My fear of medication that prevented me taking it when I had PNI came about because when I was 17 myself I suffered from anxiety and phobia and this was in the early 1970s when the mental health system was not as it was now. I was admitted to an old style rambling mental hospital/ institution as they were then as this was before the mental health reforms.
A 17 year old would never now be admitted to such a place for what I was suffering as even though I was unable to go out much of the time – agoraphobic and emeticphobia – it now would be treated at home with understanding child mental health workers and therapy and perhaps light medication.
But this was not my story then.Because of the agorophobia etc which was little understood then, I was offered no help and tried to battle through on my own and tried to continue to go out
But when I did it was mostly at night with my friends and I was then taking recreational drugs to deal with my anxiety about going out ( cannabis and speed) as this enabled me to go out socially
–so I was regarded as a criminal and when homeless I shoplifted for food ( I will get onto this later )
and when arrested had a small amount of cannabis on me so was also convicted of possessing cannabis – such a small amount that theses days you would not even get a warning for but then I was seen as a drug addict and a criminal and taken through the court system as you are a minor in law as far as prosecution until you are 16, at 17 you became an adult as far as being prosecuted is concerned so you went through the adult courts – I do not know if this has changed now ?? i think it has.
So I also have a criminal record due to this which when working with young people as a teacher and youth worker has to be declared even though now this was now over 38 years ago!!
And one of the findings of the courts was that hospitalisation should be considered!
Even for what was even then a minor offence. As in those days it was mainly ‘pop’ stars like the Rolling Stones etc that where known to take drugs or angry young men, it was so unusual for an ordinary young woman to be caught with them therefore I was considered by the courts that I must be both ill and bad. The fact that I was unrepentant during the court case and said I took theses drugs to help me get out as I suffered agoraphobia did not help as they saw this as further evidence of my being an undesirable person.
I had also run away from home several times and while by the time the court case came through I was back home - but as a homeless person with no money at the time of the initial arrest for cannabis and shoplifting I was living with a local prostitute having before then been homeless and on the streets of London as a runaway, I had returned to Basingstoke where my parents lived then as I was literally starving but because of the situation at home ( believe me I had good reason not to want to go home) I was still unwilling to go home.
And this woman kindly took me in off the streets – she was very kind and actually treated me as her daughter although her own two were under 5 at the time but she was a well known local prostitute and someone living with a man just out of long term prison which of course did not do anything for how I was seen during the court case.
Also she did not have the money to feed me hence why I shoplifted for food and was caught as I was not very good at it!!Therefore part of the reason I was hospitalised I believe now was not just due to the phobias I was suffering but also due to me be seen as a ‘out of control’ criminal young woman and their were no borstals for young women then – the only place you could go was the young women’s section in prisons like Holloway.
It was noticeable that the only young women under 18 in the hospital I was admitted were young women and girls – the youngest 15 – who had been through the courts for shoplifting, recreational drugs etc like me. I was not hospitalised straight away but put on 3 years probation with the proviso that I see a psychritirst at the local huge psychriatirc institution – Park Prewit now closed as it was in the 80s considered to be ouot of date and barbaric when the NHS reforms came in.
He decided that because I also suffered phobia and what he considered to be a rebellious personality – I hated going to see this man he was entirely unsympathetic and I disliked him on sight- that it would ‘do me good’ to have a spell in the local psychiatric institution! I did suffer phobic anxiety and was a very confused and distressed teenager but theses days hospitalisation would never even be considered for my symptoms.
There at only 17 - and a very immature 17 I was put in a ward with adult metal health patients, some as old as in their 80s who had been there for years and many had been on the sorts of medication that was around then ( which are not the same as you can get now at all) and consequently had suffered nerve damage from them and had the various ticks and strange walks etc that these heavy anti psychotics caused after many years use and this on top of displaying bizarre and upsetting behaviour which was due to their original illness and not always controlled .
As you can understand this was very frightening for a 17 year old- I was already phobic and I became very frightened I would end up like theses older people and frightened of the medication they were on and refused medication, so I was sectioned so they could give it to me anyway. I should never have been in this long term ward as even then mental health had moved on a little theses were the victims of a past of barbaric mental health treatment that even by the 1970s had changed. However they put me in this ward because as I was still under 18 and classed as a child I had to have a room of my own and those days their were few single rooms and this ward had the only one available.
