26 March 2012 - A Space Odyssey - From A Psychiatric System In My Neighbourhood

An epic on the scale of Homer's poem, with stories of captivity, voices from above and beyond, forgetfulness, wandering, rudderless ships, escaping wind, men turned into swine, the giving and receiving of trouble on the journey through the system.  Using flashbacks and storytelling a picture emerges, of controlled chaos masquerading as "care and treatment".  An alternative universe that requires perseverance or a willingness to conform.  Except for those of us who don't or won't belong.

Where the "severe and enduring" have special teams of people looking after them - psychiatrists, psychologists, community psychiatric nurses (CPNs) and support workers.  The mantra is one of diagnoses, long term drugging and mental health service land.  Remission instead of recovery.  For the national recovery movement has somehow passed us by, although there may be posters up in psychiatric wards that have the words of recovery written on them.  There are also help booklets for patients and carers, funded by pharmaceutical companies eg on how to live with schizophrenia.

In the Stanley Kubrick science fiction film from 1968 there were a series of encounters between the humans and the mysterious black monoliths.  One of the themes was human evolution, another about information being withheld.  It's a film I liken to the psychiatric system, difficult to understand or get to grips with, only difference is that the evolution seems to be going backwards in our sci-fi tale.  In 1970, aged 17, when I first had dialogue with psychiatrists as my mother's carer, and visited the locked ward, I knew it was a system that was alien to me, or I to it.  I didn't believe a word of it and thought I would never be a patient (lol).  Forty two years later and I have engaged with the system in every decade since, in both user and carer roles. Resisting involvement until recently.  Now it's like being up to my neck in a sticky substance, difficult to shake off, the more you struggle the more sticky it gets.

Acute psychiatric wards in 2012 where nurses, who seem nice enough folk, run for cover to the staff room, like soldiers in the trenches.  I have knocked on their door to make contact, daring to interrupt a "briefing" and been quickly dispatched.  Male nurses invading my personal space, putting their arm around me, leaning over me.  Complaints from me flying thick and fast.  Think it must be ignorance rather than intimidation.  But it feels like the latter.  The practice of restraint in the ward setting spills over into their relationships with patients and visitors.  Assertiveness is seen as aggression and a threat to be dealt with.  I've often felt like I was going to be manhandled/nurse handled out of the ward.  It's annoying.

Male and female patients all in together, the acute wards now have very acutely ill people in them, or so I'm told, for others less acute are "in the community".  Patients with complex needs and in distress, a large percentage with drug and alcohol issues, many revolving-door patients, some ex-offenders, others depressed, some not with it at all, one or two requiring 24/7 observation.  Open wards only locked at night.  Police called in almost on a daily basis to deal with absconders or very distressed patients.  Walking into the ward in their full gear, batons, belts, black uniform, like sheriffs in a western.  Coming to restore law and order to the madhouse.

A male patient in the dorm woke up one night to find a female patient coming out from under his bed.  He asked her if she was OK then went back to sleep again.  I raised this issue with staff.  They said that it was right enough and written on the female patient's notes that she had been found in the male dorm.  I also mentioned how she was using the toilet in the corridor of the mixed ward without closing the door.  They took note of this.  A few days later the female patient absconded and police were sent out to look for her.

A few of the patients in the acute ward hear voices and fortunately a worker goes in to visit, from the Hearing Voices Network.  This is encouraging.  Not so positive is the use of forced treatment like clopixol acuphase injection, to manage or control distressed patients.  The side effects of this drug can be severe, apart from the strong sedation that engulfs a person, and it can only be used for up to 2 weeks.  I became aware of this treatment in 2010 and think it is a substitute for ECT, a knock on the head sort of a thing.  Shocking patients back into reality.  Instead it depresses them and can make them even more psychotic.  But more easily controlled and manageable.  Another "useful" tool in a ward situation where the only treatment given is neuroleptic drugs and benzos on request.  Therapies are not available for people in the acute ward.  They have to get well enough to get out of the ward before they are offered any additional treatment to the drugs.  Opting out of drug treatment isn't an option.

