Published on 12, July, 2020
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.
I only wish I could advise but I'm responding just to let you know that you're absolutely not alone with this. As a family we have a long history of misdiagnoses and yes, one of those was EUPD (which we only discovered when we requested the person's medical records and, although they'd redacted much of the content, there was this one sentence containing that reference which it seems they'd overlooked). I have no idea how such a diagnosis can just appear without informing the patient. It's neither ethical nor useful and I'm now completely mistrustful of them. I'm not convinced they'll have had their training yet either, because I'm in a couple of groups locally and we've actually been approached by the local NHS for our help on what to include in their now mandatory 1/2 day staff training on autism. This was an eye-opener for me, after being for so long on the other side of the equation, seeking help from these NHS "experts"! All I can say is that MH services still seem to be a very long way from behaving in autism-friendly ways, especially given that they often seem incapable of behaving ethically at all. Whenever I think of them the term "unhelpful help" springs to mind so I think you are wise to think in terms of protecting yourself and being very cautious going forwards. I tend to keep a record of everything and, when I do need to engage with them, be very clear about what it is I want from them and pare it down to that as far as possible. I don't like giving them information they could misconstrue or use against us.
Thank you. Bless you. It's good to know I am not alone and I really do thank you for being prepared to share. And how sad it is that we feel a need to protect ourselves from a service which is supposed to help us. I am disturbed that it seems to be OK to make any sort of diagnosis for anyone without the patient being told. I am certainly NEVER going to voluntarily go to MH services ever again.
Unfortunately some will need to engage with them, at least minimally, in order to access other services or get evidence in support of a benefits claim. But even then I think it's wise to be aware of the systemic failings and not to have any expectations of real help. These days I would treat it as a paper exercise with the possibility of incurring their "unhelpful help" as collateral damage.
I wish I could feel differently about it. But I mostly haven't felt heard by them, even when telling them in the plainest possible terms about our experiences, which leaves me feeling as though I need to smash a couple of panes in their Johari window!
Funnily enough, that thought goes through my head. they did say to me at my assessment that I write well and should consider that.
Just now though I am only a couple of months on from my diagnosis and still trying to galvanise the general medical folk to put the right things in place so I can see a doctor.
I just so didn't need to be dealing with this right now. I've been so burnt out and I'm so desperate to ensconce myself in a corner and knit until I feel better, lol
One day perhaps there'll be a book.