Sunday, 11 November 2012

Rethink Mental Illness National Members' Day 2012

I returned quite late last night from Nottingham.  I had travelled up with my friend on Friday night, and we had stayed overnight at a hotel in preparation for the Rethink Mental Illness Members Day on the Saturday.  I had fond memories of this event from last year, when it was held at the Russell Hotel in London.  My friend, incidentally, is a Trustee of the charity - I won't divulge her name here as I don't know whether she would appreciate that.  Thanks to her, I got to travel up for free (she will get her expenses reimbursed by the charity) and I shared her hotel room for just a small subsidy.

The best part of the whole weekend was - coming home, of course!  I was homesick almost as soon as I left on Friday morning - so just arriving home last night and walking into my bright warm comfortable house, filled with the people who I love so much - was blissful.  My younger daughter had been baking, and presented me with a tray of biscuits, each with an iced letter, spelling out the words, 'Welcome back!'  It was almost worth going away, just to come home.

However, I do wonder what I am doing sometimes, with this mental health activism, and why.  I wonder if it is damaging to me personally.  On a very basic level, I would have had a much more peaceful and relaxing weekend at home, and on a more complex plane, the potential harm done to my social life and career by identifying myself as a person with schizophrenia is possibly quite serious, although not quantifiable in any way.  (The most important factor is of course the possible effect on my children of being identified as the offspring of someone with a diagnosis of schizophrenia).

On the way home, after we had discussed the day's events, my friend suggested that I should write something else for a while - a nice romance, perhaps, or a children's book.  She said she thought it would be better for me.  She may well be right.

The thing is though, that I have no real choice.  I just feel compelled to carry on with this work.  I have never had a career anyway, prior to identifying my vocation as a writer (possibly because of the damage that was done to my psyche by the infliction of the diagnosis in the first place) and I have never been one of those people who is impressed by the social standing of others or who wishes to pretend to be something I am not in order to impress other people.  And I still maintain that my children are more likely to benefit from all this than they are to suffer from it - as long as I remain firmly rooted in the home, loving and nurturing them, and don't get carried away by my wish to improve the mental health system and end up neglecting my own family's needs as a result.

I suffered a major disappointment yesterday - I learned that the Schizophrenia Commission have not recommended that the label be abolished or changed as I had hoped.  (The report is not due to be published until next week but I feel no sense of loyalty that would prevent me from publishing this 'spoiler'). 

I was not actually surprised to find out that the label has not been changed - I suspected as much by the fact that after asking me to write a case study (of my own case) I was asked if I would mind if it was 'tweaked' to reflect the fact that some members of the Commission do not agree with my view of the damage done by the diagnosis of schizophrenia.  After some thought I rejected my instinct towards compliance and wrote back to say that if they did use my case study I would prefer the wording left intact.  They agreed to use the case study as I wrote it, and apparently it has been included in the report (although I think anonymously.  I am not sure, I have not seen it, but one of the other Trustees who I spoke to yesterday dropped a big hint to this effect).  Although of course, it might be removed after I have published this blog post!

So I had an inkling of what the outcome of this report would be - and it was confirmed as soon as I saw the title of Robin Murray's talk at the meeting yesterday - 'What next for the Schizophrenia Commission?'

So the Schizophrenia Commission will continue - having already let down the people they are supposed to be helping.  The parts of the report that Robin Murray disclosed yesterday say nothing that anybody didn't already know - that there are problems in the system and in the use of medication and so on and so forth.  As there always have been.  I listened hard, and I didn't hear anything ground breaking in anything that he said (although I was surprised at the extent of his criticism of mental health nurses, speaking of how they become hardened over time. Of course they do, by having to earn their living in a system that provides so little in the way of care.  He also said that psychiatrists are not as good in private hospitals as in the NHS.  Interesting, that - I wonder why the recovery rates are so much better in private hospitals, in that case.  And I can't help wondering whether, if Robin Murray himself ever became mentally ill, whether he would choose to be treated at the Priory or by his local NHS Trust.  I'm pretty sure I know the answer to that.  Although the head of the Royal College of Psychiatrists just might have a slightly different experience than others in the mental health system).  I am not trying to be bitter and bitchy, by the way.  I just can't help it.  I am deeply disappointed.

