Published on 12, July, 2020
Hi All
This is my first post. My nephew is on the ASD pathway and the most recent letter is that there is still a 2-3 year wait. He attempted his life last week and fortunately is physically ok. As he turns 18 soon, he has been left with zero support. I cannot seem to get a clear answer on if we should explore a private diagnosis. I've spoken to the Community Paedrtric team today who have confirmed that he will remain on the list he is on despite his age, and a suicide attempt is not grounds for pushing further up the list, that they cannot advise on private diagnosis, and do not have an NHS approved list of practitioners, and that any mediation required as a result of a private diagnosis would have to be paid for privately (i.e. no NHS prescriptions).
It's an absolute minefield to navigate and I feel hopeless in being able to support my family.
Any advice very welcome.
Thankyou
I wonder what you are expecting/hoping in terms of post-diagnostic support? I was diagnosed earlier this year aged 51 and wasn't really offered any. There is a group I could join for newly diagnosed adults but spaces are extremely limited and only come up a few times a year, so I'm still to decide if I want to try it.
In terms of prescriptions, that has been the case for as long as the NHS has been in place. If you see a private GP and get a prescription from them, you need to keep going back to that private GP to get a renewal. And pay full price for it. The reason is generally that private GPs have access to more variety and more expensive drugs which are not available on the NHS. Sometimes this is because of limited evidence of their effectiveness, sometimes it's a cost thing, sometimes it's because there is a cheaper alternative which might be just as effective. NHS GPs are private businesses doing work on behalf of the NHS, private GPs are private businesses doing work to make their own profits.
Hi Fiona I am sorry to hijack this thread #95924. It is a shame that things are so different all around the country. I have joined a group run by the council who doesn't limit membership. On Thursday, I met my first ever fellow autistics in a long life of only knowing allistics. There are various courses (nothing ground-breaking, but still.) I feel very lucky when I read posts like yours.