The importance of hope – co-production and mental health

I met Anna and her colleagues at this year’s Dementia Congress. There was little talk about co-production there generally, but Anna had an intriguing poster presentation about co-production so I asked her and her colleagues to capture it in a blog.

In 2011 I began to wonder what we could do to support greater co-production and person-centred care in my work in mental health services at 2gether NHS Foundation Trust. I read an inspiring article by Miles Rinaldi, Head of Recovery and Social Inclusion at South West London & St George’s NHS Trust who had set up a ‘Recovery College’ in a building on their main site. The college was co-produced by people with lived experience of mental illness and mental health professionals to provide educational courses about recovery in mental health.

‘Recovery’ is a somewhat confusing concept for many to understand, as some people make a full ‘recovery’ from their mental illness, whilst for others it is more like living with a long term or chronic illness, or being a ‘survivor’ of an illness like cancer. Because of this ‘Recovery’ is a very personal word, meaning different things to everyone. In mental health, ‘recovery’ means the process through which people find ways of living meaningful lives with or without ongoing symptoms of their conditions.

It is a personal journey of discovery that involves making sense of and finding meaning in what has happened, becoming an expert in your own self-care, building a new sense of self and purpose and discovering your own resourcefulness. Users of mental health services have identified three key principles:

“the continuing presence of hope that it is possible to pursue one’s personal goals and ambitions the need to maintain a sense of control over one’s life and one’s symptoms and the importance of having the opportunity to build a life beyond illness”

After talking to many people and with their generous support, a group formed to support the development of a Recovery College in Gloucestershire and Herefordshire. At the time there were only two Recovery Colleges in the UK; the one in London developed by Miles Rinaldi and another in Nottingham led by Julie Repper, both inspirational ImROC (Improving Recovery through Organisational Change) leads. Both of these colleges were based in a physical building in an urban setting. They offered structured courses co-designed and taught by people that had personal experience of ‘recovery’ called ‘peer trainers’. The courses aimed to improve people’s self-knowledge and understanding of mental illness and peer trainers often share their own ‘recovery’ stories and learning, to demonstrate to others that change is possible.

Our team wanted to do something similar, but knew that we simply could not pick up this urban model and transfer into Gloucestershire and Herefordshire, where rurality and infrequent public transport can make access difficult.

We were lucky enough to secure funding from the Health Foundation to test this idea and the co-design of the college started in earnest in Spring 2012. The initial group consisted of people with lived experience of mental illness, carers, a range of brilliant charities (Herefordshire Mind, Family Lives and Artshape), Adult Education colleagues and staff and volunteers from 2gether NHS Foundation Trust. The group decided we needed to design a ‘pop-up’ college, so that we could take the college out to people. We wanted to deliver the Recovery College in educational settings to emphasise that this was not a traditional healthcare intervention, but was educational in nature. The group worked to develop an evidence based curriculum, a suite of supporting materials, an evaluation framework and an operational plan. We also wanted to offer three sessions of individual coaching to each student after the course had finished, as we recognised that people might want support to put some of their learning into practice. To do this we had to recruit and train both Peer Trainers and Recovery Coaches.

We used quality improvement science to design and test the college, running three courses over three months for fifty students. This first cohort of students helped us to learn so much, and over 80% wanted to stay involved and help us co produce the next round. Some are now peer trainers and others have helped to co-produce a range of new courses.

The amazing thing about the Recovery College is that the teaching is done by people with lived experience of mental illness, who not only have exceptional understanding of what mental illness is and the evidence base for it’s treatment, but also have expertise in self management techniques, such as mindfulness and crisis management. This unique blend of academic and practical knowledge is combined with the ability to inspire others through their own powerful stories of ‘recovering’. The course offers students the opportunity to learn more about their condition and treatments, develop fresh insights, learn new life skills and gain a sense of hope that recovery is possible. Students learn how to proactively manage their own care. The Recovery College is a place where people learn from each other each week and students often offer each other friendship, support, validation and recognition of each other’s strengths and attributes. Co-production happens every week as the course rolls out with students and peer trainers taking the lead and making continuous improvements.

The results of the Recovery College were beyond our wildest dreams. 94% of the first cohort of students felt more hopeful, 91% felt more self knowledgable and had greater self awareness. 82% of students felt they had gained a better understanding of others. The individual stories of change have been phenomenal. Many students are back in full time occupation or employment, others have considerably reduced their need for NHS mental health services, individual goals and dreams have been met and peoples lives have been changed.

Recovery Colleges are coproduction at its best. They can be life changing, joyous and deeply moving experiences, where hope, sometimes long buried, starts to beat its fragile wings and emerge. Jo puts it better than I ever could:

Recovery, by Jo Smith

I’m faced with a choice now,

‘To do’ or ‘to die’

I find I am willing

At least just to try

To take my first steps,

On the journey I face,

Just little baby ones,

For this is no race.

It’s an uphill struggle,

I’m scared I won’t make.

But I push on forwards,

Leave my doubts in my wake.

I’m strong beneath my fear,

I’m beginning to see,

So it really might be possible,

To achieve recovery.

And without even knowing,

I’ve already begun,

To rise from this wreckage,

Like a phoenix from the sun.

Anna Burhouse, Madeleine Rowland, Heather Marie Niman, Daisy Abraham, Elizabeth Collins, Helen Matthews, Joanna Denney, Howard Ryland

To learn more about the project watch the film at or read the co-produced article ‘Coaching for recovery: a quality improvement project in mental healthcare’ or visit the Severn Wye recovery College website for details of courses and events http://www.swrecovery.org.uk/

 

 

 

 

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s