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What’s in it for me? – involvement benefits

14 October 2023

When yet another survey request pings into your inbox, do you immediately press delete? Do you pass by that poster in your GP surgery, asking for participants for their patient forum? Ever considered responding to a consultation, only to think twice?

What’s the point, right?

They’ll just take your time, your opinions, and carry on doing the same thing they always do. So why bother getting involved and sharing your valuable time and lived experience with a bunch of service providers who want you there as a tickbox Disabled person to fulfil their equality and diversity criteria?

If you’re experiencing “feedback fatigue”, it’s understandable. A lot of people feel like this, especially when the involvement opportunities they’ve taken part in haven’t been inclusive, or haven’t led to any meaningful change.

Involvement is where people who are in charge of services, like health care, housing, or social care, want to get your ideas and opinions, to improve the services they offer.

When involvement is done well, it’s a two-way street, with a lot you can potentially gain by taking part. Shaping Our Lives has talked to lots of people about their experiences of giving their opinions and sharing their lived experience. We’ve found a lot of positive elements and involvement benefits when it’s done well.

So what’s in it for you? Let’s talk about some of the involvement benefits, and share some of positive things people have told us. At the end of this blog you’ll find a handy infographic of the main points to download.

It can be empowering – to share your thoughts and ideas and help to shape services for the better

I wanted to empower and influence people and make sure that people are heard and able to make changes. That’s why I got involved.

Quote from Beyond the Usual Suspects

It can give you a real sense of making a positive difference

I know why I wanted to get involved [with social services] because I like to help people with learning disabilities to stand up for themselves and take control of their own lives.

Quote from Beyond the Usual Suspects

It can lead to new knowledge, new skills, and new opportunities, not to mention meeting new people

I love the group. I like to get involved with it because I love these people.

Quote from Beyond the Usual Suspects

Provides new activities and opportunities through increased confidence. For example, people said they had gained enough confidence to write articles, challenge decisions, attend regional/national conferences, do radio interviews

I’ve had several good experiences really, one of the first was making individual speeches in a conference and being satisfied that I done something useful, another was being elected onto a committee.

Quote from Beyond the Usual Suspects

It can lead to invitations to aspirational events, other consultations and involvement events. Taking part in involvement can be a pathway to new roles – both paid and voluntary, and is an opportunity to network and join user-led groups or voluntary sector organisations.

I’ve had so many good experiences, getting involved in the black user group, getting involved in a national service user organisation and attending some brilliant conferences. They took me to a place that I wasn’t at before, which is opening my understanding and opening my mind to different experiences and the way different people solve different problems, which is great.

Quote from Beyond the Usual Suspects

Hearing about other’s experiences can be helpful and informative

It was also extremely valuable to hear about everyone’s experiences, including experiences of social care or lived experience of various impairments.

Quote from a participant in a user-led research project

Being part of a team of Disabled researchers allowed me to further learn and benefit from being part of the Disabled community by sharing and learning from the experiences of other Disabled researchers. They helped me feel like my experiences are not isolated.

Quote from a participant in a user-led research project

Some people find that being involved benefits their health and wellbeing; helping them to get well and to manage their impairments and health conditions.

For me it was a start to getting back out into the world and a step on the journey to being well again.

Quote from Improving Understanding of Service User Involvement and Identity

There are lots of good reasons to get involved. We can’t promise that every involvement opportunity will be done well. But we do know that your voice, your opinions, your lived experience, are valuable, and there is many involvement benefits you could gain from sharing them.

Further reading and resources:

You can also download a text only document with the benefits of being involved in a quick reference bullet point list

If you’d like to find an involvement opportunity, please visit our involvement opportunities board.

We also have a free tool called the My Involvement Profile. It’s to help you record your support and access needs and your involvement interests, which you can share with organisers of activities. If you’d like a free copy please email

To download the full research reports mentioned in this blog, use the links below: