Monday, 3 March 2014

my presentation at the Scottish Crisis & Acute Care Network Conference in Stirling on 29 October 2013

Pathways and Perspectives – A Tale of Two Cities
   
Introduction
 
I am going to speak of my experiences as a carer and mother, supporting two sons on the pathway through psychiatric inpatient care, in two different health board areas, in the last 18 months.  Both were in IPCUs and acute wards.  I want to compare and contrast the experiences, highlight the challenges and suggest improvements and alternatives.   

I will speak in particular about the access to acute services for my youngest son in the area where I live, while I will describe the complete pathway in terms of my middle son, from access through to discharge.  I have an ongoing complaint into what happened to my youngest son while he was a psychiatric inpatient so I won’t be talking about this.

Firstly I will give some background information in respect of my family’s story, who we are and where we came from.  Then I will describe something of the two pathways.  Finally I will describe the ‘perfect pathway’ from my perspective.  There will be photos of me and my family on the powerpoint as I speak. 

Growing Up

I was born in Perth in 1952 and have many happy memories of childhood games and play, running free – climbing pear trees, ice skating, going about on my scooter and roller skates, up through the railway station, down the South Inch - swimming, ballet, football, dressing dolls – going out every Friday night for high tea in a restaurant, cakes on a stand, haddock and chips – my dad taking me to the circus, ringside seats, meeting Coco the clown – my father’s fireworks displays on the waste ground outside Pomarium flats where we lived, before the bus station was built – staying at my granny’s, playing with my cousins, visiting my auntie who lived across the road, tinkering on her piano. 

My father, Willie Patterson, was a sci-fi writer with the Daily Express in London, from 1957-1969.  He wrote Jeff Hawke which has been republished twice by Titan Books, in 1986 the year my dad died in London, and in 2008.  Described as a “benchmark in intelligent, adult-oriented storytelling” on Amazon and “Jeff Hawke’s universe is populated with alien species that meet humankind by accident or for commerce, but hardly ever for invasion. Patterson's subtle wit makes the strip's plots and characters as fascinating as they are amusing”.

My mother had tried living in London when I was 8 or so and I remember telling friends I was going to live there.  She got a job, gave it a try but didn’t like the big city.  I remember one occasion, at my granny’s house, when growing up, there was a family confab about my mother.  It’s a hazy memory but I assume she was becoming unwell and had to go to the local psychiatric hospital.  My uncle, a sailor, took me round the scheme on his new scooter, early 1960’s, and it was a thrilling ride, holding on tight, and then I stayed with my granny for a while.  When I was 9 my middle sister was born, then my youngest sister when I was 14.  

In 1969 my father’s contract with the Daily Express was ended.  My mother said it was because he was being pressurised to change the script, add more women.  He wouldn’t do it, his contract was terminated, he didn’t work again.  He stayed in London.  He’d had one nervous breakdown, in Perth, 1963, so wouldn’t have returned home jobless.  He died in London, aged 57 in 1986, and I attended his funeral at Kensal Green.  My mother stayed in Perth.   

In June 1970 my mother had another breakdown and hospitalisation.  Then a month or so later my granny died suddenly, she was 70, so my aunt brought in the social work and my sisters were taken into foster care.  I visited my mother for the first time in the local psychiatric locked ward that summer, aged 17, and had my first experience of meeting with psychiatrists.  They said I had an old head on young shoulders.  I didn’t believe in the biomedical model of mental illness or approve of the way that mad people were treated.

From 1970 until now I have engaged with psychiatry in every decade, either as a patient or carer.  I experienced puerperal psychoses and hospitalisation in 1978 and 1984, making a full recovery within the year, each time, by taking charge of my own mental health.  In 1990 we moved to where we now live.   

Then in 2002 aged 50, at the menopause, I had another psychosis and went voluntarily into the local psychiatric hospital where I was detained for 72 hours and made to take risperidone., getting out of the acute ward after a week.  The anti-psychotic depressed me, I was given venlafaxine, it depressed me more, I took an overdose on impulse, then I was given lithium and was labelled with schizoaffective disorder, having resisted the bipolar one.  I decided to take charge of my own mental health, tapered the drugs, got off them all and recovered, in 2004/5.  Got back to full-time working, achieving another Postgrad qualification, aged 55.

My two younger sisters experienced psychoses at transition between youth and adulthood, resulting in hospitalisation and psychiatric treatment.  They both are accomplished musicians, attended the RSAMD, one completely recovered, the other is disabled.  My 3 sons like me had happy childhoods, experienced psychoses after leaving home in a rural situation to go and study in the city.  My own lived experience was helpful and I supported them in their recovery.  My oldest son recovered after a year, in 1996, got a 1st class honours in mechanical engineering, now works in the oil industry, is an accomplished musician, father, church elder and gentleman.

