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circles5
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Default Jul 14, 2019 at 09:11 AM
  #1
Hi,
I'll try and not vent, but I'm seriously frustrated at the way I've been treated by the NHS in the U.K.
I've been on the waiting list for CAT therapy to treat my Avoidant Personality Disorder, OCPD and childhood trauma for 18months.

I had a meeting with a psychiatrist last week and was told I've been kicked off the waiting list.
I was given no reason - other than; well there's a lot of people on the waiting list 'I hope you understand'.
Yes I understand! I am one of those people on the waiting list!!??

Then I pushed, saying the above... and was told: "There is no effective treatment for Avoidant Personality Disorder" So we won't put you back on the waiting list for therapy".
>
Again, I was already on the waiting list for CAT(Cognitive-Analytical-Therapy) specifically for my Avoidant Personality Disorder, OCPD and Trauma.

So now, I have no help, no therapy, very little in terms of any support other than my mum who has severe mental health issues herself.
I'm devastated by this news. I've been hanging in there for some help for 18months, and now I'm at less than square one. Square one would be getting on a waiting list.... - I've now been told they refuse to put me back on the waiting list.
-----------

In the past I've had a lot of CBT for my BDD and OCD.
Made good progress with BDD, but none with OCD.
This was another reason they won't give me therapy. -> "You've had a lot of therapy, and there are many people waiting for therapy"
I.e: You've had your lot, now go away.

Thing is since my last round of CBT which was almost 3 years ago, I've recieved 4 new diagnosis: AVPD, OCPD, Dependant Personality Disorder and Childhood emotional neglect.
And since I got Diagnosed I have had no help, no one to talk to about my diagnosis. Nada.
And now it looks like I won't have anyone to talk to as this psychiatrist is the one calling the shots. And she's clearly insane.
I can ask for a second opinion but that'll probably take months to get an appointment knowing the NHS..
All the meanwhile I'll still not be on the waiting list.... and will have no support.
She was happy to prescribe me an anti-psychotic however.

I'm so fed up with this country and the mis-treatment I receive.
My G.Ps, even told me to buy Diazepam off a street-dealer when I lost my prescription ONCE. As I was 'clearly selling them on the street myself'

ugh.
So, I'm f****d it appears.

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Default Jul 14, 2019 at 10:26 AM
  #2
I'm so sorry this has happened to you. Is private therapy in option? I'm not in the UK or the USA, and am doing Acceptance and Commitment Therapy, Dialectical Behavioural Therapy and Schema Therapy for my AVPD. Schema Therapy has shown effectiveness for personality disorders, including those not BPD.
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Default Jul 14, 2019 at 10:39 AM
  #3
Thanks for your reply QuietMind.

I have been very keen on schema therapy for 2 1/2 years. However it's not currently 'recognised' in the U.K. It's still in trial period, so that's not an option yet. I've heard it's very good.
Unfortunately I can't afford to go privately.

I'm stuck with the NHS. And all it takes is one person and the whole system falls apart. Like this psychiatrist.
She knew that what she was saying wasn't true - there is evidence that several different modalities of therapy help people with personality disorders.
She was just 'fobbing' me off. I think the psychiatrists in the NHS get told off / punished if they refer too many people into therapy as it costs money.

So the psychiatrists and the community mental health teams, and the doctors ------ all try and do the bare minimum they need to do to tick a box; saying that this patient is being 'cared' for. They try and get you to go away without receiving any help. Usually by prescribing medication.

Once again I'm truly baffled how they get away with this. -> Now I'm having to create a complaint, It's all such a mess. I still don't even know why I was dropped off the waiting list, as the psychiatrists explanation was non-nonsensical.
I'm glad your getting help with it. It's a very tough condition.
Regards
c5

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Default Jul 14, 2019 at 04:05 PM
  #4
I don't have AvPD, but I was in therapy for years and suspected I might have a PD before I was diagnosed with one. I think I likely had OCPD before I fell apart after my late husband died, was diagnosed with PDNOS about 9 years ago.

From what I have read and from my own oersonal experience most current therapies do not help with personality disorders. That's just the way it is and it sucks. From what I have read, schema therapy does have some promise but it is not yet widely available, so. . .

