Macmillan Lived Experience Programme review 2022

In 2022, our Macmillan Lived Experience Programme launched a peer evaluator project offering focus groups with people affected by cancer.

Throughout 2022, our Macmillan Cancer Support funded lived experience programme continued to engage and support people affected by cancer to influence the Scotland-wide Transforming Cancer Care (TCC) Programme.

Over 2022, we have supported four people affected by cancer who have been appointed as members of the national TCC Executive and Delivery Groups. We have facilitated pre-meets between them and Macmillan Cancer Support leads, supported their attendance at TCC meetings and other events, organised and facilitated ad-hoc meetings for them with key stakeholders, and offered individual and collective peer support.

We have also continued to work in partnership with the Macmillan Engagement Team in Scotland to support service user involvement and pro-active engagement with people affected by cancer throughout the design and development of Improving the Cancer Journey services, as an integral part of Macmillan’s national roll-out of ICJ services across Scotland.

In spring 2022, we concluded several months of engagement activity to support Scottish Government’s Cancer Prehabilitation Implementation Steering Group (CPISG) to engage with people affected by cancer to help inform design of cancer prehabilitation services across Scotland. We published our final report and recommendations, and shared the response we received from CPISG.

In summer 2022, the ALLIANCE sought views from our members to inform the development of the new cancer strategy for Scotland. We submitted and published our response to Scottish Government’s public consultation.

Our key achievement this year was the launch of our new peer evaluator project. So far, we have recruited, trained and supported two people affected by cancer who now volunteer with the ALLIANCE as cancer peer evaluators. Our peer evaluators co-design, co-deliver and help us analyse insights gathered from focus groups that help us better understand the needs of people affected by cancer who traditionally experience health inequalities, additional challenges or barriers when accessing cancer services.

Our peer evaluator’s focus to date has been to engage with people affected by cancer and sensory loss; and people affected by cancer from minority ethnic communities. The strength of this engagement model is the shared lived experience between our peer evaluators and focus group participants which helps create a supportive and psychologically safe environment for people to share their own lived experience of cancer.

Recruitment for additional peer evaluators is ongoing. We hope that additional peer evaluator roles will support future engagement in early 2023 with people affected by cancer from the Polish community in Scotland; and people impacted by cancer and/or rurality and deprivation living in Dumfries and Galloway to help inform design of the Dumfries and Galloway ICJ service.

In November 2022, we were proud to showcase our work to design our peer evaluator model, as well as our engagement activity to support the design of cancer prehabilitation services in Scotland, at the UK Macmillan Professionals Conference with two poster abstracts accepted for display at the event.

Our current programme funding ends March 2023. Discussions are ongoing with Macmillan Cancer Support around possible funding extension to December 2023.

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