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.
My GP surgery having an email address would solve 75% of my problems accessing healthcare.
Honestly, most of what I go to the GP for appointments about could be dealt with better by email. e.g. I last went in to ask for autism referral. It would have been much easier and less stressful for me, and less time-consuming for the GP, if I could have written my thoughts concisely in an email, attached my AQ10 and AQ50, and waited for a response. I wouldn't mind waiting a few weeks for the GP to reply - it's a minimum 6-week wait for an appointment anyway.
I need to go again to ask for referral to a GIC. Again, it would be much easier if I could put my thoughts in writing and the GP could read it and make a decision based on that. Perhaps they could put a character limit on their email/contact form so people are forced to be concise, if there are concerns about being bombarded with lengthy emails. Otherwise I have to spend several weeks writing a script and then practising it every day until I have memorised it to be sure of not being drawn off course during the appointment.
I can't use a telephone and have been denied access to some services as a result. When I told the mental health team I couldn't use a phone, they said "it'll mean a much longer wait." When I contacted them several months later it turned out they hadn't bothered putting me on the list at all. I've told my GP surgery multiple times that I can't use a phone and yet they still try to call me or direct me to call them.
I would love an option to permanently opt out of screening programs too. I have opted out of some through the central NHS system, as in I no longer get invitation letters, but GPs still bring it up every time I attend for a physical health reason and discussing it then takes up the majority of the appointment.
to be honest.... i think the online "ask my gp" feature that gps have now have done wonders in allowing me to access healthcare... before when you had to go in, wait in que, speak to a person at the reception and explain any embarrassing possible issue you have to some random stranger to their face, then sit in a waiting room for 3 hours amoung germy coughing people... i couldnt do that so i never had access to healthcare because of that... but since they made the online asky my gp feature i find it super easy to access healthcare now. no more talking face to face with a stranger about stuff you may not even want to talk to anyone about, its hard enough talking to anyone so the whole talking thing was a roadblock... as i said the ask my gp online feature is the game changer and allows full access to healthcare... well id say that, but gps themselves still shrug you off and mark you as solved when they havent done anything lol
Hi Paper
Sorry you had this experience.
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!
That makes no sense whatsoever! Presumably you have asked to contact your GP surgery in a different way?
Dawn said:I'll second all of that. I do much better expressing what's wrong in writing.
I'll second all of that.
I do much better expressing what's wrong in writing.
Thanks! Exactly, I much prefer written communication, it is much more natural for me and I can be much more articulate and expressive via the written word.
Dawn said:Both my elderly parents struggle to make the simplest things out on the phone. My mother, due to mini strokes, now has rather fragmentary speech and her nouns go walk about. Yet it's been two years since a doctor has seen her face to face. She finishes every phone call none the wiser than before it and I'm sure the doctors aren't understanding what's wrong.
Both my elderly parents struggle to make the simplest things out on the phone. My mother, due to mini strokes, now has rather fragmentary speech and her nouns go walk about.
Yet it's been two years since a doctor has seen her face to face. She finishes every phone call none the wiser than before it and I'm sure the doctors aren't understanding what's wrong.
That’s so unfair for your parents! It’s so important that healthcare is adapted and made accessible for everyone because it literally can be lifesaving!
Pegg said:have learned just how common that is for autistic people.
Yes it is very common in our autistic community, I think this is because phone calls make communication more unpredictable.
Good way to summarize
Yes sometimes I've been so fearful of going in and so concerned I won't express what wrong in the right way, I've written, only to have to chase this up 6 weeks later to find nobody read it.
Dawn said:And yes, they seem to have no consideration for the hearing impaired either
Also true - I am now hearing impaired, but still expected to communicate via phone, it's doubly difficult.
How about services to help us access health care?
One issue is about adaptation and reasonable adjustment e.g. the dreaded telephone. But another is about support to get in there and through procedures. Some may have a loved one to step in here, many don't.
If you struggle even to cope through a face to face appointment or in a hospital environment and you are alone, what would you want by way of support, advocacy or mediation when you are there?
This meeting of course is about commissioning. What services do we want to see commissioned?
The reasonable adjustments are all doable within existing services if staff understand and are willing - that much is about training.
And yes, they seem to have no consideration for the hearing impaired either and I would have thought their needs were more obvious than ours.
NHS is falling apart generally and I think most of the public are experiencing a lot of these problems.
The autism specific things I'm hearing here though is that all that is a LOT of executive strain to have to keep chasing stuff up, a lack of flexibility about communicating with surgeries and a lack of adequate detail as to what to expect from whom and when.
Personally, I think reception and admin, if properly trained, could do a lot to smooth some of this out and get us talking to the right people at time.
Would that be a fair way to summarise?
I prefer email contact, but am not sure how frequently my surgery check their 'in' box.
The advantage of an email conversation is that it can be read back, and people are usually concise.
Ben
Yes, I think that's true - certainly not using the telephone, there's a general assumption that everyone can do it easily, unless they're physically unable. I've struggled with using a phone for as long as I can remember and since being here, have learned just how common that is for autistic people.
It's definitely an issue.
Glad you agree! There is not enough thought given to people who communicate differently or are non speaking.
Ausomely Autistic said: For a lot of us autistic people using the phone does not suit our communication style for a variety of reasons
Yes - alternatives to a phone call, either to contact GP surgery, or be contacted by them, would be extremely helpful.
Hi Dawn
Thanks for asking for our input! I hope your meeting goes well, good luck!
I think there should be alternatives to using the phone in order to contact your GP surgery that are made available for everyone regardless of neurotype.
For example, text based web chat, video call or email. For a lot of us autistic people using the phone does not suit our communication style for a variety of reasons including situational mutism, fear of unexpected calls or vague communication.
Not only would this help our autistic community but also other people including:
Thanks Dawn! You are a great advocate for our autistic community!