Published on 12, July, 2020
Hello lovely community,
Some of you may well be bored of me twittering on about access to health care given the medical/body terrors which result from the sensory processing etc...lol
But it seems I have an appointment with my MP to discuss these frustrations and lack of commissioning for any kind of supports. Obviously, this is problem is of immediate personal import to me and I do seem to be a bit of an extreme case in finding this barrier, but I hear so many of you expressing at least some or even many of the issues I face too. Thanks guys, at least I know I am not alone! But I am also acutely aware that that being the case, I am not just presenting an argument for provisions for me, but for all autistic adults as I go into this.
I'll copy a precised version of the brief I sent to my MP's office below if anyone wants to be bothered reading through it, but in case there are essential points I have missed to some of you, my question to you is do you have needs I have not covered here? Do you think I am missing any essential points here? What would you like me to be saying for us all?
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I approach in desperation as there seems to be nothing commissioned anywhere to offer the necessary support to autistic adults to access health care. This is a complex topic, which I outline as briefly I am able.
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Among the problems for me and many autistic people are:
…Many reasonable adjustments can be made to mitigate some of the above but this depends on medical staff understanding the situation and the need that they are looking at and most do not because they have not had the training. Even high IQ autistic adults who can self-advocate in other situations may be deprived of an ability to communicate their need effectively or at all in these situations and are hardly at that point in a position to educate staff, who believe they are just being difficult. Organising and communicating to achieve adjustment adds significant executive strain on autistic people, who may struggle with this even when not under stress
It should be obvious that what is needed for me and for many other autistic people is significant practical support to make medical appointment where reasonable adjustments are planned for, during them to ensure staff understand that any behaviours of the shutdown/meltdown type or stimming are not a lack of co-operation or aggression aimed at anyone but the product of sever distress, ensure that the needs of the individual are communicated when they cannot do that for themselves and to ensure that the information given is taken down in writing and understood, and sometimes specialist nursing support afterwards to help cope with remaining difficulties due to the impact of procedures may be necessary.
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These services; … it seems exist ONLY for children and the intellectually impaired. The rest of us are left to go without any medical care or else continue to experience high levels of distress in medical contexts unsupported with further detriment to the little care we can receive. Recent research from the University of Brighton has indeed shown that these issues are costing the lives of autistic adults. Many are just not going to the doctor because they can’t even book an appointment.
In my case the following has been investigated:
To date, two social prescribers, my special care dentist and the OH lady from work and me are or have been running around these circles trying to find some avenue for support only to be passed from pillar to post, until we are all dizzy. The truth is nothing is commissioned to ensure that autistic adults can access healthcare if they do not have intellectual impairment. This needs a concrete permanent plan of some sort for each individual and none can be made by anyone.
So, my question to [MPS NAME] about what can be done and what can be commissioned is personal, but also more widely for the many other autistic people who are experiencing some or all of the problems I do in medical situations. Autistic people all have ‘spikey profiles’, we can experience sever impacts in some areas of life but cope albeit with more difficulty in others. I am so-called “high functioning”. The autistic community does not like or buy into functioning labels because they are misleading. I may have a job, a degree, a home and friends, but put me in a doctor’s surgery or a hospital and I can suddenly become every bit as so-called “low functioning” as those of my autistic siblings who have no oral language at all and/or intellectual difficulties.
This is brilliantly put and covers so much. I don't think you've missed anything.
Excellent work.
If you could even fall asleep knowing that would happen! And I expect lack of sleep messes with blood pressure...
Yes, uncomfortable and at times painful and all for no gain. I cannot think that the readings during the night, after being shocked from sleep by a noisy machine suddenly squeezing your arm, can have been very useful, or representative.
Yes indeed. I can email my vet which works very well for me - shame they don't do the human animal as well! So much easier to deal with, although they don't always answer the phone at busy times. And they can see you the same day...
Eek! I already turned down one of those, sleep is an obvious problem but hadn't thought of the driving one - so potentially dangerous! And then for it all to have been for nothing!!!
I was persuaded to wear a 24 hour bp monitor - yes, it just does what a normal upper arm cuff machine does, but automatically, every hour. So sleeping is not going to happen - total nightmare. However, the damn thing started up when I was in the middle of parallel parking my car. I obviously couldn't relax my arm muscles, so it just got tighter and tighter - very painful! Then they lost the data from it and wanted me to do it again, I just said no, very emphatically.
For me they have become unbearable because of my physical disability making me lose all muscle tone in the arms so that they are too soft. It has always hurt somewhat, yes I think that is partly a sensory thing as I am hypersensitive, but also yet another thing where a thing is designed for the male body which generally has more muscle tone. I did some research on it when it was first a problem for me (of course I did!) and it is also more of a problem for overweight people as they have soft arms, but also the blood vessels are further away. They need a wider band so the pressure is over a broader area not just like a tourniquet. I am not overweight but maybe should mention that to my dentist? I had forgotten it.
