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    Thread: Do I cut contact with the NHS?

    1. #21
      Active Member FadeToBlack's Avatar
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      I am Not an Axe Murderer; I am a person with an Illness

      What gets published about people with Schizophrenia in the media generally only seems to be shown and talked about when they have done something terrible or even just suspected of it – it’s the word they use - Schizophrenia.

      Despite common held beliefs, a lot of people with this illness do live in everyday communities. They can in fact make meaningful contributions that seem to largely be ignored by most people - in favour of the worst examples of humanity that are probably more prevalent amongst people without this diagnosis in modern society.

      If you were told that the person writing this was a University Graduate, had graduated with lacking support during a psychotic break and finished a degree despite being unwell, that may provide a different context to the perceived nature of people with this illness and how ‘seriously’ it’s treated by under funded Trusts. You wouldn’t have expected them to have run a small business, or find themselves being the ‘office temp’ that became a member of a senior management team in five years of working through different roles within a respected company. You wouldn’t expect them to have been able to afford a property near London - let alone look after it and themselves properly. They wouldn’t know the writer of this even has Schizophrenia, as it’s not socially acceptable to say that and you probably wouldn’t believe the person if they told you. People can talk about depression, stress and anxiety in mental health campaigns, but is this where we draw the line because it’s less prevalent and too extreme? This is missing the point.

      We are not what you may think we are. It’s a relapsing condition that people live with, and it means that every so often hospitals and support are needed to allow some breathing space from it all. Life is stressful like for anyone else, and whether medication works well or the person still has residual symptoms they have to deal with, nothing seems to make this an acceptable illness to even talk about in everyday circumstances - period. Even family when discussing the issue do absolutely everything to avoid even speaking the word it’s so stigmatising. If I was diabetic and needed insulin to correct my body from a malfunction, I would not have to hide it and keep it a secret from everybody. The truth is for a lot of people, the medication we have allows people to stabilise and yes, in some cases recover or go into remission. It’s apparently just an imbalance of chemicals in the brain, and perhaps your environmental stressors that caused it growing up - as well as some faulty genes for good measure.

      Some of the nicest people I have ever met have been in acute mental health wards. Despite being so ill that they act on things - myself included, I strongly believe that I have had the best conversations with people I don’t know there than in the ‘real’ world. For every stay, there is a small community in that moment where in the main, it’s ok to talk and be open about this. Once you leave, the rules change. If like me socialising is difficult because of certain things that have created these issues, isolation is generally how the world deals with this problem. I mean it in both senses of how you could interpret that sentence. We’re isolated from society as pariahs – even by those campaigning for mental health issues through being ignored, and we’re also on our own and missing each other’s company as no one else wants to value us. Like I said, if I told you as a working professional that I had this illness, you either wouldn’t believe me or we would never interact on a personal level again. I work and outside of that I only exist on the periphery of the Internet in just one of a few online communities that only have each other.

      The mental health services promote recovery in sessions with patients, and have to fight to convince them this is possible despite the odds. I think it’s clear why people with this diagnosis find that hard to believe. This issue undermines their support networks, and the things that other people take for granted disappear from under their feet – a lot of the time at a relatively young age. There are many people like me who have to hide in plain sight and keep quiet despite the suffering inside. We try our best to live like other people, but with the knowledge that if you met a person to be with - whether as a partner or socially, you would have this terrible secret to tell them. I had friends before, I know what happens when you tell them you have Schizophrenia – they disappear.

      You may wonder why I am discussing this issue and I can assure the reader that I am not a self-promoter who thinks they should have some gratification. I won’t even tell you who I am. Members of the cohesive community I belong to online told me to write this, as they want me to tell you that your perception is wrong. That’s how we feel and it’s creating a health crisis in my community that we get treated this way and I quote, “Lack meaningful representation – even from mental health campaigners”. I hope you can change your mind about this illness, and not allow the generally derogatory use of the label in news broadcasts by irresponsible media sources to allow you to believe that in your perfect world, I am not standing next to you on the bus, being dangerous. I am just unapproachable due to wholesale prejudice against a condition I cannot help but have. Sorry it wasn’t the insulin, I guess that was my fault.
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    2. #22
      Active Member FadeToBlack's Avatar
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      Publicity is the only way to bring about change in my view. I went through the same as most do from what I have heard, where after diagnosis I was told you will be on benefits for the rest of your life and we will pay for your existence so that you are less of a problem. After waiting for months with no where to live, I had to return to the family home until I earned enough to leave properly.

      There are people who speak up from what I have seen, but this always seems short-lived, and not exposed widely enough to have a real impact on what people perceive.

      I have pasted it above. It may well not be suitable, but it was written at 4am very quickly as I was not happy after reading what so many people thought about themselves because of what they have experienced - myself included.

      I doubt we could get that kind of representation. There are good people in the NHS but unfortunately I think those on the front-line are too stretched to be of any use.

      A lot has changed, for better or for worse. I think developing a new approach would take a really significant effort on the part of all service users.
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    3. #23
      Forum Admin Mischief's Avatar
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      Lots of issues here to write about here. Time doesn't permit me giving a full response immediately. However I thought you might be interested in this bit of publicity the hearing voices movement received today on the NBC News in the USA - (I occasionally watch the USA news just to catch up on current events):

      Last edited by Mischief; 01-12-18 at 11:22.
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    4. #24
      Active Member FadeToBlack's Avatar
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      Just an update.