And, yes, they ARE getting away with this. That's just the fact. Like a physical disease for which there is no good therapy . . .go away, see ya, there's nothing I can do for you so . . .go away. On the private market a lot will also sell you on therapies and take your money (we are frequently rather desperate, after all) on therapy that has long had questionable success with PD's Not to mention making things worse.

We developed PD's in the first place frequently, I think, because we didn't count in our families or early social environment and so here we are again-- don't count, nobody knows what to do, nobody is researching what to do. It's not them, not their problem, move along, next. . .Yes, It's hard to believe but I am finally having to come to terms with the fact that that is how "normals" operate.

I think if a bunch of us got together, perhaps we could understand each other and come up with some approaches toward solutions. We might have some understanding as well as motivation. But I have no clue how to get anything like that started. Thing is, if we could do that then it wouldn't be about them getting away with not helping us -- it would be about us actually getting something done about it. Individually, if any of us knew how to help ourselves then, logically, we would. But we don't. And therapists don't know how to help either. So, if we could find ways to help each other. . .

Any ideas?
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Default Jul 14, 2019 at 07:01 PM
  #5
This sounds incredibly frustrating. It makes no sense to me that the government could decide you don’t need treatment. That seems like the most personal of decisions.
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Default Jul 15, 2019 at 03:47 AM
  #6
I am sorry for this but I found this on the web:
NHS England >> How do I feedback or make a complaint about an NHS service?

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Default Jul 15, 2019 at 05:09 AM
  #7
Quote:
Originally Posted by circles5 View Post
Thanks for your reply QuietMind.


I have been very keen on schema therapy for 2 1/2 years. However it's not currently 'recognised' in the U.K. It's still in trial period, so that's not an option yet. I've heard it's very good.

Unfortunately I can't afford to go privately.


I'm stuck with the NHS. And all it takes is one person and the whole system falls apart. Like this psychiatrist.

She knew that what she was saying wasn't true - there is evidence that several different modalities of therapy help people with personality disorders.

She was just 'fobbing' me off. I think the psychiatrists in the NHS get told off / punished if they refer too many people into therapy as it costs money.


So the psychiatrists and the community mental health teams, and the doctors ------ all try and do the bare minimum they need to do to tick a box; saying that this patient is being 'cared' for. They try and get you to go away without receiving any help. Usually by prescribing medication.


Once again I'm truly baffled how they get away with this. -> Now I'm having to create a complaint, It's all such a mess. I still don't even know why I was dropped off the waiting list, as the psychiatrists explanation was non-nonsensical.

I'm glad your getting help with it. It's a very tough condition.

Regards

c5
I know a book isn't the same as therapy, however the founder of schema therapy wrote a self help book called Reinventing Your Life.

It's really tough to just have AVPD, and you've other PDs too. It's appalling that your psychiatrist thinks you don't need therapy.
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Default Jul 15, 2019 at 10:31 AM
  #8
Hi Circles, I’m in the UK too. There are many counselling or women’s centers where you can get low cost therapy, and most private therapists state that they take some low cost clients, if you look on the counselling directory. Private therapists mainly seem to do psychodynamic or person centered therapy, some do EMDR, so it wouldn’t be the same treatment as on the NHS, but it could be helpful? I tend to think that success is down to the individual therapist rather than the specific approach. I’m currently seeing a T with over 20years experience, her specialism is trauma, and she is brilliant, I found her on the counselling directory.
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Default Jul 26, 2019 at 06:13 PM
  #9
Thanks. Glad you've been getting effective help.
Can you clarify what you mean by; 'woman's centers'?

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Default Jul 26, 2019 at 10:06 PM
  #10
I'm so sorry this has happened, circles5. I live in the US but have a very close friend in the UK, and it seems like the NHS pretends to offer mental health care, but mostly does not live up to this. I have seen multiple news stories about actively suicidal people being placed on months-long waiting lists by NHS. There are also many diagnoses accepted and treated here in the US that are not accepted as valid by the NHS.

