[here is a 400 word piece I wrote for the Scottish Independent Advocacy Alliance (not accepted)]
Advocating for Family in Psychiatric Settings: the Challenges
“In 2012 and 2013 I advocated for two of my sons, now aged 30 and 36, in two different health board areas when they were psychiatric inpatients of IPCUs. They called me in to advocate at clinical meetings and at Mental Health Tribunals. I saw my role as an independent advocate, witness and peer supporter. I’m a survivor of mental illness and psychiatric treatment.
There were a number of challenges in advocating in one setting due to the use of a locked seclusion room to manage the patients, a room which had no toilet or drinking water. In addition there were other constrictions in the ward: no pens to write with unless accompanied by two nurses; no plastic bottles of water allowed; plastic cutlery; sleeping accommodation locked during the day; some visitors (me) having to enter the ward by the back door through the staff kitchen, no light or bell, in the winter time.
Being an advocate for my other son was challenging because of the polypharmacy, the use of psychiatric drug cocktails to manage the patients. On the one hand I was helping my son to speak out his concerns while on the other I spoke out as a mother and carer, highlighting the issues of using 5 drugs, two of them antipsychotics, like a chemical cosh. It was easier to be an advocate and carer in this setting because I was respected.
It was a different situation in the seclusion room IPCU where my advocacy role at clinical meetings was not welcomed by the RMO and I was put under pressure to influence my son regarding drug treatment and compliance. I had to resist these pressures and stand with my son. At the time I didn’t know the full story about what went on. After my son was discharged and came home we had to live through the flashbacks and the pain from the psychiatric treatment.
In 2000-2002 I was involved in managing advocacy volunteers, advocating for individuals and facilitating self advocacy groups, and in 2001 I attended the Allies in Change weekends run by the Scottish Human Services Trust. I remember it as a time of real potential and possibilities. However by 2009 I found myself campaigning with Fife advocacy groups at Scottish Parliament about the advocacy tendering and local groups losing out. I am now a mental health writer, activist and campaigner, independently speaking out.”
Here is the story of my attempts to have this piece accepted by SIAA:
On November 2014 I was looking through the Scottish Independent Advocacy Alliance website and noticed this invitation: “The SIAA wants to hear from you. If you would like to be a guest contributor” so thought I would respond.
I’ve known the SIAA Director since about 2009, met with her in the SIAA office in Edinburgh, have attended their AGM on occasion, phoned to discuss topics, sent them information and updated them on the Fife situation regarding advocacy, or the lack of. I considered her to be an ally. So I Emailed suggesting I write a piece, saying:
“It might be useful for me to write about the challenges of providing independent advocacy to family members when there are competing “interests”. Eg as a mother I would have preferred my sons to conform, to swallow the drugs, so as to be “safer” and not subject to coercion. However as an advocate my task was to represent their wishes and to help them achieve what they wanted. One of my sons resisted drug treatment while the other can swallow anything. If I was to write some pieces for SIAA about these issues it may help other carers and patients, mental health professionals.”
I eventually got a response on the 13 November from the Director who said:
“We may have a 1 page slot for the Spring edition (approx. 400 words). It would be interesting if you wrote about your experiences advocating for your sons and the conflict of interest that raised.
I can’t guarantee that your piece would appear in the Spring edition because we have already approached other contributors and are awaiting confirmation.
Also I need to be clear that SIAA has full editorial control over all contributions to the magazine and therefore any article submitted may be amended. If you would like to contribute then the deadline is 19 January 2015.”
Although it sounded iffy as to whether I would pass the grade I decided to have a go and submitted a piece, and did so on the 16 December. There was no payment for the privilege. I wasn’t doing it to get famous.
On the 9 January this year I got a response from the Director of SIAA, asking me to change the focus of my piece. There was a suggestion I should write about how my sons “didn’t want to take medication” and how I “wanted them to take it and get better”. Which I never said and wouldn’t have said. My point was about being conformist so as to avoid coercion or compulsory treatment. There is a difference.
I always resisted swallowing the drugs and was forced to comply. The older I get the less willing I am to persuade family members to voluntarily take the drugs if they don’t want to. Why should they have to? That’s why we have independent advocacy. To help people speak out.
So we reached an impasse, the Director of SIAA and me. I wasn’t prepared to have words put in my mouth. She wasn’t prepared to take my story as written.
My final Email sent today to the SIAA Director, copied to others I knew on the Board, had the strapline:
“no room for an independent voice – the corporate rules in SIAA”