I wonder if it is indeed a thing which affects more of us? Along with what Martin said about the stressful environment, but I know that wasn't it for me as I used to have OK readings. But now I get stressed by the thought of it being too high, and by the covid risk, so that might be a factor now... Might be worth its own thread.
Yes, blood pressure tests always hurt me a lot. I have no idea whether an NT person would find that painful or not? Is it painful and too bad, it is for everyone, or is it a thing that needs to be understood as potentially a different experience for us, I wonder?
The e-mail theme is coming out clearly, isn't it?
My blood pressure used to be OK, but when I got high blood pressure I discovered i cannot use those machines as they hurt me so bad that causes a spike and artificial high reading. Because of my physical disability my arms are too soft I think, when it is done by a human they don't need to pump it so hard. But I was just at my special dentist for a sedation prelim and my blood pressure was high again, but I think they should have done it earlier in the appt, and then also she did leave the pressure too high for too long and it started to hurt. I do not know a way round this pain problem! Maybe if they used my leg which actually has some muscle tone? I mean they would have to if I had no arms!
This is good that you are doing this Dawn, and thanks for including us. You are so right, this problem needs sorting, and I find I get overwhelmed and my poor executive functioning stops me even considering trying to do something about it.
For myself the first barrier is the phoning to make an appt, even if it didn't have to be at 8am when I am barely awake and semi verbal, I find it hard to deal with systems which are increasingly 'press 1 for x and press 2 for y' etc and then they put you on hold! Once I have a real person I am usually OK and have found the people at my GP usually try to be helpful, although sometimes they are limited by stupid rules. Online booking appts would be great if it was actually any good, but if they only have 3 appts at bad times in a month then it is no help! I tried the other online thing a year or two ago and got immensely frustrated by being asked masses of irrelevant personal questions, I just need to be able to type what I need. A simple email would be best for me!
In fact being able to email my GP to ask questions about my health and have them answer by email would be lovely.
If I had to attend, then waiting inside is a huge source of stress at the moment due to covid, and has always been somewhat of a problem as the environment is very medical and physically uncomfortable and one is always on edge worrying about missing being called. My special dentist is great as I can wait in the car and enter via the side door. A&E is terrifying as the wait times are so long.
A thing someone else mentioned in another thread is the closing of smaller A&E units in nice small hospitals and making everyone go to a massive hub for A&E. Yes that means they can have experts there, but I am not the only of us who finds a small local hospital less overwhelming than a huge one. They were going to contact their MP over this so it might be worth mentioning to yours too as it is a vital part of making health care less horrific. Not having to travel so far, and to somewhere more likely to be familiar is less bad than having a longer trip to probably a big city, when big cities are scary overwhelming noisy and crowded places I avoid.
I wrote this before reading the other responses, seems like we all agree about a lot of stuff!
Indeed. Consistency in who we see is a biggie. If just one GP can get a handle on what our personal issues are and how we are affected so we aren't continually trying to explain ourselves and educating them at a point when we are feeling super vulnerable and anxious it would help.
That's not always easy to achieve.
All of that tbh. It doesn't help that we have to be vulnerable and touched by people who are basically strangers, it doesn't matter that they are medical professionals, I tend to find a Dr I like if I can and then stick to them like glue for all the procedures, and even then it is awful, you can't even just stare at the ceilings when in a hospital bed either because the flourescent lighting is hellish.
Once waited 45 minutes as the GP was running late.
Dawn said:so we aren't hanging about in environments ramping up our anxieties for too long.
Indeed .. maybe a text message .. "5 mins until your slot", so you can wait elsewhere andcreturn as required.
Yes indeed, and it wouldn't be beyond the wit of man to convert a little broom cupboard somewhere into a sensory adjustable and friendly space for autistic people to wait in and/or make sure they are top of the queue so we aren't hanging about in environments ramping up our anxieties for too long.
Better waiting rooms.
I remenber being sat in a waiting area for a blood test with my eyes closed and fingers in my ears because of the artificial lighting and noise.
There's so much in this repeated theme about how the communication and visits take place that speaks to a real training need for GPs and their reception staff, isn't there?
I take on board the issue about hearing too. My parents are elderly and deaf and telephone consultations are useless to them as they can't even make out the doctor's name, yet they no adjustments for them.
Very well written, Dawn. Thank you so much for doing this!
I would like for an email or text service with GPs. So many times I've wanted to email and I get rude receptionists who aren't understanding to my autism and disabilities who tell me such a service isn't available and I have to SEE the GP.
I know I don't warrant a home visit but going to a surgery I've got to deal with new surroundings, busy environment, medical phobia and I don't have long enough to explain everything I need to.
An email or text service would put an end to this phobia and sensory overload for me. I'm also deaf so this would make a huge difference for me, but I feel so many others in our position with autism would benefit from such a service as well.