UK: Autistic Services and Prevalence by PCT

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So, I FOIed (Freedom of Information) every Primary Care Trust (they commission and pay for healthcare) in the country a few months ago, and I've now got most of the responses up. I've already gotten a few messages from autistic people and some autism professionals, so looks like it's serving a purpose.

It's a massive undertaking, so I haven't been able to do any useful graphs/maps yet (please feel free!), but anyone who's trying to work out how to get a diagnosis in their area might find it useful.

http://www.sarahmcculloch.com/autism-pr ... -pct-2012/

This is brilliant. What a massive undertaking - thanks!

I'm having trouble finding the NHS Sussex info. It's probably right there under my nose, sorry. I'm looking for info about Brighton and Hove. I think I'll likely be seeking diagnostic assessment in the next few months, and it'd be nice to have more information about local routes/services.

Hiya,

no worries, what happened is that I haven't uploaded the responses that came with other documents. NHS Sussex, which covers Brighton and Hove, sent me a autism strategy that was produced by West Sussex, so it didn't go up immediately.

However, I've uploaded them now for you, so if you look again you can take a look. It looks like you've got a dedicated diagnostic clinic you can go to, so should be pretty straightforward!

If there's anyone else looking for a specific document, and the table says that the PCT has responded but the response isn't there, just put a note here and I'll see if I can get them up right away.

Sarah

Wow, thank you for doing this. Looks like my area hasn't responded yet but I'll keep an eye on it for updates.

Have you mentioned this project to the National Autistic Society? I think they would be very interested in linking to this resource as it has the potential to be very useful, especially for adults seeking diagnosis. It would also mean more people would easily find it and have access to it.

What's interesting for me is that the info that my PCT has provided is actually not what they are doing. Birmingham and Solihull only have diagnoses for adults up to 25. Over that, it's an endless uphill struggle that turns out to be pointless. I might bring this up with my GP next time I'm there...

That's wonderful, well done.

I've just taken a look at my area's response and I'm intrigued as to the very low numbers (4 children discharged, diagnosed with Aspergers, 6 with other autism 2011/2012). I personally know 3 children who have been/are being assessed 2012/2013 (I'm talking about children of friends and acquaintances), 2 of whom are diagnosed and discharged and there must be many more, that I don't know of. So, unless last year was a particularly slow year, then this seems quite strange.

Yeah, definitely I'll let other groups know when it's done, just don't want to send them half-done information. I've just tidied up the table some more, followed up the people who never responded to my emails first time round, indicated better where PCTs have replied on behalf of one another. Couple more weeks and it should be good to go. Feel free to share it around now though.


Kt24: I've had a message from someone in Birmingham actually, who says that they have been referred to The Priory?

Thanks, I'll look into this...

I would be happy to try to put the data into R or whatever to produce some maps or graphs - but so far, most of the responses I looked at were not very consistent or complete. Also, is population available by Trust area?

Hiya,

I'll just pm you now and we can chat about it.