Your user group should be represented on relevant decision-making and advisory bodies in your organisation or on the project you want it to influence. If you have already ‘mapped’ the decision-making structures within the organisation, you only need to agree with the ‘owners’ of that meeting or group that they can attend. If not, you might need to do that first.
When recruiting representatives for decision-making groups, you need to explain what is involved, so a realistic role description will help. Read an Example role description for a user group representative on a network board (PDF) 129KB, from NHS Hammersmith and Fulham.
The big issue is about the power base – it’s about being prepared to be challenged and letting go of some of that power. If it hasn’t happened before, it can be a difficult lesson to learn.
Adrian Mayers, NHS Hammersmith & Fulham Head of Long Term Conditions Commissioning
The user reps were able to ask the questions that the health professionals felt they were unable to - from a job protection point of view in the current climate in the NHS. So we asked a lot of probing questions.
Brian Cranny, North Mersey diabetes user group
We spent a session with the user group doing that preparatory work…We didn’t do that as well with the network board because the network has been in place for nearly ten years and has a clear work plan…we didn’t do enough work around how will you link with the user group and how are we going to make sure that works effectively. If we did it again we’d do more ground work with them (the Network Board).
Carol Cottingham, NHS Lincolnshire Head of Long Term Conditions
You should aim to have several representatives from the user group join the decision-making body or bodies. These representatives will have an important role in communicating between the organisation and the user group.
The users need to be very clear about what they cannot comment on, what is beyond their experience and where appropriate make sure they do go out to speak to other parts of the community… they must be clear to the professionals that they are not just going to tick the box for them...
Corinne McCrum, Diabetes UK Project Manager
It is helpful for communication to work two-ways to enable the diversity of users’ views feed into the decision-making processes and for the decisions to be communicated back out and understood by the community.
It affects the dynamic in our group having a patient in the room… it’s like you’re talking about real people when you’ve got a person with diabetes sat next to you. Now I notice that, it does affect the way in which people make contributions.
Adrian Mayers, NHS Hammersmith & Fulham Head of Long Term Conditions Commissioning
Some important elements to consider in supporting representatives to fulfil this role effectively are outlined in the Guide to supporting representatives on decision-making groups (PDF) 89KB.
It is also valuable to have user representatives on all key working groups where they are able to contribute. For example, on structured education task and finish groups.
Advisory groups
It can be helpful to have user representatives on advisory or working groups where they are able to contribute. For example, on structured education task and finish groups.
It’s about mixing with GPs, mixing with nurses, podiatrists and actually changing and influencing how they deliver services… this at least gives us an opportunity to challenge that, to say as a person suffering from this disease well hang on a minute I really want this to happen…
NHS Lincolnshire diabetes user group member
Service users are now represented on a wide range of Network workstreams and are now getting involved in the redesign of the foot care pathway, the Board, the QIPP steering group and all three local PCT implementation teams and they feel their voices are being heard in all these places.
Jacqueline Rooney, North Mersey Diabetes Network Manager