Tuesday, 18 September 2012

My Medical Records

There are lies, and then there are damned lies, and then there are my medical records...

No actually, I don't know that for sure.  And there's the rub - I was mentally ill, I have been diagnosed with schizophrenia, and therefore I ever said or thought (and everything I ever say or think) can be discredited.  Even by me. 

I asked for my medical records a couple of months ago - I have asked on previous occasions and received no reply, but this time I got them.  I had to pay fifty pounds though - apparently the maximum charge that can be made for viewing your own medical history.  They arrived this afternoon, and I read them - not from cover to cover, but extensively enough. 

And now I want a refund. 

The worst thing is that the inconsistencies in the records, some of them really quite glaring, are in direct opposition to things I know (or thought I knew) for absolute certain.  So, for example, I clearly remember sitting opposite a group of mental health professionals, accompanied by my mother, and telling them that I was engaged to be married, wanted to get pregnant, and was concerned about the effects of the Risperidone I was taking on my ability to conceive and on any baby I did conceive.  The reply I received was that Risperidone was absolutely fine to take in both these circumstances.  There was no hesitation, no consultation.  Nothing.

I have a good memory, and I remember that meeting clearly.  However, the notes tell an entirely different story - one where my enquiry about the effects of the medication was taken seriously, and sparked off an entire series of letters - to the drug company, to my GP, to other psychiatrists...and where my medication was changed as a result!  (There are no letters back from the GP or the drug company by the way, but then the notes included a letter stating that third party material had been withheld, so I suppose that might explain that, although there are some letters from others in different parts of the notes).    

I give up.  I can't believe that I am so demented that I have fabricated a whole story without cause -and I know that I never changed from Risperidone to any other drug - but I also find it hard to believe that these discrepancies in the notes were fabricated.  That would imply some kind of conspiracy theory, and I am not paranoid, and I don't want to get that way.  So I am just going to stop thinking about it. 

There are other inconsistencies in the notes and some glaring errors (I was married three times before I met Paul?  I was twenty-three when our eldest child was born?  I think not).  The notes overall paint a picture of someone quite different from the person I have ever been - but then they were written by people who didn't know me particularly well, some of who may have had reasons of their own for wanting to obscure certain matters.  I expected that I would not agree with all I found in the notes. 

And of course, I was very ill, and I may well have forgotten certain things.  I laughed out loud at some of the notes.  I am ready to swear, for example, that I never took another patient's radio - but I do remember that the woman in question was always very angry with me - perhaps that was why.  Other parts made me feel sad - being hospitalised after my daughter was born was the worst time of my life, and reading the notes reminded me of how truly terrified I felt at the possibility that she might be taken from my care.

I almost wish I hadn't asked to see the notes - they have led me to question my sanity (although I quite quickly decided, thank goodness, that I am as sane as I need to be, and Paul has reassured me on the subject, as he always does).  OK, there are different versions of events, but so what.  Those events are all in the past, and are going to stay that way.  The good news is that I am not in hospital now, and there is no reason why I ever should be again.   

I am grateful, as I have said before, that I didn't live a hundred years ago - because I am sure that if I had I would never have got out of hospital, never have had a family.  Never been a mother - never had the joy and the responsibility of all this.  I am so lucky - the notes reminded me of how small and lonely my life was in my late teens and twenties, how few possibilities it seemed to hold, so that eventually I willingly attended a day hospital for years, gave up on ever becoming a proper member of the human race again, swallowed pills and let myself go seriously to seed. 

I escaped from all that to a situation where my life is so full it is bursting.  I gave up my Peer Specialist work recently - I wasn't able to give the children as much of my attention as they need, because the job, part-time as it was, got in the way.  I think I can help the mental health cause more by writing - although I am seriously thinking of sticking to fiction from now on.  You can tell greater truths with fiction, although that sounds like an anomaly.  Truth is important to me, as I have always said - and to find my truth denied in those notes today was hard.  With fiction, I can still tell my story - without denying others the right to tell theirs. 

I am going to be in Newcastle on the 3rd October by the way, for events around the Reassembling the Self exhibition.  I will report back in due course.  Arrivederci!


  1. I would go with trusting your version of the events. The drug company reps spoon feed the doctors all the information they think they should know. Doctors need look no further, and I am quite skeptical that they did investigate further as they claimed they did in your case.

  2. Hi Rossa

    It is all a bit odd. For example, it says in my notes that at the meeting I attended with my mother to ask about Risperidone in pregnancy etc, she asked for the phone number of the drug company to ask them directly for more information. This definitely never happened - my Mum is not one for making phone calls, even to her own children! I spoke to her yesterday asking her what she remembered of that meeting and she was sure I had been told the medication was fine, and adamant that she had never asked for the phone number of the drug company.

    If you knew my Mum, you would know how ludicrous the idea of the phone number thing is. But why fabricate it, or anything else, in my records? The concept seems outrageous to me. Anyhow, my Mum, like me, has other more important things on her mind now than what happened in the past - and if anyone has obscured the truth, deliberately or not, there is nothing to be gained by trying to set the record straight.

    I do go with my own version though - I told the truth in my memoir, and I know that, and will always know it. I am an honest person - perhaps I would have fared better in the past if I had been better able, or more willing, to dissemble.

    Anyway, I hope you are well.

    All the best
    Louise x

  3. Hi,

    It's weird how you've said about reading your medical records from when you were in hospital, I'll shortly be facing up to the notebooks from the time I was in hospital! I'm expecting to have a similar reaction to the one you had though, a case of 'I don't remember that' or 'Did that really happen?'. Hopefully though as I know that I wrote them, I'll know that they're not lies or 'fabricated evidence' but are either things I've forgotten about or delusions. Already been through the first notebook (which was bad!) but I just want to go through all 5 now and get it over with.

