Saturday, 1 March 2014

the problem of pain

"All shall be well, and all shall be well, and all manner of thing shall be well" Julian of Norwich

my 1957 copy
Reflecting on recent experiences of trying to be meaningfully involved on a crisis and acute care network with psychiatrists and clinical nurse managers the problem of pain came to the fore.  But this time it was the pain of the professionals that was paramount which resulted in pressure from them and resistance from me.  Reputations were at stake, it was a matter of pride.  

Prior to this at meetings it was me who was feeling the pain when my son was being dehumanisingly treated while detained in a locked psychiatric ward.  My pain seemed easier for them to bear, it didn't affect them directly as none of them worked in the health board area where I live and weren't personally or professionally responsible.

The pain at the final network meeting I attended came about because of a conference last year where I was co-leading with the psychiatric professionals, an organ grinder and not just a performing monkey.  I had been asked to give a talk about my recent caring experiences in 2012/13 when 2 of my sons had to access crisis support which resulted in both being detained in psychiatric locked wards under the mental health act, in two different health board areas.  The stories were toned down (I'd left out the human rights issues) but still weren't positive.  It was an honest testimony but some delegates weren't happy and I was singled out by name and criticised in the conference feedback.  The only person with "lived experience" taking part.

I was also facilitating a workshop at the conference, later in the day, where I had planned to promote Open Dialogue and other alternative ways of working with people in distress.  We'd shown the Daniel Mackler video at the event before the start and at the lunch break, in preparation, and also parts of the Swedish Family Care Foundation Healing Homes film.  

However from the start of the workshop there was resistance to my facilitation and the information I was handing out.  My co-facilitator, a psychiatrist, took over leadership of the workshop and there were accusations made that I was "rude" and "aggressive", the workshop a "failure", and this was reinforced four months later at the final meeting I attended.

In psychiatric settings the treatment for mental pain is sedation, by coercion if "necessary", courtesy of the mental health act nowadays whereas before it seemed they could subdue at will.  That's what happened to me after the pain of childbirth, in 1978 and 1984, when I was held down and injected with chlorpromazine, even though a voluntary patient.  I didn't like being forced so soon accepted the liquid Largactyl then when obedient lined up and took the pills. although managing to avoid the ECT by running away in my pyjamas with my husband in the car.

It's difficult dealing with another person's pain, especially if it's mental anguish and you can't fix it with a sticking plaster or a soothing ointment.  I'm a fixer, someone who likes to problem solve and sort things out if possible.  It makes me feel better, tidies up the loose ends.  But I've had a lifetime of family members who have experienced mental distress through altered mind states, their psychoses a way of escaping the existential issues or quandaries of life not working out in the way you expect.  For me it was body transitions that shifted my mindset, resulting in an altered universe.  It wasn't unpleasant but a way of coping, compared to the psychiatric treatment which I've always found harsh and unforgiving.  I don't like being forcibly drugged and having my agency taken away.

Therefore I am very interested in alternative ways of working with psychoses, altered mind states and mania, that involve listening and being with a person in their pain, rather than systematic overcoming of a person, stifling their cries and infantilising them.  I don't accept psychiatry as a father figure.  My father didn't force me to do anything.  He may have sent to my room on occasion when I was being cheeky or standing up to him.  But he wasn't a bully.  He taught me how to box when I was a wee girl so that I could stand up to the bully boys on the street where we lived.  Being able to defend myself has been a useful manoeuvre over 61 years and more.

Although I've now come off the crisis and acute care network I'm grateful for the opportunity it gave me to be an equal at the table with professionals and to be a main player at the conference.  It may not have worked out the way I wanted it to but I do appreciate that they were willing to take a chance on having me meaningfully involved.  I'm a survivor, of mental illness and psychiatric treatment, and took part in this group from the survivor and carer perspective.  There was no compromise and overall it was a positive experience despite the negative ending and the problem of pain.

Open Dialogue UK are holding a series of Spring weekend seminars on Open Dialogue, beginning 15/16 March 2014, in the Round Chapel, Hackney, London and I've booked a place:
Round Chapel, Hackney

"Over the course of three weekends in the Spring of 2014, members of the Open Dialogue team from Western Lapland will be visiting the UK to introduce the Open Dialogue approach in some depth to NHS teams from across the country, other mental health professionals with an interest in dialogical/family approaches to psychosis and other forms of mental distress, carers and service users."

I'm looking forward to the networking and learning, and plan to share the information and experience with others.  I am convinced that we need a range of alternatives for working with people in psychoses and altered mind states, ways of being with a person in and through their pain so that the problem isn't personal, is shared and is the responsibility of us all.

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