While I would say now and then that I was not very ill just a teenager with a few problems I was a bit rebellious and refused drugs and just wanted to go home and indeed tried to leave (escape!). So it was decided that my behaviour was a problem too as well as my phobic symptoms and that this was a sign of psychopathy – a label to follow me for many years So as an alternative I was put on some very heavy drugs that would never be used now especially for a 17 years old and
I then I refused ECT, Electric convulsive therapy and my parents backed me up, which was always given for phobic anxiety then as they had no other treatment,
So I was then put on an experimental alternative that consisted of giving me forcibly a cocktail of drugs including Barbiturates, largatile, Nardial, , MAOs, major tranquilisers now know as Anti - psychotics and for a time lithium, and trycylics ( trycylics are the older anti depressants which in themselves are actually OK and still useful and used still even now for those who can not take the more modern SSRIs but together with all the other drugs I have since been told this was a very dangerous combination and I was very lucky not to have suffered serious side effects and not had my memory and functioning damaged for life.
This experimental 'treatment' was known as Deep Sleep Therapy (or Deep Sedation Therapy, DST) and has now been banned in Australia and many other parts of the world as it was given to young people who died due to it! I do not think it has yet been banned here, but it will NEVER be used again
see:
en.wikipedia.org/wiki/Deep_Sleep_Therapy.
www.zipworld.com.au/~aamca/cvag/cvagp3.htmDeep Sleep Therapy (or Deep Sedation Therapy, DST is a barbiturate-induced coma – but what I experienced and what they do not say in the literature about it was that you were not only given barbiturates but other drugs in frightening combinations in the hope that while you were asleep- in a coma – theses other drugs would work on your original illness
In Britain – unlike Australia - we were unlikely to die as all our psychiatrists train as medical doctors before they specialise in psychiatry so they knew enough to know that you can not keep someone artificially asleep on these drugs continuously without their organs shutting down so they roused us ( their were others on this treatment ) at least once every other day and got us up to walk around and eat ( as unlike Austrlia they did nto force feed us we were required to eat and drink when we were woke up, but I lost loads of weight) it is this I now believe saved my life!! And probably my memory and sanity!!
I did not know anything about DST when I was a 17 year old having it and I did not know that it had killed people in Australia for many years later - not have I ever been able to talk to a British psychiatrist who admits it was given to people as young as me in British hospitals up to the 1980s – although it did as there are som well hidden evidence that it did..
I know believe that this has been covered up by the British NHS as there is no information available on it happening in Britain this late on publicly or on the net. I even wrote to Mind who said it was discontinued in the 1950s isn Briton – which of course it was not! As I am living proof.
In my records it only says I was admitted between certain dates and had sedation – no real record exists for what I really experienced and I have always wanted to take action on behalf of myself and the others who suffered this is Briton but just can not find the evidence apart form what I know happened to me.
Without knowing what I know now at the time I experienced this ‘therapy’ as barbaric, abusive, traumatic and truly frightening. I can not tell you the feeling of hopelessness, lack of control over my own body, mind and life, lack of any rights and true horror I went through during my time on DST.To cut a long story short, I was given DST for 4 weeks in the end which is a short time to have it as many have this for far longer.
The way I managed to have it cut short was that one of the reasons I was given it was due to my lack of cooperation over having ECT and taking other drugs so after one last attempt to escape – when they woke me up one day to walk around and eat I escaped out the window in my striped hospital PJs – those days you were not allowed your own clothes, you were put in distinctive striped hospital PJs so that if any ‘patients’ wandered or escaped we were easily recognisable and brought back.
I was still very dopy from the drugs otherwise I know I would have found a way to disappear back to London and the streets – but they picked me up and I was instantly put under by an injection in my bum which they held me down to do and put back on DST
So I realised the only way to get out of there was to fully cooperate so I became the model patient!! I was so nice did everything I was told and told them every day I was woken up how much better I was feeling and how their DST was really helping.
Consequently my DST lasted for less time than others and I then was held for another 10 days after the DST stopped. As when you wake up from DST you have a complete memory loss – or I did!
