AIBU to complain after A&E dismissed my son?

[SleeplessInWherever]

For the last week our son has developed a significant (and new) facial twitch, rapid blinking and rolling his eyes all the way back into his head. He’s completely not with it when it happens, and it distracts him to the extent he can’t go back to whatever he was doing before without prompting.

He’s profoundly autistic, and has limited communication. The little language he does have, he’s struggling to use - because the twitching is so distracting, and persistent.

Today we received a call from school asking us to collect, because he was distressed and was twitching almost every 30 seconds.

I called 111 and was advised he needed “urgent medical attention.” So urgent, that he couldn’t wait to see an out of hours doctor, because it wouldn’t be quick enough. So we went to A&E, which is a real battle for him usually anyway.

2hrs later, the doctor comes in and refuses to go anywhere near him. He stood at the door of the room, and said he’d come back soon. He then came back 45mins later and said there was nothing medically wrong, it was behavioural - take him home.

I repeated what 111 had told us, and told him this is not our son’s presentation of behaviour. He then said he sees children all the time, this is behavioural and is “just his autism,” so probably best to leave. We asked him to at least examine him, and he said “the child obviously won’t tolerate that.”

I expressed my concern that DS may have something more significant happening that is being ignored because of his level of need, and he just said “that’s not the case, there’s no medical cause.” Having not examined him.

So we left, with no answer or support whatsoever.

I don’t think I am, but would I BU to raise this as a formal complaint?

This sounds like it could be seizures, particularly if there was a history of febrile seizure, also linked to ND. We were fobbed off numerous times at a&e when my son started to have them. We were told he was having tics. Try to record when it happens, note the frequency and how long it lasts for. If/when you do get referred videos are very helpful for diagnosis. If you can get to a different a&e dept or get your gp to refer you to a paediatrician who specialises in neurological conditions that would be good. A&e aren't really going to do much unless these episodes are lasting more than 5 minutes

I can understand your reluctance to take DS back.

If you did want/need to take DS back over the weekend and you think he could cope if the staff were more understanding, I would call the hospital and ask to speak to the nurse in charge of A&E. If they will speak to you, raise you concerns and ask how they can put adjustments in place to make a return visit easier for DS. I would also request your concerns are documented in DS’s notes. If they won’t put you through to the nurse in charge of A&E, ask to speak to the most senior nurse responsible for safeguarding (they will have slightly different job titles in different hospitals but there should be someone) on call for the hospital this weekend.

I would be asking PALS if the hospital have undertaken Oliver McGowan training for all the relevant staff. I would also be seeking a fairly urgent second opinion as it could be partial seizures.

I thought exactly the same when I read OP.

I have taught children with a variety of forms of epileptic seizures, some were short-lived absences which weren't always easy to.pick up.
However if I'd taken your son to A&E, I, too, would have expected a proper diagnostic examination. You certainly should complain, via PALS. Do you use a paediatrician or a specialist nurse? If so I would contact them with your concerns.

By the way specialist school staff do NOT always know what this type of seizure looks like. DS has atypical absences and one of his TAs picks them up but the other one he only has one day a week and she said "he was saying he was cold" which is what he says on repeat when he's having one of these absences but she hadn't worked out what it was.

Unless you are really concerned over the weekend, I would take him to your GP and get a proper referral to a specialist. And yes, I would complain about A&E.

Sorry for the late response, thanks again to everyone who took the time to reply.

I have written the complaint… it’s 7 pages long. I’m just getting my SIL to check it (she’s a paediatric nurse), and after any changes it’ll be sent Monday.