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I need an answer, today, in this post. I've had enough.

confusedwanderwaffle

confusedwanderwaffle

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This could be a long post because I'm not sure where I SHOULD begin or how much information I should give to make sure people reading understand my situation:


I'll start out by saying though that the "answer" I need, the one to which I'm referring to in the title of my post, is why despite being in touch with the services in my country (UK, England) for the last - idk - 5 years, have they done NOTHING to help me?


The most they do is give me tablets and send me on my merry-way; "Okay here's some anti-depressants, f*ck off and goodbye. Thinking how they won't have to put up with me for another 4 weeks until I come back." That's literally what I feel like the services/doctors do in regards to the treatment they give me. (or 'use to give me' would be a more accurate phrase considering I've given up with all these people)


They gave me a care-coordinator to which I didn't feel I had a good connection with him so I tried requesting a new CC at least 3 times before he stopped harassing me and gave me a new CC and then this new one was OK but he never contacted me much (I believe he said he'd contact at least once a month) but months and months flew passed and eventually the last I heard of him (or any co-coordinator for that matter) was that he was going on holiday which has gotta be over a couple years ago now and no word, not a single word from any care coordinators since then.



I tried another thing/plan: after a diagnosis - actually maybe I should back up and give some sort of context about myself if it matters? I'm 22 and have depression, SPD & aspergers - now as I was saying, after a diagnosis of aspergers the nurse said she'd put me on a waiting list for a specialised team but that the waiting list would be a couple years, which it was. So a couple years (of hell) fly by and finally someone is assigned to me yet despite calling their reception several times over the course of a couple months and the receptionist saying the person assigned to me would get in contact with me, NEVER heard from her. even a single time. So I literally waited over 2 years for nothing. Still no word to this day. Needles to say I've given up with them as well.


The thing I've been trying to do since like the beginning of this whole seeking-help-fiasco though is me asking my GP/other doctors for a therapist but they've always made excuses. Yet I always always ALWAYS hear about everyone talking about their experiences with their therapists -- so why me? why am I the only person who is for some reason not being given a therapist? tried an alternate route with is ask for a counsellor from a doctor and doctor said they'd contact me within two weeks and guess what? no phone call. Given up with them as well.


Out of all this seeking help for the last 5 years, all that they actually do is give me anti-depressants but tried 5 different types and none worked. Besides, and I'm sure you would agree with me when I say medication isn't helpful without......ugh whats the word I'm looking for..... therapy/talking? so I just stopped taking meds altogether since it wasn't getting no where.



I just don't get it. There seems to be a MASSIVE pattern here of all these services not contacting me/helping me regardless of all their empty promises and assurances. My question is: am I being taken advantage of, like are they just trying to save money but not supplying with services? or are the entire mental health services here just all coincidentally a failed system? or is the fault on my end somehow?



Truth be told right now in present time I'm just going through the motions and doing nothing. Mainly because I know that if I try again like I have in the past, I'll just end up giving myself hope again which'll lead to emotional pain and suicidal urges. Basically what I'm doing right now is the only way I can stay as pain free as possible. By not doing anything. Obviously I feel I have given up with putting my faith in the doctors and services here but I still wanted to ask the question in my title of the post because I NEED to know why the hell the people here have done nothing to help me while I've been in torture and hell for the last 10 years of my life.


Edit: changed my age to the correct number. I remembered something as well, after being discharged from the mental ward, the doctors set up a care-plan... and shortly after being discharged I got a call from that "care plan" telling me I could no longer participate/be involved with them. Am I just a bad luck token or what?
 
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W

Waverunner

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I think it is a broken system. I know the feeling of getting your hopes up only for nothing to come of it. Have you thought of making a complaint? Sometimes it helps because one person looks at the info and realises how badly things have been done. At the very least though, it messes up their stats and they seem to care about that!
 
confusedwanderwaffle

confusedwanderwaffle

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I think it is a broken system. I know the feeling of getting your hopes up only for nothing to come of it. Have you thought of making a complaint? Sometimes it helps because one person looks at the info and realises how badly things have been done. At the very least though, it messes up their stats and they seem to care about that!
I wouldn't know where to direct my complaint, wouldn't know what to say or anything. Most importantly I would just think they'd ignore any complaints and it wouldn't get me help either way.
 
