(This is not my story. I am very close to the story. However, names have been changed to protect privacy. She deserves to have that intact if nothing else.)
5 years ago, in a County far far away, a woman lay in a bed in casualty in the A & E department of a very well run, well respected hospital. I know the latter of these things to be true because I know a nurse training partially at this hospital. She has nothing but good to say about it. Please bear that in mind during the following.
The woman was white, middle aged, reasonably middle class. Well educated through not in academic terms. Smarter than your average bear in every sense of the word. Well cultured and well read. Well spoken and well mannered.
She had also just split her scalp from ear to ear.
This woman rode her bike, and she rode it every single day. She has no car, the bicycle was her primary mode of transport. She wasn't wearing a helmet. She came down the same hill she'd turned down every single day for the preceding 3 years at exactly the same speed she always did. What had not been there every preceding day was mud on the road from construction traffic.
She skidded. She lost control of the bike. She hit a metal lamppost head on, at speed and then fell and knocked her shin and head on the kerb.
She called the ambulance herself. A passerby stopped, asked if she was alright. 'I'm fine' she said 'just a little knock' as she felt the blood pouring down her face and knew that this was not the truth. The ambulance arrived. She was loaded up. She was asked where her helmet was and answered that she wasn't wearing one.
In the following four hours in which it took for her to be seen by a specialist, she was asked again if she was wearing a helmet. She answered again that she was not. She was asked twice if she wanted them to call anyone. She answered twice that she did not. She said she was fine.
She wasn't. The specialist was told she was wearing a helmet. No MRI was done at that time. She was stapled together, all across her head and let go with a shower cap. Why the shower cap you ask? 'To cover your head dear, it's quite a mess'.
The staples drifted. She healed from the top down. They had to burn away some of the cells that were growing in the wrong place. She wasn't asked if she wanted a local anaesthetic. If she had been she'd have simply answered 'I'm fine'.
She realised shortly after that she wasn't fine. She couldn't walk properly, her balance had gone. She had what was suspected originally as macular degeneration. It turned out to not be degenerative. So she just has a permanent blind spot in the centre of her field of vision. Her fingers on her left hand don't work properly - she has no grip. Her eyebrow underneath which nerves were severed doesn't move. It's the eyebrow above the eye with the not macular degeneration. Her personality changed - though thankfully only temporarily and she found herself becoming irrationally angry for no reason at all. She lost her temper quickly and randomly and felt like she had no control. She couldn't remember numbers and kept forgetting words and names. She had a huge scar on her upper thigh from hitting the kerb which should have been stitched and would have been - had anyone checked anywhere else on her body for injuries except her head.
The MRI almost a year later explained a lot of these things. But she was offered no help and no counselling. No advice. No numbers for charities who help with brain injuries and those recovering from them.
When she was asked, she just said 'I'm fine'.
Her lasting impression of all of this is one of isolation, helplessness and frustration. She was claiming DLA to help with her problems. The final final insult to this women was the withdrawal of all help 6 months before she was due to retire - she was scheduled to move to PIP and was refused. The fact that she cannot grip with her left hand, experienced personality changes as a result of a brain injury, sight impairment and finally severe balance problems weren't enough to qualify her.
When I asked her why she didn't appeal, she said 'oh it was fine, it was only 6 months - the Job Centre were lovely about it and were very understanding when I said I'd timed how long I could stand for and how long I could sit for'.
Are you laughing yet? Isn't this hilariously funny. And gosh darn, but it can't possibly be true. Because that would be ridiculous, wouldn't it.
Every word is true as it was told to me 4 weeks ago. Yes. You may have guessed who this is that I'm talking about and she only told me this story 4 weeks ago.
This person, we are reasonably sure, is an undiagnosed autistic. And suddenly, to some of you, this will all make sense. Don't make a fuss. Don't be a problem. Don't draw attention. If you think this is extreme I am telling you it is not as someone who has literally relocated their dislocated knee 6 times rather than go anywhere near an A & E department. You have no idea, literally NO idea how terrifying A & E is to an autistic person, high functioning or not. My uncle has learned to sew his own sutures rather than go to hospital. This almost pathological aversion to the noise, light, uncontrollable chaos and people touching you without warning is entirely normal to me. I don't think we are alone.
No one asked this woman if her personality change was a result of the accident. No one asked her why she didn't want to call someone when she was all alone and terrified in that A & E. No one flagged her behaviour as worrying. I don't find that worrying. I find terrifying.
So I am asking you to do something for me. I am asking you to tell me whether you, if you work in the NHS, or if you know someone who does to ask them, I am asking you to please tell me what autism training you receive. Because I cannot in all good conscience sit on this story. I can't ignore it. I can't pretend it hasn't happened. It has. And it must not be allowed to happen again. The idea of that woman dying and no one knowing, no one being there to hold her hand (if she'd allow that which is debatable) because she said she was fine when every single last detail of the scene in front of those people in that A & E screamed she wasn't - I can't bear it. And it could have happened. So so easily. Too easily. And it's not fair. It's not fair on the nurses who if they ever read this will discover that so very nearly fucked up catastrophically and it's not fair on this woman. And it's not fair on her friends and family - even if she has so very few of each of those categories.
Don't get me started on the benefits side. That's so broken I can't do anything about it. I don't think anyone can. So I've decided to focus on what I can affect. Please help me do so.
I worked in the NHS as a doctor until I went off on long term sick leave, was diagnosed with ASD and dismissed. I recently had a look at my medical school notes on autism. They said something along the lines of it is rare, mostly affects boys and 95% have an IQ < 100. This was around about 2002. I had no further training on autism after med school. I met an adult patient with autism once. As I had never met one before I did some reading and was very surprised that he appeared nothing like what was in the textbook! There is currently an excellent resource available from NHS Education for Scotland on ASD, but the problem is that autism is still considered a boys' disorder and so clinicians are unlikely to see the need to update their knowledge if they don't work in this area. I have a friend who is a medical student. They were told that it can be difficult to detect women with ASD, so things are moving on somewhat, but there is still a huge way to go in educating clinicians. Time is so precious when working for the NHS unless you see a need for specific training you will not make the time to do it. While ASD is still considered to be a childhood disorder of boys then no matter how good the educational material available, it will not get out to those who need it!
ReplyDeleteHiya - thank you for commenting. This actually makes a lot of sense. I need to sit and do some serious thinking about this and what I can do to change it. Going back to university and studying this, and trying to become a leading expert seems to be the obvious answer but I don't know if I'm a) smart enough and b) well enough. You're right though, the flaw in all of this is a few steps back from frontline NHS.
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