If you have the misfortune to be unco-operative or 'non-compliant' or perceived as a danger by the staff then you are under threat of being transported to the locked ward, if you are of the male gender.  Only 6 male patients here.  A forensic ward where procedures are flexible, I call it "making it up as they go along", nice work if you can get it.  They would say it "depends on the patient population".  Same thing in my opinion, changing the goalposts, a destabilising technique.  The ward is in a very old building, not fit for purpose according to reports by a national watchdog organisation.  No rooms with toilets and a seclusion room where patients are locked in, to calm down or dry out.  The only water cooler in the dining room which is kept locked, you have to ask for a plastic cup.  An activities room only open at certain times.  This is where patients can have the use of a pen to write with, if supervised by 2 nurses.  Pens and plastic bottles and straws are dangerous weapons.  They have obviously heard of the saying "the pen is mightier than the sword".

Patients even abscond from the locked ward.  How do they manage it, you ask?  It's when they are on "time out".  They are brought back by the police.  And negotiate their privileges yet again.  The circle of care at the psychiatric hospital.  A merry-go-round of locking up and letting out.  I asked an older locked ward patient what he thought of the RMO (registered medical officer).  This was when we were outside the ward after visiting.  He swore and said that he hated him, for the RMO gave him drugs that made him stiff and impotent.  The patient's friend said "too much information" and hurried him away into his car.

There are around 94 patients still in medium or long stay psychiatric wards, rehab they call it, where I live in a small region of Scotland.  45 of these have been identified as being ready to come out "into the community".   That is, the community of the town or village or countryside that we all live in rather than the hospital community.  Some of these patients have lived in the hospital grounds for a generation and might have tried before to come out, with little support and ended up back in hospital again.  The rehab nurses have said to me that the patients won't manage "in the community".  But I think this is institutionalisation of staff and of patients by staff.  Perpetuating the myth of mental illness and the "severe and enduring" label that expects or ensures compliance and obedience to psychiatry.

Many of the "long-stay" patients smoke for it's something to do to pass the hours away, in solidarity with other patients.  Visiting the hospital shop to buy cigarettes, cups of coffee, fizzy juice, chatting to the staff there, the queues are endless just after opening as patients take time to engage.  Saying hello to anyone who visits the shop, keen to make contact.  There's a restlessness caused by the drugs that will be perceived as illness and even learning disability by some.  Fixed stares and stuttering are other side effects, hampering communication.  A smell of urine permeates the building.  You get used to it after a while.

 

10 March 2012 - System Recovery - Keep Families Off the Front Line

I'm more and more convinced of the need to concentrate on psychiatric system recovery, at the same time keeping carers and families off the front line.  For we have enough to contend with.  Supporting our family members, and often ourselves, out of mental ill health, out of the system and into recovery.  It's not helpful to be labelled as dysfunctional or biologically defective or genetically predisposed to passing on mental illness.

Stuff happens in life, problems in living that are often outwith a family's control.  Relationship breakdowns, physical illness, changes in circumstances, external pressures, generational trauma.  Superman or Wonderwoman don't come to the rescue.  We're not abducted by aliens.  Doing relaxation doesn't help.  Normal life starts to slip away from us.  No escape hatch.  Our choices have narrowed down to one and it's the system or nothing.

A paternalistic psychiatric system that is used to deciding what's best for us, like father figures but without the love, expecting compliance with drug treatment.  "Trust me I'm a doctor"  As if it's normal to put our trust in strangers, people who will resort to force to make us submit.  An alternative universe which is still the reality for the mental patient in 2012.

In Scotland we have the new Mental Health (Care and Treatment) Act 2003 which came into effect in October 2005.  It is a legal document, based on a set of 10 principles, for guidance and accountability.   Principle 7: Respect for Carers says "Those who provide care to service users on an informal basis should receive respect for their role and experience, receive appropriate information and advice, and have their views and needs taken into account.".  It mentions the rights of service users and of carers, who can be "spouses, relatives, friends or neighbours and may not even recognise themselves as carers".

I like how our Mental Health Act recognises the important work of carers and how they should be treated.  However for it to be effective this means that mental health professionals also have to recognise the worth of carers and families who day in day out live with the reality of mental distress.  It's not a 9 to 5 job but a 24/7 responsibility.  In Scotland the carer's allowance is £58/week for over 35hrs a week of caring.  The equivalent of around £1.60 per hour or less.  The minimum adult wage here is £6.08 per hour.  It makes sense for carers and family members to get all the respect and support they deserve for their knowledge and support is invaluable.  And they are obviously not in it for the money or career prospects.

