People who are suppose to be helping me with my mental health are making me feel worse

Bettahm

Transforming care have emailed this morning saying they feel I need social care. This has been going on sometime and I will not consent to it for several reasons like one, I dont need it, I need help with my mental health! Not left with it and have 'care'. It is making my mh worse all the time. I have depression, bad anxiety and agoraphobia and all this bullying is making me just want to stay shut away and shut the world out. I have told them I need to have regular sessions with a psychologist to beat this. They have referred me today to IPBT but they work with CBT which doesn't work for me because I'm autistic. I'm starting to despair of ever getting help or getting better.
I've been written off by the system and left with 'care'. That's not going to improve my mental health. 

Rosie_Scope

I'm really sorry this is happening to you @Bettahm, it sounds really difficult.

Have you managed to email them back to explain how you feel about their suggestions? I'd understand if you don't feel up to it yet.

letitbe

Bettahm said:

Transforming care have emailed this morning saying they feel I need social care. This has been going on sometime and I will not consent to it for several reasons like one, I dont need it, I need help with my mental health! Not left with it and have 'care'. It is making my mh worse all the time. I have depression, bad anxiety and agoraphobia and all this bullying is making me just want to stay shut away and shut the world out. I have told them I need to have regular sessions with a psychologist to beat this. They have referred me today to IPBT but they work with CBT which doesn't work for me because I'm autistic. I'm starting to despair of ever getting help or getting better.
I've been written off by the system and left with 'care'. That's not going to improve my mental health. 

When you were under CMHT did they offer and therapy ( not CBT ) ? 

Bettahm

letitbe said:

Bettahm said:

Transforming care have emailed this morning saying they feel I need social care. This has been going on sometime and I will not consent to it for several reasons like one, I dont need it, I need help with my mental health! Not left with it and have 'care'. It is making my mh worse all the time. I have depression, bad anxiety and agoraphobia and all this bullying is making me just want to stay shut away and shut the world out. I have told them I need to have regular sessions with a psychologist to beat this. They have referred me today to IPBT but they work with CBT which doesn't work for me because I'm autistic. I'm starting to despair of ever getting help or getting better.
I've been written off by the system and left with 'care'. That's not going to improve my mental health. 

When you were under CMHT did they offer and therapy ( not CBT ) ? 

No, no therapy offered.
Just pills and I dont do pills. Cbt doesnt work for me either. The support worker had no understanding of my conditions and was trying to push me to doing things I cant do saying 'what you're suffering from is fear and you just have to do it'. A CBT approach. When I wouldn't do stuff they wanted to get social care in and I refused.
Yes I want help but their approach is shove you in off the deep end.
They made me worse. 

Bettahm

Rosie_Scope said:

I'm really sorry this is happening to you @Bettahm, it sounds really difficult.

Have you managed to email them back to explain how you feel about their suggestions? I'd understand if you don't feel up to it yet.

I have emailed them back, in anger.
'Stuff your social care'
I know, but sometimes you have to let them really know what they're doing to you.
All this has gone on too long while my conditions worsen.

Bettahm

@letitbe
I read online an article that appeared in the guardian several years back now saying if you dont respond to treatment they can just kick you out.
No referral on to another service, nothing.
Leave you with your mental health problems. 

Its getting like the Victorian era. 

Rosie_Scope

It's not good at all, @bettahm. Accessing treatment can be so taxing and I'm really sorry you're not getting what you need or being listened to properly. 

Have you ever used an advocacy service? They can help you to communicate your wishes to organisations who you feel aren't listening properly. I'll link an example below. It's a bit dependent on the area you live in, but might be worth looking into to see if they can help you. 

In your area | POhWER

letitbe

Bettahm said:

letitbe said:

Bettahm said:

Transforming care have emailed this morning saying they feel I need social care. This has been going on sometime and I will not consent to it for several reasons like one, I dont need it, I need help with my mental health! Not left with it and have 'care'. It is making my mh worse all the time. I have depression, bad anxiety and agoraphobia and all this bullying is making me just want to stay shut away and shut the world out. I have told them I need to have regular sessions with a psychologist to beat this. They have referred me today to IPBT but they work with CBT which doesn't work for me because I'm autistic. I'm starting to despair of ever getting help or getting better.
I've been written off by the system and left with 'care'. That's not going to improve my mental health. 

