Our experiences co-producing Reading Well for long term conditions

From initial ideas to final designs, our new Reading Well for long term conditions scheme was co-produced with the Coalition for Collaborative Care. We spoke to two members of the co-production group about their experiences developing the scheme, and their hopes for the impact it will have on public health and wellbeing.

Katie Clarke-Day is living with multiple long term conditions. She has a background as a social worker and psychologist and uses her skills and experience to advocate for an improved patient experience.

Mandy Rudczenko’s son was diagnosed with cystic fibrosis as a baby and she has been caring for him for the last 16 years. She has worked both as a mental health nurse and in the library sector.

The need

Mandy:
“As a carer I often felt overwhelmed by the intense daily treatment regime which I had to maintain to keep my son alive. I needed a book that would tell me it’s OK to feel like that; a book that would show me how other people had got through those difficult times; a book that would help me to keep going when I didn’t feel I could.”

The process

Katie:
“We were involved in designing and delivering the scheme though interactive and creative workshops that collected the views and experience of people living with long term conditions. We considered the design and structure of the booklist as well putting together some advice for the selection committee in what gives books that instant appeal, what makes you want to pick a book up and what were the images, words, or phrases that immediately put us off.

Working with The Reading Agency on this project has been one of the best examples of co-production I’ve seen. Not only was it a thoroughly enjoyable process but it also was very apparent that involving people with experience of long term conditions was not a tokenistic gesture.”

The books

Katie:
“I was initially sceptical but was hugely impressed by how flexible and versatile the books on this list are. Self-Management of Long Term Conditions was incredibly valuable for me as it touched on so many topics that no one else had. Living with pain can be particularly debilitating and hard to explain, but Pain Is Really Strange helped my friends and family understand my pain journey. My younger brother lives with Crohn’s disease and ulcerative colitis, and my family don’t always understand what he’s going through. That’s what made me pick up Go Your Crohn Way. It gave me an insider’s view, a little window into his life without him having to open up.”

The impact

Mandy:
“One of the biggest achievements of the Reading Well scheme, in my opinion, is that it brings health needs out into the open; it makes it OK to use books to help us manage our health. When I first saw a stand in my local library for the Reading Well scheme for mental health – I thought: ‘Yes – good for you – let’s show everyone it’s OK to borrow these books’. The fact that free books are now openly available to help people with long term conditions, and their carers, to manage their health, shows that we are part of the community. We can walk into a local library and see a display of books which gives us a strong message that we are valued. Unlike my experience when I was first told that my son might have cystic fibrosis, the Reading Well scheme reaches out to people in a public way and says, ‘It’s OK, you’re not alone’.”

Get involved

• See all the titles on the new Reading Well for long term conditions booklist.
• Find out more about the Coalition for Collaborative Care.
• Download resources to support the new scheme.