I was actually close to tears yesterday on at least two occasions.  The first occasion was when listening to a poem read out by Peter Cox, who won the Pringle Prize for Poetry.  The poem told how it felt to be an outsider from society, about how others' perceptions impacted on his view of himself, how he couldn't even enjoy a sunny summer's day without feeling guilty for his brief happiness.  When Peter was given his prize, he asked humbly if we would like him to read out the poem, and there was hesitation from the award giver and the Board (proceedings were already running late).  Fortunately, several members of the audience filled the gap by calling out 'Yes!' and Peter was allowed to read his work.  That hesitation though, made me feel physically sick.

Later, I almost wept again when I realised that my suspicion that the Schizophrenia Commission had rejected their opportunity to effect any real change for sufferers was true.   Luckily I didn't disgrace myself (or conform to anybody's expectations of volatile behaviour from a 'schizophrenic') by actually crying in public, but it was hard to prevent myself from doing so. 

I know that so many lives could be changed, so easily and simply, by simply changing that word to another term.  Thought disorder - or, if that is not sufficiently 'serious-sounding' for mental health professionals, psychotic disorder syndrome or some such nonsense, as suggested by a member of the audience.  Anything, any change in the name, would reduce the stigma of diagnosis at a single stroke, and would improve the outlook and chances of recovery for sufferers. 

Changing the name would be an act of simple human kindness, and keeping the name is a cruelty.  An unnecessary cruelty, that benefits nobody except the psychiatrists themselves, and the rest of the mental health industry, who consequently get to continue to enjoy their power over other people's lives.  I can't imagine what else their motivation can be. 

I am staggered that they haven't effected the change.  Robin Murray was questioned on the subject by a member of the audience and he couldn't produce a coherent reply - he stuttered and stumbled over the issue, saying there were differing views, even claiming that, 'The Schizophrenia Commission doesn't have the power to say one way or another' (really, Sir Robin?).  Eventually he told us that although the diagnosis had been changed in some countries it wasn't going to happen here at the moment, but that maybe in a few years time, things would be different.

And the cynical part of me was thinking - oh yes, maybe after a few more years of enjoying the power and the glory (and the pay, and the public recognition) of being Chair of the Schizophrenia Commission - maybe when he has milked that for all it's worth - maybe then Robin Murray might get around to changing this damned label and thus alleviating the suffering of all those who have been led to believe they are less than human - that they are schizophenic and therefore 'other' and incapable and powerless and hopeless and helpless.  And helping too the young people who have been recently captured by the mental health system - preventing them from losing their hopes and their lives to the malicious diagnosis of 'schizophrenia'.  A lot of human beings could be spared a lot of suffering from that name change.  But not now. 

Not yet.


Let them eat cake.  


  1. I can totally understand your anger but don't forget that there are some "schizophrenics" out there that want to keep the diagnosis. Some do find it useful; I don't, you don't but others do. Changing the name of a diagnosis isn't as simple as merely saying "It's not called schizophrenia anymore, it's now Thought Disorder". As there are so many different types of schizophrenia (schizoaffective, schizotypal, paranoid schizophrenia for example) then it would be a huge amount of work to reclassify the new named diagnoses. Even if it were a case of just changing the names, not the classifications, you will never please everyone.

    Schizophrenia is a tough diagnosis to have at any age and yes, it can be worse to have at a younger age, but I personally believe it would be better to fight for the opportunity to be officially recovered from schizophrenia. I wouldn't mind the diagnosis as much if I had the chance to officially recover from it. After all, cancer sufferers go into remission before recovery and no doctor can guarantee that the cancer will never come back. Yet cancer sufferers can and do go into the recovered category without the guarantee of never having a relapse. I personally believe that fighting for a recovery "clause" in the diagnostic criteria would be much more helpful than a name change. But that is my personal opinion. As much as I am entitled to it, I don't expect everyone to agree with it!

    It's good that you are still getting out alone. I would recommend you keep doing this. It is also good that you loved getting home at the end of it! But maybe you should leave off the activism until the New Year to take a break from it? Concentrate on making sure you have a good AND relaxing Christmas time and only when you feel refreshed, then start the activism again. Or even take a year off. Have a go at a children's book. Learn a new skill. Something different. A year is not a particularly long time and taking a break to relax is not a bad thing. If you then decide not to restart the activism then don't. There will be others who will continue the fight. I'm not saying you are not important (I believe you are important!) but I'm saying if you decide to take a break or leave it altogether you shouldn't feel guilty. At the end of the day, diagnosis name aside, you suffered from a severe illness that has the potential of returning. It can be a selfish illness in the respect that you need to put yourself first but it is more selfish not to put yourself first. If you fall ill (hopefully you never will but IF) again, it will take a lot more of your time away from your family than if you put yourself first in more trivial matters. Try and remember this.