When you were under CMHT did they offer and therapy ( not CBT ) ? 

No, no therapy offered.
Just pills and I dont do pills. Cbt doesnt work for me either. The support worker had no understanding of my conditions and was trying to push me to doing things I cant do saying 'what you're suffering from is fear and you just have to do it'. A CBT approach. When I wouldn't do stuff they wanted to get social care in and I refused.
Yes I want help but their approach is shove you in off the deep end.
They made me worse. 

Saying “fear and you just have to do it” shows a massive lack of understanding with MH issues, just as bad as “pull yourself together “ 
it’s getting to the root of the issues that can help . 

Bettahm

Rosie_Scope said:

It's not good at all, @bettahm. Accessing treatment can be so taxing and I'm really sorry you're not getting what you need or being listened to properly. 

Have you ever used an advocacy service? They can help you to communicate your wishes to organisations who you feel aren't listening properly. I'll link an example below. It's a bit dependent on the area you live in, but might be worth looking into to see if they can help you. 

In your area | POhWER

Pohwer are not in this area. I have emailed voiceability but that's ongoing. First they said I had to be with cmht! Or social care! Hoping if I get the referral to IPBT that might work for an advocate. IPBT only do CBT tho and that doesnt work for me. 

It is not right you have to fight to get help when you're already struggling with the world. 

Bettahm

letitbe said:

Bettahm said:

letitbe said:

Bettahm said:

Transforming care have emailed this morning saying they feel I need social care. This has been going on sometime and I will not consent to it for several reasons like one, I dont need it, I need help with my mental health! Not left with it and have 'care'. It is making my mh worse all the time. I have depression, bad anxiety and agoraphobia and all this bullying is making me just want to stay shut away and shut the world out. I have told them I need to have regular sessions with a psychologist to beat this. They have referred me today to IPBT but they work with CBT which doesn't work for me because I'm autistic. I'm starting to despair of ever getting help or getting better.
I've been written off by the system and left with 'care'. That's not going to improve my mental health. 

When you were under CMHT did they offer and therapy ( not CBT ) ? 

No, no therapy offered.
Just pills and I dont do pills. Cbt doesnt work for me either. The support worker had no understanding of my conditions and was trying to push me to doing things I cant do saying 'what you're suffering from is fear and you just have to do it'. A CBT approach. When I wouldn't do stuff they wanted to get social care in and I refused.
Yes I want help but their approach is shove you in off the deep end.
They made me worse. 

Saying “fear and you just have to do it” shows a massive lack of understanding with MH issues, just as bad as “pull yourself together “ 
it’s getting to the root of the issues that can help . 

Absolutely!!
This is why I have been pushing for sessions with a psychologist. But steps 2 change wont have me back (after 18 months of their CBT, on and off, didnt work) and cmht for some reason wouldn't let me talk with theirs.
My mind needs fixing. I do not want to be left like this with 'social care'. 
We live in a pretty toxic society now.

Rosie_Scope

That's really frustrating, @Bettahm. It's horrible how much of a struggle it is just to access the help you need, especially when you're fairly certain you know what you'd find helpful. 

Perhaps the IPBT referral might be the first step to at least getting access to an advocate who can fight for you, even though the CBT might not be useful. Not fun to have to jump through hoops to get the care you deserve, though. 

Bettahm

Rosie_Scope said:

That's really frustrating, @Bettahm. It's horrible how much of a struggle it is just to access the help you need, especially when you're fairly certain you know what you'd find helpful. 

Perhaps the IPBT referral might be the first step to at least getting access to an advocate who can fight for you, even though the CBT might not be useful. Not fun to have to jump through hoops to get the care you deserve, though. 

I am getting tired and angry. Five years in the system and I'm worse with no happy ending in sight.
It'll be the same for many on this forum and its sick.
Before hunt and stride start imposing sanctions on us they want to fix our sick, Victorian mental health care system!

Rosie_Scope

That's really understandable @Bettahm, I'm not surprised you're angry and you have every right to be. The system is broken and I'm really sorry things are so difficult for you.

