Into the system…

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Bombshell…

with 16 comments

On Wednesday night Dr M dropped a bombshell and then ran away whilst it detonated.

Contrary to what was said in ward round on Tuesday, “yes, it does sound like a mood disorder. We shall discuss your notes and call you in later to discuss medication”, they are now questioning my diagnosis, saying my picture doesn’t fit with their understanding of Bipolar Disorder. Now, considering this is based on a half hour conversation with me and a couple days of uncharacteristically fast (for me) mood swings, I am concerned.

They said they want me assessed by the clinical psychologist, which may take “many weeks” before they make any decisions. She isn’t sure where I should wait, here or at home, but is concerned about my safety (which to be honest she needs to be! Being in here doesn’t exactly do anything to convince you life is worth it, when you have already given up).

She said she doesn’t want to change my medication as it might influence the assessment. No mention of taking me off my current meds, which could be doing the same!

Then the meeting was over and I was left to handle the fallout alone.

I am a little shocked. They haven’t seen my Priory notes as the CMHT has lost them. I was under the care of The Priory for many months and I think they had enough time to assess me. Not make assumptions based on a short conversation and observations over a couple of days, which have obviously been influenced by an overdose and stress!

I am concerned that the change of tack seems to have come after J spoke to them. What on earth did she say, especially as she didn’t exactly know me or get the full picture as I didn’t trust her?

I can also sense what is coming. A borderline diagnosis is ahead on the tracks and coming at me fast (or slowly as it’s the NHS). I wouldn’t mind if this seemed to fit, but I am fairly familiar with the criteria and nature of the condition. It doesn’t ring true with my experience. I have no fears of abandonment – I am fiercely independent and quite happy to accept someone won’t be in my life any more, e.g. when therapy has ended. I may miss the person or thing, but not object to losing it and will not try to stop them. I do not have stormy and unreliable relationships – I have been with my partner 7 years. We argue like man and wife and our relationship is strained by this episode of illness, but I don’t love him one minute and hate him the next. My mood swings are not generally reactive and *usually* slower than those suggested for BPD. I don’t suddenly want to kill myself after bad news. Yes, I can express frustration or be upset, but not out to a level that is out of the norm or to extremes. I do not act impulsively without considering the consequences. My major suicide attempts have both been a result of a huge amount of thought and planning. In fact, aside from my mood swings I don’t think I am generally a person of extremes. I also have no past trauma, which is often involved with the condition. I could probably half meet maybe 3 or 4 criteria, but never the 5 needed by the DSM or the descriptions given in the ICD. I’m aware I am having to simplify things through lack of space or time – my thumbs will fall off if I write everything I want to, but I think you get the idea.

Also worth noting that borderline PD is one of Dr G’s specialisms and she never mentioned it to me. She tends to be pretty straight with people, so if she thought it was that then surely she would have been able to say so? She also wouldn’t have referred me to Dr P, him being the mood disorder specialist.

I can’t help but feel this is all part and parcel of the way this label can be misused. Don’t fit classic diagnosis, don’t respond to first line medication, female, suicidal and have mood swings. Oh BPD will do. Lets try and put the square peg in the round hole.

Maybe they aren’t thinking Borderline PD, but the mention of psychologists and lack of anything else even remotely close, suggests they are.

I am also frustrated at the lack of desire to do anything whilst waiting for the psychology/therapy assessment. Even if it was BPD, medication can be helpful with treatment and is often following the same kind of strategy as Bipolar II. She may in a couple months time go back to my current diagnosis, make the same changes and in the meantime I have wasted months of my life stuck on this ward. There never seems to be much desire to get you out, unless they suddenly need a bed then you can be out on your ear, recovered or not.

There are a lot of questions and no one has given any answers yet. I wrote a list of the key practical ones and handed it to my nurse to pass on yesterday, but no mention yet. I suspect I will be waiting until ward round next week.

After all this, my bloke went to see Dr N yesterday for his opinion. I thought this would help but it has made me more confused. Apparently Dr N is quite pleased I am being reassessed as he was never convinced by my diagnosis and he even suggested Dr G wasn’t. I had suspected this myself, but when I questioned Dr G on it, she said she agreed with Dr P. My bloke and Dr N apparently discussed borderline PD for a bit too. My bloke also expressed his concerns about rumination (he seems to think if I stop overthinking and forget about my illness I will be okay) and my blog came up. Apparently Dr N didn’t know I was still doing it! Surprised by this as everyone else, including the CMHT knew. I kinda feel left out of my own care again, so am wishing I had been there yesterday, although I know it is not practical.

Since then I have spent a lot of the last day or so pondering all this. I had a visit from Em in the afternoon which was lovely of her and a short break from everything.

My bloke came in the evening. It was his birthday but he wasn’t exactly full of birthday cheer. Em had got me a cake to give him, which we shared some of, but then we spent the rest of the time talking about all this. He has been doing a lot of research, trying to fix everything and find solutions (typical man).

