Autism Provision by NHS Primary Care Trust 2012

Unfortunately, as I was partially through uploading all of the results of my FoI requests, The Health and Social Care Act 2012 abolished the Primary Care Trust system and replaced them with the Clinical Commissioning Groups, rendering all of my work irrelevant at a stroke. In frustration, I abandoned the project halfway through, but you can continue to see the work that I had completed below. 

Obtaining an autism assessment through the NHS is a byzantine process which varies hugely from postcode to postcode. I started a project of obtaining details of provision of adult and services for adults and children from every Primary Care Trust in the country, so that parents and autistic people could find out how best to access NHS services.

I asked each PCT, or regional equivalent, to answer six questions:

1. How many adults they have with a diagnosis of autistic spectrum disorder (with any separate statistics for Asperger’s, HFA, LFA) in the area;
2. How many children;
3. What diagnostic services are available to a) adults and b) children;
4. What agencies or teams exist that work with autistic people, provide support/services, strategise, etc.
5. An email address/website for each of these agencies or teams where possible.
6. What the typical process should be for an adult in the area first asking their GP for an assessment for autistic spectrum disorder to receiving a diagnosis/support.

Each PCT seems to do things differently, with some telling me that the NHS isn’t responsible for keeping statistics on autistic people to the lovely person who created a table for me indicating number of registered autistic adults in their area, by form of autism, for every year since 2007.

If you see a “responded” in the table but the documents aren’t there, that’s because I have not yet redacted/renamed the response sent. If you are looking for that information, please contact me here and I will prioritise it for you.

I’m also hoping to take this raw data and create charts/maps/ranking systems, to make it easier to compare and contrast different areas (and eventually shame the terrible ones into creating better services). If you have any skills in this area and would like to help, I would love to hear from you. Contact me here.

 Key

Contacted: The PCT has been contacted with the Freedom of Information request

Acknowledged: The PCT has sent a notice that the 20 day time period for the FOI has begun.

Responded: The PCT has sent the information requested or has not been able to find it.

Followed up: The PCT has not acknowledged the request, or has but never replied, and has been contacted again.

See…: Some PCTs have outsourced their FOI obligations to other PCTs, who have responded on their behalf.