Wednesday, 15 March 2017

Patient Abuse- speaking out, one year on..

I haven't known how to write this blog post, but I knew the time would come when it felt right, and I've decided that time is probably now.. I don't want pity, I just want to take control back. I want to express what happened to me on my own terms, because it's nothing to be ashamed of or embarrassed about (despite how it might feel) - after all, it was not me who did anything wrong!!!

It's 1 whole year since I was assaulted by a nurse. I'm not going to skirt around it at this point, I'm just going to say it as it is. I was treated abusively by someone who I should have been able to trust.

It all happened 365 days ago when I attended hospital for a routine neurology appointment. My appointment had been difficult for various reasons and I was massively struggling with the hospital due to post-traumatic stress resulting from some distressing experiences during my inpatient stay. It all became overwhelming shortly after my appointment and I collapsed in the waiting area and had a number of fits in close succession.

I bashed my face on the floor, was nearly treated for epilepsy (which I don't have), was hoisted off the floor by staff who it seems hadn't hoisted anyone except in training, all in front of a really really packed waiting area. I was taken into a side room and had loads of monitoring done, was thrown around a bit having my cardigan taken off me (due to a high temp), and the nurses were convinced a crash trolley was needed. I was far more aware than most of the staff thought, and bounced in and out of convulsive seizures for over 40 mins before a decision was made to take me to A&E/Resus (where my previous worst experiences had taken place). That was all difficult, but everyone had my best interests at heart- the worst was yet to come.

I got down to Resuscitation accompanied by a doctor who knew me well and she said she'd speak to the staff and make sure they knew what was going on and what to do and not do. Her and the emergency department junior doctor were incredible. They talked to me reassuringly, caused me no additional stress and talked to me a bit about what they'd been up to recently to put me at ease etc. They were great. Unfortunately others involved weren't.

As a result of seizures, I ended up laid face down on the bed, with my head to the side. I was frightened. I was left alone with no interaction for long periods, which I was finding difficult due to the environment and past experiences in that very room. Things took a nasty turn when a nurse came over, I heard her flicking through my notes (which obviously detailed all my diagnoses and 10 week long hospital stay with the same condition), and then she said 'who the hell fakes a seizure?!' before proceeding to try to get a reaction out of me and get me to 'stop messing around'. The nurse lifted the head of the bed to vertical, causing a crushing pain in my back and tearing pains in my abdomen. She bent a pillow around my face, smothering me. I remember being in that moment, desperately focusing on the sound of my monitoring trying to work out whether my oxygen level was still ok, and trying to keep calm. She was doing anything possible to get a reaction, but I was completely paralysed and powerless to do anything about it. She must've thought that if she was right I'd deserve it and she'd catch me out, and if she was wrong I'd be unconscious so would never know and she wouldn't get caught, but although my seizures are entirely real and genuine, they are non-epileptic and I remain completely aware throughout.

The consultant was later also completely inappropriate about/towards me, getting impatient with me, particularly when I was hyperventilating (which is actually something that happens sometimes as I come out of a seizure before things settle). The second I opened my eyes, he was asking me about making arrangements for my transport home. He also insinuated that I wasn't genuinely suffering. The second I was awake I was bombarded with questions and expected to do things I wasn't capable of.

You expect medical professionals to be educated about and understand your condition. You expect them not to jump to conclusions about you and your disorders. You don't expect them to think they know better than your specialists. You expect to be safe in their hands. You expect them to treat you with kindness and compassion. You expect them to do their best for you. It's rare, but unfortunately that's not always the case and abuse does happen.

A few days later, I told my psychologist what had happened. She was horrified and said she would have to inform someone, and did so with my permission.

The next I knew, a policeman rang me. It had been escalated several times within the hospital, and then the police had been informed.

I hadn't informed the police directly, but I did know that what had been done to me amounted to assault and was very wrong. I knew I had a duty to protect other patients from experiencing anything similar, which is why I told my psychologist and why I later made a formal complaint, but it was still really scary when the police rang.. I'd never really had anything to do with them before, and just the call and having to talk about what happened shook me up a bit.