I hope the community is somewhere you feel able to vent about it all when you need to. I'll have a think and see if I can come up with anything else that might be helpful to you.

Bettahm

Rosie_Scope said:

That's really understandable @Bettahm, I'm not surprised you're angry and you have every right to be. The system is broken and I'm really sorry things are so difficult for you.

I hope the community is somewhere you feel able to vent about it all when you need to. I'll have a think and see if I can come up with anything else that might be helpful to you.

Thank you Rosie 

Bettahm

I've been told my physical health is more important than my mental health, so reason why they are pushing social care, needs assessments, financial assessments, direct payments for personal assistant etc, all stuff I cant begin to deal with because of my mental health. (And dont want anyway)
So you see the catch here.

There may be a chance I can go back with cmht for phone sessions with psychologist only but long waiting list, if they take me back. I was kicked out for repeatedly failing to take their advise (because I didnt like it, and did try to explain to them). Have tried to get a copy of the discharge letter (that my gp and transforming care have) but so far nothing happening.

The last few weeks have drained me, with IPBT, advocates, all the emails back and forth re social care and 90 minute assessments etc., unanswered emails sent to out of area gps, and more. 

Now they say social Prescribing might do the making medical appointments and coming with me to them thing, so I've emailed them because they told me to self refer, unsure about that.

At the moment I just want to shut the world out and everyone can go away.

WhatThe

Bettahm, 

I used POhWER (pre-diagnosis) but they couldn't understand me and discharged me. I had discovered that my medical records were shredded when the children's hospital closed and I wanted this corrected. There's now a brief mention of the year of my emergency surgeries but just trying to use that advocacy service was very distressing.  

None of the professionals I saw in nearly 40 years of therapy identified my autism. The first assessor refused to diagnose me saying there was no cure! I'm convinced they still know very little about it. We have to keep telling them what we need until they change their approach. I don't believe any of this is your fault or mine.

Organisations and people are loathe to admit error or show humility so that's what we're up against much of the time. I have no idea why the NHS pays untrained or ill-educated advocates to 'help' people like us! 

I've now discovered that my data pre-UC is apparently not available so I feel even more of a non-entity in this civilised and progressive country.. 

Bettahm

I'm now trying to get transforming care to refer me back to cmht for the psychologist only
Because I cant deal with social care, needs assessments, financial assessments, loads of people coming round here, or this financial assessment for direct payments for a personal assistant which I barely understand and dont want all this stuff!!!
But unless I'm with cmht or IPBT I cant have the free voiceability advocate who will work for me with making medical appointments and coming with me to them, and not be a judgemental pain in the ****.
The system has the advocate thing backward because you need the advocate to help you with all these other people!!!
Transforming care has also said it will take ages to sort out my mental health. Not very inspiring. But why they want my physical health sorted first, but cant cope with appts etc because of my mental health.......   
So hope is still for an understanding advocate.
And some down time from all these other people who collectively are making my situation worse. 

WhatThe

I wonder if the problem is the description 'mild' autism - we don't experience it mildly or only some of the time. It can be triggered at any time and involve completely uninhibited behaviour.   

Bettahm

WhatThe said:

I wonder if the problem is the description 'mild' autism - we don't experience it mildly or only some of the time. It can be triggered at any time and involve completely uninhibited behaviour.   

I dont have mild autism 

Hannah_Alumni

@Bettahm I'm so sorry you are going from pillar to post! I do hope you get an understanding advocate Why not take this afternoon off from it all? Pop your phone on silent. Disconnect your home phone if you have one and just watch TV, read a book, craft... Something that will make you feel calm and help you rest up a little

Bettahm

Hannah_Scope said:

@Bettahm I'm so sorry you are going from pillar to post! I do hope you get an understanding advocate Why not take this afternoon off from it all? Pop your phone on silent. Disconnect your home phone if you have one and just watch TV, read a book, craft... Something that will make you feel calm and help you rest up a little

Thank you, I hope they accept the referral so I can get an advocate. 
Cant answer the phone anyway and no TV or radio here. My pets keep me going. Without them I'd have given up by now.
Still think it should be totally unnecessary to have to fight the system all the time. They have definitely made me worse.