Here is a letter I sent in an Email on 14 February 2015 to the academics with whom I have engaged, at the Edinburgh and Glasgow DClinPsy user/carer groups, since September 2009, trying to be “meaningfully involved” as an “expert by experience”:
Strapline: on being perceived as a guinea pig – the long road of humiliation and jumping through the hoops with the DClinPsy
I woke up this morning looking back over the years of trying to be involved as an equal, a person, on the “user carer” groups at both Glasgow and Edinburgh. And how difficult it was. Apart from my relationships with the admin staff who treated me like an equal and not as a guinea pig, for research purposes.
At the very first meeting in September 2009 in Glasgow at the Mental Health and Wellbeing Unit, or the red brick building as the taxi drivers call it, they were looking for research subjects. I can remember going in to the meeting, late because I couldn’t find where to park, and feeling like the odd one out. I’d recovered from psychosis, three times, and was in good mental health, not on drugs. A psychiatric survivor. There was a woman there, lead worker with (voluntary sector mental health organisation), who wasn’t feeling well, and it seemed that the clinpsy staff were going into CP mode, doing an “intervention”.
It wasn’t long after that the (voluntary sector mental health organisation) woman resigned and another worker got the job, the guy who accused me of “demonising psychiatry” at the final Glasgow CUSP meeting I attended in 2014. He pointed the finger because I had been criticising the use of ECT on children and he said only a few would be getting it, as if that was OK. This man and his service user colleague, who holds positions at the (voluntary sector mental health organisation), bullied me off the SEAN user reference group at the end of 2012, ganging up on me. And then there is the other guy, (position), who objectifies women at the meeting. And gets away with it. Nothing was ever done to shut him up. Yet I got bullied for speaking out against ECT for children.
Fast forward five years to the CBTp workshop in the Playfair Library Hall, 16 January this year, and (lecturer) saying to me that “service users” were invited to the event as it was hoped to recruit them (us) for research purposes. Guinea pigs. Interestingly, before going in to the event I spoke to a voluntary sector colleague, who said that she had been the one who had asked that people with lived experience might get a place at the workshop. In other words, we weren’t originally getting invited. But then we were because we might be useful. As guinea pigs.
I always had the feeling at both DClinPsy groups that those of us with “lived experience” weren’t there to be engaged with as equals but as useful subjects, specimens if you like, to fit in with your agenda, your research, your academic syllabus. I didn’t fit in at either university DClinPsy course because I am an unbeliever in the biomedical model of mental illness and continually recover from psychoses and psychiatric treatment. Despite being told I have a lifelong condition.
Yet I persevered over these years in trying to be “meaningfully involved”. At one point we had three male academic staff at the Edinburgh group who it seemed were trying to get us to fit in with their agenda. By this time there were only a few of us left attending. Others had dropped by the wayside. I remember (lecturer) going on about physical illness being a priority. Another (lecturer) going on about the meeting not being about influencing CP in health board areas. They were trying to make us fit their agenda. I kept reminding them that we were there voluntarily, unpaid. If they wanted to recruit people for their agenda then they’d have to pay them/us.
I remember many battles like this at the Edinburgh group as they tried to make us, who were left, conform to their way of thinking. It went on for 3 years. Meanwhile at the Glasgow group there were a few chosen ones who were favoured. I got to do the Plain Language Summaries, eventually, and then the CBT/IPT workshops. After about 4 years. A long apprenticeship, considering I am well qualified and experienced in real life, as a community development worker, trainer and facilitator of learning. The whole experience has been an exercise in humiliation and jumping through the hoops. And having to fight for travel expenses. Disgraceful really.
While I was striving to be accepted in both these DClinPsy groups my son was also being humiliated, and abused, in Stratheden psychiatric hospital. Locked in a seclusion room, no toilet or water to drink, light switch outside, broken hand untreated, an asthmatic who had in the past experienced 3 collapsed lungs. So as I tried to be accepted and respected at the DClinPsy user carer groups I was also having to fight a battle for justice, in respect of my son, while picking up the pieces after traumatic psychiatric treatment. The flashbacks from the abuse. No support from clinpsy in Fife, or anywhere.
That’s the reality.
My questions to you therefore are: what is clinical psychology in Scotland there for? What is your purpose? Are you only there as a political force, to have a position and a paid job? Are the Experts by Experience (EBE) only guinea pigs in your quest for recognition and power? Do you think that your treatment of the EBE is acceptable? And if it’s not acceptable then what are you going to do about it?
I will have more to say about this, now that I’m not a guinea pig.