He has been going over the rumination thing and my lack of positive thinking. I know I overthink. I even overthink good things. The problem is I always have and it feels like part of me. Questioning that feels like a direct attack. It may be an exacerbating factor, but it isn’t the only problem and I also don’t know how I could really change this. I can tell myself to stop and distract myself, but the running commentary just carries on and questions me further. I will almost overthink, overthinking. Distraction works to a point, but when I stop I just go into thinking overdrive instead and I can’t distract forever.

He has all these suggestions of how I can get better and things I need to do. Thinking and therapy techniques, supplements, the usuals of exercise etc. Many of these I do try to employ already and it is all well and good to suggest them, but at the end of the day I am: a) unwell and that can make it hard to do anything, especially when I’m in crisis and all logic goes out of the window, b) stuck in here so many of the suggestions are impractical and c) they may help to some degree but none of these things are going to fix things.

It still feels like he basically wants me to buck my ideas up. I was getting frustrated by this. I know he means well and is trying to help, but I wish he was perhaps more sensitive in his approach. He has gone from acting caring and supportively over the last couple days to criticising me again. I do wish things were all as simple as a bit of CBT, some positive thoughts, routine, eating and exercising well and some distraction. Sadly they are not.

Edit: Maybe this is unfair. The conversation was frustrating and I did feel attacked at times, but I am glad he is trying to help. Some of his suggestions were helpful. There are good bits within the bad. I do just find it hard to see them and I don’t know how much I can do right now.

Today looks pretty bleak and pointless. More waiting and the thought of another long weekend ahead is tiresome. I asked about having Nikki, coming to visit so we could have a walk around the grounds, utilities the nurse said I need to get it sanctioned by the doctor. Considering I am not on a section and would be escorted by my partner this seems unfair. I wish I could just walk out and although in theory I can, they are unlikely to let me. A section would probably beckon, if only an assessment one.

I am tempted to ask for some haloperidol! It is the only thing to ever sedate me and although it turns me into a zombie, I’d quite like to sleep away a few days in an antipsychotic-fueled daze right now. It is not practical in the real world, but in here it doesn’t matter. I don’t have any PRN written up as nothing really works.

Anyway this is pretty long and I’m scared it won’t post! I better go. Xx

16 Responses

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  1. I’m sending you an email x

    Alison

    Friday, 15th January 2010 at 11:56 am

  2. Bloody quacks – don’t know their arse from their elbow half time. It does sound suspiciously like they’re going to throw BPD at you, it being the perennial wastebasket diagnosis. All I can say is that you should fight them on this – insifar as you’re able – because it doesn’t sound appropriate at all given what you’ve said.

    Good luck and take care of yourself. Hugs x

    Serial Insomniac

    Friday, 15th January 2010 at 12:36 pm

  3. I’m really sorry you’re getting all this crap. I would really just like to echo what SI said, fight them as much as you are able. You shouldn’t be just left to fester while they are busy shoving their heads up their arses.

    *Hugs* XXX

    Karita

    Friday, 15th January 2010 at 1:49 pm

  4. You can get your notes from the Priory to CMHT regardless of whether or not they lost them. The Priory will have sent them a copy, the original will still be there.

    Ask for a new copy to be sent over and also ask for your own copy of the notes.

    Once you have them, tell your psychiatrist that you are concerned that they do not agree with the doctor at the priory who had the opportunity to observe you for many weeks. Ask him to read your file and see if he still comes to the same conclusion.

    You know what I think you need to do about the bloke.

    DeeDee Ramona

    Friday, 15th January 2010 at 9:09 pm

  5. Ok, I’ve had a think about this and here’s what I think might work:

    1) Get your notes from the Priory.
    2) Read through them and note down the evidence that they used to come to the conclusion that you were bipolar.
    3) Compose a letter to your doctor, and cc a copy to absolutely everyone involved plus the CEO of your trust. This letter will first of all state that you were in the Priory from X to Y and you include a copy of the notes, and in Hollins park from A to B.
    While you were in the Priory, you were diagnosed with bipolar disorder, for the following reasons (list the evidence as a set of bullet points, keep it to 6 or 7)

    (con)

    DeeDee Ramona

    Friday, 15th January 2010 at 10:21 pm

  6. (con)

    You are concerned that you are being considered for an erroneous diagnosis of borderline personality disorder and you feel that this would seriously compromise your treatment.

    You feel that you do not have BPD for the following reasons: (list, as bullet points).

    You want to discuss this asap as you feel that medication is your best chance for controlling your bipolar disorder and the bpd diagnosis will simply result in chronic, severe illness without access to medication.

    You would also like to state that your social worker has been extremely unhelpful and you would like her excluded from all discussions concerning your case as she appears to not have the slightest grasp of the symptomatology of severe mental illness.

    Then, contact an advocacy organisation and arrange for one of them to come with you for your next meeting with your doctor. Bring copies of the letter and notes.

    Go from there. I have spent years dealing with doctors and the only thing they care about is notes and documentation. A professionally-written letter plus evidence is your best bet.

    DeeDee Ramona

    Friday, 15th January 2010 at 10:24 pm

  7. I said it yesterday, you need to fight them on this and get an advocate. I think DeeDee has the plan so just slap on your boxing gloves and go kick some arse because seriously, they can’t leave you without medication or change for weeks whilst they fart arse around being unhelpful. I have boxing gloves too if you want a hand.

