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.
Not bored at all, please keep posting about these issues. The autistic community needs people like you with such a passionate dedication to improving lives.
I would echo many of the comments made here already:
My practice had a perfectly functioning online booking system for making appointments. At the start of the pandemic it was taken offline and as far as I know has not been brought back yet. The 8am telephone scramble is stressful enough for non autistic people and impossible for many autistic people. Like others I will suffer for a long time rather than have to make a phone call.
2. Clear communication
Anxiety will reduce if an autistic person can fully understand what is going to happen and when. Sadly this does not happen in most instances and the autistic person is expected to repeatedly phone to chase things up, get test results, etc.
It should be recognised that autistic people can struggle to communicate by speech in a healthcare setting. Written notes to give to the GP should be accepted without question and actually read. The GP should not read questions aloud off their screen but allow the autistic person to read themselves and have sufficient time to consider their answers. Double length appointments should be offered as standard.
3. Training
This is a big problem. There should be one GP in each practice who is considered the lead on autism and commits to keeping fully up to date. Autistic patients should be able to choose to see that GP. That GP should also have enhanced awareness of other common comorbidities that occur in autistic people (eg EDS, POTS, etc)
4. Mental health
Commissioners should enable autistic people to access therapists specifically trained to help autistic people with common mental health problems such as depression and anxiety. Standard therapies, even with adjustments, do not help and actually cause harm. These issues should not be just dismissed as 'part of the autism' as a reason to wrongly decline mental health referrals. Far too often autistic people have to reach crisis point before they can access any help.
In this area too there is currently far too much reliance on the phone as the only method of communication to access mental health services. Initial assessments are all done by phone. The crisis support line on my region operates by phone only, effectively excluding many autistic people from accessing the service at all.
5. Advocacy
Autistic people should have access to advocacy support within the practice if they need it. It could be a specially trained nurse or a social prescriber. They could help advocate where communication problems arise and be aware of how to help if the autistic person goes into meltdown or shutdown. These staff could actively reach out to autistic people who do not access primary care and work with them to reduce whatever the barriers may be.
In terms of your meeting referring to existing research studies on this would add a lot of weight. Autistica have one ongoing with Newcastle University and their published findings so far highlight issues repeatedly commented about on here. They are recommending a comprehensive annual health check for all autistic people by 2030 and there is no reason why this could not be commissioned much earlier.
https://www.autistica.org.uk/our-research/research-projects/health-checks
https://www.autistica.org.uk/news/health-checks-plan
https://www.autistica.org.uk/downloads/files/Health-Checks-Plan.pdf
https://www.autistica.org.uk/downloads/files/Health-Checks-Workshops.pdf
Thank you, Autononmistic! I'll follow those links.
That's a very good summary there for me. There are indeed big issues about the education of medical staff. Frequently they do not know or understand what "reasonable adjustments" need to be made; even fail to grasp why they are needed.
There are also some very serious issues within mental health services which are a whole discussion in themselves.
Where I think you've hit the nail on the head with respect to services which can improve the NHS offer for autistic people is in the advocacy, I think. Much of our issues could be over come if someone were making the appointments for us to arrange the reasonable adjustments ahead of time, facilitate the communication in appointments and negotiate for us when we just aren't coping in these environments.
That, I think is the missing provision. I'm going to dig more deeply into those links now.