My latest campaign – why do Mental Health consultants change diagnosis without telling the patient?

Just to clarify this obviously doesn’t apply to all psychiatrists as I know there are some excellent patient focused professionals out there but this has happened to me twice and I am hearing more and more stories where this is occurring.
In my experience I have only found out about the change in diagnosis by receiving a copy of a letter which was being sent to my GP. Each time I have battled to get the diagnosis reversed and been successful but I shouldn’t have to do this and neither should anyone else.
I realise that sometimes patients may be distressed and therefore in my opinion it is even more important to ensure this sort of subject matter is communicated at the right time and if necessary while the patient has appropriate support.
The most common occurrence of this seems to be in patients who have a bipolar diagnosis and then suddenly with no warning they find themselves with a personality disorder diagnosis. In some cases this might be correct but in quite a few this isn’t and I have felt in the past that I was given a new diagnosis as an excuse for being discharged from the system.
As I said I was able to get my diagnosis changed back but others aren’t so lucky and therefore people can be left without vital treatment and support during really difficult episodes.
The other alarming factor in this is that people who are bipolar and able to argue their case or stand up for themselves are seen to be obstructive and unnecessarily angry and this can be what a new diagnosis is primarily based on. This in my opinion is very short sighted and in some cases dangerous.
I would like to hear from people who have experienced this and also from professionals so that awareness of this can be raised.
Lets fight to ensure high levels of patient communication within mental health.


6 thoughts on “My latest campaign – why do Mental Health consultants change diagnosis without telling the patient?

  1. Will write more later when I’m not just using my phone but I am battling with this at the moment. They are try to say I’m PD based on one 5-min psychiatrist assessment! Have a full appointment on Monday with the consultant to try and change this as the more I’ve read myself, the more I know I’m closer to bipolar and need treatment for that. My own grandmother was bipolar and I saw her successfully managed with medication. It seems like it’s “trendy” at the moment to label people PD.

    1. Sadly this is very common. A couple of tips is to write down all the points that you want to make & if possible take someone with you. Keep as calm as possible & use non violent communication techniques to communicate with them. I wrote a blog about this or you can search online. Please DM or message if you want to ask anything. K

      1. Thanks, just back and she was actually very useful and compassionate. She listened and has wholeheartedly agreed with the bipolar diagnosis and not PD. Feel emotionally drained though.

  2. I have heard of this happening so often and it annoys me so much, if they genuinely believe in the new diagnosis they should at least tell the patient to ensure that they can access the appropriate treatment.
    I also TOTALLY get the fact that if you are assertive and question your own care this is seen as obstructive and hostile as I found psychiatrists literally didn’t know what to do with me as I asked questions and wanted to understand my illness and my care. I blogged a whole ago about diagnosis and whether it’s the modern day straight jacket:

    Take care
    Claire 🙂

  3. totally with you on this one as i found out i had been diagnosed with BPD on a hospital discharge form. i wondered what i had done to offend prior to this as the mh profs were really dismissive. it took me 18 months to fight this diagnosis which i couldn’t have done without an advocate. even when i got an expert second opinion it was still a fight. finally i have a diagnosis of ptsd complex

  4. hello, a relative of mine has had an ongoing battle with the same mental health trust you are with over this very issue. there is a serious problem in coding, communication, appropriate assessment and complaint responses and we are likely to be taking the complaints to the PHSO later this year as we don’t think we can get any further with local resolution. We actually asked them to raise the issues with the board of governors but no idea if that ever happened. my relative was not told about a diagnosis and only found out about it when a benefits tribunal sent some medical records that had been sent to them without us being informed. My relative then spent several years requesting to be given the criteria he met for the diagnosis and over a long period and repeated requests it eventually emerged that theyd never actually recorded the criteria. Bizarrely, but unfortunately ive heard it’s not that uncommon, despite the fact the diagnosis was eventually removed they deny it was ever misapplied in the first place and simply use broken record technique to repeat that conditions can change so that the fact they have never been able to say what criteria was met, and that they have agreed no criteria is met now, doesn’t mean they got it wrong in the first place so it stays on record – and would have to stay on record anyway since ‘that was medical opinion at the time’. Interestingly, we asked the Trust if they had had any other patients complain formally or informally about not being told about diagnosis and were told they were not aware of any other patients having this problem.

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