Published on 12, July, 2020
Hello all,
I am new to this forum and I am posting on behalf of wife who has later in life been diagnosed as autistic.
I am reaching out as I am astounded as the NHS's apparent lack of reasonable adjustments when dealing with the health needs of an autistic adult.
My wife has recently been informed that she will have to have a series of outpatient operations in order to remove some precancerous polyps from her colon. She has had two so far which have left her in a really uncomfortable state, which resulted in an A&E visit and another to a walk in centre.
The issue she is having is that none of these medical health professionals are understanding of her autism. I don't think it has even been flagged on her notes. They seem to lack a basic understanding hat she needs to be fully informed as to what is happening, come up with a plan of action and provide some aftercare etc.
The reaction to this seems to be a blanket response of "we can't or won't do that."
I guess I am reaching out to ask if anyone can help on how best we can advocate for my wife as an autistic adult and put across what she needs? Are there any charities that could assist her with this or procedures to follow?
As it stands, there's the risk she won't continue with these procedures as she is finding the whole thing upsetting and no one is accommodating.
Any advice would be much appreciated.
Thanks
Some phrases I have found helpful when dealing with the NHS:
"Reasonable adjustments"
"The NHS adult autism service told me to ask you..."
"If I do not hear from you within a week I will contact PALS"
"Subject access request"
Basically, if you don't at least hint that you know your legal rights and are preparing to escalate things, they will ignore your needs.
My experiences of GP surgeries are very similar and I too have frequently been reduced to tears. NHS 111 is even worse. If you get agitated and distressed due to their attitude they threaten to terminate the call. I spent last weekend trying to get treatment for a badly infected hand and became so exhausted and stressed I am now having to spend several hours a day lying down. When I finally went to an emergency treatment centre, I told them I was autistic and was then spoken to like a 5 year old with learning difficulties. "Your prescription is flying through the sky to the pharmacy!", with accompanied flapping arms gestures. You are absolutely right that this is an issue which needs to be addressed urgently; as you say, the life expectancy statistics reveal a lot.
if i may suggest, report them to the local health authority.
I’m so sorry to hear this but sadly I’m not surprised. My GP practice’s system for getting an appointment is extremely inaccessible for autistic people or anyone who is really unwell and unable to fight and advocate for their needs. Their online form is only accessible at certain times, the questions are not available in advance, and they close the form sporadically- if you fill it out in morning ‘for an urgent’ request but they don’t have an appointment or it’s not urgent enough, then you have to repeat the whole process again. It happened to me that i filled it out in afternoon as it wasn’t urgent as in I need to be seen today but more urgent than 1 month, then they say no if it’s more urgent than that you need to do it again. Then I do it in morning they say do it in afternoon. Also they don’t respect when you say you would rather be contacted by text than phone. last year I was very ill (extremely underweight and burnt out and getting worse) and it took me over 4 months to access a GP- they ignored my 4 forms. I tried to phone, noone answers etc. And when you are unwell and on top of that still working it is very hard to access help.
recently i burst into tears when they phoned me to say yet again, i need to redo their online form (i have no idea why they can’t keep it and deal with next day if full), I burst into tears and hung up- then they called back and gave me an appointment. And even more recently, it was impossible again and I got so frustrated I said it was impossible and that their system discriminates against people with hidden disabilities- then they gave me an appointment.
This is so wrong. Do you have to burst into tears or complain to be seen? I am someone that would never exaggerate my problems or push , i believe the system should be fair and designed to help those most in need and I will wait my turn. But that doesn’t seem to be how it works - those who shout the loudest get seen, those most in need are ignored.
I’m sorry- this is not really helping you - I just couldn’t help ranting about the injustice of the system. It’s wrong on so many levels. Even when you then make it to the GP they don’t understand about autistic people’s needs etc - i’m not sure what can be done though- i’m not even sure they are aware how hard it can be for autistic people to access healthcare.. though the drastically reduced life expectancy should really give them a hint.
There are no NHS service for an adult. Try the CAB and local charities, but do not expect much. It's a postcode lottery, some places are better than others.
I would get in touch with her GP, explain the situation and ask if they can give some direction to the hospital staff - get it added to her file that specific approaches are required for her.
There is a distinct lack of knowledge of autism through the NHS though so this is quite possibly an element that she cannot avoid so may need to defer the next treatment until she feels up to the challenges it gives.
Sorry it isn't better news but autism is a relatively recent diagnosis option in the medical community and disseminating the knowledge of it and how to treat autistic people will have a significant lead time.
Good luck
This sucks, and it depends a lot on the are that you are in as to what is set up.
My area (BANES, Bristol, South - Gloucestershire, and North Somerset) has a system known as a 'hospital passport' which is both on the systems in the local hospitals, and I have a paper copy to give to clinicians. The learning disability team also covers autism and in the past for me went ahead of time to explain to the clinician doing my ultrasound what my autism meant (I really can't deal with gel textures) and how she could help and I ended up having extra time so we could do it a bit at a time with breaks to do major stimming.
This is what a well set up system looks like. Most places in the country do not look like this.
What I can suggest is stuff similar to hospital passports, get a written statement of needs, maybe see if GP can help put NHS header on it? Contact before hand every time and ask it to be put on the notes for every appointment individually. See if your hospital has a learning disability team and if they could help?
Most importantly, put things in writing and keep pushing. It is very difficult, but you will find some clinicians who can help, if only because they are familiar with autistic people and do it off their own back.
Anyone?