Monday 22nd September 2014
Mac Voice, the magazine for Macmillan professionals: Autumn 2014
Macmillan Excellence Award Winner, Ben Heyworth, on involving people who have or have had cancer in survivorship projects
I really wanted the people with experience of cancer to be at the heart of our survivorship work at The Christie NHS Foundation Trust. Their voice is one of the most powerful tools available to a project team, especially when trying to influence the decision-making process at a high level within the trust. To this end, it was essential that we harnessed their knowledge and experiences.
We now have a Patient Reference Group (pictured above, with me on the left). The group produced our ‘with and beyond’ survivorship website which clearly demonstrates the value of involving service users. It is a fantastic resource for people with cancer, featuring contributions from a large number of individuals who have participated in films, or offered their thoughts on life after cancer as written testimonials.
The Patient Reference Group meets at a local sports club as needed. Although the group is facilitated by Macmillan professionals, it is chaired by people with experience of cancer, and members also take on the position of treasurer and vice-chair. It was clear from the outset that this group was going to be about co-creation, not just consultation. It is not a support group in the traditional sense - we described it as 'a doing group'.
The Life Ahead care plan
In 2013/14, in conjunction with the survivorship team, the Patient Reference Group designed our new Life Ahead care plan. The plan is designed for all adult patients. It promotes self-management by prompting people to consider various aspects of their life after cancer. The plan has so far been very well received.
The Patient Reference Group has also supported our events and outreach activities. They are currently working on an evaluation of a new role we are piloting at The Christie – the Late Effects Coordinator.
The group constantly welcomes new members, and often welcomes professional guests from around the city who are able to explore aspects of their work with members. They are only too happy to offer their opinions.
I’m incredibly proud of the commitment and energy displayed by this group and long may it continue to support our ongoing efforts.
My role at The Christie
Working at The Christie is incredibly rewarding. I was initially recruited to manage a Macmillan-funded project, which involved piloting a new clinical pathway for people with bowel problems after treatment for pelvic cancer. But it didn’t take long for the survivorship agenda to grow. We currently have an expanded strategy that aims to improve services for all our patients, regardless of cancer type.
Macmillan Survivorship Network Manager consultation.
The Christie NHS Trust