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.
I'm thinking of getting a blood pressure monitor. My readings at the GP are always borderline high but my stress level is only marginally below panic when they're taken. One time it was much too high because the GP decided to bring up a triggering topic while the cuff was on my arm. Five minutes later, after changing the subject, she did it again and it was a lot better. At home I have symptoms of low blood pressure that improve when I dramatically increase salt intake.
Thank you. Good to know people power can work. Kind of what I'm aiming for.
The point of smaller hospitals in rural areas (as opposed to huge hospitals in big cities) is very important - I’m originally from Rural Ireland myself, despite being 21 years here in Manchester U.K. but it caused huge problems for people generally when the health boards there went under the HSE (like the NHS here) and despite contacting thier local TD (like an MP here) they got nowhere, but when children were involved, people power sprung into action and they raised it with the Taoiseach (PM) after launching a campaign in Dáil Éireann (Parliament) and eventually, people with autism were also included in this, which happened a few years before Covid and I recall seeing something about it on RTÉ (TV) at the time
Yes, it is a nightmare because you feel like you're getting to know and trust a doctor and then he or she isn't available to see anymore for whatever reason. It seems to be who you get on the day but I think that's wrong, it should be choice and who you feel comfortable with.
Thank you. Yes, indeed. I find dealing with different doctors a nightmare. It seem like no one get to see the same one twice any more and you are always starting over.
A relationship with ONE doctor unless they are on leave would mean that they might learn how best to communicate with us.
And yes, I find it hit and miss with the receptionists. Sometimes they get that there is a need to go slow and not overwhelm me, sometimes they just get bolshie when I'm struggling.
All of this is excellently put - and thank you for doing this. It might not be a big deal for everybody but it sure is for me! I have huge medical phobia which almost always stops me getting in touch with my doctor, 1 because of receptionist who overwhelm on the phone with their attitude and 20 questions, but also not being able to see the same doctor every time is a nightmare for me - if it was the same person I could maybe build a routine and get used to it but it's not an option here.
I find going to a busy surgery overwhelming as well, like in hospital they are busy, loud and the lighting is horrible. The radio is on always too loud. It's a shame they don't do what some supermarkets do now - an autism morning where no radio and the lights are dimmed.
That would solve a lot of my problems and also for my two sisters, as they are autistic and have the same problems with a medical setting.
I would prefer a text service with a doctor and receptionist rather than the hassle of a phonecall.
I live in hope that things will change for us and be better suited for us all in the future.
The local pharmacy is only doing free blood pressure over 40 years. Under 40 the reading won't be recorded. When eventually see a GP, may raise the issue. Absolutely ridiculous. Plus pharmacist may able to provide antibiotics and sick notes.
Thanks for your contributions every one. My appointment is the 19th May, so you can keep them coming until then, when I'll post and update
I second that.
A doctor who is autistic or who is trained would help me enormously.
And yes, mental health have done me more harm than good too
We generally don't know enough about menopause and autism, do we? Certainly my general problems with access to medical care meant mine went untreated.
I'll add this to the list. Hope you get what you need in the end.
What an excellent thread. You are awesome Dawn, we need more people like you fighting our corner.
We definitely need better ways of communicating with GPs. I would love an email or text service, something to get past having to speak to a receptionist which is not easy.
Also wish there was specifically trained medical staff who know and understand autism. In my experience people don't understand us, especially doctors and that adds to the trauma and anxiety of having to see one.
Most doctors I see try to cure my autism and refer me to mental health services which I've found causes more harm than good.
Wow! No e-mail in 2023!
Yes, indeed. I've had that experience.
I do write to my GP over non-urgent matters, but can take weeks for that to be seen and replied to. Some things get lost in the admin. I understand they are busy and overwork.
Useful as that approach is if not urgent, that's no use at all if it is.
This is brilliant you are doing this. I am AUDHD and Dyrpraxic. Recent diagnoses. I had quite a good system for a bit where I emailed the doctors and they forwarded it on to my GP who would reply via text message. It took several years of pushing for this and now they have stopped doing it and refer me to another ‘portal’ which I have not yet successfully accessed, so not dissimilar to many other experiences written here. What I wanted to mention was menopause support, which I was unable to access for many years, being incorrectly given SSRIs, which have taken me 6+ years to get off (once I realised I was AS). Have since discovered researcher Rachel Mosley from Bournemouth uni and @AutMen who are now doing studies. At my wits end I paid for a session with a specialist at Menopause Matters who, because of my ND presentation as well as late stage Endometriosis and Fyborids, I should see a meno specialist asap. This letter was sent to my GP who sent on to nearest provider (Leeds, I’m in Bradford), who eventually responded and refused to accept me as they were only accepting within catchment. Therefore there is NO menopause support for any woman in the Bradford District, or Calderdale and many other places for that matter, if Leeds are refusing. I have written to my MP (Naz Shah) and had an email back saying it was ‘being looked into’. It would be hugely helpful if you were to add this in to your message as so many women slip through the crack at this point in their lives. I was almost one of them, although now I’ve had the AS diagnosis, I understand a lot more. Good luck!
Maybe if it was non-urgent, but so many of us tend to put off trying to get medical help until is is urgent that I would prefer a more prompt response. Plus it really is just not OK for that to be a standard wait time! I would worry my email had been lost and was never going to get an answer.
I wouldn't even mind if they took a month or two to respond, as that's the standard waiting time for an appointment anyway. My GP simply doesn't have email.
You are very welcome! I hope the video is useful for you.
Thank you. Watching now
Hello Dawn.
You are a great advocate for our autistic community, I can see how passionate you are about the issues around accessing healthcare.
This video below is about barriers accessing healthcare for autistic people (many of which have already been very eloquently described in your brilliant letter) but it could still be helpful:
https://youtu.be/s_8CZKmxxco - Healthcare barriers when Autistic
I don’t have any other ideas but thanks for advocating for our community!