The policeman came round having already done some investigations. He took some extra details from me, before returning to the hospital to interview and investigate further. He rang me regularly to keep me informed and was amazing throughout the whole time. I felt believed and supported and was treated with kindness and respect throughout.

Ultimately, it was my word against the word of the medical staff. I felt that theirs carried more weight, that I would be disbelieved, and the imbalance of power seemed so unfair. At the time of the police investigation, no-one was admitting to being the nurse in charge of my care, and although the consultant was identified, he hadn't broken the law, and didn't divulge who the nurse was. It felt very much like people were covering each other's backs. The police investigation was eventually closed due to insufficient evidence, but not due to lack of effort on the part of the policeman and he had informed the detective senior to him etc due to the seriousness. It turns out it's very hard to pin anything on anyone when you can't give a 100% definite description of the person who physically attacked you (my eyes were closed at the time, as I was seizing, and I wasn't sure enough that it was the same person who later 'looked after me').

The hospital's response to my complaint was pathetic and deeply distressing. I was distraught reading it- it was awful. It did get referred on to the safeguarding team, and I was offered a meeting with the consultant involved etc, but I've never felt up to taking things further because of the significant trauma involved. At this point, both members of staff were named and identified, but due to a lack of hard evidence, and difficulties with my own mental health, it just wasn't possible to pursue the matter further. It's on record though, and hopefully the people involved will have learned from it, and I seriously hope nothing similar will happen again.

It was a horrendous experience, and has really messed me up. As I mentioned above, I was already struggling with (quite severe) post-traumatic stress as a result of hospital experiences (including a few others where I was mistreated to an extent), so this experience was the last thing I needed. My post-traumatic stress sky-rocketed. I had my PTSD screening a few days after it happened with the psychologist I was already seeing, and there was no doubt that my score was sufficiently high to indicate clinically significant post-traumatic stress; I was scoring very highly in so many areas.

My PTSD has remained significant. I have real trust issues and see danger everywhere. I find medical appointments very difficult and hospital environments are challenging. I fear everyone and everything, because as far as my body and I are concerned, danger lurks places you wouldn't expect- someone I should have been able to trust really hurt me.

Where do things stand now? Well, I'm receiving ongoing psychological help. I'm suffering chronic back pain, that I have been too frightened to have properly assessed until recently, so I don't know how long-term/permanent that is likely to be (I see a physio specifically for my back for the first time next week, to see whether they can help- if not I'll need further investigations). I avoid emergency departments like the plague and feel I need to be accompanied for safety during a lot of appointments.

I refuse to continue to be a weak victim who stays silent out of fear. Yes I was abused physically, verbally and emotionally, but I refuse to be completely broken by what I've been through. They got away with it, and that's hard, but carrying fear and embarrassment and bitterness hurts me not them. I won't ever forgive them I don't think, but if either of them ever finds this, a sincere apology would mean a lot to me, and to be perfectly honest, I think I deserve that having not publicly named and shamed you!

Please don't tell me to move on and forget about it- I am trying, but it's hard to put something like this behind me, particularly given the other things I have been through. Please don't tell me I have overreacted, because you weren't there and don't know how it was for me, and I already give myself a hard enough time about it. I'd be so grateful if you could please just support me through the different stages of my recovery. It's been a year and it still feels recent in a way, but I hope with time I'll be able to process what happened and move on without it affecting me. I'm working on it.

21 comments:

  1. Thank you for sharing your story. I have Non Epileptic seizures and have experienced some poor treatment myself. Not to this extent but I did have a nurse drag me up off the floor and shout at me about being a "silly girl". I retain some awareness of sound during seizures and once heard my boss saying "you had to do it while I wasn't there, didn't you. Don't you dare have a second seizure". I've had doctors and nurses telling me to stop seizing as if I'm in control of it and a paramedic once gave me serious bruising from a sternum rub that got no response.
    You didn't deserve any of this treatment, none of us do. There needs to be much more understanding of NEAD and other functional illnesses. Thank you again for sharing your story xxx

