Hi @Diddlydill , welcome to the forum.Hello
I have a son who is 29 in October. He has Down's Syndrome, Type 1 Diabetes (dx aged 10) and Coeliacs disease (age 11). He has very recently moved into a Supported Living service 15 or so miles away. We have been working on this for years as hubby is now 70 and I am 63 (and have Parkinson’s disease). We thought we would have horrendous problems with M accepting the transition but that bit has gone amazingly well. However I am horrified to be told by the Care team that they cannot share M's blood glucose readings without his permission!!! It has always been acknowledged that whilst staff are on a steep learning curve we would have to work closely together until they are up to speed and have some experience under their belt. They refused to share bloods and decided that M did not have capacity to consent to this sharing of personal information and so we now need a Best Interest meeting to see if it is in M’s Best Interest to share his bloods with us. HELLO. I sent them an email saying we consider that they are endangering M's health and we hold them fully responsible if anything happens and low and behold they have suddenly agreed to send us his bloods 3 times a week. But they added that if we give them advice to change anything about his regime they cannot act on it because we are not medical professionals!!
Has any parent had experience of managing type 1 in a Supported Living service when the young person has learning difficulties and cannot manage the diabetes on his own?
Any advice gratefully received.
Diddlyd
I think this post would be much better placed as a thread of it's own rather than in this introduction thread.
That way, more people will see it, and hopefully members with knowledge on your issues will reply. (I'm not from the UK so I can't chip in on this, except to wonder who his legal guardian is. But rules around this may be very different from country to country, and I'm not even sure if my question is relevant anyway.)
I'd be happy to move your post for you, but even better would be to start a new thread yourself, because it would be at the top of the New Posts list and not halfway down because it was posted hours ago.
To start a new thread, go to 'Forums' (top left), choose the forum you want to post in (Ask a Question is always a good bet) and hit the 'Post Thread button at the top right.
Don't forget to use a title reflecting the subject, this can make a big difference.
If you prefer me or another mod to move your post, just let us know, and if you prefer your post to stay in this thread, that's perfectly fine as well.