Health Quality & Safety Commission | Partners in Care presenters on working with consumers and co-design
On 14 April 2014, the Health Quality & Safety Commission hosted the Partners in Care: Show and tell symposium. The day was an opportunity for providers and consumers from across health and disability services to share their expertise, knowledge and approach to working together as partners in care.
Keynote speakers were author and illustrator Matthew Johnstone and co-design expert Hilary Boyd.
Matthew Johnstone is creative director at the Black Dog Institute in Sydney, and also has experience as a user of mental health services.
He has written several books on depression, including I Had a Black Dog, for people with depression, and Living With a Black dog, for carers of people living with depression.
The Black Dog Institute is a world-leader in the diagnosis, treatment and prevention of mood disorders such as depression and bipolar disorder.
Matthew Johnstone says while, from the outside the institute seems like a very academic place, it actually has significant and vital input from consumers.
“Many of the institute’s volunteers and consumers have experienced depression or cared for someone with depression. I really encourage recycling of experience – and you see this in the fantastic energy from our fund raisers and volunteers, some of whom have gone on to join our staff.”
He says hearing from others who have experienced depression can be a huge help to people.
“Breaking down the stigma is our biggest mantra. People are still worried about speaking up about depression. They fear losing jobs, how it might affect their insurance and so on. Hearing others talk about their experiences helps break down that stigma.”
He says depression can be all-consuming.
“It’s not just a mental thing, it’s a physical thing. It’s the loss of the twinkle in someone’s eye. It’s a loss of joy in life. Depression affects sleep, your ability to fire up in the morning and get going, your appearance and self-esteem, and your memory.
“There’s a sadness that is not really in keeping with what’s going on. You start finding the wrong in everything and flaring up with anger. There can be a loss of intimacy, and self-abuse using drugs and alcohol.
“With me, it was hatching plans to get out of there – if only I could go and live in a grass hut!”
He says when people are like this it is important to step in and engage with them.
“Empathy and understanding are very important, but don’t try to ‘buck them out of it’ or push them into doing things they don’t want to do. You just have to speak from the heart. If they do acknowledge there’s a problem, be there for them, let them speak. If they say they need help, try to find it for them.
He says it is important to accept that depression is a mental illness, not a life sentence.
“Always remember – it will pass, it will pass, it will pass.”
Hilary Boyd, gave the audience an overview of co-design in health care. Ms Boyd, who works at the Auckland District Health Board project managing co-design, gave examples from her own work and recent international experiences studying co-design through a Winston Churchill Fellowship.
She says there are two key questions: ‘How can we understand people’s experiences of our healthcare service?’ and ‘How can we work together to improve them’?
“Health service co-design provides a framework and tools that can be used to answer these questions. The concept of co-design is relatively new and can take many different forms, as a whole project or part of a project.
“The six phases of co-design are engage, plan, explore, develop, design and change. It is important to engage with patients and families early and work towards establishing and maintaining meaningful relationships while also ensuring staff are on board throughout the process.”
Hilary Boyd says the Conversations that count project was a co-design initiative facilitated by Auckland DHB that resulted in a booklet and training package to help families and communities talk about death and dying so people can get the care they want at the ends of their lives.
She says there are challenges facing co-design, including capturing the experiences of those who traditionally aren’t heard, building capacity among staff to match the increasing awareness and interest in co-design, the role of service designers within hospitals, and having a central place where we can share tools, templates and other resources.
She reframed the two questions from the start of her presentation to: ‘How can you understand people’s experiences of your healthcare service?’ and ‘How can you work together to improve them?’.
Ms Boyd has set up a membership-based co-design website for people who are learning about or working in co-design. On the website people can get the latest news, share their stories, meet with others and join the debate. http://codesign.hiirc.org.nz/
For more information about co-design see www.healthcodesign.org.nz/about.html