    I think that the things you don't remember are things that were either misunderstood by nurses or things said by other patients that had to be recorded even though the nurses knew it wasn't true. One morning in hospital, I was woken up by a nurse so she could do a risk assessment on me. I had no idea why they were doing it, turned out that the previous night I'd been talking to another patient and whilst we'd been having a laugh and a joke, the other patient described something that someone had jokingly done to her. I laughed and said that I'd punch her the next time I saw this person if she wanted. The other patient laughed, fully aware that I was joking. However, the nurse who was sat at the table with us hated me and wrote than I was feeling violent and was threatening to punch another patient! The nurse who did the risk assessment on me the following morning knew full well that I wasn't violent but was obligated to do the assessment anyway! I had been there for nearly a year at that point so the nurses knew me well! Needless to say, I was careful with my words around the nurse who hated me! (Actually she wasn't a nurse but one of those care assistants or auxiliary staff, whatever they're called!)

    Keep going with your writing, I've noticed that people are very appreciative with helpful books and articles etc! I've pointed a few people to your book and blog as it helped me so much!


  4. Acceptance is the only way forward. Go do some voluntary work where you were in hospital if still live nearby and see what the staff have to deal with. Acute patients can be a danger to themselves and others and can only be treated to the best of the staffs ability at the time. No one wishes to be that way but now you are stronger you will see it for real not what you wish to remember. forgive for doing their job at the time and you will only then move forward. Tough bt true. It has helped me to move forward from my past. My friensds and family told me what i wanted to hear as always scared I would regress but productive advice and learning to forhive has set me free.

  5. Thanks, Katy, you are very supportive. Try to be dispassionate when looking at your notebooks. They are only a reflection of your thoughts and feelings at a certain time in your life - if you can detatch your emotions you should find them interesting. Time changes us - when I looked back at my University essays a few years after my degree, I couldn't believe I had written them. Was I ever really that erudite?!

    Some things in my notes I do remember now, and as you said, the authors have put their own slant on them. The funniest thing (maybe I shouldn't find this funny) was a letter from one of the doctors saying that I believed that if I had sex with my brother in law I would turn into my sister. He wrote 'She seems to want to do this very much'. I could almost hear him sniggering (and I don't blame him!) I had forgotten all that... So embarrassing! But what I wanted to do 'very much' was not the sex - that would have been easy - but the transformation into my sister - who was so confident and outgoing, so much fun, everything I wanted to be. There is no point in amending my notes to explain that - let them snigger!

    There is a recent review of my memoir here http://www.amazon.co.uk/product-reviews/B0057P6M46/ref=cm_cr_pr_top_recent?ie=UTF8&showViewpoints=0&sortBy=bySubmissionDateDescending from an ex-nurse who was once a student at St Anns (the hospital where I was treated). She says she 'struggled to remain compassionate in a system where the mentally ill are not well treated'. And this is the crux of the problem - there is cruelty in all sorts of institutions, and fear and mockery are common reactions to mental illness - we need to keep fighting the culture, to change it.

    L x

  6. Hi Anon

    I have been working in the mental health system recently, and I do understand that staff have a difficult job. However, there are places where people suffering psychosis are treated without restraints, forced medication etc and there is evidence that they recover better this way. Look at the 'Beyond Meds' site or Ron Unger's 'Recovery from 'Schizophrenia' and other Psychotic disorders' for recovery stories. Look at Soteria and the Finnish mental health system.

    This is why I write this blog - not because I harbour resentment, but to improve the lot of others in the system. I promise you that I do not regret any of my experiences - I have learned through them. I do feel though, that there is vast scope for improvement in the mental health system. I think a lot of the problems are caused by the treatment - the restraint, forced medication, all makes people feel attacked or convinced that they have done something wrong and are being punished. It confuses them. If somebody simply spoke to them, explained the situation, it could make a big difference.

    For example - one entry in my notes said at one point that I refused medication, but accepted when it was explained that if I didn't take the pills I would be injected. If that had been explained each time I could have been spared a lot of pain and humiliation - it took a while for the realisation to sink in. There was very little attempt at explanation about anything - some of the staff seemed to relish their roles as 'enforcers'. I know that some level of institutional abuse is inevitable - unfortunately some humans are cruel and the nature of institutions can harbour such people - but we should always try harder to be compassionate, always aim higher.

    Anyway... all the best. Louise x

  7. I know that my son will never ask to see his medical record. Firstly it would only retraumatise him. Secondly we know that the notes can only be a tissue of lies because doctors were scrambling to protect their own backs. They faled to diagnose delirium due to a badly infected toe, They faled to diagnose NMS due to 10mg of olanzapine they had put him on. They faled to diagnose rebound psychosis due to much too rapid olanzapine withdrawal. They faled to respond when I rang for help when I saw my son collapsing and getting suicidal. The consultant went to enjoy his August bank holliday instead. My son nearly succeded in killing himself: the police and A&E saved his life. When the consultant saw what happened, he started falling appart. My son was quickly diagnosed "severly mentally ill" and the diagnosis will follow where ever he goes. He contested the diagnosis and the tribunal swallowed all the lies told by the doctors and the judge didn't allow me to tell what really happened. His medical notes are not worth the paper they are written on. All my son wants is to put this episode in his life behind him.

  8. Hi Anonymous
    I haven't heard from you for a while - I do hope your son is continuing to improve. Poor thing - he really went through a traumatic time. You are right - he should stay as far away from the mental health system as he can; he has not been well served by it. L x