Friday, 31 May 2013

professional service users, more harm than good?

I was speaking to someone on the phone yesterday about mental health service user involvement, the issues around speaking out critically and being silenced by both the professionals and the service users.  It followed a meeting we had both attended locally, headed up by NHS and social work.  The person mentioned 'professional service users', a description I wasn't familiar with.

Here are quotes from a 2010 Guardian Professional article 'Does user involvement in charities bring any benefits?' by Stella Smith: 

    "There is of course, the 'professional service user', the individual who regularly acts as a service user representative on committees and is called upon for media interviews."

    "Service user involvement is important but it takes significant staff time and financial investment. To involve service users without this and often with no reward other than travel expenses and a free lunch, is patronising and ultimately reinforces the social exclusion which charities purport to challenge."  

The piece also mentions that "much user involvement is so poorly executed it does more harm than good".  Which rings true with my experiences over the last 5 years of trying to get meaningfully involved in mental health service design and delivery, and in having a voice.  The more I've spoken out the more control comes into play, resulting in silencing, straitjackets and exclusion.  From the professional service users.

But I think the system is happy with professional service users.  They don't rock the boat, challenge the status quo or speak out about human rights issues in psychiatric settings.  They support compulsory treatment, even force used against them, saying it is justified or was necessary.  I've heard folk say this and can't understand or identify with it.  I never liked being grabbed and jagged, detained and made to take the psychiatric drugs.  I wasn't grateful.

I see no justification for the use of force in psychiatry.  It demonstrates poor nursing practice and human rights abuse, in my opinion.  I now know that complaints processes in psychiatric circumstances can be unsatisfactory (in Fife) and frustrating in the longer term.  Psychiatric nurses writing what they like in the 'medical' notes, badmouthing carers, justifying poor practice and denial of basic human rights. Non-existent policies and procedures, making it up as they go along, and getting away with it.  

I want to see service user, survivor and carer participation and leadership, in mental health/psychiatric service design and delivery.  It's not happening where I live and I'm not seeing any signs of real change or of senior health and social care managers understanding what meaningful involvement is all about.  It seems they would prefer to continue with professional service users who will tell them what they want to hear and can put up with the labelling, patronising, broken promises and same old.

Monday, 27 May 2013

let's have mind and body crisis alternatives, peer led and flexible

my response to a recent government consultation:

"We need alternative ways of working with people in mental distress.  Peer led crisis alternatives, non-medical, non-clinical, places where people can talk about their problems and be listened to.  A place on the high street in towns where folk could drop by, drop in, have a cuppa, pick up leaflets, join a group without having to get a referral, fill in forms, give their life story, be labelled.  

A place where people with lived experience of mental distress are paid or do voluntary work, help others the same as themselves, to discuss whatever and to discover ways of coping or of overcoming.  No-one in uniform or with badges but a welcoming atmosphere and a feeling of acceptance for who you are. 
The alternative place could also have ordinary things going on, not mental health specific but more about keeping well, something like a community centre but more holistic, mind and body stuff.  Offering respite, a day's break or an overnight or two, away from the usual, to relieve stress and have opportunities to talk and be quiet.  Churches do stuff like this, retreats, that people benefit from.  But I'm thinking more of a mind and body resource, an alternative to the (bio)medical model.  

It wouldn't be called a crisis centre but it would have a respite element within it.  It would have to be voluntary sector run, to incorporate paid and voluntary staff, allowing for a variety of input and skills.  I've seen this work well in other settings and have often done this type of work, sometimes being the only paid person working with volunteers who I've recruited, trained, supported and supervised."

where one door shuts another opens

"'Where one door shuts, another opens.' I say so because if last night fortune shut the door of the adventure we were looking for against us, cheating us with the fulling mills, now it is opening another one wide for us, for another, better, and surer adventure." 

from Don Quixote by Miguel de Cervantes

Here's to open doors and better adventures!

Sunday, 19 May 2013

being called a schizophrenogenic mother by a strange man in a tweet

The other day a man I didn't know eavesdropped my conversation in a cafe and labelled me a "schizophrenogenic mother" in a tweet.  A term I had to google as I didn't know what it meant.  How did I find out?  Here's the story.

I had arranged to meet a colleague in a local cafe to discuss an area of mental health work I'm involved in.  As we chatted I noticed an older man sitting near us, listening to our conversation, in particular to what I was saying.  Our meeting went on a while.  We got up to leave and this man intervened, introducing himself to me, my colleague left and then the man proceeded to tell me his name and all about his past achievements in Scotland's mental health world.  He didn't ask for my name.

As he spoke I realised that he was annoyed at what I'd been saying in my conversations with a colleague, in particular the references to an organisation that he used to lead.  He also gave his opinion on various matters in Scotland's mental health world although he now lives in Europe.  It was interesting to hear his take on things although I didn't agree with much of what he said.  However he wasn't interested in my opinions.

He ended the conversation, saying he had to go to the toilet, and shook my hand.  I went out to my car and immediately googled his name to verify his identity, and came upon his twitter account.  Where there were three tweets written about me from when he eavesdropped our conversation.  

The tweets were negative, the last one calling me a "schizophrenogenic mother".  I immediately responded by saying: "heard that (his name) good to chat and hear your story".  Shortly after the tweets were all deleted.

Which goes to show that you have to be very careful in using social networking when ignorant of the circumstances or to vent annoyance.  There's no excuse for badmouthing women even if they are strangers, especially if you're going to make their acquaintance shortly after. 

Friday, 17 May 2013

I'm protesting today outside VOX office, George Square, Glasgow

I'm doing a solitary protest today outside the VOX (voices of experience) office on George Square, Glasgow. I'm demonstrating about the attempts made by VOX board members to silence my voice (SHUT UP! go to bed), the lack of respect given to critical voices by VOX governance and the conflicts of interest in the VOX governance.

