Powerful Minds:writing a booklet of stories of recovery

from psychosis

Darryl Thompson, and people who use or work for the Wakefield Early Intervention in Psychosis Team

How the booklet was born

• Thomas Morris identified that stories of other people’s recovery would have been helpful for him to have

• Fiona Lowis & Rebecca Ramsden had introduced the concept and practice of people writing their own discharge letters, so we already had some stories

• As a team, we were also looking to develop helpful information about psychosis

Initial plans

• Ambitious plans of a ring-bind folder in the waiting room, and then one on each ward

• We’d even use those clear plastic wallets to make it look good

• Tom thought that these plans were a bit… ‘rubbish’

• We put in a bid to the Trust’s Innovations Fund, and were awarded funding for 10,000 copies

Getting started

• A gang of four of us worked closely together (Heather, Tracey, Tom and Darryl)

• Regular meetings were held to update progress and decide on direction, with often a dominant focus of managing Tracey’s and Darryl’s stress levels

• Stories were written with those who wanted to contribute, then edited

The editing

Darryl is a pedant, so did most of this• Careful not to identify third parties• Anonymised it for people who asked for this• Shied away from naming medications• Tried to paint a balanced view of services as

best we could• Tried to keep them to manageable sizes so

they would fit (with some regrets from contributors that we did this)

The art work

• All the artwork was completed by Heather • We were mindful of the pressure that we were

under, and this applied equally to the production of the artwork

• Some of it was still wet when it arrived at the office…

• Feedback has been unanimously positive about how the art turned it into a visually attractive document

From Heather:

“The project allowed me to feel like a valuable member. It gave me a platform in which to boost self-confidence, proving I am still capable of contributing in the area that I’ve lost faith in. For that I am grateful and honoured to be a small part in the project of Powerful Minds”

Positives from doing this:

• “It brought me back on track”• “It was a good start to the year”• “I feel closer to my worker, they understand

me better now”• “It was excellent to be part of it, to give

something back to the team”• “No regrets about doing it”

Positives from doing this:• Letting others know what the person is going

through, and what those close to them go through• Highlighting how people start in different places

and finish in different places• Breaking down stigma, the barriers• Hopefully get a quicker response for those having

problems• Providing individual people’s experiences,

including family• Inspiring other people to share their story

Challenges from doing this:

• “I had blocked a lot of it out of my head. It was like remembering a story somebody had read to me years ago. It was quite traumatic”

• “A launch event with all the contributors would have been good”

• “We regret not using our real names. It looks as though we’re ashamed of what happened and we’re not”

Challenges from doing this:

• “Hearing the ‘other side’ was pretty disturbing, not realising the pressure you put on your family. My story was known to my wife, but hers wasn’t known to me”.

• The time pressure• Tracey and Darryl really missed it once it was

finished• Heather and Tom were pleased to be rid of all

the hassle

Where it’s gone

• GP surgeries• Chemists• Schools & Colleges• The NHS Confederation• Libraries• Australia• Gyms• Community Venues (a supermarket & a pub)

Who else was involved:

In addition to the people already mentioned:• Eight other people who spent the time and effort

to write their account of their experience• Jude Tipper in our Communications Department,

who kept us on the straight and narrow • Rachel Barratt of the Design Department, who

turned it into what it is• The Finance Department, for giving us the cash

Next steps

• It’s now on the internet - http://www.southwestyorkshire.nhs.uk/be-inspired/powerful-minds/

• Evaluating its impact in use, especially in primary care

• Trying it in new areas • A DVD?• Starting the stories earlier