Published on 12, July, 2020
Is there any national guidance on appropriate waiting times for adult autism assessments?
My own assessment seems to be taking an inordinate amount of time and has involved several steps, each with a considerable wait in between:-
1. Request referral from GP, incl. giving adequate responses to her questions around why I would like a referral.
2. Receive referral to the local Access Team for a 1:1 assessment as to whether a further referral to the Autism Team is appropriate for me. This involves an interview of around an hour plus 2 questionnaires to complete and return later.
3. No feedback from the questionnaires, but then receive a referral to the Autism Team, with a staff member from the Access Team advising that the wait will be 1 year to 18 months and that I will be asigned a care coordinator in the meantime.
4. Meet with care co-ordinator occasionally, although unsure of her purpose. She listens but has little to offer inthe way of advice and guidance so the appointments seem pointless. She does,however, inform me that, due to new working practices, the wait time is now less than a year.
5. Initial assessment meeting comes in at just under a year and involves meeting with a member of the Autism Team and a social worker. I am asked to be prepared for a meeting of around an hour and a half but it actually only lasts around half an hour. This mainly involves them asking questions about my life, incl. childhood and education, but also some very pointed questions about whether I like things to be organised or is there actually anything I don't like to feel or touch.
6. Wait a couple of months for the next appointment which I'd been given the impression would be imminent.
7. Next appointment involves two members of the autism team meeting me with my elderly mother (85) and conducting a very long questionnaire-based interview going into my childhood. It lasts over 2 hours and mum is exhausted afterwards.
8. Wait another couple of months and, after querying the process with the Autism Team over the phone, another appointment for a final assessment is received.
9. This appointment again involves two members of the autism team and is an observational assessment, mainly around the ADOS Module 4 (the flying frogs, the explaining how to brush your teeth, talking about a map and some further personal questions). I am told that my case will be taken to a multidisciplinary meeting and they will get back to me. When I ask about likely waiting times, I am told that, since they only have this meeting once a week, I will get the next available slot but that it might be a few weeks.
10. Hear nothing for 6 weeks so phone again. No response. Email. No response. Phone and email. Apologetic response, explaining that they haven't yet discussed my case in the meeting but that I will hear in a couple of weeks. I ask whether I will then hear whether I meet the criteria for a diagnosis and no, I won't. It's just that they'll have had their meeting and will then be able to arrange another appointment for me to discuss the results. How long will that take? Another few weeks!
I am still waiting for this appointment date but am wondering - is all of this the usual pattern? It seems to me that, contrary to what I was advised, the wait is still going to be 18 months once all the intermediate waits are factored in. And it feels as though I'm never going to hear from them. Plus, when I complain, I'm referred back to the care co-ordinator with my concerns, even though I know she can't help. My concern is that, without a firm diagnosis, I cannot access help (for me and my family) from MAIN (a local charity), nor am I really sure whether I'm joining the right groups or seeking the right help. And we're in a very difficult situation in which we really do need advice and guidance. The care co-ordinator will be unable to do anything about this stalemate situation.
Can anything be done? I appreciate that much will be down to underfunding and autism services not being prioritised, so complaining to the service won't help. When I asked PALS, they asked me what complaint I had with the service and whether I could talk to the service lead but I explained I'd already done that and that I had no issue with their professionalism, just the wait times and the apparent underfunding. So i asked whether the trust board were aware of the waits and, if unhappy with these, what was being done about them, and I only got vague responses to the effect that, yes, they are aware and could I address this to the CCG? I already have. No response yet. There's a surprise!
just found the following news article on the NAS news page from last month
https://www.autism.org.uk/get-involved/media-centre/news/2018-07-18-autism-diagnosis-postcode-lottery-exposed.aspx
Here is the link to the full report (14 pages). It breaks down average waiting times by healthcare service regions. Worth a look.
https://www.autism.org.uk/~/media/nas/get-involved/media-centre/newsdocs/autism%20diagnosis%20crisis%20foi%20response%20briefing.ashx?la=en-gb
in a nutshell..