    Take care and chin up lovely, hope you liked the cake lol xx

    eccedentesiast

    Friday, 15th January 2010 at 11:06 pm

  8. Nod. Nod. Nod.

    Sigh.

    la

    Friday, 15th January 2010 at 11:51 pm

  9. Just to add that I agree with everything above. You cannot risk being diagnosed as BPD and having the meds that are controlling the mental health condition you have taken away from you. It will do you no therapeutic good whatsoever.

    I know fighting when you feel like this is hard, but unfortunately sometimes it has to be done.

    Big *hugs* and best of luck with it all,

    xx

    Ruth

    Saturday, 16th January 2010 at 3:50 pm

  10. Thanks everyone!

    I don’t know if to preempt them or if to wait. I raised concerns about the change of dx yesterday when I saw Dr M and she tried to reassure me they won’t shoehorn me into a diagnosis, but I wasn’t convinced.

    I am not sure I want those immortal words hitting my notes unless really necessary which suggests act now, yet they may already be there or of course it may not happen.

    I had already contacted PALS to try and find out the trust’s policy for disclosing notes but no response yet. Planning to try on Monday. The PALS guy may be off or something.

    Need to contact The Priory and ask about my notes. They are already sending over extra stuff here as Dr M’s secretary has requested them.

    I am concerned they will decline access. I am also concerned about coming across as paranoid. After all, stress-induced paranoia is meant to be a BPD trait!

    I am also concerned if I fight they will bring out the “functioning too well” thing (see twitter, post soon) and will drop all support anyway.

    I feel pretty powerless and trapped. I don’t know if to just give it a chance to progress and see. May get prepared with copies of notes though!

    intothesystem

    Saturday, 16th January 2010 at 11:37 pm

  11. You have a legal right under the freedom of information act to see all notes concerning you. It’s not their decision.

    DeeDee Ramona

    Sunday, 17th January 2010 at 11:07 pm

  12. Also forget about being seen as paranoid. You don’t have to explain why you want the notes. You are entitled to see them.

    DeeDee Ramona

    Sunday, 17th January 2010 at 11:07 pm

  13. Hello,
    Do what the guys have said above and you’ll get the best chance you will get of persuading them.

    Also, it might not be BPD: friend of mine has recently been discharged concerned that he was going to end up with that label rather than bipolar disorder, but instead they suggested Aspergers and schizoid personality disorder. This appears to be based on the fact that he was on the laptop most of his stay (not once did they *ask* what he was doing on there, which was talking to his friends as it was cheaper to tether than call). A lot of what you’ve said feels like people exercising their prejudices about certain human traits and medicalising them :-(.

    Good luck, and I assume you’ll blog what happens: I’ll be waiting ^_^

    leymoo

    Monday, 18th January 2010 at 6:27 pm

  14. Saw this post on the Mental Nurse roundup, and it struck a chord because I recently argued my psychiatrist into taking this diagnosis off my care plan. Well, he said he’d take it off. He is the king of bullshit, so I’ll wait and see what actually happens. Anyway.

    DeeDee Ramona’s plan sounds like a good one. What I did was write down everything I wanted to say, so I wouldn’t forget it – went through the ICD-10 and DSM-IV diagnostic criteria in mind-numbing detail and then wrote, in equally mind-numbing detail, why I didn’t fit each one. With examples. And paying particular attention to the fact both say you can’t diagnose a personality disorder if another psychiatric illness explains the symptoms better. And jumping in with “DSM says no” when he tried to use self-harm as proof of impulsivity.

    Oh, and I got a friend who I’ve known for ten years, who was also a long-term girlfriend for some of those years, to come with me, and tell him I was the least impulsive person she knew and in fact my stability was terribly boring.

    I don’t know how well that will apply to your situation, since we’re in different parts of the system, but I wish you luck. It’s a bastard of a diagnosis, and I know exactly what you mean about how you can see it bearing dowm on you. He tried to tell me it was “just a theory”, but I reckoned if it was written on my care plan then that theory could do a hell of a lot of damage. I really hope it goes well for you and you get the help you need, and not the non-help that’s convenient for them.

    Lorna

    Monday, 18th January 2010 at 11:42 pm

  15. I’m really sorry to hear all this. The same thing has happened to me in the last two years but they have now come full circle (after spending a year of my life in hospital!) and said that my dx is indeed bipolar! But as a cover all i also have unhelpful personality traits. I have to laugh or i’d cry for a very long time!
    Re. the notes. I thought too that i would have a right to see them but was informed that my Psych had blocked this as he thought it would be detrimental to my well being? Hope you have more luck. x

    starrunner

    Tuesday, 19th January 2010 at 9:00 pm

  16. […] you may have read, there was talk about changing my diagnosis when I was first admitted. I was a little surprised and worried about this to say the least. It was […]

    Diagnonsense… « Into the system…

    Tuesday, 2nd March 2010 at 5:53 pm


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