I know it's water under the bridge, but I feel I need to spell out an issue we had before my son died - it needs to get better and if I stay silent it won't. This incident was not the hospital admission when he died but the one before that.
His breathing had been laboured for a day or two and he'd spent the Saturday and Sunday on our hospitals 'Assessment Unit', coming home each night. We'd been told to bring him back in if he hadn't improved in the morning. He had actually got worse overnight, so Monday morning we took him back. But this was Monday and there was 'no room at the inn'. Despite still having a hospital 'tag' on, his notes being on the ward, a medication line still into the vein in his arm, and his breathing being very distressed - we were refused admission because they were full.
We had to make a scene, using the magic words 'vulnerable young adult' before they would do anything - the result being that he ended up, very inappropriately at that point, in the resuscitation bay of Accident and Emergency - because that's all they had with the right equipment. The doctors there were hamstrung in treating him as his notes and 'treatment plan' were still on the Assessment Unit.
We were eventually moved to a ward about 4 hours later and did get an apology from the matron (after involving PALS - now known as Customer Services). He did respond to treatment but it was over a week before we were discharged.
I'm fairly certain that had this almighty cock up not happened, we would not have been able so readily to use our own nursing team on the ward or stay with him ourselves all the time. We were very conscious we were being treated with kid gloves after this fiasco, and it did help - it shouldn't have needed to be that way.
There are other stories around this admission I may post later but this is just presented here as yet more evidence that hospital isn't a good place if you're disabled.