Is it you? Is it a group? Do you have time and the right skills? Could you share the responsibility with others?
They have to be a good leader, a person who knows the service providers and can introduce them to the group so they can listen to what we have to say. The local coordinator knows who’s who within the service – so without them, user involvement wouldn’t have an impact.
NHS Hammersmith & Fulham diabetes user group
The important thing is that someone takes responsibility for delivering the work. Most people who make involvement happen don’t have specialist skills or training. They have enthusiasm.
What I’ve seen is that the facilitators have been essential in enabling this great mix of people to come together and work cohesively as a team – and they have been able to draw from different individuals many important points that would have otherwise been missed.
NHS Hammersmith & Fulham diabetes user group
A word of caution: it is easy to underestimate the amount of time involved. Setting up and running a user group is a resource intensive process. All the sites found that it took more time than they expected to initially recruit group members. In North Mersey it took approximately three months from the planning stage to having a fully recruited group. During this time it took two to three days a week to focus on all the different aspects of recruitment.
Running a group includes planning and managing group meetings, follow-up activity around taking forward users’ ideas, for example carrying our further consultations. Depending on their availability and capacity, some of the user group members can carry out this work. However, a coordinator has an advantage in knowing how best ‘to play the system’, knowing where to take the ideas and who to speak to, in order to have an influence. This means that the coordinator has to have sufficient time and support, not only to run the group, but also to integrate the group’s ideas into the work of the organisation.
It has been pretty full on, because we had this service redesign group going at the same time and also because the user group were meeting monthly. It becomes relentless, you have a meeting then you do the minutes, then you prepare for the next meeting it just feels like there’s never any space and there’s also all the work that’s developing out of the group.
Christine Mead, NHS Hammersmith & Fulham Senior Public Health Manager
They also need to manage the practical arrangements to enable the group to function effectively. This includes organising meetings, choosing the location and venues, reimbursing expenses promptly and communicating with group members in a way that meets individuals’ needs, for example sending out papers in large print. This requires careful planning and means user involvement coordinators will benefit greatly from admin support.