Skip to content


Service users want to be heard. They want their experience and expertise to be taken seriously. They want to be involved in the systems affecting their daily lives, to influence decisions and play a part in the co-creation of new services and ways of working. They want to be a positive influence on the shape of these systems and services.

"Of course it’s a good thing, it’s influence, it gets change, it gives meaning, it’s a contributory relationship, and it’s not a recipient relationship. I would advise everyone to be a rep, be involved in a group of similar people"
(Research participant)

In a recent survey, 65 percent of respondents told us they struggled to find involvement opportunities. This difficulty was compounded by the Covid-19 pandemic: some groups and organisations reduced their work, others moved to video meetings and conference calls, limiting the kinds of involvement available. When involvement is meaningful, it can be inspiring.

"This was a good time, full of optimism and enthusiasm and it felt like we were pushing on an open door"
(Research participant)

People are motivated to take part in involvement for many different reasons, but most commonly people say they want to improve things for others.

"Partly it is me wanting to give something back, to thank the people who helped and supported me and to help make changes, and help with their professional development."
(Research participant)

When people develop an equal relationship with a service provider by working together and sharing their expertise it can be very impactful.

"If it could be all like it is now with my current social worker, whether that is a specialised service for Disabled people or general public services, where I am treated equally, my experience is valued, like an adult who understands my own needs, that would be amazing and fantastic."
(Research Participant)

Good involvement can have all sorts of positives for service users. It can encourage them to get further involved in their community and create paths for them to do so. It can even lead to voluntary or paid work.

"Feeling valued and useful is very uplifting and helps with our mental well-being. So many of us lost our jobs due to our health condition … many of us are isolated. Involvement activities, particularly when we get feedback on the difference we have made, are uplifting and important."
(Survey respondent)

It is also an undeniable positive for activity organisers. Proper involvement means that whatever organisers are working on – research, services, new institutions or organisations – can be shaped so that they better serve the service users. It means that they are no longer just designing for service users, but designing with service users.

"The enthusiasm of others takes you a long way, as you’re motivated by their enthusiasm."
(National User Group member)