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    1. Gosh, I'm sorry to hear of your experiences 😔 FAR too many of us are abused/mistreated by medical professionals - it's scary.. I don't know why there are people out there who think we're 'putting it on'..😖 I wish there was far better education on NEAD.. The specialist neuropsychologist I was seeing had been trying to get the emergency department where my abuse happened to agree to training, but they weren't open to it, which angers me further when it was clearly so badly needed..🙄 I've had bruising from a sternal rub too- hurts like hell! Couldn't believe how hard they do things when they're getting no response!! I hope you've recovered, or are recovering from your bad experiences, but I completely understand if not.. Take care and thanks so much for reading- it can't have been an easy read for you given your own experiences.. xxx

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  2. hello.jess.i was so sorry about your assault .i was abused as
    a child .different adults .only too aware what a night mare it
    has been for you.i have m.e. lot health problems..we have
    spoken on e.mail before,i do a blog.http;//mark-kent.webs.com
    please reply if you would like. too.this monday i have a
    hospital appointment for my m.e,very very very WELL DONE for
    talking about it jess.. mark

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    1. Hi mark, I'm so sorry to hear that you were abused! I hope you've had support to help you cope with your experiences.. I remember talking to you- I hope you're doing ok :) and I hope your hospital appointment goes ok! Thanks so much for reading and for your kind comment, Jess x

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  3. You are sick in the head, there is absolutely nothing wrong with you Jess. And FYI, if you are having 'convulsions' but dont have epilepsy, it isnt a seizure and it is completely fake. Youre a waste of NHS resorces.

    P.S keep up the great work with the blog, always makes me laugh
    xxxxxxxxxxxx

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    1. I literally can't believe you'd make such a hurtful comment, particularly on the blog of someone you know is vulnerable and has mental health problems.. My seizures are NOT fake!! I lose all control of my body and often go unconscious. Yes, they're partly due to mental health, as I've talked about in previous posts, but they are NOT behavioural and are not under my conscious control in any way. If you bothered to research NEAD, you'd find all the information points out that they are not put on. Even though I don't feel it due to severe depression (I presume mental health conditions are undeserving of help too?!?!), I am deserving of help and care and NHS resources. I don't use resources unnecessarily. I manage my seizures away from hospital on a vast majority of occasions. I have worked incredibly hard to try to reduce my seizures, with a number of different professionals who have felt they could help me. Comments like yours make me want to just shut down my entire blog, but I also know there are a lot of people out there suffering with the same/similar that need to read stories like mine to feel less alone. And this is meant to be my space to speak openly about my symptoms, which can be difficult. I really don't appreciate your comment and find it VERY upsetting that you would judge and laugh and make ill-informed comments. I know what it's like to be 'truly ill'- do you honestly think I'd have been admitted to hospital twice in the last couple of years with nothing actually wrong with me?! I hope I never come across you or anyone like you while in a non-epileptic seizure, and I hope no-one else does either, because you're cruel and have no understanding of the condition and the suffering it causes! I would never wish my conditions on anyone, but I do wish you could experience just one non-epileptic attack so that you could understand the horrendous experience. Please inform yourself on conditions in future rather than making ill-informed hurtful comments!!

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    2. Richard Alexandar4 April 2017 at 19:38

      Dear (not) anonymous, you are not only ignorant but nasty as well. NEAD is a condition very well-known to good quality neurologists, neurosurgeons, neuro-psychologists, and many other highly qualified health professionals. Do us all a favour and grow up.

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    3. To the commenter who believes they have a right to comment; what exactly qualifies to give your opinion in this forum? are you a medical professional in some remit? are you a family member of an individual with a longstanding significant or severe health condition? are you a trained mental health professional? perhaps a social worker? It is clear from your comment you are not an English major as your understanding of the definition of seizure is in need of clarification. In case you are wondering a seizure can be caused in many was other than epilepsy including temperature raise, electrical stimulation migraine and chemical abuse as well as a host of other factors. Since well educated medical professionals with years of specialist training beyond the 'basic' 6+ years of medical school understand this condition to be to complex to unravel and treat chemically, when it is triggered by emotional and intellectual distress they group all these under the catchall term NEAD. Since they understand this to be a physical condition triggered by the intellectual/emotional distress often created by past bodytrauma your 'in your head' comment is technically correct, but somehow I dout you meant of understood it that way. In fact I somehow out you understand much of life in many ways, In fact you know what, It is people like you that make people like US who are educated, who do everything we can to find a way to live more an live better, have the issues we have! So you know what, I sincerely duot you meet any of the criteria I suggested above which would, in my opinion give you the right to have an opinion such as you do, therefore I think I am done wasting my time dressing you! To the person sharing with the blog, WELL DONE keep going! you are on a journey to find your self and every step is taking you closer! dont let people who have no place in your life be anything more than a brick you are stepping on in the road!

