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A&E Experiences

awetismblog

We regularly have to visit doctors with our son who has autism and also need to visit A&E often. Our experience of A&E has mostly been negative with even the better visits, where we encounter kindness, being marred by ignorance, lack of empathy or long waiting times In inappropriate surroundings. Do many people have this experience? I would be intrested to know what kinds of experiences people have.

I have also started a petition to try to start change in this area. If you have time could you please sign this and share it with your friends?

www.change.org/.../shona-robison-improve-nhs-a-e-care-for-people-with-autism

Many thanks.

  • I've had both positive and negative experiences in hospital accident and emergency departments. Negative for the most part as I'm usually approaching deaths door when I'm present in the department, the result of my pipe according to my good lady but I've been smoking since I was twelve and I feel I have earned the right to enjoy one of lifes little treats. The old ticker will pack up one day anyway and at my time of life my pipe isn't going to make much difference.

    Now that I know of my autism I can see how inappropriate the old accident and emergency department is for individuals like us. The bright lighting, insufficient seating, understaffed, a nightmare for anyone let alone people with our daily challenges. The health system needs adjustment for autism. It might change one day but in all the years I've been around it is only getting worse. 

  • in reply to VLD

    Wow, only 3 hours?! My Dad had to go in 2 days before new years eve. He phoned 111 and they called him an ambulance, but it hadn't shown up after a few hours so when he told use we drove over and took him in (after cancelling the ambulance, which would have been 8 hours! It was after 11pm by the time we got him there and it was so crowded. He did get a seat, but i had to leave him there as we were told the wait would be at least 8 hours and he was not unable to advocate for himself, but I would have been too unwell to help him the next day if I had stayed with him. The wait was in fact longer than that. Providentially his condition improved somewhat (he had a kidney stone and it must have moved) but if it had got worse enough that he passed out he did not feel confident he would have survived! It is totally unacceptable, not just for autistic people.

  • I've had both good and bad experiences but I was undiagnosed at the time. One positive experience I had was when I cut my knee open badly needing stitches. The second I was arrived (blood all down my leg) I was sent straight to triage and from there to the side room where I was stitched and given a tetnus - I was out within 45 minutes of arrival - this was 2019 however so I'm aware things are a lot worse now but I just wanted to share a positive experience.

  • I'm a big fat hairy medical phobe, so you can imagine I empathise with that one.

    You might try a medical passport which you could hand over in reception.  I haven't had to put mine into action yet but will if I have to go to A&E.  The waiting room is very triggering for me on all sorts of levels, for instance.  If the receptionist just put me in a broom or linen cupboard to wait that would be fine, just so long as I'm not in the waiting room.  But sadly, most people don't understand the issues over little things.

    I'm beginning to think I'll have to spend my retirement donning my old trainer's hat and offering free training to general medical staff.

  • Yep I had this problem although I am the one who is Autistic. After 3 hours in a cramped and packed waing room with chatter and bleeping phones I finally got to see a doctor who was also stressed out. He was kind and thorough but when I told him I was Autistic he dismissed it as I am still waiting fir a formal diagnosis.( 2 year waiting  list.) In the past I would have masked and done a good act of appearing "normal". This time I let the mask slip. Big mistake. He seemed to take my manner as confusion due to my age. I now have an appointment with the geriatric clinic. Moral is that even professionals who should understand, don't.  

  • Yep I had this problem although I am the one who is Autistic. After 3 hours in a cramped and packed waing room with chatter and bleeping phones I finally got to see a doctor who was also stressed out. He was kind and thorough but when I told him I was Autistic he dismissed it as I am still waiting fir a formal diagnosis.( 2 year waiting  list.) In the past I would have masked and done a good act of appearing "normal". This time I let the mask slip. Big mistake. He seemed to take my manner as confusion due to my age. I now have an appointment with the geriatric clinic. Moral is that even professionals who should understand, don't.