Radiation Reveal’, which brought radiation researchers and young cancer patients together to create a piece of work that would help clinicians understand our experiences. Through this I saw the power of the patient voice, and it inspired me to get involved in other projects. I specifically wanted to join the Patient Partnership Group to help stop the things that happened to me, from happening to other people. I am particularly interested in raising awareness of the needs of young people, and ensuring that these are always considered when shaping cancer care. If you are also passionate about making a difference, please get in touch about joining the PPG."
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"I joined the Patient Partnership Group when it was set up in 2017. I was treated for bowel cancer in 2010 first having surgery followed by six rounds of chemotherapy. The care I received was good but not everything went as well as I would have liked. This sparked my interest in volunteering in order to get as good an experience as possible for cancer patients.
"The Patient Partnership Group is made up of patients, carers and is supported by clinicians and other professional staff. We are on the lookout for more PPG members, particularly those with current or recent experience of cancer services so, if you are interested, please contact us through the Alliance website."
Expression of Interest in the Patient Partnership Group
If you are interested in getting involved in the Patient Partnership Group, more information about the group can be found in the doc linked below.
We welcome your interest and if you feel this may be appropriate for you please complete the application form provided. Your views and experience will be greatly appreciated.
I statements patient experience project
The idea for this project came from those actively involved in the delivery of the Alliance's Workforce Strategy, including patient representatives. The premise was that the outcome should be about much more than designing a workforce to deliver cancer services to meet present and future demand. This work was an opportunity to improve the patients’ experiences by gathering data from recent patients about what went well as they were on a cancer pathway, and also to collect statements which started with “I would have liked it if….” The PPG were involved in developing the model for this work. We felt that patient-led focus groups, or meetings as well as the survey were important to gather a range of different views. Some of our members received facilitation training, as we felt that any focus groups should be patient led. Click on the link below to read the full report.
Ray Anderson, Co-Chair PPG