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And they call me bonkers

Posted: 19/02/20

Isaac Samuels, the Deputy Chair of the National Co-production Advisory Group, shares his personal story of an out of area placement.

And they call me bonkers

Imagine needing care and support for mental health challenges at a time when everything seems absolutely fantastic to you: you are “related to royals and you have superpowers” and you have ideas that seem completely unbelievable to anyone other than you; that's the reality of people when manic. The other reality is that you are acutely unwell.

Without the right care and support how can anyone start their challenging journey to management or recovery from this chemical imbalance? What’s needed is a safe place to start. For many of us that will mean hospitalisation. And for some of us that will mean long stays in mental health hospitals a long way from home.

Just the other day I was talking with a doctor about the treatment of people like me. I’d taken the Making it Real statements with me. I wanted to know what was her way of ensuring that people got the best care and support for their mental health needs. The doctor didn’t seem to get the question or understand her role beyond the elimination of negative symptoms.

So, I said “Doctor, if you were going to build a system, the sole aim of which was to ensure people would have the worst outcome, what would you do?” I got a blank face - so I said this is what I would do:

  1. Lock them up and give them very few choices about treatment

  2. Put them in a hospital in the middle of nowhere

  3. Make it hard for people to come and visit them

  4. Make it impossible for the professionals that support them to come together to plan their care

  5. Work in a non-joined-up way

Need I go on….

The penny dropped when the psychiatrist realised that's exactly what we do now. And that’s backed up by the recent NDTi paper, Close to Home, which states that ‘out of area placements are expensive, make continuity of care and commissioning more difficult, cause problems of isolation and institutionalisation for individuals and may constitute a suicide risk’.

For me being sent away to an out of area placement was the worst possible thing for all those reasons. I did feel isolated and institutionalised. But just think how different this COULD have been. For example, if the Making It Real statement, “I have a network of people who support me – carers, family, friends, community and if needed, paid support staff, was the reality instead. As NDTi's paper is clear ‘the value of involving people themselves in generating solutions that work locally is self-evident’. Let's make sure that co-production helps keep people close to home.

 

Isaac Samuels is Deputy Chair of the National Co-production Advisory Group at Think Local Act Personal (TLAP).  He works with the Royal College of Psychiatrists as a national adviser and with mental health providers to improve service provision.  He is a Trustee of People’s Voice Media and advises different organisations on how to engage people from the LGBTQI and other seldom heard-from communities.  He is an Honorary Fellow advising on research at City University, with a particular emphasis on quality improvement, co-production and a rights-based approach.

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