The Greater Manchester Cancer User Involvement programme (now Greater Manchester Cancer Voices Community) was launched in 2015. 

In 2022, we teamed up with an independent market research agency, Mustard, to help us to understand how we could further strengthen our work with people affected by cancer. Mustard spoke to members of the User Involvement programme, potential members (people affected by cancer in Greater Manchester who were not currently members of the programme) as well as a range of other stakeholders. A total of 206 people took part in a range of ways, from focus groups and one-to-one interviews to an online community and survey.

The evaluation of this was compiled into a report, ‘Your Voice’, which we released in October 2022. The report identified four main areas for us to build on the current strengths and make some improvements on our: Design, Delivery, Relationships and Communication.

Since the report was published, we have been working hard to fulfil the recommendations and released an update in June 2023 detailing our progress. This included the changes to our programme name, volunteer name, and mission statement. You can access the June 2023 update, and the Your Voice October 2022 report below: 

“I was involved in the process right from the beginning, and was consulted and kept up to date throughout. Following the first inception meeting we met weekly on Teams, and it was a truly coproduced process, all ideas and comments were talked through and considered. The work both teams did to engage, involve and take into account the views of the many people they reached in the time was just fantastic and amazing. From my perspective the result is a very thorough review, and a lot of insight and understanding about what patients think and want to happen. I was very pleased that I was involved in it, and missed our weekly meetings when they ended. And the result of this consultation, and the valuable insight that it gives us, is generic across alliances. I can use it, and I do, in my role of ensuring the patient voice is embedded in the work of my alliance.”

– Patient and Carer Representative Coproducer from external Cancer Alliance.

To summarise, our new name ‘Greater Manchester Cancer Voices Community’ uses public-friendly language and represents the diverse range of individuals and groups we work with. And we will also use ‘Patient and/or Carer Representative’ to consistently communicate the purpose of the role in a clear way to others, whilst remaining inclusive of both types of experiences.  

Above all, the most important thing about our community is the impact we make as a collective. As one of our survey respondents said: “What we say is probably more important than what we are called.”  

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