A Thought Piece by Hannah Chamberlain
In my experience everything in a mental health service is a touch point, and tells us as users of services something about the identity and role we are expected to play in the time that we spend in the service environment.
My very first experience of the mental health system was in a Victorian asylum – in order to enter it every visitor to the building had to pass under a three times life sized statue of the founder, sat on a pedestal above head height. I’ve since spoken to clinicians working in the Warneford Hospital Oxford, where the statue is still in place. They pass it everyday and barely notice it. It is not speaking to them. To me it had a message that was loud and clear. That great Victorian worthy and his statue gave a clear indication of where I was in the scheme of things.
Likewise, when I was given my diagnosis. I came back to the ward late and was given a cold supper covered with a metal dish, to eat in my room. It looked like a dog’s bowl. I reacted. “That’s a dog’s dinner!” I said. “I am not a dog!” I said. Staff failed to understand my response, and their attempts to calm me felt patronising and missing the point. In the end, I did get a response – one of anger.
“This is not my dinner!” I said. “I am not a dog!”
“That is your dinner,” the nurse said. “And you are a manic depressive”.
It was the first time I’d been given my label. She closed the door on me and left me to eat meat covered in cold gravy on my own.
Moments like that can set identity and life aspirations in an individual for good. It was all sparked by an institutional plate cover. Touchpoints. Design. Environment. Culture. It is possible, as good product designers from the commercial sector know, to make a product experience that affirms identity. Why aren’t we learning from that sector in our service design?
My first encounter with my diagnosis was twenty-five years ago. Hopefully nothing like that happens now. The only way to learn not to repeat the mistakes of the past is for service providers to listen. That’s why I tell the story.
That story exemplifies the antithesis of the co-production of care, of coming alongside people to see the world through their eyes. In order to coproduce care with people, NHS staff and providers need to grasp their value set and priorities. Then they can support people to articulate how they are to go about creating a life of value – to themselves and to others. This is what recovery is about, setting priorities which are defined by the individual and their value set. This is what tells people they are important, that their goals are important and worth believing in.
I say that hopefully nothing like that happens now, but in terms of people believing they are valuable after a mental health diagnosis, it seems that the same hard imprint is still being made on identity and aspiration. Not long ago I ran into a young man who I was in hospital with some years ago. “What are you up to these days?” I asked him. He’d been in and out of hospital, but it had been nine months since his last admission. He slumped visibly on hearing the question. “Waiting to go into hospital again” he said. Goodness.
I’m now Project Lead for Enablement at Inclusion Barnet, working alongside Barnet, Enfield and Haringey Mental Health Trust to embed recovery principles and coproduction throughout the service. As we come towards the end of the contract, so much has been achieved. There is way more to go, but the shift of culture is well underway. Still, if we as service providers are to coproduce, it has to be at every level of the service. It has to be to encourage feedback loops of ex-service users to improve the service for those coming into it, for sure. It also, however, has to be about coproducing care for the individual, and coproducing culture on wards and other clinical settings that encourage the individual to self manage and value their experience for the skills that they can learn.
The analogy that is most pertinent is that of a road. If you are a service provider, you are providing a service – a road. A route to get from A to B. As the individual or group travels to their goal, the service provider builds the road. It isn’t glamorous building the road. It’s just supposed to be smooth. No sticking points. No moments of dislocation, no identity jars like I had over my dinner. That was indeed a stop sign, one that I didn’t need. The service has to sell the destination, create and coproduce moments of motivation, go signs. The road has to be easy to travel, on towards a goal, one that the user of the service, the service, or the group can believe in. That means that, as service provider, you have to believe in the potential of the individual, and of the collective.
If you are selling a road, you don’t sell the tarmac or the engineering, you sell the destination, and the destination on a recovery journey is a constantly shifting rainbow. A collective, coproduced vision, like the rainbows that we saw drawn by children in windows across the country in lockdown. It is a vision of hope, of recovery.
For our service users at BEH that rainbow destination is for them to get on with the rest of their lives with hope and determination, not reliant on, but supported by, services both statutory, community and informal. The rainbow also happens to be in the colours of Barnet Enfield and Haringey NHS Trust. In this it exemplifies what we hope to do in Enablement and in embedding recovery principles – to help the Trust to bend around each individual, to coproduce a vision of an identity and a life beyond services.
I’ve coproduced service design with users of services using post it notes, play dough, stickies, emojis, software, flipcharts, whiteboards, you name it. The important thing is to visualise a goal, a destination, a vision of where we want to be. Then we can work together to build it. Coproduction is only as limited as your imagination. All those touchpoints of a service that tell you who you are – they shouldn’t leave a hard mark on your identity. They should be full of possibility. They should not close doors, they should open them. They should turn the stop sign to go.
Hannah Chamberlain works for Inclusion Barnet as Project Lead for the Trust Wide Enablement Partnership, a unique collaboration between Barnet, Enfield and Haringey Mental Health Trust (BEH) and Inclusion Barnet, which works to design, deliver and evaluate a wealth of projects across BEH under the Enablement ethos.