The ALLIANCE Macmillan Transforming Cancer Care Lived Experience programme 2021 review

The Macmillan Transforming Cancer Care Lived Experience programme launched in 2021 and came to a close in December 2023.

Our Macmillan Transforming Cancer Care Lived Experience programme kicked off in April 2021.

In partnership with Macmillan Cancer Support, we agreed our joint aims and desired outcomes to be achieved by December 2023 and established our programme governance structures. We formalised our project plans and clarified that our role at the ALLIANCE was to ensure the voice of people affected by cancer remain central to decision making and service developments across all strands of Macmillan Cancer Support’s partnership with Scottish Government in the transformation cancer care across Scotland.

During our first nine months of operation, we recruited and supported four people affected by cancer to serve directly as members on the Transforming Cancer Care Executive Group and Delivery Group. We also worked closely with Scottish Government to deliver four focus groups in November and December. We engaged with 14 people affected by cancer to gather and report on their insights from their own experiences to inform national design and development of Cancer Prehabilitation services.

Work also progressed to agree engagement support for Improving the Cancer Journey (ICJ) services rolling out across Scotland through a partnership between Macmillan Cancer Support and NHS Board, Health and Social Care Partnerships and Local Authorities. Our priority had been to assure ICJ services have access to dedicated engagement support so that they could proactively involve people affected by cancer in their local ICJ service developments and decision making from. We worked in partnership with Macmillan Engagement Leads to achieve this through dedicated advice and support to establish flexible participation and engagement opportunities that ensured the voice of people affected by cancer was evident within ICJ governance, decision making, service design and continuous improvement.

A key priority for us during the latter part of 2021 was to refine our planned engagement methods to effectively include seldom heard communities. Research was undertaken to scope out what barriers exist for different communities, and recommendations were created to mitigate these barriers and to make sure our engagement methods were as inclusive as possible.

This resulted in exciting plans to embark on a new engagement project which saw focus groups co-delivered and co-facilitated by peers who themselves have a lived experience of cancer. These peers were a vital part of our programme. They not only co-facilitated focus groups, but co-produced our focus group questions, and supported the analysis of the findings. By working in partnership with community organisations representing seldom heard communities, as well as targeted promotion and communications, a diverse group of peer evaluators and focus group participants, with varied lived experiences of cancer, had the opportunity to become involved and shared their views on cancer care, as well as their needs. In this way we continued to ensure that those with a lived experience of cancer were at the heart of informing the transformation of cancer care in Scotland.

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