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    4. Hi there anonymous,
      you've contradicted yourself there. You said Jess is sick in the head but then you said nothing's wrong with her. Isn't mental illness something wrong? And something that needs treating? Jess doesn't love spending time in emergency departments, she isn't choosing to fit. Gosh you just sound so amazingly stupid. I wish you could experience this issue yourself and have people make comments like that to you.

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  4. You should be fucking ashamed of yourself. Wasting the time of resources of people in the NHS the way you do is disgusting. I know exactly what your 'performances' are like, and to bad mouth the AandE staff the way you have is repulsive. The sooner you grow up and pack this in, the better. You really really need to understand what it is like to be truely ill and then you would realise that you aren't.

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    1. I literally can't believe you'd make such a hurtful comment, particularly on the blog of someone you know is vulnerable and has mental health problems.. My seizures are NOT fake!! I lose all control of my body and often go unconscious. Yes, they're partly due to mental health, as I've talked about in previous posts, but they are NOT behavioural and are not under my conscious control in any way. If you bothered to research NEAD, you'd find all the information points out that they are not put on. Even though I don't feel it due to severe depression (I presume mental health conditions are undeserving of help too?!?!), I am deserving of help and care and NHS resources. I don't use resources unnecessarily. I manage my seizures away from hospital on a vast majority of occasions. I have worked incredibly hard to try to reduce my seizures, with a number of different professionals who have felt they could help me. Comments like yours make me want to just shut down my entire blog, but I also know there are a lot of people out there suffering with the same/similar that need to read stories like mine to feel less alone. And this is meant to be my space to speak openly about my symptoms, which can be difficult. I really don't appreciate your comment and find it VERY upsetting that you would judge and laugh and make ill-informed comments. I know what it's like to be 'truly ill'- do you honestly think I'd have been admitted to hospital twice in the last couple of years with nothing actually wrong with me?! I hope I never come across you or anyone like you while in a non-epileptic seizure, and I hope no-one else does either, because you're cruel and have no understanding of the condition and the suffering it causes! I would never wish my conditions on anyone, but I do wish you could experience just one non-epileptic attack so that you could understand the horrendous experience. Please inform yourself on conditions in future rather than making ill-informed hurtful comments!!

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    2. Richard Alexandar4 April 2017 at 19:40

      Hi Jess, thank you for your blog. This anonymous character is just a troll with time to waste. Try not to let it get to you. Take care.

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    3. Oops, anon, you forgot to leave your full name and photo. Silly you! Unless you're actually a coward? Yes that sounds more like it. You are the one who should hang their head in shame. You lose.

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    4. Dear Anonymous

      You are either a troll, who really does need to get out more and smell the fresh air if this is all you do with your time. Or you are someone that is in desperate need of being educated about this debilitating condition.

      So, if you either wish to attempt to take someone on by personally attacking them, or you need help with that ignorance of yours (unfortunately I wouldn't be able to help with your potty mouth) please feel free to get in contact with the author with details on how I can contact you directly.