      They finally gave me a new care coordinator.

      I don't understand why they said they picked a guy to be my care coordinator. I am not sure if this makes a difference or not.

      My anger with them has subsided somewhat now, and I will speak to them. Apparently they told my mother they were very worried, but she said I was back on meds again and I would consider engaging with them.

      I think I might give this new guy a go, and see how things are. I hope he is more reasonable, approachable and understanding.

      Me and my last coordinator did not get along well. I hope she is not upset that I told people this.
      Last edited by FadeToBlack; 06-12-18 at 19:07.

    5. #25
      Senior Member blacksmoke's Avatar
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      That is great news FTB. Hope this one works out. like you say you need to see how things go. I shouldn’t worry too much about the ex- coordinator don’t forget this is a job they do. "Water under the bridge" aka- best let it go
      Boldy going forwards as i couldn't find reverse..

    6. #26
      Forum Admin Mischief's Avatar
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      Quote Originally Posted by FadeToBlack View Post
      Just an update.

      They finally gave me a new care coordinator.
      That sounds an encouraging development. How long did that take?

      Quote Originally Posted by FadeToBlack View Post
      I don't understand why they said they picked a guy to be my care coordinator. I am not sure if this makes a difference or not.
      Can you explain more about what they have said to you. Did they give you some reasoning? If so, what do you think of it.

      Quote Originally Posted by FadeToBlack View Post
      My anger with them has subsided somewhat now, and I will speak to them. Apparently they told my mother they were very worried, but she said I was back on meds again and I would consider engaging with them.
      Are you okay with them speaking to your mother?

      Basic relationships, such as getting on with the people who support you is so important. One thing which really frustrates me is how services/service staff make out that you're the difficult one, rather than looking at their own behaviour (I'd suggest in a high number of cases it is their behaviour) or just accepting that you don't get on with someone. In life we don't get on with everyone!

      Quote Originally Posted by FadeToBlack View Post
      I think I might give this new guy a go, and see how things are. I hope he is more reasonable, approachable and understanding.
      Sounds good, can you also use this time to really personalise your own supports so that you get the support that you want, delivered in a way you want, by the people you want? Perhaps this guy could help you arrange this? Make sure he knows that you're a real expert in what works best for you!

      Quote Originally Posted by FadeToBlack View Post
      Me and my last coordinator did not get along well. I hope she is not upset that I told people this.
      She might learn from the experience and have gotten a lot out of it. Future clients of hers might benefit significantly from what you've done!

      It all sounds great progress has been made. I'll be really interested to hear how things develop.
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    7. #27
      Active Member FadeToBlack's Avatar
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      It took about three weeks to sort it out.

      They spoke to my mother, as they had this news and explained to her they think I might get on better with a male worker. Not sure why though. Apparently they offered me this before and I wasn't against the idea. I can't remember that though.

      Not at all, I actually withdrew my consent for them to speak to her, but they ignored me completely. They have been calling her a few times behind my back keeping tabs on me. She only told me this yesterday. I am not bothered now, I guess I will see this guy. The other person lost my trust as she tried to get me sectioned and treated me like an idiot. She also did not communicate with me very well.

      That makes a lot of sense. I am not sure what to expect, but I accept now that coming off meds is a bad idea, and I need support with work and stuff as it has been hard without anyone to talk too. I will suggest the budget links you shared and see what that's all about.

      I think that might be the case. If anything she may realise how important communication is at least.

      I am surprised, but apparently they have worked hard to make this work, so they are trying. My old care coordinator told my mother she had been trying to get something sorted for a while, but she never told me that.

      Thanks for you support on this thread Mischief. I will post another once I meet this person and say how it went.

    8. #28
      Senior Member firemonkee57's Avatar
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      It's good to hear some progress seems to have been made.
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    9. #29
      Active Member FadeToBlack's Avatar
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      He just came to my flat. He's calling on Monday to see if things are better but I told him no doctors as I am sick of them messing with my medication.

      He even gave me a mobile number to call him on which the other one did not. He said I can text or call him. This is already better than the last person who would never have done this.

      What he said was realistic, pragmatic and he wasn't trying to treat me like I was stupid. I think this could work, but we'll have to see.
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    10. #30
      Forum Admin Mischief's Avatar
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      Quote Originally Posted by FadeToBlack View Post
      He just came to my flat. He's calling on Monday to see if things are better but I told him no doctors as I am sick of them messing with my medication.
      That's a good start, I guess it will take a little time to readjust to the prescribed medications once again. Very glad to hear that he will be calling on Monday. Would a psychologist help? Just thinking that one might help you gain more understanding of the issues that you're experiencing and help you develop non-medicated approaches to tackling them.

      Quote Originally Posted by FadeToBlack View Post
      He even gave me a mobile number to call him on which the other one did not. He said I can text or call him. This is already better than the last person who would never have done this.
      That's really encouraging. Just showing some respect and trust of you goes a long way.

      Quote Originally Posted by FadeToBlack View Post
      What he said was realistic, pragmatic and he wasn't trying to treat me like I was stupid. I think this could work, but we'll have to see.
      It sounds like it's off to a good start. Let's hope it continues in a positive direction.

      One thought that comes to mind, if it starts to go in a direction you're not happy it might be worth raising the issues as soon as you feel comfortable airing them. It's always much easier to tackle thing when the issues are small.
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