Thursday, 21 August 2014

Excellence in Practice Seminars @MentalWelfare and the Meaningful Involvement of people with Lived Experience

I'd received an E-bulletin yesterday from the Mental Welfare Commission for Scotland, advertising 'Excellence in practice seminars' in topics of:
  • Seminar 1; Medical Treatment for People who Lack Capacity: 22 Oct. 2014 at COSLA Conference Centre, Edinburgh 
  • Seminar 2; Restrictive Management of Individuals - Rights, Risks and Legislative Frameworks: 20 Nov. 2014 at COSLA Conference Centre, Edinburgh 
  • Seminar 3; Professional Challenges - Welfare Guardianship and Powers of Attorney: 26 Nov. 2014 at Discovery Point, Dundee 
I checked out the "target groups" as intimated by the MWC and these were all "professionals" working in statutory agencies eg Mental Health Officers, CPNs, GPs, Care Home Managers, but no mention of service users or carers.  So I Emailed to find out if people like me would be welcome at the seminars.

I received a response from Colin McKay, Chief Executive, MWC, confirming that  
"service users and carers are not the target group for these seminars"

"These seminars have been specifically designed for the practitioners identified in the target groups.  They address the difficult practice and legal issues that these practitioners face, and have been designed to provide detailed input from the Commission and to encourage reflective discussion by practitioners in response to this.  This format has been running for several years, and was established to support and enhance the guidance we issue, for practitioners who use it in their work.

We of course also provide guidance and advice for service users and carers, and we are conscious of the need to do more to support service users and carers in understanding their rights and how to claim them.  Following some research involving service users, we are looking at how best we can achieve this. Of course, the number of people with lived experience is considerably greater and more diverse than the specialist mental health professionals who might attend seminars such as these, so we need to think about how best to ensure what we offer is what people with lived experience and carers want and need, delivered in a way which is of most value to them. This work is at an early stage, but it will be a priority for us." 

Here is my Email reply:

"thanks for personally responding.  I appreciate that you have taken the time to do so. 
I can understand that psychiatric and mental health practitioners should be the main target for the MWC.  It's been my family's experience over the last few years that psychiatric and mental health staff are not well versed in the mental health act or in how the principles should be practised.  We have found out, to our cost, that what is written in the Act, to do with rights and safeguards, are not always happening behind the locked doors of psychiatric institutions.

It is good to hear that you are considering how best to inform and support people like me, carers and service users, in understanding what our rights are and how to claim them.  However it was our experience, as a family, that even when we knew our rights and tried to claim them, that we were not listened to.  This led in February 2012 to bullying and intimidation by psychiatric staff, to the use of a seclusion room with no toilet or water to drink, and human rights abuse, perpetrated on my son.  
I was also bullied and intimidated then badmouthed in psychiatric notes, as in "difficult and demanding mother" for trying to photograph my son's injuries.  Then, after highlighting the issues to statutory agencies, the fact that my son was at risk, I was then accused in an adult protection investigation of causing "psychological harm" to my son.

I found out, when eventually getting a copy of the adult protection investigation report months later, that a psychiatrist and CPN were questioned regarding my character while their colleagues were subjecting my son to human rights abuse.  The irony of trying to blame a mother for system failure.  I blew the whistle and for my pains became a target myself.

Therefore I would say that the Mental Welfare Commission for Scotland does need to target mental health professionals in areas/topics like restraint, coercion, capacity, risk, safeguards, respect for carers, safe practices and even how to write notes accurately.  Additionally I would like to see the Commission think of ways to meaningfully involve people like me in your seminars as facilitators.  People with lived experience leading the way.

I want to challenge you, as the new MWC leader, to consider how my experiences and others who have had similar negative outcomes, may be an asset to the work of the commission rather than excluding us from the mix as has happened with Healthcare Improvement Scotland and the Scottish Patient Safety Programme in Mental Health.  It makes no sense, in my opinion, to ignore or try to silence the people who have been subject to abuse or negative treatment in Scottish mental health settings.

I would like to see Scotland leading the way in the meaningful involvement of people with lived experience of "mental illness" and recovery (or survival).  Up to this point since 2008, in my experience it's been a tokenistic, tick box exercise.  We are often kept at arm's length or patronised.  It wasn't like this in the community education world where I spent most of my working life, empowering people and promoting lifelong learning.

I do believe that when we sort out the issue of forced treatment (first do no harm) and offer a range of alternatives to psychiatric drugs then everyone will be a lot happier, patient, carer and professional.  For how can it ever be OK to forcibly inject another person with harmful drugs then tell them to stop falling over (happened to my son after getting 25mgs Haloperidol when locked in the seclusion room. I had to instruct the nurses to give procyclidine)?  Or deny them basic human rights so as to "manage" the patients (no pens to write with unless supervised by 2 nurses, water dispenser locked away in dining room, locked seclusion room light switch outside no toilet etc etc)?

There's the challenge.  Include us, involve us and learn from us.  Level playing fields and straight paths.
Regards, Chrys"

I forwarded the Email on to Geoff Huggins, Scottish Government, now Acting Director of Health and Social Care Integration, copying in Healthcare Improvement Scotland management, also Scottish Patient Safety Programme in Mental Health leads and Scottish Government mental health delivery team members and ministers.  For their information.  Saying:

"(For interest) A dialogue with Colin McKay regarding the meaningful involvement of people with lived experience in Mental Welfare Commission for Scotland matters.  Having us at the table, as equals, leading and facilitating, teaching and promoting learning.

It makes no sense to be excluding the critical voices of experience from dialogue and it would demonstrate a more skilful style of management to be incorporating psychiatric survivor and mental health service user voices at every level.  I do hope that sense prevails.  That we could have action and not just rhetoric."

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