Friday, 11 January 2013

Anti-Psychotic Medication

Never let it be said that I am afraid of the big subjects, or those on which my views might make me unpoular... 

A few days ago I posted about disability benefits.  I am not sure I expressed myself all that well - I was writing pre-exam (hurrah, it's over now) so I was slightly distracted.  One might say obsessed - I do have an obsessive sort of a nature.  Everybody I bumped into in the last week or so - casual acquaintances, shop assistants and so on, was informed that I was doing a psychology exam, whether or not they needed to know (none of them did).  Friends heard about the exam many times more than once... 

I don't think I am self-obsessed (although I am pleased with myself for doing some formal education, it has to be said.  I very nearly talked myself into not taking the exam, because I couldn't seem to find the motivation to revise, and I convinced myself that I didn't really need another qualification anyway.  I already don't use the ones I have.  Then I picked up my 'Selfhood' book by Terry Lynch, and read the next section.  It was on self-efficacy - how people with a low sense of selfhood often don't see things through.  So I thought - ah, that's what happening, and as a result I pushed myself on to do the thing). 

So, not self obsessed (but working on it).  I just get something in my mind and find it hard to think about much else, and feel the need to communicate those thoughts.  Yesterday morning I resolved not to tell a soul about the exam pending that afternoon (there weren't many people left within a three mile radius who didn't already know anyhow).  I went to walk the dog, and the first person I encountered said, 'Good luck for the exam this afternoon!'  I mean, I knew the person obviously, but still.  One of my new year's resolutions is to keep more of my thoughts to myself - speak more of things that interest other people (their lives, rather than my own).

Anyhow, I did okay (I think) and have now made up my mind to study in a more organised fashion for the next part of the exam in June.  I enjoyed the process of revision, to my surprise, once I forced myself to get on with it.  I even enjoyed the exam itself (strange, I know) although I found it frustrating that I couldn't answer some of the questions as well as I felt I should have been able to.  It all reminded me of being back at school (the exam was held in a local school) but it was so much better.  For a start, I could see where I was going (I refused to wear my National Health glasses when I was young, out of pure vanity, so was blind as a bat for many years until I got contact lenses).

About disability benefits in relation to mental health (in case I wasn't sufficiently clear the other day):  In my opinion, everyone who needs them should have them, but people should be helped out of the benefit trap once they are ready (and benefits should be held in place as an immediate back up in case they turn out not to have been ready).  And nobody should feel they have to take medication so that they continue to be entitled to disability benefits (I know people in this situation.  It didn't happen to me - I was on benefits for many years without being on medication).  

Anyway.  Anti-psychotic medications.

I am on this subject because something started me off about it on Twitter last night.  Twitter is good for getting you thinking - and for interacting - although you do have to watch the time when you are on it.  I finally switched it off and got on with what I was supposed to have been doing at eleven o'clock last night, which is late for me.  I still got to bed by midnight, so fortunately I am able to function today.

Anyway.  I am rambling again.  I don't have much time left (I am ghost writing a book for a chap and I have to go and see him in a minute) so I will try to present my views about medication in a succinct manner.  I want to be clear about this - I don't want to be seen as anti-medication, but I want people to understand where I am coming from with this.  It is especially important now that I am acting as a voluntary physical health activist for Rethink Mental Illness.  A lot of the physical health problems that the mentally ill suffer are due to the medication.  But this doesn't mean that I think medication is all bad.  And I don't want people to just stop taking their meds - that would be the worst thing they could do, for all sorts of reasons.

Here goes:

Right.  First of all, anti-psychotic drugs don't 'cure' or even treat psychosis.  They are major tranquilisers - like valium.  They were re-branded as 'anti-psychotics' which makes them sound more efficacious than they are.

That doesn't mean they are bad.  It just means that their effect is limited. 

People who become psychotic are treated with anti-psychotics (tranquilisers) because nobody likes to see another human being in distress, and sedating people means that they are more manageable and then hopefully more amenable to treatment. 

