Jane Cronin, Macmillan User Involvement Manager, GM Cancer
The end is not always the End, or not as we know it!
What is user involvement?
It’s the active involvement of patients and carers in how cancer services are commissioned, delivered, and evaluated.
It’s the role that people affected by cancer can play in improving support and care for others. These individuals are experts about their own unique experience.
In Greater Manchester Cancer we use a Macmillan co-production model. Co-production is an equal and reciprocal relationship between a group of professionals and service users who have agreed to work in partnership to achieve a common goal.
In the end we dropped the End
When working on a document last year with service users, I really had my eyes opened to the different perspectives that clinicians and services users can have. It was providing information for the patient and their GP at the end of a particular cycle of treatment. The title of the document, “End of Treatment Summary” appeared positive to me. It conveyed the end of a particular regime and the patient had now completed this phase of their treatment. NOT SO! The service users thought that “End of Treatment” meant that there was no more treatment. “I felt despair”, “this is it, this is me, there is no more hope”, “there’s no more treatment left for me, I might as well go home and prepare to die”. Powerful stuff! Just one word “End” could mean different things to different people. In the end we dropped the “End” (excuse the pun) and just called them Treatment Summaries, lesson learnt…
What we think is the right way to do things for service users is not necessarily the way that they see things. It’s like those optical illusions where you can’t see the whole picture until someone explains their way of seeing it as well.
If user involvement is done right then it can be very powerful. It’s not a case of a patient sitting around a table as a token voice, it’s belonging at that table as an equal and having the right to challenge, influence and drive change.
The user involvement we have in our BREAST CANCER SERVICES across Greater Manchester & East Cheshire is fantastic. Hundreds of women have the opportunity to feed into the decisions about how breast cancer services are delivered through a system that allows those voices to be channelled and escalated.
We have 4 people affected by breast cancer that sit as Service User Representatives on the Breast Cancer Pathway Board representing the views of the wider breast cancer community throughout Greater Manchester and East Cheshire. They have been able to challenge and influence decisions to ensure that the issues facing breast cancer patients are taken into account and acted upon. Because service users are experts in their own cancer, they bring a rich depth of experience and expertise.
I really couldn’t image not having service users embedded in the heart of decision making now, it would be unthinkable.