Hi

My son was admitted to a hospital over 6 hours from home last week. To be fair, the local LD team did everything they could to keep him out of hospital but their hands were tied by (corporate) providers who seem to be able to behave how they wish (e.g by serving under two weeks notice to someone with very complex needs).

We are lucky in that my LA and CCG have a good reputation and a lot of experience in getting people out of hospital, but in reality it will be at least 3 months (so realistically after Xmas) to get the housing and team sorted for him.

I am very concerned about this happening to others. We are writing to the commissioners & CQC (cc'ing local MP & Norman Lamb) regarding my son's previous providers. Is there anyone else we can take this up with?

Incidentally he's never been away from me for more than a few days before, so being so far away is going to have a massive impact :(

I'm not sure. Will aim for every other week I think. Luckily I run my own business and I can work anywhere I have a wifi connection - so I have more flexibility than most people. However, we have younger children who need me at home - so it will be a difficult time of needing to be in two places at once.

He had lots of blue lights in the month prior to admission - (I lost count in the end. Four? Five? Maybe six). They really did try to prevent hospital admission (which helps to know TBH). If his original provider hadn't given such impossibly short notice he would not have been admitted.

I am hoping the CTR will be the week after next. Will chase again today or tomorrow (am largely driving the next 2 days!)

Oh yes please - that would be interesting. I really want to prevent other families ending up in this situation.

About to set off on the long 2 day trek to see my son (meeting my husband two thirds of the way there - he is working in London today -then we'll drive there,see son and drive back tomorrow).

Hi Nezumi, so sorry to hear about your son. That is such a long way to visit! We wrote to Norman Lamb about our son's case and he was very sympathetic, responded quickly although there wasn't much he could do as we are not in his constituency. (Our own MP failed to even acknowledge the email!).
The ctr will be very important as it's an independent panel with very specific criteria. We found this very useful in creating an action plan, keeping things moving however slowly!

He seems pretty bewildered & confused (hardly surprising). The setting itself has lots of positives - lots of open space, outdoor activities & the sorts of activities he likes. Things like OT (which he badly needs) onsite. I don't know whether he will ever settle so far from home. He's used to seeing me about 5 times a week & his home area is very important to him. It took us over 7 hours to drive home.

It's released a slow burning anger in me that his old providers put him in this position. All they had to do was agree to keep him until his new provision was set up. With that agreement the right sort of providers (with experience, the right skills & a track record of working successfully with people like my son) could have been brought in. My younger NT sons will have more protection against eviction than him. It can't be right.

I think it is for LAC - although I will ask as he was a LAC for a year until turning 18 a few months ago (he moved into residential aged 17, so although we still had parental responsibility and it was 5 miles from home so I saw him every day, he was a LAC). Thanks for the suggestion - I will look into it.