Misdiagnosis I didn't even know about. Where do MH services stop traumatising people and start doing their job???

K. Tonight I am rocked to my very core. Still shaking.

I'll try and keep a very long story as short as I can. I need advice.

All MH services have ever done for me is traumatised and re-traimatise me. Now, they really have gone too far.

Some six years ago someone close to me was poorly. They handled it badly. Statutory guidelines were disregarded in terms of us as carers, Nice guidelines and sheer common sense were ignored. As a result as carers we were left to face genuinely life threatening situation after life threatening situation to the point my loved one almost died and we were at risk before they intervened. He is better now but tells me now "they were not nice to him". I, as his carer, had PTSD as a result. 

I went through the complaints procedure. Health watch wanted me to go to the ombudsman. It almost did. I ended up with a full written apology on all counts and an hour long call from their chief executive to apologise.

I have life long medical phobias. I needed medical treatment which sparked a chain if events landing me in the lap of MH services myself. They failed to recognise the autism underlying it even though "autism' should have been screaming at them from my every interaction with them. That I forgive. Johari's window and all that...I did not know I was autistic and they had inadequate training to know. That they never listened to me and made a 1001 mistakes in my so called "care" and seem to have a blame the patient culture, I do NOT forgive.

Finally, having figured out my autism for myself, having spent a small fortune on assessments and autism informed counselling myself, and just starting to get some progress now after so much battling I've been in total burn out...something came to light today by total accident, which has me apologetic with rage...

In respect of my divorce my solicitor asked for a GP's letter...only as a consequence of that do I discover that in 2019, those services made a diagnosis of "emotionall unstable personality disorder", which only on googling do I discover is the same as "borderline personality disorder". 

Obviously, there are some people who do have both. And I mean no disrespect to those who have to combat both ASD and BPD,  but I know the latter is a misdiagnosis because they didn't understand the ASD/PTSD in my case.

Point is, how in God's name is it possible for a diagnosis to exist on my record WITHOUT anyone EVER having told me!??? How am I hearing it even exists by accident??? Surely to God, that's not just the most monumental of *** ups, but completely unethical.

I once reached out to MH because the person l love most in all the world was in danger. They let me down and I was traumatised. Despite that, I reached out because I was in distress. And they betrayed me. BPD??? Which one of us is sick here? Me? Or the effing service? I am re-traumatised.

I have enough trouble just now trying to find a safe way to access general medical care and negotiating a divorce with out having to fight this battle too. I'm starting to think I really need to protect myself somehow from the people who are supposed to help?

Any advice on how MH should behave, and what to do now, appreciated.

Parents

  • With the NHS becoming increasingly overwhelmed and remaining as such underfunded ~ involving high staff 'turnover' (burnouts, firings and resignations) ~ quality and continuity of care and aftercare is unsurprisingly diminishing, particularly as “Less haste; less waste!” has as an expression become somewhat irrelevant; what with the increasing pressure to treat increasing multitudes of patients who are waiting increasingly longer durations of time ~ as was the case even before but much more so since the coronavirus thing came along.

    In my case my Post Traumatic Shock Disorder trait clustering was not misdiagnosed as being Schizotypal Personality Disorder, but it did mask having Asperger’s Syndrome quite effectively with numerous therapists ~ with the last but one before my diagnosis accusing me (in writing) of resisting treatment for the satisfaction of so doing.

    In terms though of staying up to date with communications about you according to different institutions of NHS healthcare professionals ~ with your General Practitioner of medicine, it is your right as I have for decades been doing to ask for and to receive a copy of each letter on each occasion being sent either way:


    HOW TO ACCESS YOUR HEALTH RECORDS

    There are a number of different types of health record. Accessing them is free, and healthcare professionals have a legal requirement to allow you to see them.

    GP HEALTH RECORDS

    GP records include information about your medicine, allergies, vaccinations, previous illnesses and test results, hospital discharge summaries, appointment letters and referral letters.

    You can access your GP records, and nominate someone you trust to access them. This can be done online or with your GP., through GP online services.

