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?
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!)
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.