    But as I have rambled for too long I shall leave it here! I hope you don't think I am preaching at you!


  2. Hi Katy

    Good to hear from you, and of course I don't mind what you say or how you say it. I remain well aware of the need to look after my mental health, never fear!

    I think you are right about the need for acknowledgement of 'recovery' when it occurs. But I do believe - I know - that changing the label of 'schizophrenia' would improve the chances for recovery. And recovery should be where everybody's attention is focused - it is the single thing that matters most about any illness - the opportunity to heal from it.

    As for the work it would take to reclassify all these 'diseases' - maybe it is unnecessary. There is not much differences in practical terms between all those diagnoses. I know plenty of people who have been changed from one diagnosis to another. In fact, Robin Murray himself has told a story of how, in a hospital, he asked crossly who had diagnosed a certain patient with schizophrenia. 'What idiot gave him that diagnosis?' he asked. 'He is clearly bi-polar'. And his registrar checked the notes and told him - 'That idiot, Sir, was you.'

    If all these 'diseases' were simply looked at as manifestations of emotional distress, if people bothered to find out how and why the patients were in distress, would that not be an improvement? And then treatment could be approached impartially.

    A common misperception is that mental health diagnosis matters because the diagnosis helps treatment - this is simply not true. The medications are interchangeable between all the conditions. The patient ends up on the drug he responds to best... Oh God, it is a long long tale, and it seems that there is very little I can do to make people understand. But I do intend to keep on trying. As you say, many other people think in the same way, and carry out excellent work in this field - I am not alone. But I don't think anybody would be helped by me giving up at this point.

    Anyway, enough said for now. I am glad to hear you are ok - I was a bit worried about you a week or two ago, but it sounds from your very clear and coherent writing that you are flourishing mentally!

    All the best, Louise.

  3. The bastards. "Schizophrenia" is psychiatrists' bread and butter, of course. (And why must he be called "Sir Robin? Why? Because he's part of the establishment. What a lot of window dressing.

    "Changing the name would be an act of simple human kindness, and keeping the name is a cruelty. An unnecessary cruelty, that benefits nobody except the psychiatrists themselves...."

  4. I am all the way with you Louise. The psychiatrists who label you a "schizophrenic" don't have a clue what caused the problem in the first place and they have neither time nor interest in finding out. That's why everybody gets medicated with antipsychotics and told "that's it mate, no future for you: it is a lifelong illness". "Rubbish!" I say. I could have been easily diagnosed as "schizophrenic" at the age of 18 when I started hearing two voices discussing me in my head. luckily my parents never asked for any medical help and I escaped the label and the antipsychotic medication. I recovered thanks to their loving care.I am pretty sure I will never have such a breakdown again because I learned my lesson: I turned around and looked at my failings and how I had brought everything upon myself by my reckless behaviour. I will never again get stressed out by what life is throwing at me-getting stressed about things is a waste of time. I cry if things are bad and that's all right; there is nothing to be ashamed of. I am grateful to God if things go well and count my blessings; I eat a healthy diet; I sleep well, take plenty of exercise and enjoy everything I do etc and that is exactly what you are doing and I am pretty sure you will not breakdown again either. But yes, Freakshow is right too: some people find the diagnosis helpful-it gets them benefits to start with and they don't have to look any deeper into what caused their problems and nobody needs to feel guilty. You have only to read books like "The centre cannot hold", "Henry's demons" or "Eyebrows and other Fish". In all three of those books it is obvious to me what caused the psychotic breaks but it is not quite obvious to the people who write these books. Some vaguely suspect the truth but don't really want to face it. Henry's parents don't want to face the fact that they neglected their son's emotional needs and like you, he found solace in canabis. The same goes for Elyn Saks and Anthony Scully who was abused while in care. If you haven't read "Eyebrows and other fish" by Anthony Scully, please do-I couldn't put it down.

  5. I will order myself a copy of 'Eyebrows and Other Fish' right now, thanks! Cool title...

    Thanks to both of you for your comments. It's good to have friends. I also count 'Freakshow' - Katy - as a friend of mine - she has a lot of understanding of the issues. It is just a shame that some people find the diagnosis helpful, especially if it is for financial reasons - I can't help feeling that the label degrades people and that nobody should have to accept that.