The trouble is that the treatment - at least while the patient is in hospital - consists of anti-psychotics, which don't cure the symptoms, just dampen them down.  I believe that in fact no drug could cure these symptoms, because they are not symptoms of a brain disease (as we are led to believe) but symptoms of emotional distress caused by problems within a person's life - basically anxiety, caused by stress caused by money problems or abuse of some kind or all sorts of other issues.  Compunded by misuse of drugs or alcohol, very often (a nurse at a day hospital told me recently that every single medical record he has ever seen has cannabis in there right at the start.  I don't know whether this is true). 

Breakdown is often also to do with a loss of the sense of self.  Obviously, this subject is on my mind because of the 'Selfhood' book I am reading, but I started thinking about it long before that - the Newcastle University exhibition last October 'Reassembling the Self' made me re-consider it in a more coherent way.  Breakdowns often happen to people who are overly sensitive to the thoughts and opinions of others, and usually this occurs in early adulthood.  Medications obviously can't help people find their sense of 'self' or re-assemble themselves, their shattered egos.  They can calm people down, but their use after that is very limited.

The medications have serious side effects, as we know, and people tend not to like taking them, so issues of compliance arise.  In hospital you become a 'good' patient by taking medication (you eventually realise that it is much better to accept pills than to be forcibly medicated on the ward).  The compliance with medication becomes far too important, and continues long-term. 

The reason this happens is that when people stop taking their medication, they often suffer mental breakdown.  This is painful for mental health professionals to see, and difficult for them to deal with.  So continuing the medication is seen as the answer.  However, the reason for these breakdowns is not that staying on the medication keeps you well - it is that coming off it makes you ill.  This happens because the medications work on dopamine receptors in the brain, switching them off and therefore calming people down.  However, the dopamine receptors adapt to the drugs over time and start to work again, at about fifty per cent of their usual function.  This is why people become accustomed to the sedative effects of the drug over time, and why symptoms (mainly of anxiety) sometimes start to creep back.

Often, once people are out of hospital, with some of their problems attended to (for example they have accessed disability benefits, which makes their lives easier) they begin to feel better.   They want to play their proper part in the world again, and they decide to stop taking their medication, because it has dampened down their spirit and has made them thoroughly overweight.  However, this puts them outside the psychiatric system, who all too often won't support them in this endeavour to come off their drugs.  And so itstead of stopping slowly, with medical supervision and emotional support from psychiatric care workers, people stop their medication unilaterally. 

When the drugs are suddenly stopped, the original dopamine kicks back in, plus the extra fifty per cent capacity.  This over-stimulation of the brain causes mental breakdown.  What doesn't help is that because the patient has become non-compliant (stopped taking the drug) the psychiatric profession is less than sympathetic, and thinks that the only way to help is to get him/her started on the drugs again.  But the drugs don't solve the original problems, of anxiety, poverty, stress and so the cycle continues.

This is such a huge subject.  I just want to make another quick point - some people are happy to take their drugs, the drugs work for them.  That's good.  But I honestly believe that as a  matter of human rights anybody who doesn't want to take drugs should not be forced to do so.  They should be helped to try to manage without them.  I am living proof that such a thing is possible - I was extremely mentally ill, on several occasions, and I have taken no drugs for many years now.  There are many others like me, who were given diagnoses of schizophrenia as young people and yet have gone on to lead completely normal lives - they just tend not to advertise the details of their past, for obvious reasons.

There's another point here.  Often the thing you believe does you good, does.  I don't believe that psychiatric drugs are capable of helping me to live the sort of life I want, which probably goes a long way to explaining why they don't.  If you take a drug in good faith, and with trust in the person who has given it to you, it makes a huge difference.  (This is something I hope I will remember if I ever get sectioned again - it is also probably something that will prevent this ever happening to me).

The placbo effect is very powerful.  Lots of other things (not drugs) help other people with their problems - a long walk, yoga, herbal drinks, a healthy diet.  If you believe it is good for your physical and mental health, that helps it work.

One last very quick thing - the issue of compliance with psychiatric drugs has become muddled because mental health problems have been associated with violence.  The last time I spoke to a psychiatrist about my views on forcible medication he silenced me by saying that there had been two deaths in the local psychiatric hospital in the previous year.  Two murders.

