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?
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'????
Yes, "complain" is their answer to everything. They just hope we'll get tired and go away.
I'm sorry you've been through this.
...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.
Sadly, I'm not in Wales, but I'm heartened to know somewhere in the UK has one
Isn't it just?
Thanks Tulip, but not up to it at the moment, I'm exhausted and have had my fill of complaints and things like that for the time-being! Thanks though
Im sorry to hear this but it doesnt suprise me. Have you considered raising a concern? X
sure, I realised afterwards! thanks
I'm not the original poster from the other thread. It's probably best if you copy your reply directly on there, otherwise Ian won't see it.
Sorry if that got a bit tangled - I was replying to the two things in one having looked at the other thread as well
Shockingly bad. Sorry Ian to hear what you and your son are going through. Everything is such a mess these days. I know from personal experience that things in the North can be a lot more brutal in the way you're treated, (being heavily ex-industrial etc.)
In my experience, like most stuff, it doesn't really translate to anything. We needed help recently with an issue that was literally trying to finish us off with stress, it should have been within the remit of the Autism Lead to help,I thought I'd hit on a lifeline!
We found out who that is for the county, contacted them to plead for assistance, advocacy, something, anything???! And the Autism Lead's assistant came back and told us they were not going to do anything, literally less than nothing. They just said 'make a complaint' to the dept involved, good luck - bye, pointless response that didn't take in to account autism or the difficulties involved. It was crushing and after months and months of horrific stress it just put all the onus on us again that we already couldn't deal with. We were tearing our hair out. You have to wonder what it is they actually do do...?
I'm not aware of any other areas that have taken such drastic measures. Adults are being denied access to even join the very long waiting lists. That means they cannot use the right to choose route either.
https://community.autism.org.uk/f/introduce-yourself/33844/hello-from-yorkshire
I think that's the case in most regions, sadly, and very very long waiting lists. We are persistently let down by the system
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.
Wales has an Intergrated autism service. I havent accessed it.
autismwales.org/.../
Dawn said:But they said they weren't commissioned for people who do not have a Learning Disability
That’s very misleading!
Yes, wholeheartedly agree. It doesn't make a whole lot of sense does it. The staff are there already.
Don't get me started on dentists, wowee, ugh
LongFerret said: I don't really understand why the advocacy for LD can't be extended to include us.
Absolutely. The Learning Disability and Autism service were the first place my Special Care Dentist tried. But they said they weren't commissioned for people who do not have a Learning Disability. Hmmmm...so, not the Learning Disability AND Autism Team then, are they? Just the Learning Disability Team and by the way some of their clients are also autistic.
I'd have thought this would be the logical place to have such a service.
Hi Dawn, sorry to hear of your troubles with access, you are not delusional to be incredibly anxious!
Even before my diagnosis I kept asking for this, an advocate, or go-between, as my access has got worse and worse as the years have gone on. It fell on deaf ears and was met with blank faces, and basically ignored (both in MH and the autism diagnostic unit). There's only so many times you can ask before you give up. You'd think we were asking for something outlandish. Advocacy is badly needed but I think the chances are realistically nil. I don't really understand why the advocacy for LD can't be extended to include us. Our difficulties put us at such a huge disadvantage.
Access to GPs is really autism unfriendly now, you know, I mean with the 'triage' system first come first served at 9 a.m and you're lucky to even get through, and then explaining your symptoms to a non-medical receptionist, who says in a big booming voice within earshot of the whole waiting area "you've got a what on your what?" or whatever! It's terrible.
I'm lucky that my partner acts as a go-between now and often speaks for me to whoever, GP, consultant. Without this I'm goosed, no GP/health access at all. I mean literally none! As a rule I avoid it all anyway. I get so anxious I can't actually speak, and in the past I forced myself and I always hated it when the receptionist is going HELLO? HELLO? HELLO? And all you can manage is a strangled squeak!
NTs take speaking so much for granted!
Have you lodged an autism passport with your GP to get your difficulties front and centre in your records? (and taking it to any hospital appt's or stays?
Maybe you could write letters to the practice to help things along a bit?
Sorry to not be more help!
A lot of NTs treat a trip to the doctor like a day out, only stopping short of getting a packed lunch out! - totally unfathomable to me!! I get so anxious I can't walk and feel like I'm continually about to pass out! (and that's just in the waiting area!)