I hear you that you can't afford to go private, but I would put my effort into trying to find some sort of private option (whether by earning a little extra money, finding a pro-bono or sliding scale / inexpensive T, trying the MIND charity, just something else besides NHS). I know that isn't easy either, but may ultimately be less frustrating. I think in many ways the NHS is superior to the frequent lack of health care we have here in the US -- but they really suck at mental health care. Know that you are not alone and the things they say about mental health are frequently clueless. Try not to take it personally if that's possible.
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Default Jul 27, 2019 at 06:33 AM
  #11
So sorry for your experience. I know the NHS is incredibly frustrating at times. Just to reinforce what someone else said about exploring low-cost counselling centres in your area because they often offer counselling a very low price. Also it's definitely worth phoning some private counsellors and asking if they offer a sliding scale or would consider seeing you fortnightly. Many counsellors offer both options including mine.
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Default Jul 28, 2019 at 06:11 AM
  #12
Hi,
Thankyou all for your responses.
I think you have given very good advise. - I will find a low-cost private alternative.
The NHS - is very good for everything BUT mental health. I'm very glad it exists, but they really have shun those with mental health conditions.

Here, as you say; they merely pretend to help people.
I have come to think of the mental health services as 'box tickers'.
They just tick boxes - to meet quotas, and save their budget. Turning away and denying help to everyone that they can.

They claim that everyone who approaches their doctor get's help with 14 days i think. Which is the biggest scam - as within 14 days they get access to an online mental health course
They get a piece of software...... that's all they get, and they don't even get it straight away.

I've now been told that the anti-psychotic they were going to prescribe me for my OCD, is now conditional on me taking another SSRI (should've seen that one coming) - I informed the very same psychiatrist that I can not tolerate these medications and they offer no benefit. I said 'no benefit' tentatively as I know how these doctors think.....;
Out of that sentence; Can't tolerate, no benefit --They ignore 'can't tolerate' and say ah, well that's because you haven't tried augmenting with an anti-psychotic. They completley ignore the fact these SSRIs make me very ill.
I could 'augment' calcium and magnesium supplements with a can of beer. voilla augmented Calcium/magnesium supplement...... - I don't understand, if something doesn't work... go back to the drawing board. Don't build on an already broken foundation...
However, now - if in future I say; I wanted help and didn't receive any - I will be told I was un co-operative. I will be informed the dear psychiatrist did her best to help me, after long and hard consideration deciding an SSRI and anti-psychotic was the best choice... and I turned down her help. The help was there and I turned it down. (I have explained I wanted to try an anti-psychotic for my OCD and could not tolerated SSRIs, but alas..)
When I first took Sertraline 50mg. I didn't sleep for 72hours from one pill!!!! Literally was very ill, sleep deprived - shaking, hallucinating.
I went to the doctors.... and they told me to go to the supermarket and buy 'piriton drowsy version' AKA chlorpheniramine maleate (A 1st-gen anti-histamine)
They didn't even prescribe me it....
--

I will be going privately some how. I'll get myself help. And I will not be listening to another word from a psychiatrist or member of the NHS mental health team - As they are not there to help, just give the illusion to you and the public that they are helping.

The vast majority of mental-health workers are incredibly poorly trained.
I have had key workers and members of hospital emergency psychiatric teams that have not known what BDD is.
I've been given 'social inclusion support workers' with no psychiatric training - at all. which is almost a cruel joke considering I have AVPD.
Others, have written down BPD.... when I tell them I have BDD - I then have to explain that I have BDD, and it's a real condition that I'm not making up.

I was in crisis at hospital, suicidal.... and was subjected to half an hour of me and my mum being yelled at and belittled by a very aggressive psychiatric nurse - telling me life is sacred and I shouldn't be thinking about taking my life as what about the effects it would have on my friends and family, and surely I was grateful to be alive ....
Eventually being told I could get a bed in a ward, but I'd have to wait 96 hours in accident and emergency on the metal benches without a bed or private room.
Then after an hour the psychiatric nurse came up to me and said oh,,, by the way; what is your diagnosis?

10 years of experience has given me a lot of insight into how they operate.... It is appalling, I have gone from despair to disbelief.
I feel like I'm suffering a derealization episode whenever I try and engage with the mental health services in this country. I often walk away in shock and laughing. Which is about the only relief I get.

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Last edited by circles5; Jul 28, 2019 at 06:41 AM..
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Default Jul 28, 2019 at 06:57 AM
  #13
Yup. .
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Default Jan 01, 2020 at 04:51 PM
  #14
that is appalling

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