Well, it's a huge subject, it's been on my mind for a while, but I can't go there now - have not got time to even summarise it properly.  But it needs sorting out!  People who are violent and who commit violent crimes should not be treated in a hospital with drugs - they should be treated in prison, with whatever means may help them.  Then the hospital staff could concentrate better on treating those who are ill without fearing for their own lives or safety - which would mean no forcible drugging, which would mean the patients take any drugs willingly, the drugs would do them more good and there would be more space and time to tackle the important issue of how the patients will manage post-hospital.  There will be a corresponding increase of trust in the mental health system - it needs it!

I have a lot of sympathy for those who are mentally ill who commit crimes.  I have heard people say that they would never have committed these crimes if they were in their right minds.  But then, in my opinion, an awful lot of crimes could never have been committed by anyone in their right mind - even if they are not subsequently diagnosed with an illness.  There is obviously a link between mental ill health and crime.  But by treating criminals in the same hospital as non-criminals the issues are confused, the system becomes increasingly brutal, and everyone suffers as a result. 

Apparently, most prisoners have been diagnosed with mental illness of one sort or another, anyway, and they are treated better in prison than in hospital.  So I heard, directly from the mother of a man diagnosed with schizophrenia who has been treated in both sorts of institution.

As long as Peter Sutcliffe (the Yorkshire Ripper) is seen to have the same sort of illness - 'Schizophrenia' - as I am supposed to have, there is no hope for me, or for the many others with that awful diagnosis.  There has to be a way of differentiating.  And in my opinion, committing a criminal offence is crossing the line between being harmless to the general public and being harmful, regardless of the person's state of mind at the time.

Obviously, good sense would have to be applied.  There are many people who become aggressive while in hospital, having shown no sign of violence previously - these people are reacting to the fact that their liberty has been suddenly and brutally curtailed, and that they are now living in circumstances that are totally alien to them - where, when they refuse to take a tablet, a 'team' of five or six burly nurses descend, drag them off to a room, pull down their trousers and inject them with a substance they do not wish to imbibe.  What would you do in those conditions?  How many people would remain truly pacifist, treated in this way?  Violence begets violence.  If forcible medication was stopped, hospitals would be far more peaceful places, even without the 'weeding out' of those patients who have demonstrated violent tendencies previous to admission.

Psychiatrists know exactly what they are doing to a person when they label him or her 'schizophrenic'.  It's not acceptable.  This is why many more people are now diagnosed with bi-polar disorder instead - because it is more socially acceptable, even fashionable in some circles.  It does not taint lives in the same way. 

Anyway, I am getting off the point again.  I don't want my diagnosis changed from schizophrenia to bipolar.  I do want it acknowledged that I have recovered from the emotional distress I once suffered,  that my mental state is now my own concern and nobody elses's, and that I don't need a label to hold me back in life. 

As long as recovery is left to go unacknowledged, those who are presently suffering will have no hope for their own futures.  I don't think my own sort of recovery is the only 'proper' sort.  I don't like taking medication - who knows, maybe I would be even better if I took some!  Certainly there is no shame in taking medication of any sort - most people in this country probably take medication of some sort, to ameliorate the effects of mental or psysical pain, or both.  Or self medicate.  People must do whatever they need to do.  People have choices.

I just think the options should be made clear.  People who have been mentally - as long as they are not dangerous - should be given the same choices as anyone else about how to lead their lives, including whether or not they wish to take medication, and they should be given help to stop taking it if they wish to do so.  Cognitive behavioural therapy has been known to work wonders in this regard.

As for people who present a danger to themselves - suicide risks - that is a whole separate category, and one on which I am not qualified to opinionate.  (Is opinionate even a word, or am I getting carried away with myself here?)

I do know that as human beings we all need to learn to be responsible for our own selves - only then will we find a truly worthwhile and meaningful way to live our lives.  We are all equally entitled to follow our own paths, and the psychiatric services - even the well-meaning members of those services - need to take a step back.  It is their duty to keep everyone properly informed of all the risks and benefits of medication, and then provide support as necessarily.    That's all their duty amounts to.  The present system is out of kilter, and by depriving people of power over their own lives it is disabling far more of them than necessary.  It is such a shame, when it would be better for everyone concerned if those people were healed instead.

Conclusion - no diagnosis, please.  No forced medication, please.  Full information given about medication in all circumstances.  Including the fact that it stops you conceiving.  Which is where I started, last night on Twitter, getting all hot under the collar about all this.  And where I will stop.