W

Waverunner

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Hi Confused. You can make a complaint to the mental health trust who you are under. In terms of what to put in the complaint, hard for me to say as I have not had your experience. However, what I would do is simply state what you have experienced. For example, the care co-ordination who stated he would contact monthly but did not and the fact that you were told he was going on holiday but no further contact. If I'm making a complaint, I tend to try and avoid making it an emotional rant and stick to the facts of what has happened and how this has made me feel (different to ranting). Is there someone who could help you make a complaint? My only other suggestions would be PALs or CAB who could maybe help you with a complaint. Alternatively maybe an advocate if you have such a service in your area. It may not change things but it may bring their attention back to you and they may the. Realise that you have "slipped through the net". Sorry about using that phrase but not sure how else to say it really. Sometimes the quiet people get missed and it is worth bringing their attention back to you. Good luck with it anyway.
 
confusedwanderwaffle

confusedwanderwaffle

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Hi Confused. You can make a complaint to the mental health trust who you are under. In terms of what to put in the complaint, hard for me to say as I have not had your experience. However, what I would do is simply state what you have experienced. For example, the care co-ordination who stated he would contact monthly but did not and the fact that you were told he was going on holiday but no further contact. If I'm making a complaint, I tend to try and avoid making it an emotional rant and stick to the facts of what has happened and how this has made me feel (different to ranting). Is there someone who could help you make a complaint? My only other suggestions would be PALs or CAB who could maybe help you with a complaint. Alternatively maybe an advocate if you have such a service in your area. It may not change things but it may bring their attention back to you and they may the. Realise that you have "slipped through the net". Sorry about using that phrase but not sure how else to say it really. Sometimes the quiet people get missed and it is worth bringing their attention back to you. Good luck with it anyway.
"I tend to try and avoid making it an emotional rant and stick to the facts of what has happened and how this has made me feel" Good pointer. Also no I do not have anyone (at least personal to me) to help me with making a complaint. I don't think covert schizoids really tell people about their personal business. I have heard of PALs though when I was in the ward: What is PALS? - Health questions - NHS Choices

This^ seems to be useful. You see near the bottom how it says to complain against the specific organisation who mistreated me - here's the big problem for me - I don't think it was *ONE* place/organisation that it happened with? I mean the lady GP who told me the counsellor would get in touch in two weeks but never happened that was at my GP surgery, the psychiatric nurse who diagnosed me and put me on a waiting list and then those people never contacted me are a small team entirely, and the CC was stationed across town and was usually mobile and don't know their official number. So it's overwhelming with *who* exactly to complain to... *sigh*
 
BorderlineDownunder

BorderlineDownunder

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Down in Australia the person who drives your MH treatment is your GP.

So they issue you with a Mental Health Plan which includes a package of 10 therapy sessions in a calendar year, you can also request one off psychiatric assessment via the hospital, but your GP has to request it.

I would imagine a similar system in the UK, I know you have CPNs but it would be the GP who orders them up.

You sound like you need a really good MH GP. These do exist, I got one.

But I also had to become more involved, ask more questions, find out exactly what a MH plan entails. One of my biggest gripes would be they don't actually hand you a MH Plan, its this intangible beast, I think you should at least get a piece of paper.

anyway that would be my suggestion - if you cant get anywhere with local health authorities try a good GP.

Its not really good enough imo, even our system is very piecemeal, you actually have to Do a lot Yourself.
 
confusedwanderwaffle

confusedwanderwaffle

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Down in Australia the person who drives your MH treatment is your GP.

So they issue you with a Mental Health Plan which includes a package of 10 therapy sessions in a calendar year, you can also request one off psychiatric assessment via the hospital, but your GP has to request it.

I would imagine a similar system in the UK, I know you have CPNs but it would be the GP who orders them up.

You sound like you need a really good MH GP. These do exist, I got one.

But I also had to become more involved, ask more questions, find out exactly what a MH plan entails. One of my biggest gripes would be they don't actually hand you a MH Plan, its this intangible beast, I think you should at least get a piece of paper.

anyway that would be my suggestion - if you cant get anywhere with local health authorities try a good GP.

Its not really good enough imo, even our system is very piecemeal, you actually have to Do a lot Yourself.
What's a CPN? and in essence are you saying I should request a different GP and ask that person for a therapist?

This is probably going to sound entitled or even lazy but the issue with which I struggle with in regards to "even our system is very piecemeal, you actually have to Do a lot Yourself"is that I've never learned to take initiative and take lead to do things myself, I always wait for a signal from someone to do something like the doctors or people I'm expecting a phone call from. Also the fact that I keep very private about my issues in real life to my family so they know nothing thus I have to deal with *it* on my own but I'm just so depressed that I really never have the energy or just will power to sort this stuff out. But when I do try (like the multiple examples in the body of my post above) it ends up failing 10/10 times and this just drains my faith to continue trying.
 
BorderlineDownunder

BorderlineDownunder

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What's a CPN? and in essence are you saying I should request a different GP and ask that person for a therapist?

