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    Thread: Do I cut contact with the NHS?

    1. #11
      Senior Member fazza's Avatar
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      I thought the same as you and got rid of my cpn. Big mistake. My new one is ok but nowhere near as good as my last.

      I also wanted to be discharged from cmht. Another big mistake. Right now I am a mess and I am glad of their help.

      It might not be great but it's all we have. Some help is better than no help. Ask to speak to the team manager and try to discuss your feelings and try to come up with a compromise.

    2. #12
      Active Member FadeToBlack's Avatar
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      Quote Originally Posted by fazza View Post
      I thought the same as you and got rid of my cpn. Big mistake. My new one is ok but nowhere near as good as my last.

      I also wanted to be discharged from cmht. Another big mistake. Right now I am a mess and I am glad of their help.

      It might not be great but it's all we have. Some help is better than no help. Ask to speak to the team manager and try to discuss your feelings and try to come up with a compromise.
      I have followed advice, recommendations and treatment. None of it works. I waited over a year to see a therapist I was promised could help, but that did not help at all. I have been telling them since my old case worker left that me and the new one don't like each other.

      She treats me like I am a lost cause and actively encouraged me to give up work more promising me a benefit I can't get. She tells me I am treatment resistant which wasn't true. The communication broke down completely on Monday. If she was so worried like she was she'd done something about it.

      I am accepting now that I am beyond their help, I will manage and things will be fine. If I go psychotic again I will be sure to sign off properly instead of half-baked attempts at it. That's a promise.

    3. #13
      Active Member FadeToBlack's Avatar
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      Quote Originally Posted by Mayflower7 View Post
      Hi,
      I hope you'll be okay, you do derserve care. I don't have a care coordinator anymore mine was terrible.
      We both deserve better.
      Here to listen.
      I'm so sorry about how they've treated you.
      Take care
      I am sorry this has happened to you also. I don't understand why this happens.

      Right now I would rather be left alone to work things out, as the interventions they have don't help.

      I have cut out all treatment. I can feel things getting worse as I have not been taking my meds properly now for over a month. I am determined to fight it. I do not trust them to care for me let alone tell me what 'illness' I have... Its the medication
      Hug Mayflower7 hugged this poster.

    4. #14
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      If you plan to stop treatment I recommend you actively try to do things to keep yourself busy. Get out, exercise, talk to people, maybe start volunteering somewhere. I've found that the more I sit at home and do nothing, the more I go inward and get lost in my symptoms. But when I am busy doing stuff, the symptoms seem to get put on the background and I don't notice them as much, and I'm more able to function normally. The exception is when I get stressed out, so I recommend you de-stress your life. When things get too busy or I am too active I get stressed and the symptoms are worse. So you have to find that balance inbetween being too busy, and not being busy enough to get the best benefit.

    5. #15
      Forum Admin Mischief's Avatar
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      Hi FadeToBlack

      I'm really sorry to hear about the break down of the relationship with your care co-ordinator and that you can feel things are getting worse for you at the moment.

      Have you thought of raising the lack of response about your request for a new care coordinator with PALS? It sounds like you have a good case for a complaint against the service given that your requests have been concerned.

      Have you heard about Personal Health Budgets? Having your own budget, so you can choose how you would like to get supported, might resolve a lot of difficulties that you're having around your care/support.

      If you're interested you can find out more information on the following web pages:

      NHS England >> What are personal health budgets (PHBs)?

      NHS England >> Frequently asked questions about PHBs

      NHS England >> Personal health budgets in action

      What is a personal health budget? - NHS

      http://www.peoplehub.org.uk/

      I know a number of people who use personalised budgets (largely for social care needs). Having them has made huge improvements in the support they are getting. Being in control of how you get support, when you get supported, whom you get supported by and being able to be creative as to what support is really changes people has a massive impact on your life.

