As with all groups, it is easy for a user group to become stagnant if you do not regularly review and refresh it. Here are a few questions that you can ask to help you do this:
Is the involvement achieving what it intended to?
If not, why not? Ask the group members what they think they have achieved, how they feel it is going, what they think needs to change and what else they need to get involved in.
- Change can be slow in the NHS and group members need to know what is happening in response to their input - however long it takes.
- Users need to know what difference they are making to maintain their enthusiasm and motivate them to continue working in the group
- It can help to identify ways to improve the functioning of the group.
You can also speak to colleagues in the organisation about their perception of the group’s impact.
Christine Mead (NHS Hammersmith & Fulham Senior Public Health Manager) explains what the user involvement achieved.
Who is being heard and who is not?
It is helpful if the user group has strong communication links to other service users in their community, both to bring in diverse perspectives from different groups of users and to take messages out about the work of the organisation.
The group members cannot possibly represent all experiences. If you know that you do not have the right people in the group to ask about a particular issue, you can plan to engage them via other involvement mechanisms.
This can be through one-off engagement event or a new group linked to a specific project or work area. You may want to get in touch with an organisation that is engaged with the right people and ask for help.
At network level we are currently reviewing our footcare pathway. Members of my group are buddying with other service users who’ve had a recent amputation or who are going through that high risk clinical service, because we don’t have anyone on the group who’s been through that service recently, and they needed users who are in the system now… That empowers people in my group…
Jacqueline Rooney, North Mersey Diabetes Network Manager
We’re going to go and test our Personal Charter with different groups of people, so we’ve taken it to a group of interpreters to think about what needs to happen if people don’t speak English, we’re going to go to a group of people with mental health needs and diabetes and a group of people with learning disabilities…a LGBT group, various groups, a group of young people, a group of parents to discuss its use…before it’s finally designed.
Christine Mead, Local coordinator H&F
Are people staying motivated and involved?
Keeping people motivated is essential if your group is to continue to be useful. The Guide to keeping people motivated (PDF) 134KB outlines some of the factors that, in our experience, are most influential in keeping people motivated and involved.
As the work progresses there has to be feedback saying ‘OK this is where the organisation was when we started, but actually it’s completely changed and we’ve got X amount less budget’. So that transparency and honesty about where the organisation is, is important on an on-going basis…
Corinne McCrum, Diabetes UK Project Manager
Jacqueline Rooney (North Mersey Diabetes Network diabetes project manager) explains what keeps user group members motivated.
Christine Mead (NHS Hammersmith and Fulham community engagement team) explains what keeps users engaged.