  1. The things you have been saying about anti psychotics are exactly what I've been saying too! I wrote about my views on one of the meds I've been on here:

    Another post I wrote about how anti psychotics are tranquilisers is here:

    I wish doctors would stop giving the impression that an anti psychotic will cure psychosis. It doesn't, it's a tranquiliser!! The first anti psychotic I was on turned my intrusive thoughts from manageable to unbearable. I still have side effects from them even though I've been off some of them for a few years. Akathisia is one that still drives me crazy at times, never mind my poor family who feel like they're in an earthquake from my legs constantly moving! My IBS has also been attributed to anti psychotics as has the constant (thankfully mild now) nausea and stomach pains.

    When any doctor tells me that the anti psychotics helped me, I feel like screaming. No, they didn't. They made me worse and have left me with side effects that 'could' be permanent. And if any doctor wants to tell me that my side effects aren't as bad as psychosis, I will find someway of getting them to suffer an IBS flare-up at the same time as an akathisia flare-up!! Nothing I have ever experienced as been as painful and distressing as akathisia. I would take 'schizophrenia' any day over akathisia.

    And please yes, let me make my own decisions about medication!! No matter what I thought, I have never been dangerous so why should I not be allowed to suffer with my symptoms if I choose to? I was forcibly injected with my first anti psychotic. Had I been told more than the fact that it was 5mg of Olanzapine which is an anti psychotic, I might have considered taking it more! But when I know nothing apart from its name, strength and type of drug, why would I take it?

    I refused to believe that I could be psychotic! After all, the media portrays psychotic people as evil murderers so I couldn't possibly psychotic, right? Only after researching psychosis did I realise how wrong the media is. A better synonym for psychotic would be confused and I wish the media would start portraying it like that!

    But the media is a whole other issue that I won't get into. I'm getting worked up enough as it is so I'll leave this there and go rant on Twitter!!

    Katy x

  2. Hi Katy

    Yes, sometimes it feels as though you are beating your head against a brick wall, doesn't it? This stuff about anti-psychotics is common knowledge now, and a lot of the rest of it is common sense. And yet, the psychiatric profession still concentrate on the risks more than anything else about mental illness - even though they know that the vast majority of the mentally ill pose no threat to anybody! I am now a physical health activist for Rethink - I have sent them a link to this blog post and I really hope that they re-tweet it (they are supposed to support me in my activist role). It is time that the issues were properly understood by more people - instead of alarm bells ringing when anybody suggests that it is possible to recover from mental illness without the use of anti-psychotic medication.

    Meanwhile, I am going to knuckle down to writing my recovery book. I may be honing my writing skills on here and on Twitter, but I need to have something more to show for my time if I am ever going to earn a decent living. The kids are growing fast and we need a bigger house! (Make that 'I want' instead of 'we need').

    I'll look at your blog posts soon, thanks for pointing me to them. Louise x

  3. I think your in wrong about locking up people with smi's in prison. are you saying gentle souls who suffer a severe mental illness serve the same amount of time in prison as a nasty violent criminal? The most sensitive, intelligent and gentle souls can become extremely violent if they believe their family are in immediate danger, street drugs are very often a factor, some believe cannabis will just relax them and relieve mental stress, it could make them extremely paranoid, disturbed and lose complete grasp on reality. Psychiatrists are always thinking back from the enquiry, wouldn't you?

    Its an unfortunate reality we have to live with I'm afraid. smi's are a different animal. Great Blog btw Phil

  4. Hi Phil

    I may well be wrong, but I was honestly told that you get better treated in prison than in hospital if you have a mental illness. And I thought, if that is the case, then one way of improving treatment in mental hospitals might be to separate the violent from the non-violent patients - then there would be no excuse for forced medication. I am sure some staff get off on the forced medication thing, relish the fight for some reason - it is probably hard for a doctor (psychiatrist) to comprehend, as they are not present when it happens. It is horrible, and I am sure the trauma prevents a lot of people from recovering.

    I don't know. It's a really difficult subject. When I was first sectioned, a nurse brought me a bowl of water in the isolation room to wash with. It was just tepid... I splashed some water from the bowl into her face. I am not at all violent - I remember thinking I was kind of testing to see if all this was real, or just a dream; I also felt rather insulted that I had been brought water in a bowl which was laid on the floor as if I was a dog. I didn't put this in my memoir - I was embarrassed to, I suppose.