A Tale of Two Cities – part one

At Christmas time 2011 my youngest son, now 28, who lives with me, was becoming mentally distressed.  He had previously experienced 3 psychiatric inpatient stays, in 2005, 2008 and 2010, exacerbated by physical health issues.  I describe it as a revolving door scenario.  Each stay was longer than the previous, maximum of 7 weeks in the acute ward, antipsychotic drugs for periods then partial recovery.   

However that summer of 2011 there was a major traumatic event in the family that affected us all but my youngest son the most.  He coped well at the time.  But Christmas can be difficult for people who are sensitive and have experienced mental ill health.  My son began to be more stressed and his CPN was on holiday for 3 weeks, he had no other psychiatric support.  There had been a change of psychiatrist and he hadn’t met the new one because he’d been well.  We have no IHTTs where we live. 

My son tried to get help himself in early January as he had suicidal thoughts, and ended up going to the local police station who sent him to a nearby town’s A&E who referred him to the local psychiatric hospital just up the road from where we live.  He drove to the hospital from the nearby town and spoke to a junior doctor in the acute ward where he had been an inpatient on 3 previous occasions, the doctor was unknown to my son and inexperienced.  The appointment didn’t go well.  My son didn’t feel that he was listened to and came away without any treatment.  I had phoned the CPN office to say that my son was becoming unwell.  Eventually my son’s CPN came back to work, I phoned again and he made a visit to our house to speak to my son.  He stayed about 5 minutes and left.  We felt unsupported and had nowhere to turn. 

Three weeks later, my son wasn’t sleeping well and had turned night into day, and he went for a walk in the grounds of the local psychiatric hospital, just up the road from our house.  It was a cry for help.  Sitting on a bench outside the acute ward, waiting for the sun to rise, he then went up to the staff room window in the ward and waved to a staff nurse who he knew, at about 2am on 1 February 2012.  Whereupon they called the police, my son was lifted, went voluntarily in handcuffs to a police cell where he had to strip and put on a blue suicide suit, got tested for drugs (none), alcohol (none) and got taken back to the acute psychiatric ward.  My son didn’t resist any of this and phoned me from the ward at about 5.30am, asking me to advocate at a meeting with the doctor, which turned out to be the same junior doctor, although we did ask for a consultant psychiatrist.  At the time my son described it as an “adventure”.  He wasn’t well.

I went up to the ward at 6am and the door was locked behind me.  However as we were speaking in the reception a nursing assistant came up, unlocked the door and let my son out into the darkness with his suicidal thoughts.  I didn’t know why and still don’t.  I stayed in the ward to speak with a charge nurse, questioning what was going on.

A short while later I phoned down to my house, about a half a mile away, to see if my son was there, and a policeman answered the phone.  I was surprised and asked why he was in my house.  He said they had knocked at my door and my son had let them in, and that they were going to bring him back to the ward but unfortunately the cats had got out of the kitchen and were running freely about the house.  I waited in the acute ward and eventually the two policemen came in with my son and told me to keep an eye on him.  It was now about 7.30am and the beginning of a long day. 

Which ended at 4pm when I witnessed my son being escorted by 2 hospital porters out of the ward in his underpants, bare feet and with a broken hand, into a minibus and up the road to the IPCU.  I wasn’t told about the hand injury until 2 days later.

My youngest son was discharged early April 2012, on a CTO, tapered the 25mgs haloperidol he had been put on, with my support, by a small amount every 3 weeks, and was free of the drug by the August that year.  His CTO was revoked 3 months in.  He returned to university in the September to complete PT his 4th year BSc honours in Sociology.  However he decided to change his dissertation topic from the Scottish MH Act to film analysis, and expects to graduate in the summer of 2014.

A Tale of Two Cities – part two

In December 2012 my middle son, 34, came back home to Scotland to live, after 5 years in Louisiana, USA, where he worked as a petroleum pipefitter.  He was stressed due to a number of life circumstances and on Christmas Day tried to access crisis support at a city hospital’s A&E, in a different health board to where I live.  He saw a duty doctor and also phoned NHS 24 to make an appointment for a psychiatric assessment.  However the duty doctor cancelled the psychiatric assessment and sent my son home to get some rest.  He couldn’t rest, of course, and this is why he’d gone to A&E in the first place.