This is probably going to sound entitled or even lazy but the issue with which I struggle with in regards to "even our system is very piecemeal, you actually have to Do a lot Yourself"is that I've never learned to take initiative and take lead to do things myself, I always wait for a signal from someone to do something like the doctors or people I'm expecting a phone call from. Also the fact that I keep very private about my issues in real life to my family so they know nothing thus I have to deal with *it* on my own but I'm just so depressed that I really never have the energy or just will power to sort this stuff out. But when I do try (like the multiple examples in the body of my post above) it ends up failing 10/10 times and this just drains my faith to continue trying.
do you have a GP you attend, and have you spoken to them of your problem?
 
confusedwanderwaffle

confusedwanderwaffle

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do you have a GP you attend
Yes and no. I technically have a "primary" GP but I don't really get along with him that much and due to my depression and the mistrust I have for the surgery I don't see any GP's currently. I did get along with this other GP but for some reason I'm not allowed to see her anymore.




and have you spoken to them of your problem?
This is a bit of a broad question; what problem are you referring to? the whole "the system is failing and I'm not being looked after by any of you" song and dance problem? yes, in summary I have in the past said in a brief statement to my GP how I'm not hearing from the teams and like I said in my original post, "regardless of all their empty promises and assurances" he says he'll do stuff but then nothing solid ever comes out of it. I believe last time I brought this issue up to him he said he'll allocate a navigator to me to be able to be informed and upto date about all these teams I've suppose to be in touch with, and he did, got a phone call from her. she begun talking to me via phone but after I think 2 phone calls I never heard from her again.
 
BorderlineDownunder

BorderlineDownunder

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Yes and no. I technically have a "primary" GP but I don't really get along with him that much and due to my depression and the mistrust I have for the surgery I don't see any GP's currently. I did get along with this other GP but for some reason I'm not allowed to see her anymore.






This is a bit of a broad question; what problem are you referring to? the whole "the system is failing and I'm not being looked after by any of you" song and dance problem? yes, in summary I have in the past said in a brief statement to my GP how I'm not hearing from the teams and like I said in my original post, "regardless of all their empty promises and assurances" he says he'll do stuff but then nothing solid ever comes out of it. I believe last time I brought this issue up to him he said he'll allocate a navigator to me to be able to be informed and upto date about all these teams I've suppose to be in touch with, and he did, got a phone call from her. she begun talking to me via phone but after I think 2 phone calls I never heard from her again.
I can empathise, ive been waiting so long now for another Support Worker I don't actually need one anymore.

I slip through every crack there is, literally. Its not even funny any more.

It took me 2 GPs and about a dozen phone calls before the referral I got to the hospital was finally "found", located, whatever.

Its an ongoing pattern, very very frustrating, also when you're ill the last thing you want to do is chase up other people not doing their jobs properly.

I get very irate.

may I suggest you try another GP, one who is more empathetic.

If that's not an option, find the phone number of the people who are supposed to be helping you, call them up and ask why they haven't.

Recently I tweeted an organization, didn't that make them sit up straight and pay attention.

They don't like Twitter. :D
 
confusedwanderwaffle

confusedwanderwaffle

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I can empathise, ive been waiting so long now for another Support Worker I don't actually need one anymore.

I slip through every crack there is, literally. Its not even funny any more.

It took me 2 GPs and about a dozen phone calls before the referral I got to the hospital was finally "found", located, whatever.

Its an ongoing pattern, very very frustrating, also when you're ill the last thing you want to do is chase up other people not doing their jobs properly.

I get very irate.

may I suggest you try another GP, one who is more empathetic.

If that's not an option, find the phone number of the people who are supposed to be helping you, call them up and ask why they haven't.

Recently I tweeted an organization, didn't that make them sit up straight and pay attention.

They don't like Twitter. :D
I'm straight up asking this btw, how do I get another GP. Do I literally just ask to book another appointment with another GP and ask for a therapist or something? is it that simple or is there a catch? because I'm sure I can book an appointment with another GP at the surgery.

You complained via twitter and it got them to sit up straight huh? maybe I underestimate the power of compaints. I don't and have never used social media.
 
BorderlineDownunder

BorderlineDownunder

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I'm straight up asking this btw, how do I get another GP. Do I literally just ask to book another appointment with another GP and ask for a therapist or something? is it that simple or is there a catch? because I'm sure I can book an appointment with another GP at the surgery.

You complained via twitter and it got them to sit up straight huh? maybe I underestimate the power of compaints. I don't and have never used social media.
I'm in Australia, here you just ring up any old GP and make an appointment.

theres an episode of The Thick Of It where they find out a member of the public is tweeting, all hell ensues....:D

same thing happened for me, they contacted me on twitter and gave me a special phone number to call, I called it, turned out they were in the wrong and they fixed it.
 
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calypso

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I think you get hold of PALS and tell them the whole story and ask them to advocate for you. The system will pay attention to an official far more than us. If that doesn't help then there are mental health advocates who also help and are available to us. This gets people on your side fighting for you without you having to go through the whole complaint system yourself. Tell them you have trouble standing up for yourself.

If you have enough money, you can get private therapy (about £35 and hour) and pick your own therapist.
 
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