"VOX is a National Mental Health Service User Led organisation, we work in partnership with mental health and related services to ensure that service users get every opportunity to contribute positively to changes in the services that serve them and wider society."

I don't believe that VOX has made room for people like me in their membership, survivors of mental illness and psychiatry. It has become increasingly difficult for my voice to be heard in VOX matters. My activism and campaigning has resulted in bullying by VOX board members in Emails and discrimination at meetings. My protest will be a way of me having a voice and is a matter of principle.

The straw that broke this camel's back came via a two pronged attack.  A combination of arrogance, ignorance and condescension.  An unctuous mixture.  I took the bullying, the badmouthing and the backstabbing but the condescension is a step too far.

So I have resigned from the membership of VOX as a matter of conscience.  I can't be a member of a group that supports (doesn't stand against) forced treatment in psychiatric settings.  It would be condoning the force used against my sons, my mother and me.  In my opinion VOX should be speaking out about and against human rights abuses in psychiatric treatment, rather than being a focus group for government and NHS.

Monday, 6 May 2013

peer support movement? no, just jobs for the boys and the rest of us still oppressed

Just posted on Facebook: 

"what's happened to the mental health peer support movement in Scotland and the promise of power to the oppressed? It's more like power to a few and the rest of us still oppressed. The hierarchical shenanigans of our mental health world is very irritating and a perfect copy of the paternalistic, patronising psychiatric system. I didn't recover just to be put in a straitjacket by folk who should know better. Allies in change? I don't think so."

I'm going to have to write something about the peer support movement in Scotland that didn't happen according to plan.  Or at least didn't happen according to what I thought was the plan, back in December 2005 at the SRN PS conference in Glasgow.  If it was only about employability and furthering the aims/pockets of a few well I wouldn't have got involved.  I didn't start up Peer Support Fife in January 2008 to build myself an empire but to promote the PS model, recovery and to bring about real change in psychiatry and mental health services.

Friday, 3 May 2013

my experience of meaningful involvement in a mental health nursing programme

Yesterday by chance I came upon an article about an event, on a university website  It was like the final piece of a jigsaw falling into place and made sense of the meeting I had last November with this university's head of nursing programme.  A difficult meeting for me as many things were unexplained and a few days later I received in the post notice that I was no longer on their supply lecturing list.

This meeting had a domino effect on other meetings and work I was doing, from the survivor perspective, in mental health nursing matters.  Mostly negative in impact although one positive came out of it as I got involved in another university's mental health nursing training programme.  But that doesn't excuse the way that I was treated by the university who had approached me a year before, after a lecturer (now also working with NES) had attended 'At the Sharp Edge' event, 20 September and before the Robert Whitaker Lecture I'd organised in Cupar, 19 November 2011.

I met with the lecturer in the university on 1 November 2011, to discuss how I might be meaningfully involved in their mental health nursing programme.  I took with me various pieces of information, including the WRAP plan booklet from Kansas University, which they'd sent me a copy of in 2008 when I did the facilitator week's training, and their Pathways to Recovery strengths workbook.  (I was mentored by KU from afar in my delivering of WRAP workshops to over 200 people, in response to demand)

At the first university meeting I also discussed my hope of delivering the new HN units in Peer Support which I'd been involved in at the very early stages when I'd designed a draft HN descriptor and given a copy to Simon Bradstreet, SRN, in late 2007.  In early 2008 I also tried to take it forward myself with SQA.  The head of care lecturing at Elmwood College, Cupar, had worked with me on the draft descriptor, and at the time I was studying a PG Teaching Qualification in Further Education at Stirling University, graduating in June 2008.  I'd also organised a Celebrating Recovery event in Cupar in the April that year, sponsored by SRN and attended by over 120 people.

[However my attempts at being included in the HN PS units development through SQA, Penumbra and SRN, came to nothing and I could only sit on the sidelines and watch.  Something I've got used to in Scotland's mental health world exclusivity and croneyism]

In May 2012 I delivered a 2 day WRAP course to 3rd year mental health nursing students in the university and then in the July an afternoon session on strengths to 2nd years, using materials from the Pathways workbook.  I did lesson plans for these sessions and was paid lecturing rates.  Which made sense as I'd completed a lecturing application form and had the necessary qualifications, as well as the 'lived experience', or as I call it, the survivor perspective.  I gave feedback on the training to my lecturing colleague.

Then in November 2012 the goalposts changed and my lived experience was no longer required with no reason given.  Ironically that same day I was attending a Sociology class, scribing for my son, and was informed by the lecturer of a recent announcement on their website that the university was developing a "mental health nursing centre of excellence".  He showed me the bulletin.  News to me as I hadn't been told of this by the head of programmes or anyone else.  

The article I read yesterday was of an event with a recovery focus, involving the university, their mental health nurses, NHS, SRN and Penumbra.  Many of the topics that I originally spoke of in November 2011 in the university with a lecturer and later with the head of programmes before being recruited.  Yesterday I sent an Email to the head asking "I am wondering if you dispensed with my engagement so as to further your engagement with others?".  Still waiting for a reply.

Here are some questions: how can they justify their treatment of me, a survivor and carer, with their claims of excellence?  Where is the congruence and fairness, honesty and transparency, in their dealings with people like me?  Do we not deserve the respect of being treated equally and given the full picture?  It speaks to me of psychiatric system behaviour, patriarchal decision making and a withholding of information by those in power.  

Very disappointing.

[see pages 12/13 of The National Framework for Pre-registration Mental Health Nursing Field Programmes in Scotland 2012, on Approaches to programme design and delivery: Involvement and participation]