My middle son had been a psychiatric patient in this city, in 1999 and 2000, which he found to be a positive experience.  On Christmas Day he knew that he needed help and tried to get it but couldn’t.  So four days later we phoned the police to take him up to the psychiatric unit.  He went in voluntarily although stressed and was admitted to the IPCU which had many of the same staff from when he had been an inpatient before.  He wanted treatment, swallowed all the drugs and didn’t try to leave yet was put on a 28 day detention which he appealed at a tribunal and lost. 

In the first few weeks he was given at least 5 different psychiatric drugs together, including 2 anti-psychotics and a mood stabiliser.  I questioned the use of so many drugs and met with the psychiatrist and management to discuss, also other issues that arose.  I was told that the use of drug cocktails was “historical” which I took to mean it’s what they did with all patients to manage them.  My son swallowed everything they gave him but didn’t like the rapid tranquilisation used during the night when he woke up wanting a smoke (he was used to smoking 60 a day when in the US).  I complained about this and kept a close eye on his drug intake, questioning the nurses every day by phone, keeping a record of doseage and frequency. 

My middle son has no complaints about his psychiatric inpatient care although he wasn’t happy with being detained and appealed the CTO, successfully.  He asked me to advocate at important clinical meetings and at the MH Tribunal.  He had no issue with me raising complaints.  My sons trust me and my judgement although they might not always agree with me.  But that’s OK as I don’t always agree with them.  We can agree to disagree and still be in solidarity. 

There was a delay in his discharge due to housing and benefits delays.  I helped him complete the ESA and DLA forms, also chased up the housing application.  After discharge there was a delay in white goods arriving in his flat and he didn’t have a cooker or fridge for a month or so, it was high summer, the milk went off quick.  Also his DLA was delayed and the referral to the day support services took about a month to be acted upon.  This was very stressful.  I kept in contact with social work to chase up the issues.  It wasn’t easy getting through to the right person. 

The IPCU and acute ward nurses answered my questions and treated me with respect throughout the time that my middle son was an inpatient.  It was a novel experience for me to be treated respectfully.  This wasn’t what I’d experienced in my local area over a 17 year period.  I’d forgotten what it felt like to be valued and listened to by psychiatric staff.  I suspected that the psychiatric label I’d been given in my local area affected how I was treated.  And this was confirmed in the psychiatric notes of my youngest son which says “family history of schizoaffective disorder”, “difficult and demanding mother”, “oldest brother has paranoid schizophrenia”, “mother’s mother had schizophrenia”.  A family labelled and disabled, stigmatised and discriminated against, by psychiatry.

And Finally

What would the perfect pathway for me and mine have looked like?

  • Respectful treatment - no labels, stigmatising, discriminating behaviour or psychiatric note writing
  • Responsive crisis support when needed/asked for, whether in a psychiatric unit or at home, person centred and with minimum recourse to coercion or use of psychiatric drugs; personally I don’t like to be forced
  • Psychosis a thing in and of itself, not labelled as “severe and enduring mental illness”; recovery focused treatment, regardless of whether first, second or whatever episode; people recover
  • Joined up working between health and social care, to ensure smooth transitions between hospital and community
  • Alternative ways of working with people in mental distress or emotional crisis; home based treatment, peer led respite services, therapeutic interventions that don’t mean having to take psychiatric drugs; advance statements that are joint initiatives between psychiatrist and patient/person, listened to and respected
 

2 comments:

  1. Chrys,
    I find your article affirming, objective and solution-orientated despite the emotional distress you have endured and how easy it would be to override the above and 'let rip' so to speak. I am a cognitive behavioural therapist, working privately, having spent two years working in a primary care mental health setting (NHS). My family too has an inter-generational history of mental health problems including psychosis, schizoaffective disorder, bipolar and suicide. Sadly, we are not alone, and it appears there are many such families who have had no option but to endure both the burden of mental illness and the accompanying differential care offered by the NHS. Similarly, I have witnessed professionalism, genuine empathy and forward-thinking mental health practitioners. Sadly, I have also encountered negligence and incompetence which has left nearly as big a scar on my family as the presenting problems.
    I agree with your proposed vision of a comprehensive future pathway and thankfully, I am not completely alone in the psycho-therapeutic community to share these views. I will never lose hope of change and intend to do my damnedest (using my profession and the opportunities to effect change) to challenge the gaps in current practice, in and out of the NHS.
    I wish you and your family well, as I wish my own.
    Vicki

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    Replies
    1. Vicki thanks for commenting. I am sorry to hear of your family's challenges with mental health difficulties and psychiatric labels but glad to hear of your work in psychotherapy.

      All the best, Chrys

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