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  5. Russ Wobbly Parker4 April 2017 at 19:34

    Anonymous very brave of you to abuse someone over the internet. No one in their right mind would want this condition. May I suggest that in future if you have nothing nice or constructive to say you keep your DIRTY POX RIDDLED MOUTH SHUT
    Russ Parker from Oxford

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  6. My experience of when it first happened was the paramedics went against my mum and grandads forceful comment not to give diazapam as it makes me worse and my seizures more violenet. This happe ed when i was in cornwall away for the weekend with an ex partner now and my home town is 2 hours away. The paramedjcs thought it was epilepsy because i was convulsive but then as 5 minutes had gone by the thought i was faking as i would stop and start. The would be force in their words "Emelye you need to calm down NOW you are NOT helping yourself" "Emelye its getting silly now you need tos top and breathe" thry kept saying things and i was shouting in my head becayse i was so angry with them and not able to understand what was happening and why to as i was in an ambulance on the way to the worst known hospital in Cornwall. The paramedics had me in A&E and was layed in a hospital bed for 30 minutes before i could be seen. In this time my parnter at the time had to stand with them and hear them say i was faking them and would be going out drinking after i was released. He wouldnt dare stand up for me as he was in shock and worried for me. I still had more seizures there and they just left me to it.
    I was then seen to and the doctor got me to calm down with breathing exercises and then my mum and grandad came and i was them able to verbally respo d and told them everything the paramedics said. My grandad who had worked for the NHS for 40 years had kicked off big time to the doctor attending me. He demanded i was to be allowed to go as he was disgusted with the paramedics behaviour and when i saw them and pointed he immediately approached them and told them how they felt especially for ignoring the wish of not giving diazapam. He had reported them to PALS and further up higher and were then sacked within 2 weeks.
    I have had another experience with paramedics where they have known of it and a little as to how to go about them in how to calm people with NEAD and was grateful as i was getting hurt from the seizures at the time. Now i just avoid them since i have learnt so much about how my seizures are and why for how people are to help me.

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  7. Hi im so sorry on what they put you through people dont understand on nead,im a sufferer myself and its really hard,i have people who think im a faker but i wish they could be in my body when i have a seizure to see what it feels like.

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  8. Dear anonymous.

    Who the hell do you think you are? Are you a neurologists/physiologist... No your a pathetic coward who has to much time on their hands.. her seizures are not faked she is not putting this on... She is amazing and brave to write this blog!! You have basically said anybody with nead "fakes" it well I can tell you now we all stick together so you got a problem with Jess you have a problem with all of us.... She has every right to the NHS!! The only person laughing here is us laughing at how stupid you sound!!! Your ass must be pretty jealous of all the shit that comes out of your mouth.

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  9. I've abused so many times by hospital staff I couldn't start to list them. My own neuro couldn't understand why I couldn't talk after a seizure, paniced me, I slipped into dissociation, blacked out, and being so frightened I started 'fight or flight', he put security gurds on me, holding me down till I came round, but the guards didn't leave till I was fully compentent. In a ward for gastroenteritis, I complained to the auxiliaries about being so noisy, they waited till lights went down, then came to my single room, circling my bed, getting closer while they threatened me. I finished up nearly standing against the bed head trying to escape until they'd had their fun and left-that's ONLY 2

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  10. I've been abused so many times I couldn't start a list-once my neuro couldn't understand why I couldn't speak after an epilepsy seizure, he got into a bad state, I went into dissociation, blacked out to protect myself, seems I went into 'fight or flight', came round with 2 security guards holding me down, they weren't dismissed till I was fully competent, on a ward with gastro enteritis I complained to auxiliaries about the noise they made, they waited till lights went down, came to my single room, circled round my bed getting closer, threatening me, till I nearly standing against the head board, they finally left after they'd had their fun. Shouldn't have complained? when you're ghastly sick the last thing you need are pillowfights with screams in the corridor, shouting comments about patients up and down the corridor.

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  11. Dear 'MEisonebiglie', I am fairly sure you're the same person who abused me in person, so it's very brave of you to now abuse me online 🙄 And as to your description of my tweet- 140 characters that you've been able to judge supposedly so much from- you seem to struggle to differentiate gritted teeth 😬 from a grin 😃, much like you struggle to differentiate someone faking and someone suffering with involuntary debilitating symptoms. I'm not moderating your comment through because it's just cruel. Oh and ME is not 'one big lie', but I don't think you listen to people when they try to educate you- you're clearly quite happy to be ignorant and abusive. I know you think I deserved it, but do you at least agree that you bent me backwards? Please now leave me alone- you've caused me enough pain already..

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