Recently a friend and I have had cause to visit a locked psychiatric ward near where we live, for the first time, in a caring role.  We'd assumed it would be like other secure facilities that we've experienced over the years.   My friend has also been a prison visitor in a pastoral role.  We had hoped for a therapeutic focus and place of safety.  What we found were locked doors, bunches of keys, rules and regulations that appeared to change with the wind, along with restraint, seclusion and forced treatment.  Most other visitors got in the front door but we had to go round the back.  To a door without a bell, dark at night, and through the staff kitchen.  To the dining room/visitor meeting room where cleaners would sometimes mop the floor around our feet as we met with a patient.

No pens allowed in the ward unless supervised by 2 nurses in a specific room set aside for 'activities'. This room only open at certain times and one weekend was out of action for "health & safety" reasons.  Plastic cutlery and plastic cups but not plastic bottles or straws which might be potential weapons.  I asked for a copy of their policies and procedures but was told that these can be changeable, according to the patient population.  Shifting the goalposts, a destablising technique.  There is a seclusion room, otherwise called a single room, with a light switch outside, no toilet or drinking water.  Described as a "naughty step" by the nurses.

The Mental Welfare Commission for Scotland has good practice guidance on The Use of Seclusion and admits that "There is a paradox in providing written guidance on the use of seclusion.".  And says that "The Commission does not advocate the use of seclusion as a first line response to aggressive behaviour. It must only be used in the context of a comprehensive policy on the management and prevention of violence." (italics are mine)  I think that issues of aggression and violence will be exacerbated by the inherent use of restraint, seclusion and forced treatment.  It's a vicious circle, a chicken and egg sort of thing.

The Human Rights Act 1998 Article 10: Freedom of Expression says "Everyone has the right to freedom of expression. This right shall include freedom to hold opinions and to receive and impart information and ideas without inference by public authority and regardless of frontiers.".  I wonder if not having a pen to write with is a human rights issue?  At the heart of human rights is the belief that everybody should be treated equally and with dignity – no matter what their circumstances.  Is it dignified to be secluded in a locked room in a locked ward with no water or toilet?  Does being 'mentally ill' mean that we have less rights than others who are deemed 'mentally well'?

1 March 2012 - Seclusion Rooms in Locked Wards: a Double Whammy

I recently found out about the use of seclusion rooms within the Intensive Psychiatric Care Unit (IPCU) setting in Scotland, a locked room within a locked ward, and it came as a shock to me and no doubt to anyone finding themselves in it for the first time.  For this room had no toilet or drinking water and the light switch was operated from outside the room so could be accessed easily by other patients who weren't secluded or supervised properly.  An unnerving experience for any twice locked in patient who is likely to have been forcibly injected before being incarcerated.  Restraint, seclusion and forced treatment - the unholy alliance.

I have over 40 years experience of the Scottish psychiatric system, of acute and locked wards in different areas, and was unaware of there being seclusion rooms in use here.  It makes me feel that I've somehow missed something important going on, something that is is an abuse of human rights and at the very least an inappropriate procedure for people in mental distress.  I am told that this is rare.  But if it's going on and you are the one under the double whammy it's very little consolation.

"Start with the premise that seclusion and restraint use is not therapeutic, represents a failure in treatment, and causes physical and psychological harm to patients. Research shows that these measures are traumatic for both staff and patients." Alternatives to Restraint and Seclusion in Mental Health Settings, Laura Stokowski.

Healthcare Improvement Scotland describes the IPCU as "locked and highly risk managed environments. While this level of security is essential, the primary function of an IPCU should be a therapeutic one where care and support is provided for people in acute stages of mental illness." (italics are mine).  So we have high risk set against therapeutic environment.  Which one is the main priority?

I think that if a locked ward has a locked room set aside for seclusion then it is going to be used.  Otherwise why have a seclusion room?  A bit like an alcoholic keeping a bottle of whisky in the cupboard just in case.  It might be argued that the building which houses the locked ward is old and not fit for purpose therefore a seclusion room is necessary as a safety valve.  I say that this is a cop-out and demonstrates poor nursing practice and management of patients.  Much easier for staff to lock people away who are distressed than try to engage with their distress.  Easier to drug than to listen.  Harder to get off the drugs and reject the diagnosis.

I have started to research the use of seclusion rooms in other Scottish IPCUs, to see how rare it is.  There doesn't seem to be much information available nationally about this topic.  It makes sense to bring it into the public domain for we don't want seclusion rooms springing up all over the place.  I'm probably exaggerating but better safe than sorry.