    But I'm not a hard person, and I do think 'There but for the Grace of God go I'... Except I honestly don't think I could hurt anybody no matter how ill I was. I was absolutely sure the water was lukewarm before I splashed it at the nurse - I would never have hurt her. A girl who communicates with me on here and on Twitter told me that she heard voices telling her to kill her Mum and Dad - but she didn't do it, although she believed the voices were real. I think there is still a line there even in the throes of mental illness - I don't know for sure, though. None of us really knows what goes on in the mind of another person. I just know that I was as mentally ill as anybody has ever been, and yet I never harmed another human being. If I had I couldn't live with myself.

    (continued in next comment - I wrote too much!)

  5. (last comment continued)

    I think those who do awful things, even in the grip of mental illness, have crossed the line between right and wrong. Which is sad for everybody concerned, including them, but the public still have to be kept safe. So, to me, one of the worst news stories last year was about a 'schizophrenic' woman who had killed her mother, but was let out of hospital after four years, on a community order. Something happened - I don't know whether the problem was with lack of supervision or what, but she then went out and killed someone in London, and stabbed somebody else.

    Now, I think (sorry) that the fault was with the psychiatrists who let her out. She posed a risk to the public, and she should have been rehabilitated like any other criminal before she was freed - not considered to be 'cured' of her mental illness, maintained on medication, and then freed. She needed to be cured of her violent tendencies, not just the mental health problem. I think (again I don't know) that perhaps the criminal psychologists who work in prisons are the best judges of this.

    I don't think the punishment and retributive side of any sentence is as important as the rehabilitative side. I have every sympathy for offenders - they have almost always led the most grim and dismal lives imaginable and it is not surprising that they react with violence. I know that I am very lucky in comparison - I had a very good education in my formative years, I was treated with comptete kindness and consideration for some of my life, especially during my time at Roedean. I may have had some miserable experiences at home, but my life was not all bad by any means. I had parents who loved me, despite their shortcomings. That's probably why I am not violent by nature, and why I have survived my mental health problems and now lead a happy family life. I have been lucky.

    In other countries they treat their prisoners much better than we do, and consequently do a much better job of making them safe to live back in the community when they have served their sentences. I would like to see our prisons improve, along the lines of the Norwegian ones (I read about their system after the Breivik atrocity). I don't think we can afford to pardon the mentally ill who have committed crimes until we are sure they are safe. The time spent in prison is not the point - the point is ensuring the safety of the public. Unless we have a way of differentiating betwen the violent and non-violent, nobody will ever trust the mentally ill, or believe that violence is not a symptom of mental illness.

    Thanks for the comment re my blog, I appreciate it. The blog has its high and low points, like me!
    All the best, Louise

  6. What is worrying about mentally ill people in the community who go and kill someone, is the fact that again and again we read that they went for help saying that they were on the brink of killing somebody but the mental health services didn't take them seriously. This happened to the journalist's daughter as well as the young girl from Doncaster who killed a 12 year old on her way to a party. Why don't the mental health services not listen to them but go shilly shallying about beds not being available? These people often know that they are going to commit a crime. It happened to the daughter of a friend of mine: she was terrified of losing it and killing her mother. I think she harboured a deep seated grudge against her mother. It had never been addressed by the mental health services while she was in hospital. She was drugged and labelled and that was it. In her case the antipsychotic medication was actually making her aggressive. Luckilly the police took her seriously when she went to them for help. She is off the anipsychotics now and back to her normal rational self. She has also worked through her resentement for her mother who was really to blame for her getting trapped in the mental health system and treating her as a " poor Schizophrenic". Anon 2

  7. That's a useful insight - that people know (or fear) that they are about to commit a violent crime. Such people should always be taken seriously when they ask for help - always be treated as a priority. I would gladly have given up my bed in St Anns for anyone who wanted it, during any of my stays. It seems the hospitals cling onto the patients who really don't want their help and disregard those who do! (Obviously I know the situation is far more complicated than this - I needed help, just not the sort that was on offer). I am constantly baffled as to why we don't just follow the example of Northern Finland, and 'Open Dialogue', when it is so succcessful. What is all this about?