Published on 12, July, 2020
So, if you aren't all bored with me banging on about this topic yet, here's another call for opinion.
In my quest to secure some proper support to get through my own GPs doors nevermind survive hospital treatment, it seems I have secured a meeting with the Comissioners for Coventry and Warwickshirs Partnership Trust to talk about improving the offer for autistic people. (Currently this sucks, simply because no one can wrap their heads around the issues). I'm not imagininging this is a local problem at all. The problems are likely the same nationwide.
In this meeting, I'll be banging on about my own barriers, of course, but this isn't just my issue, is it? I am no more than just one example, or case study, here.
So, what do you want your local trust to offer you to better access your health care? I'll take all your ideas forward with me to that meeting.
It seems that people who are able to use the phone and are good socially are able to get the best service, by phoning up often and making themselves heard. For many autistic people, this is not possible. I use the online booking system of my GP, and I'm grateful it exists because previously I just would go without treatment at all due to the requirement to use the telephone to get an appointment. But the wait for an appointment booked online is 5 weeks where I live, which makes it pointless, so I just go without healthcare.
I don't think it can be improved. The NHS is not fit for purpose, it is underfunded and completely incapable of meeting the demands of a healthcare system. I pay a lot in taxes and national insurance but get basically no healthcare.
Receptionists are typically neurotypical women and they will always give priority to people whose voice they have heard, and who are actively complaining to them and pleading with them or getting angry. I understand that and don't blame them for it, but it means someone like me leaving a short unemotional message on the online system is easily ignored.
"If he really needed help he would phone up" is what I imagine goes through their minds and justifies ignoring me. But that is wrong. I will put up with immense physical pain (I had gallstones) and would still rather writhe around in pain on the floor than make a phone call. I pursued treatment repeatedly with these appointments that I had to wait 5 weeks for, and got nowhere with it.
After months of that I finally got referred to the hospital, and waited 8 months for a basic scan, whilst in pain every day. I had no way to find out how much longer the wait would be. These kind of very long indeterminate waiting lists (whilst being in pain) are awful for autistic people. I don't even care if it would be a long wait, I just want to know how long it will be. Give me a date!
When I could only book appointments by phone at my surgery I just asked to see the Practice Manager and mentioned the Equality Act to her. She didn’t like it but at least twice told receptionists to book appointments for me. Fortunately my surgery has now drastically expanded the ways of booking appointments, the main one being an online form which should suit me fine.