I could not remember who anyone was - not even my mum who I love and I had deep gaps in my memory which exsist even today and memory problems ever since. I believe I was acutely damaged by this treatment, and it may have contributed to my PNI and mental frgility - but I can not prove it.( other abusive things happened in that hospital to others that I observed and to me such as I was assaulted and once by a patient but once by a Italian nurse who trapped me in his room and tried to rape me - but I will not tell this here because it is my fear that what I am writing about is overload and I will not be beleved as it is that all this really happened to me as this was a different world from mental health treatment today!!) After about 10 days with me saying I was now fine and continuing to be a model patient and thanking them profusely I was then discharged to go home with a pocket full of drugs ranging from MAOs, trycylics, and barbiturates.
I never took another tablet – nor did I go home!!On the way to the bus stop I threw every tablet container over the hedge of a field – I do sometimes worry even now that a cow or something ate them I hope not!!!! – and I hitched straight to London where I disappeared into Squats and the underworld of London and hid like a mouse there for about 2 nearly 3 years – so scared I was of ever getting in the clutches of the mental health system again.
My story does not end there but I will tell the rest briefly.Of course when I left the hospital I was still on probation so I was truly ‘on the run’ which is why I had to live in squats, I could not get benefit and if I worked, work for cash as I was too scared if I was known to the authorities I would be taken back into the system. Eventually I did reconcile this as after about two years or so I contacted the authorities and agreed that as my probation was now spent - or near spent - they would consider it finished and not do anything about my absconding from probation as long as I did a course of ‘useful training’ for work !
I fell on my feet because I wanted to do fashion design and at that time their was a scheme called the TOPs ( Training and Opportunities Scheme) which as an ‘ex – criminal’ mental health patient I had no difficulty in getting and could go to any college that would take me.
I opted for the London College of Fashion and was lucky enough to get in. I never used my training there but this was a wonderful time for me in 70s London where my fellow students are many top designers today and I used to go to parties etc with designers that are now famous – went to a couple of parties at Vivian Westwood’s shop ‘Sex’ for instance (she the sold bondage gear as fashion gear at that shop) and during this time met many now famous people but often only briefly – but it was a great recovery period for me .
My journey into health and ‘normal’ life was not yet over however - I was not yet quite out of the woods mentally as while my ‘phobic anxiety and rebellious behaviour I had originally been admitted to Park Prewitt seemed over I was still totally traumatised by the DST.
It had not left me without after effectsI have huge gaps in my memory of my childhood and I have suffered memory problems ever since which as I am getting older arte getting worse – I believe due to the combination of drugs I took during DST.
I know many will say as they get older their memory gets worse and they have ‘senior moments’ but this is different and I have been having senior moments since I left that hospital at 17!! I was also still very frightened of authority, unable to cope with ‘normal life’ and scared in general.
So to cut and even longer story short I went to a therapeutic community which while this had other repercussions it did offer intensive therapy and enabled me once I left to train as a teacher lead a ‘normal’ life.
If you read all this above it will seem like most of my life has been spent in trauma but this is not so.
I am now 54 and my phobic difficulties that eventually led to DST began when I was about 14 - and by my early 20s I was mostly phobic free, had left the therapeutic community, was working as a youth worker and training as a teacher, I qualified, worked for many years as a teacher and a youth worker I met my husband in the meantime and have now been married for over 20 years. despite the set back of PNI I have a lovely daughter - soon to be 18 and have led a productive life ever since!I had no more mental health difficulties until I had PNI when I was about 38 and have been relatively OK since although this experience left me fragile with memory problems and the PNI increased my mental fragilities.
But on the positive side it also left me with a lifelong concern for those who suffer mental health difficulties without which I probably would not have started this forum which is now a charity.I have never written this is in full before and did so to explain why I urge women with PNI to try everything they can to alleviate the symptoms of PNI including medication – yet I did not take medication myself.
I hope you now see that why I did not as you may be able to see why I have such deep routed fears/aversion to mental health medications.
However I do mean it when I say that I had PNI 17 years ago and things have changed so much and if I needed medication now I would probably take what is on offer now as getting through PNI – or any mental health issue – is very hard to get though mental health issues without modern medication
If people feel this story is inappropriate for this forum I will remove it .But my other motivation is that I am considering starting a web site to reach other British victims of the awful DST as I have never been able to get in touch with the others I know exist who had it at the same time as myself.
Veritee
