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Listening to those with experience of secure care

To mark Mental Health Awareness Week, the Recovery and Secure Care Manager at national mental health charity Rethink Mental Illness examines the vital work of Recovery and Outcomes Groups:

“And the winner is…!” was announced six times last week at the National Service User Awards for people living in secure services.

It was an amazing day celebrating the achievements of service users all over the country – from co-producing a ukulele course at a Recovery College to exploring the experiences of women in secure services for NHS England with a view to improving secure services for women.

I’ve had the privilege of being a judge for the past six years and it’s probably the highlight of my year. It’s testament to the huge amount of involvement and collaboration that takes place in so many secure services – which seems quite different from my time in a medium secure service from 2008-2012.

Once my mental health had stabilised, which took around 18 months, someone said to me: “Ian, you have a lot to say for yourself!” and introduced me to a Regional Involvement Strategy Group in the north of England.

I was captivated – a room full of around 60 people, service users, staff and commissioners discussing improvements to secure services and everyone’s voice was heard equally.

Travelling up from my hospital was exciting – I’d not been on a train for several years – and a big commitment from my hospital to support me to do so. The work this Involvement Strategy Group was doing grew – and me with it – and eventually the model was replicated across the country. More and more people throughout the world of secure services wanted to hear from those receiving services with a view to continually improving the care and opportunities they provided.

So, in 2012 around the time of my discharge from hospital, a national network of involvement groups for people living in, working in and commissioning medium and low secure services was set up called ‘Recovery and Outcomes’ – to improve the recovery-focus of services and support people to set and achieve both personal and pathway outcomes, as well as giving people a voice in influencing local and national decisions.

The idea was to bring neighbouring services together to discuss ideas, difficulties, developments and share best practice and while doing so, drive forward improvements in care, opportunities and involvement within services. Collaboration and what would now be called co-production principles underpin everything Recovery and Outcomes Groups do and to great effect – service users are being listened to and were clearly making a difference.

The network and its impact grew, and for the past three years has been commissioned by NHS England and delivered by the national mental health charity Rethink Mental Illness, where I’ve been the programme manager for over 4 years.

Little did I know that from one train journey to Yorkshire would come several years later a full-time dream job.

Over the past few years, people who attend Recovery and Outcomes Groups have contributed to the revision of the Adult Secure Medium and Low Secure service specifications, the development of a model for new community services and a new women’s strategy, and currently is contributing to the development of guidelines to support people to manage a healthy weight. The voice of lived experience is having a great impact and a lasting effect!

Around the time the Recovery and Outcomes Groups were set up, I had the privilege of being invited to apply to become a Patient and Public Voice (PPV) partner with the NHS England Adult Secure Clinical Reference Group (CRG), a role I’ve now had for six years.

Slightly daunted, it quickly became clear that the rest of the CRG really did want to hear what I had to say – my experiences of being in secure care really were important to the discussions and the clinical oversight that the CRG gives. I felt valued and empowered. And not only could I feed in my own experiences of secure care, but the voice of many others through the Recovery and Outcomes programme.

But while the involvement of people in secure services has and continues to improve, there are much wider challenges for people severely affected by mental illness, personality disorder, learning disability and autism. People still experience poorer life outcomes and life-affecting stigma, including the double whammy for people living with convictions. People regularly write to me saying they’d love to go back into employment but are worried about disclosure. They also write to tell me about problems finding suitable accommodation, achieving social connectedness, developing relationships and rebuilding broken links with family and friends.

What people so often say to me is that people see the mental health problem and not the rest of the person. “This is only a part of me and not the whole me”.

The ukulele player at last week’s Awards played her ‘recovery mash-up’, which not surprisingly included ‘This is me’ from the film ‘The Greatest Showman’. Greater inclusion through involvement and co-production, such as that happening in secure services, is desperately needed.

Being listened to, heard and involved can be transformative for mental health services, as well as for people themselves – as it has been for me.

  • If you live or work in a secure service, or work in Specialised Commissioning, and would like to find out more about the Recovery and Outcomes programme, please email me at recoveryandoutcomes@rethink.org
  • You can find out more about the Specialised Mental Health Programme of Care, including the Adult Secure Clinical Reference Group, on the NHS England website.
  • Mental Health Awareness Week takes place from 13-19 May 2019.
Ian Callaghan

Ian Callaghan is the Recovery and Secure Care Manager at the national mental health charity Rethink Mental Illness, where he delivers a national network of involvement groups for people in secure mental health services called Recovery and Outcomes.

Ian is also a Patient and Public Voice partner with the NHS England Adult Secure Clinical Reference Group. Ian was the Rethink Mental Illness Member of the Year in 2012 and in February 2015 was awarded the Deputy Prime Minister’s Mental Health Hero Award in recognition of his role with Recovery and Outcomes.

Ian was also recognised as one of the top 50 Patient Leaders by the Health Services Journal in July 2015.

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