“I know there’s lots of stuff I’m supposed to do, phone numbers I should ring and it’s all so confusing, I’m ill! Why don’t people realise how hard this is!?” – Jayne.
Jayne was speaking to our Lived Experience Co-ordinator telling her what life was really like following her GP appointment.
Halfway through the forty-minute conversation she divulged that since her husband died everything had fallen apart for her. She’d been to her GP recently and came away with some pills and leaflets with telephone numbers to call to help with “her grief”. She hadn’t called. She hadn’t taken her medication; life didn’t seem worth it.
Listening to the reasons why people struggle with their health and ability to access NHS and community services is a privilege. You find out a lot about what’s going on where they live and the impact this has on their health.
“We used to have friends on the estate, they’ve all moved away though, we used to pop into each other’s houses with the kids, I miss it all.” – Jayne.
Understanding Jayne’s story helps us understand her health. It turns out her husband used to be the outgoing friendly one with the neighbours, making new friends, ringing up restaurants and organising life. Now he’s gone she trembles every time the phone rings.
What do we do when we hear eight more stories like Jayne’s, or twenty more? How do we turn these stories into really useful insight that inspires change?
We use a Lived Experience Framework to organise the stories of people like Jayne so system leaders in the NHS and community sector can learn important lessons. The Framework reflects two aspects of Jayne’s life, her individual health and wellbeing and her relational life – how much value she receives from her neighbourhood, her social circle and community.
The Framework builds on WSP’s ground-breaking research into Relational Value first developed in 2016 with the Leeds School of Healthcare at Leeds University. Our Relational Value product is blended with the NHS’ Five Ways to Wellbeing model so we can score and weight different aspects of Jayne’s story and turn it into insight.
The stories people tell are measured using the Framework so we’re able to see how connected people are or how much of a contribution they’re able to make to their community and how they perceive health services they use.
It might be that someone’s story shows us that they have individual strengths and even be relatively healthy but their connection to family and their feelings about their neighbourhood is so poor that they don’t feel safe. After all, what’s the point of being able to exercise if you won’t feel safe leaving your house? Or in Jayne’s case even though she can hear and see better than most people in her age group she still can’t bring herself to ring a helpline.
So far, we’ve used the Lived Experience Framework with the NHS in Gateshead, Healthwatch, a social prescribing organisation and in development work for Mental Health Trust. Clients tell us that the insight from real people makes our quantitative data modelling work come alive and helps them build the case to transform services. The mental health trust is using our insight to redesign rehabilitation services and the social prescribing organisation is using people’s stories to develop a community transport scheme.
Stories like Jayne’s can change lives.
To find out more detail on our Lived Experience Product and how it can help your organisation please contact nick.garrett@thewholesystem.co.uk