    Nor should anybody have to feel guilty of course - not my parents or Henry's either. Mental illness is just an experience - part of the lessons that life has to teach us. I am honestly grateful for the lessons I have learned so far - and I readily acknowledge that I still have a long way to go!

    1. I so agree with you again: I learned so much from my breakdown and it made me into a much nicer and more understanding person. Looking back, it definitely was a blessing in disguise. Naturally nobody should feel guilty and yet they do. Some parents would find it very difficult to admit that they unwittingly pushed their child into psychosis. A friend of mine would rather bear the cross of having a "schizophrenic" daughter with dignity than to admit that she put her daughter under unbearable pressure during her divorce and then sided with the psychiatrists and got her forcibly drugged for years. Luckily the story has happy ending.

  6. Firstly, thanks to Julie Leonovs for putting link to this on the Stop Psychiatric Diagnosis Harm facebook page. Interesting conversation. As a doctor, psychotherapist, author, activist, provider of a recovery-focused mental health service in Ireland, I am in no doubt that 'schizophrenia' is poorly understood by doctors, as is the whole mental health field in general. IN my opinion and experience, many (most?) doctors miss the emotional and psychological aspects, these do not appear on the medical radar system. Hence, in my opinion, the experiences that become swept under the umbrella of schizophrenia are also very poorly understand by those entrusted with responsibility for the care of those having these experiences. Terry Lynch

  7. Well, thanks Terry, and Julie. I will take a look at that Facebook page.

    1. Dr Terry Lynch is so right when he says that doctors miss the emotional and psychological aspects in schizophrenia. When I tried to explain to my son's psychiatrist where my son's delusions stemmed from, he looked at me blankly as if he didn't understand why I was telling him all that and told me to leave it to the "Experts". People who end up in hospital are fed drugs and left to amble around without any psychological or emotional support whatsoever. I had never had any dealings with the psychiatric system before and was totally baffled by it all. It looks as if psychiatrists are not taught psychology in medical school: they actually believe the genetic chemical imbalance thing and are unable to think out of the box. I think that the label of "schizophrenia" is terribly damaging and it follows you around wherever you go.My son has tried to escape it without success:

  8. Replies
    1. I deleted this comment because it had a typo, and it's impossible to correct typos on comments! Basically, the law now states that your son can't be asked any questions about his medical history prior to being offered a job. So that may help. Although he would have to be creative with the truth when explaining gaps on his CV.

      A chap called 'Skyblue' who sometimes comments on Rossa Forbes' blog (and I think she has a link to his blog too) writes about how he managed to find a way around his label eventually. Basically, he took a menial job and worked his way up.

      I hope that helps. Also, though, the fact of being treated as mentally ill (even though his psychosis was caused by an unrelated infection, if you are the same Anon who has commented on here before) may have damaged your son - which is why I recommended Terry's book in the comment below. I have a feeling that you mentioned your son's lack of confidence before - I still battle with that, which is why I bought myself a copy of 'Selfhood'.

      All the best, Louise

  9. Perhaps Dr Terry Lynch's book 'Selfhood' might be useful to your son? I ordered it last night on Amazon, I will post a review on here when I have worked through it. It might take some time, I think you are supposed to devote half an hour or so a day to the exercises in the book, over a period of time.

  10. Hi Louise, thanks for getting "Selfhood". I feel it is helpful to do some work on the book on a daily basis, I feel that a little work every day is better than say 2 hours one day and nothing for the rest of the week. I don't set a figure regarding how much time a day, I think that is best left to the individual. Losing one's sense of self is in my experience a very common feature of the distress that becomes labelled as schizophrenia. Raising one's sense of self is a process that takes time and as much gentleness as possible, often involving small steps rather than giant leaps, as loss of self is in ways a defense mechanism I feel, and we don't easily let go of our defence mechanisms. Regards, Terry

  11. Professor Sir Robin Murray was my former psychiatrist

  12. Was that a good thing or a bad thing? (sorry, I don't know which Anon you are, so I don't know your story). From what I have seen in the mental health system, psychologists are generally more understanding and helpful than psychiatrists (but then medication never worked for me, so perhaps I would think that). Most of the psychiatrists I have seen over the years have been very uncommunicative - the last one was much better. I should imagine someone of Sir Robin's status must have done some good work over the years...I certainly hope so!