Children and adults face shocking waits of more than 2 years for an autism assessment and over 3 years for a diagnosis in some areas of England, according to new evidence. The research was conducted by Liberal Democrat former Health Minister Norman Lamb MP, in consultation with the National Autistic Society and the All Party Parliamentary Group on Autism.
But new statistics obtained through freedom of information requests to Clinical Commissioning Groups in England highlight a postcode lottery in waiting times for a first appointment, with many parts of the country falling woefully short of the three-month target in 2016-17.
Thanks for the info Ellie... interesting to see that my health care trust (South Staffs and Shropshire) can't have provided any data as there are no figures for them, probably embarrassed because there are no services at all for adults and they have to farm us out to West Mids. My waiting time was 7 months till first appointment (but 15 months until diagnosis) nowhere near as bad as some but way off the govt target.
I’m going to dig deeper...as the phraseology on the guidelines is very woolly... I.e you SHOULD start the diagnostic process within 3 months rather than MUST, or even a window of time I.e should be within three months but no longer than 9 months.....
thanks linesman
I very much expect that it'll be different between areas and private/NHS services. I'd expect them to be sending you the questionnaires. I was given the AS and EQ questionnaires by the Access and Assessment Service prior to them referring me to the Autism Service. I got the results of these tests in April 2017. I'd expect a private service to send these out to you well in advance and for this to trigger the rest of the assessment process within a much shorter timeframe than the NHS.
I know.... so.. what triggers the start of the “diagnostic assessment”... ?.
Say, if I just chucked in the post an AQ test... is that the assessment process started?
if you can find someone to do the driving for you I'd highly recommend it... I was utterly drained after each session, I wouldn't have wanted a long drive afterwards 30 mins was bad enuff
. said:From April next year, trusts will have to publish waiting times for referrals - but there is no standard for the time it takes to get an actual diagnosis.
...and there in lies the problem, it is the time until the END of the process that's crucial not the beginning! I had my first 1hr assessment in early May last year and then had to wait until mid Sept for part 2 of 3. During that 4 month wait my anxiety levels shot up and at times I was very depressed as I felt the first assessment had gone badly (the psyc was a very poor communicator and gave very little feedback as to how I was doing) so my paranoid side kicked in and I felt like I'd blown it and would not get a diagnosis even though I KNEW I had to be on the spectrum. I buckled and found a local private therapist who had experience dealing with ASC and with her help got me through that wait and then the subsequent wait after my third of the 3 x 1hr assessments until the diagnosis letter dropped through my letterbox in early December last year. I was lucky to have the finances to do this, many don't...it wasn't cheap...as I mentioned somewhere else I could have paid for a private assessment with the money my therapy cost me! ...and got the whole job done in less than a quarter of the time.
When mine eventually starts it will be a 3 hour round trip to the assessment centre.... by car...
From what the psyc and the admin woman told me the service was extremely busy, sounded to me like they were buckling under the strain...and this was a new service that had only been set up late 2016 from what my GP told me. Strikes me that South Staffs and Shrops Health Care trust SHOULD provide their own service not overload a service for an adjoining county! I'm lucky I'm close to the border and only had to drive 10 miles BUT Staffs is a big county (even excluding Stoke/North Staffs) and Shropshire is massive and very rural with either poor or no public transport, how the hell are people who live say out on the Welsh borders going to cope? Its unfair to make people travel that far.
The National Autistic Society believes a shortage of staff, but also local funding priorities, play a part in the long waiting times.
It is calling for the government to make sure local areas are held to account.
From April next year, trusts will have to publish waiting times for referrals - but there is no standard for the time it takes to get an actual diagnosis.
A representative of the Department of Health and Social Care in England said people with autism should receive a timely diagnosis.
"The guidelines on autism are clear - families must start assessment within three months and we expect every part of the NHS to adhere to this," the official said.
And the department said it was working closely with NHS England to help local areas improve the quality and efficiency of care.