Valuing Lived Experience in Health and Social Care

Written by: Donna, Self Management Volunteer, The ALLIANCE

Published: 11/09/2017

Hands holding jigsaw pieces

If we want to help people to improve their quality of life we need to start listening to peoples stories about what has helped them the most

Last week I pushed myself to take another step on my road to recovery and spoke at a NHS event “Intelligence into Action: The Key to Improving Outcomes”.  I decided to name my talk “Lived Experience – The Vital Ingredient for Improving Outcomes”.

“Better Data, Better Lives” was the tagline for the event.  I was asked to share my experience of my journey of recovery and the many things that have and continue to contribute to it based upon a post I shared on Care Opinion which you can read here (this link will take you away from our website).

The message behind my talk was very simple.  If we want to improve outcomes and ultimately help people to improve their quality of life, we need to start listening to peoples stories about what has helped them the most.  Narratives of peoples journeys are powerful and we can learn so much from them if we take the time to listen.

I also spoke about involving people with lived experience in service design and delivery.  But its important that this is done in a way that truly values and respects this input.  True co-production (this link will take you away from our website). is very different from consultation.  Peer support and people sharing their owe experiences have played a massive role in my own journey, that ability to connect with someone else who has walked a road similar to mine.  Unfortunately here in Scotland we are somewhat dragging our feet when it comes to truly valuing the lived experience of people.  Many third sector/voluntary organisations are investing in lived experience by employing peer support workers, but sadly the NHS does not appear top be following suit.  Formal peer support can range from peer volunteers (who are trained and supported to offer peer support), to paid peer workers.

Here in Scotland Penumbra (this link will take you away from our website) and SAMH (this link will take you away from our website) are two organisations that employ peer workers.  Scottish Recovery Network (this link will take you away from our website) champion peer support here in Scotland and have many resources to help organisations introduce and embed peer support into their organisations.  In England a study of Together’s peer support in Hampshire has revealed that every pound spent on it yields a social return worth £4.94. You can read the report here (this link will take you away from our website).

At the event I shared an experience that I had with a health professional that I challenged about some incorrect and biased information that was given to me.  When I expressed my concerns, opinion and knowledge I was asked and I quote “are you medically trained?”

Here is my point – it has absolutely no relevance if I am medically trained or not. I have been living with my long term health conditions day in and day out and have been doing so for many years. I also happen to be someone that I would deem to be well educated both academically and more importantly in valuable life experience.

This is the best way I can think to compare it to try and get medically trained staff to start to LISTEN to their patients living with long term conditions:

Before I had children I worked in early education, I spent all my days working with children. I thought I knew all there was to know about children. I read more books than I care to remember whilst I was pregnant with my own children. I considered myself to be an EXPERT when it came to children. BUT – and it’s a big BUT………when I had my own children I suddenly realised no amount of education, experience or books could have prepared me for the real life experience of actually living with children 24/7. Do you see what I mean?

Its time for experts by occupation to start working with experts by experience – and both equally valuing the importance of the other.  Could peer support be the missing link?  Will we see it happen in the NHS soon?


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