We as parents have no say at all whilst she's in hospital
She went in originally in mid April and 'could ' have come out 2 months later. But we stupidly agreed to rehab that was not suitable and during this time she started cutting herself and had a very low mood and very neutral / biddable /institutionalised versus the spunky argumentative funny girl who is hard work.
We fought for over a month to get her home
Although the diabetes has been a struggle it was worse in the hospital along with everything else.
The hospital crisis was while she was on 32 lantus and it was way worse than a seizure. Found unconscious (meant to be on 15 min obs as on a dols) and glucagon not an option or multiple canulation attempts in feet. Had to do an osseous canulation.
No wonder she doesn't and we don't want her in hospital unless 100% necessary.
This is all true and understandable. I really feel for her and both of you. You have all done the best you can and have been let down by repeated incompetence.
My intention (and I'm sure that of everyone else here) is to be supportive of you. I do think you are doing an awesome job and of course you have your daughter's best interests at heart. But I think her current needs require a professional, and none of us, including you and your husband, could be expected to know how much insulin she needs at a given time, because it is so changeable and she has other conditions besides diabetes. No layperson could get it 100% right at the moment.
It's a shame that you have no say while she is in hospital. But I think this is because you need some legal work done. I suggest you consult a specialist family lawyer about getting the court orders in place to have welfare guardianship (or whatever it is called in the UK) put in place. These orders give you the same decision making power that a patient has when they are medically assessed as mentally competent. It should only take a few days to get this done, all going well.
I know you don't want her in hospital unless 100% necessary but perhaps a doctor should be the one deciding whether it is currently necessary? A doctor who has all the current facts. I don't think the DSN had all those, because things seem to be changing by the hour at the moment.
I realise certain staff at this hospital have done things that were incompetent and unsafe. However, there is a high dependency unit (which hopefully provides safer care?) and there will also be a tertiary level hospital within a short helicopter flight or ambulance drive that she could be transferred to, for better care.