    To get your health records online you need to register for GP online services. This is a 3 step process that can take from 30 minutes to a couple of hours.

    https://www.nhs.uk/using-the-nhs/about-the-nhs/how-to-access-your-health-records/


    The last problematic letter I got was after inquiring in writing about why I had not received a promised letter (about a mental health assessment for disturbingly detailed suicidal ideations) as to whether the multidisciplinary team could provide any relevant treatment or not.

    The return letter made out incorrectly that the assessment had gone on longer than the normal hour and half (which was actually only 40 minutes), and incorrectly again that it was due to my seizure induced confusion that I did not recall that I would only be informed by letter 'if' the multidisciplinary team could in some way treat me!?!

    I sound record all my appointments with health professions as I understand and comprehend everything in concrete literal terms, and I tend more to translate or transliterate the abstract non-literal stuff ~ sometime after the fact, or not all sometimes if I get seizure induced mind wipes.

    The Patient Advisory Liaison Service (PALS) had to get involved on that one as I was too burnt-out and seizure-fragged to cope with sorting it out myself.

    The philosophy of ‘Doctor right; patient wrong!’ did rather suffer a severe crash and burn session on that one, keeping in mind that I have only given a massively edited and abridged slice of the all that also went wrong in that state of affairs, bless.


Reply

  • With the NHS becoming increasingly overwhelmed and remaining as such underfunded ~ involving high staff 'turnover' (burnouts, firings and resignations) ~ quality and continuity of care and aftercare is unsurprisingly diminishing, particularly as “Less haste; less waste!” has as an expression become somewhat irrelevant; what with the increasing pressure to treat increasing multitudes of patients who are waiting increasingly longer durations of time ~ as was the case even before but much more so since the coronavirus thing came along.

    In my case my Post Traumatic Shock Disorder trait clustering was not misdiagnosed as being Schizotypal Personality Disorder, but it did mask having Asperger’s Syndrome quite effectively with numerous therapists ~ with the last but one before my diagnosis accusing me (in writing) of resisting treatment for the satisfaction of so doing.

    In terms though of staying up to date with communications about you according to different institutions of NHS healthcare professionals ~ with your General Practitioner of medicine, it is your right as I have for decades been doing to ask for and to receive a copy of each letter on each occasion being sent either way:


    HOW TO ACCESS YOUR HEALTH RECORDS

    There are a number of different types of health record. Accessing them is free, and healthcare professionals have a legal requirement to allow you to see them.

    GP HEALTH RECORDS

    GP records include information about your medicine, allergies, vaccinations, previous illnesses and test results, hospital discharge summaries, appointment letters and referral letters.

    You can access your GP records, and nominate someone you trust to access them. This can be done online or with your GP., through GP online services.

    To get your health records online you need to register for GP online services. This is a 3 step process that can take from 30 minutes to a couple of hours.

    https://www.nhs.uk/using-the-nhs/about-the-nhs/how-to-access-your-health-records/


    The last problematic letter I got was after inquiring in writing about why I had not received a promised letter (about a mental health assessment for disturbingly detailed suicidal ideations) as to whether the multidisciplinary team could provide any relevant treatment or not.

    The return letter made out incorrectly that the assessment had gone on longer than the normal hour and half (which was actually only 40 minutes), and incorrectly again that it was due to my seizure induced confusion that I did not recall that I would only be informed by letter 'if' the multidisciplinary team could in some way treat me!?!

    I sound record all my appointments with health professions as I understand and comprehend everything in concrete literal terms, and I tend more to translate or transliterate the abstract non-literal stuff ~ sometime after the fact, or not all sometimes if I get seizure induced mind wipes.

    The Patient Advisory Liaison Service (PALS) had to get involved on that one as I was too burnt-out and seizure-fragged to cope with sorting it out myself.

    The philosophy of ‘Doctor right; patient wrong!’ did rather suffer a severe crash and burn session on that one, keeping in mind that I have only given a massively edited and abridged slice of the all that also went wrong in that state of affairs, bless.


Children