Giving our cancer patients a Voice – patient user group case study
Voice is the St George’s cancer patient user group set up to represent the views of patients and help to improve the patient experience.
Since launching at the Trust, over 10 years ago, Voice has been able to act as an invaluable channel of communications between patients and staff for hundreds of its members.
Macmillan Cancer Support funded a major Patient Partner Initiative to develop several services at St George’s and the Voice group was heavily involved with their development.
These services included the innovative Get Set 4 Surgery, which provides mental and physical support for patients before major cancer surgery, the new Cancer Support Worker posts and the Acute Ambulatory Service for Cancer patients.
Sue Fox is the current Chair of Voice and has seen how the group has developed and improved over the years. The major achievement of the last year has been the launch of CanChat, a confidential telephone support service for Cancer patients, carers and families, given by specially trained volunteers, who have all had Cancer themselves.
She told us: “We have over a hundred members over the years, but the organisation is done by a core group who meet monthly to discuss the issues affecting patients and plan activities to try to improve services.
“And we are fortunate that Janice Minter, the Trust’s Lead Cancer Nurse, is a member of our core group. Janice joins our meetings and is a great person for us to engage with on our work and update us on the position and strategy of the Trust.”
Voice communicates regularly via email with its members but Sue stressed the importance of their face-to-face events held at St George’s.
“It’d be easy for us to send out surveys over email, but holding events for our members works really well. We invite along interesting speakers and typically get between 40-60 people attending each event.
“We are able to gather invaluable feedback, and our members appreciate the chance to socialise and share experiences with fellow patients. People liked to be asked what went well and what could be better, and we’re always hoping to hear those “golden nuggets” of ideas for how we can improve things.”
If you’re interested in finding more about setting up a patient user group, download the toolkit created by the Trust’s Patient Partnership and Engagement Group.
Sue’s top tips for patients looking to set up a user group
- Find out the best way to communicate with members – email communication is convenient for everyone but arranging events once or twice a year provides much more meaningful engagement
- Build good relationships with members of staff – they appreciate knowing they have the ear of their patients’, and you benefit from having a friendly person who will help your group whenever they can
- Don’t expect members or patients to engage with everything you do. They might prefer to be passive participants, content with just receiving email updates, but the important thing is that they know you are there in case they decide to get more involved with the group.