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The importance of lived experience in systems change

“This was the first time I had been sat around a table where my opinion was just as valued as paid staff members”
By Sheila Blatchford, Experts by Experience Network Member

I was recently invited to speak at the Homeless Link ‘Everyone in for good’ conference to share how Fulfilling Lives Newcastle Gateshead and the Experts by Experience Network approach system change and co-production and the importance of involving the voice of lived experience.  Here’s a round-up of some of the things I touched on in my presentation.

Embedding the voice of lived experience in any systems change activity, asking for their input, gives people a sense of involvement and ownership over changes but also enables people to spread the word to their peers who may not be aware that “service users” are listened to and not just heard.

Fulfilling Lives Newcastle Gateshead have managed to embed this practice into the way they develop ideas, training, and opportunities.  As members of the Experts by Experience (EBE) Network, we have been involved with numerous opportunities to spread the word about co-production and letting the voice of lived experience be at the heart of everything being done, by some small and some big name organisations.

I want to tell you about a few of these today.

Starting close to home, at Fulfilling Lives Newcastle Gateshead, the EBE Network meets up every week to discuss opportunities and events we are being asked to attend, present, or facilitate.  We were approached about creating a training programme for co- production.  This was met with agreement and it was decided that we would have separate meetings for the development of this training.

At the meetings we sat around a table, we being staff and experts.  This was the first time I had been sat around a table where my opinion was just as valued as paid staff members.

So, together we discussed and created what is now the Fulfilling Lives co-production training offer which is always co-delivered by a staff member and an Expert by Experience and to date we have co-facilitated more than six sessions.  We have also spent much of the lockdown period converting it to an online offer, again experts and staff working together, to ensure people could still benefit from the training.

Moving a little further away but staying on the subject of co-production, we have worked in partnership with the DWP demonstrating pioneering practice by undertaking the following co-production activities:

  • Drug and alcohol training – challenging potential stigma with DWP staff
  • Case conference work with complex needs clients
  • Peer drop-in sessions at a local JobCentrePlus to support both staff and customers
  • Shared live case studies of complex needs via our human library
  • Delivered co-production training in one JobCentrePlus office.

The main aim of our input is to try and shift the phrase “complex needs” as it doesn’t have to be “complex”.

Nationally, we have our National Expert Citizens Group.  This is where we link in with Expert groups around the country and discuss, raise awareness and research issues that affect people with multiple and complex needs.  For example, Public Health England (PHE) attended our August meeting in Bristol in 2019. They presented an audit tool which Fulfilling Lives areas can use to think about their strategic/system wide approach to preventing drugs-related deaths. Experts by Experience were invited to think about how this tool could be used.

PHE also attended our meeting in Manchester on March 12th this year and heard EBE feedback aiming to influence PHE’s Drug and Alcohol Team’s Business Plan.  From this came the push that Experts should be involved in the second stage of the Dame Carol Black Review on Drug Prevention and Treatment and saw her attending our last NECG in Sept 2020.

Our Experts by Experience Network is always welcoming new members with lived experience and available to help local organisations explore co-production.  We’d love to hear from you – visit Experts by Experience to find out more about working with us.