Our commitment to include the voice of people with lived experience

In her latest blog, Kate Terroni, Chief Inspector of Adult Social Care talks about our commitment to include the voices of people with lived experience when speaking publicly

I have the privilege of regularly being invited to conferences and events to talk about adult social care and CQC’s work in the sector, but too often the voice of lived experience isn’t part of the conversation.

Anna Severwright, one of the co-convenors of Social Care Future, describes this as ‘like holding a conference on gender equality without inviting women’. This is why, a year ago, I decided that I would make a public pledge, instigated by the great work of Social Care Future to grow a movement of people with a shared commitment to bring about major positive change in social care. I said that if I am asked to speak at a conference or contribute to another kind of public debate about social care, I will request that, where possible, organisers include contribution from people who use services, their loved ones and carers.

When someone takes the time to share their story with me, I find their insights absolutely invaluable and am instantly reminded again of why; I work in adult social care. I passionately want people to experience great care because I know that outstanding social care supports people to live the lives they want to live.

Making my pledge was a way in which I can use the platforms I’m offered to create more space for people to tell their stories. I always take something from this personally — I might be more informed, moved, motivated, or all three. It is so important because when I share the stage, or join debates about quality, policy, or guidance, being able to hear a person’s first-hand experience roots that conversation and keeps it focused on real experiences, for me and for the people in the room. It stops us getting caught up in the things that are less important. It creates powerful opportunities for all of us working in health and care to listen, reflect and consider the actions we need to take.

I have spoken alongside those with lived experience at major events since summer 2021. In March, I welcomed Glenice online to speak with me at the Adult Social Care Forum, where she talked about her adult children’s experience of services for autistic people. Then last week I spoke at the Health Plus Care event in London. One of our experts by experience — Julia — joined me on stage for a session on the future of adult social care. Julia talked about her experience as a carer for her father. After the event Julia shared with me that she had really enjoyed participating and being able to talk about her dad with the audience. What I took from Julia’s fabulous contribution was the ongoing reminder about needing to get the basics right when it comes to high quality person centred care and that it is so critical to really get to know the person who is being supported and what matters to them.

Listening to people’s stories, and making the voice of people’s lived experience heard, is central to the decisions we make as a regulator and is something I will always champion. Whilst I have made a point to decline invitations where the organisers have not been able to accommodate what we need to fulfil the pledge, for example accessibility needs of speakers, other event organisers have taken positive steps to involve people with lived experience in the design and delivery of their events. We’ve got creative, with guest speakers joining online or in pre-recorded videos.

We, or those running events, may not get it right every time, but I believe that this pledge has helped to raise the importance of including people with lived experience into all conversations about how people should be cared for, and that is why today I’m renewing that pledge. I hope that, over time, including people with personal experience of care will become established as the norm for all conferences, debates and events across the social care sector. Recently I’ve been speaking with social care leaders Kathryn Smith, CEO at the Social Care Institute for Excellence, and Oonagh Smyth, CEO at Skills for Care, about the changes we’ve made and the progress we still want to see, and look forward to reading more about it in their upcoming blogs. I would also love to hear how you are doing with your own pledges to empower the voices of people in your work.

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