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.
Thanks for raising this issue! I agree that it can be very hard to access healthcare. Last year I was getting increasingly burnt-out, loosing a lot of weight due to stress and ibs and my diet having become very limited. I was in a bad shape physically and mentally. It took me 4 months from first reaching out to a gp to actually getting an appointment- i filled out their online form countless times, tried calling etc. Luckily I had good support from my dietitian (though this is privately) and I wasn’t expecting much help from gp for my issues anyways and had mainly wanted to get a blood test and my physical health monitored. I ended up improving on my own. However this situation highlighted to me how inaccessible care is. The online consulting form from my gp was also very confusing. They changed the times it was available but didn’t specify anywhere what times you could fill out and submit the online consulting tool. In addition a lot of autism related challenges are very misunderstood by medical professionals- in my case it was my issues with ibs and food- i got very bad advice which made things worse. Plus it took years of misdiagnoses until my dietitian realised I might be autistic.
In terms of practical suggestions, i think it would really help if gp practices at least had clear explanations of how to reach them and what to expect (not just recorded messages on phone). Also somehow the system must change so that it is not simply those that shout the loudest that get seen first. I’m not good at advocating for myself and it is stressful to reach out, and I don’t exaggerate and often don’t get accross how bad or urgent something is. Not sure how this issue can be addressed but there needs to be a better way of prioritising who gets seen first and it needs to be taken into account that the most vulnerable people might have the hardest time advocating for their needs- they need care most and are probably least likely to get it as they go unnoticed. This is not just for autistic people but for anyone who is vulnerable- thinking of mental health issues too etc.