Do I cut contact with the NHS?

FadeToBlack

FadeToBlack

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I told them this morning I want a new care coordinator after telling them for months.

I said you tell me either way by the end of the day, or that's it I am not dealing with them anymore.

I got no call...

Shall I keep to what I said? I would find it hard not to if I am honest and this has gone on for too long and I am sick of it.

These people are incompetent.
 
blacksmoke

blacksmoke

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that means private then! and that is no where near as regulated as the NHS.
 
FadeToBlack

FadeToBlack

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Not private, it would mean nothing.
 
FadeToBlack

FadeToBlack

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The other option is nothing, and I think that's what's going to happen.
 
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nightmare57

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Are you on the CPA pathway plan?
 
Mayflower7

Mayflower7

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Hi,
I'd be surprised if the CMHT will let you leave services, if you have schizophrenia. Your team will want to monitor you.
You will be accused of not engaging with services.
I know that many are incompetent, however you will be better off with support/care.
Try a new care coordinator/CPN.
Hope you get the care you deserve.
Take care
 
FadeToBlack

FadeToBlack

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I think so. Not sure. I had a psychiatrist, care coordinator and a psychologist and an occupational therapist. I think I was still on one but I can't remember the last time I saw a care plan.
 
FadeToBlack

FadeToBlack

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Hi,
I'd be surprised if the CMHT will let you leave services, if you have schizophrenia. Your team will want to monitor you.
You will be accused of not engaging with services.
I know that many are incompetent, however you will be better off with support/care.
Try a new care coordinator/CPN.
Hope you get the care you deserve.
Take care
Well I have made things clear to them. They cannot force me anymore to follow treatment. I refused to answer the pathetic questions to see if I am dangerous. I see through their lies and don't appreciate their version of help.

I have been accused of this engagement thing many times. its their fault I don't engage with them properly. I no longer have any support, and I have no idea how that will work out. I guess I will have to learn to cope somehow.

I don't deserve any care. I am done with it all. I hope I end up in a ditch somewhere
 
Mayflower7

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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
 
fazza

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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.
 
FadeToBlack

FadeToBlack

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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.
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.
 
FadeToBlack

FadeToBlack

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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
 
boudreauj4

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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.
 
mischief

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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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