Published on 12, July, 2020
Thank you to all of you who responded to my last post.
On a personal level, it's comforting to me to know I am not alone in experiencing these problems. Having been called "delusional" for my medical anxieties in the past by mental health, it is nice to know they are anything but.
On a practical level, I was hearing a number of things in that discussion largely around how to access GPs etc and the absence of reasonable adjustments to communicate with them etc. Clearly, there is a need for a huge amount of training in this regard. There are further issues with respect to the physical and psychological misdiagnoses and unhelpful or inappropriate treatments sometimes arising from professionals' ignorance.
I have also dug into the helpful links provided by Autonomistic on Autistica's work to progress the issue of annual Health Checks, akin to those offered to people with a Learning Disability.
This post is specifically about advocacy.
Given that so many of us have difficulty in self-advocating in medical environments, to the point of not even getting through the GP's door and past the receptionist to self advocate, what are our thoughts specifically with respect to a service to help us get into the surgery and communicate with the GP. (Email can do a lot, but regrettably we can't be physically examined by e-mail. We have to go in sometimes!)
My ex-husband who was a nurse used to advocate for me. He could approach the reception desk for me, make the phone call for me, intervene and explain what the problem was when I could not find the words, explain what was happening when sensory overwhelm was pushing me into shutdown or meltdown, negotiate reasonable adjustments for me, even made medical decisions for me, when I could not.
Without his help now - I'm stuffed. Can't get any health care at all.
It seems to me that what is needed to plug the gap for those who don't have a family member to step in, is some sort of autism expert service embedded into the NHS to advocate even at short notice in emergencies. No such service appears to exist at present. I've been trying to find one for two years. Adult social care won't help, existing advocacy services don't go to GPs appointments with people and it takes weeks to get an advocate anyway and the Learning Disability and Autism Team are only commissioned to be doing this for people with a learning disability.
So, do you think this is a good idea? What would such a service look like to you? What would you want from it? Would this make the difference between getting to and through an appointment for you?
Dawn said:Having been called "delusional" for my medical anxieties in the past by mental health, it is nice to know they are anything but.
That's shocking if you don't already have low self esteem and depression before contact with mental health services you could well do afterwards.
Maybe we're all delusional to believe that anything will change. The commissioners seem to be going the opposite way and looking to cut services even further for autistic adults. In North Yorkshire adults are now being denied access to assessment except in the most extreme circumstances.
...oh they didn't say that to my face. I only know because I accessed my medical notes. What's shocking is that I was telling them a story of sensory trauma throughout and they never believed me. I forgive the fact that they failed to identify that I am autistic, they can't know what they are not trained to know, but I can't forgive the fact that they "overshadowed" and misdiagnosed when they did not understand what they were hearing and then failed to disclose that to me. So, I sat there believing they were treating a medical phobia, whilst they were secretly trying to treat a personality disorder and then blaming me when that didn't help and saying none of that to my face. That was truly traumatising. Mercifully, I refused the meds which could have done some serious damage, and mercifully there was never anything wrong with myself esteem, if there had been that might likewise have pushed me over the edge.
That's shocking that assessments are being denied. A two tier health care system is rapidly developing in this country and the most vulnerable will pay the heaviest price.
But we do what we can and I'll fight the corner regardless.
A very similar thing happened to me Dawn, so I totally understand where you're coming from and the trauma from it. I also had my consent taken away and really abusive breathtakingly awful stuff forced in to my records, I was really badly abused by a psychologist, if I was able to give the details you'd be horrified. I made a formal complaint & was absolutely flattened by the health board's legal dept. - ultimately in the end they told the ombudsman a pack of lies and the ombudsman believed them. I kick myself as I should have immediately gone to court to get an injunction. The ombudsman is just there to back up HBs and rarely comes down on the side of the patient unless it's a really obvious scandal like taking out the wrong kidney. In my case they got off scot free. I'll never get over it. To do what they did to someone with a very very severe medical phobia is pure evil. My phobia is now the worst it's ever been. I'm sure there's some kind of black mark on my records for complaining too as I get really weird interactions with doctors constantly asking if I 'give consent'????
I'm so sorry you've been through that
not brave enough! too fearful of repercussions... Even when things are brought to light, health staff are not sacked, don't face criminal charges, etc., they are not even identified publicly unless they've murdered a hundred OAPs or babies. Everything is in their favour. They illegally took away my consent and put lies in to my records, no-one cared that they broke the law, what else can they do...?? it scares me rigid.
This stuff scares me too. Have you thought about writing about your experience. Often media can be the best way to blow open bad practice when the services themselves will not take responsibility or put real energy into service improvement.
The whole thing is grossly unethical Dawn, and that's being polite, there are lots of staff with an axe to grind taking it out on vulnerable patients who are an easy target, I do think there is an industrial scale problem with abuse. I fear for the future, I really do
It's common as far as I understand, for autism sufferers to be misdiagnosed with really damaging personality disorders. You've got to ask yourself how many folks are walking around misdiagnosed and having to wear it and suffer the consequences?