      I'm real sorry to hear that you are feeling things are getting worse for you at the moment. I also heard what you were saying about not taking your medication properly for a month. I trust that you know that when "coming off psychiatric drugs it is very important that you are aware that most psychiatric drugs can cause withdrawal reactions, sometimes including life-threatening emotional and physical withdrawal problems. In short, it is not only dangerous to start taking psychiatric drugs, it can also be dangerous to stop them. Withdrawal from psychiatric drugs should only be done carefully under experienced clinical supervision."

      I just flag that, as you may be experiencing a withdrawal reaction.

      Hopefully, you'll find something in my post which is helpful. Your thread has been really helpful to me. I'm doing lots of thinking about how the forum can help change things and I think you're really illustrating some important issues the forum could help tackle both for individuals but also in terms of advocating for changes in the system more generally.

      As mayflower7 said "you both deserve better".
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    6. #16
      Active Member FadeToBlack's Avatar
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      Thanks for highlighting that option, I hope others try it before things get to the point I have reached.

    7. #17
      Active Member FadeToBlack's Avatar
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      Angry

      I wasn't going to say but I am so angry I am almost pleased that coming off my meds is dangerous.

      I get that's probably inappropriate to say it

    8. #18
      Forum Admin Mischief's Avatar
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      Quote Originally Posted by FadeToBlack View Post
      I wasn't going to say but I am so angry I am almost pleased that coming off my meds is dangerous.
      I hear your anger and I like the spirit in which you appear to be saying it in. I'm hoping that expressing your anger through reducing your medication doesn't give you the worst possible outcome of being back in the services on a compulsory basis, i.e. either being sectioned and/or having a compulsory treatment order.

      Have you thought of using that anger in alternate ways? From the way you're speaking here you could become quite a change agent.
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    9. #19
      Active Member FadeToBlack's Avatar
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      I was told by people online before that they feel they lacked representation from anybody. They said to me that because I work in a decent job that I should express their anger at how the media especially portrays them, and show them that people with Schizophrenia can do something useful - contrary to what other people think.

      I tried this, and it went no where. I even wrote 1,000 words and sent it to some opinion sections via email, but it fell on deaf ears - which I am not surprised about.

      I honestly don't know how you can use a voice to raise concerns when you lack any credibility in the eyes of most people. It makes me sick how people are treated by the system that promotes recovery, when you're then facing the reality of being shoe-horned into a position where your diagnosis is practically the worst swear-word.

    10. #20
      Forum Admin Mischief's Avatar
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      Quote Originally Posted by FadeToBlack View Post
      I was told by people online before that they feel they lacked representation from anybody.
      I think it is fair to say that staff working in MH services have little real accountability to people who use services. If we could tackle that one effectively I think there would be some impressive improvements in services.

      I've just read some of your other threads and it would appear that you are being/have been recently subject to someone who is using their power in a negative way. This is all too common.

      How do you think we could bring about change?

      Quote Originally Posted by FadeToBlack View Post
      They said to me that because I work in a decent job that I should express their anger at how the media especially portrays them, and show them that people with Schizophrenia can do something useful - contrary to what other people think.
      Role models are important, so go examples to help tackle the stigma are important.

      Quote Originally Posted by FadeToBlack View Post
      I tried this, and it went no where. I even wrote 1,000 words and sent it to some opinion sections via email, but it fell on deaf ears - which I am not surprised about.
      Do you still have a copy of those 1,000 words? Is it something that could be published on the forum website?

      Quote Originally Posted by FadeToBlack View Post
      I honestly don't know how you can use a voice to raise concerns when you lack any credibility in the eyes of most people.
      Collective action makes it easier. Perhaps we need to start working to get people with mental health difficulties to be on the boards of NHS Trusts.

      Quote Originally Posted by FadeToBlack View Post
      It makes me sick how people are treated by the system that promotes recovery, when you're then facing the reality of being shoe-horned into a position where your diagnosis is practically the worst swear-word.
      and the treatment from the system, often creates the reason why you're compelled to use the services. It's a total catch 22 position. The starting point for change is working out what you'd like to see replace the current system and then working out how we can get to that position.
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