NHS vs. independent diagnosis - what's the difference?

Yes, I'd have expected a standardised approach across the NHS.  It'll be interesting to see what my son gets from the Tuke Centre on a private basis. 

Mine was about 10 pages.

Candlewax said:

keeps giving numbers for the council to sort out help

Why? I don't see what the council can do. Your GP and my shrink sound as incompetent as one another.

What region do you live in? I can have a look to see if I can find any resources.

If I had gone via NHS I was having to persuade the GP that I needed the assessment...he thought that because I am married and have kids that I am doing ok in life...never mind that I can't work out how to find and keep a job. And then the NHS wait in my area is 3yrs.

So I looked into a private assessment. The place I chose needed me to be referred by the GP so that it could be put on my NHS notes as an NHS diagnosis...and the assessment was done by an NHS psychiatrist who also works in a private clinic. This also meant it was a lot cheaper than many I have heard of.

Going privately only took 12 weeks from referal to appt. I had to fill in some questionnaires and send back before appt. As did my mum. The assessment was 3hrs long and in the form of a discussion/informal interview. She said they are not usually the full 3hrs but my husband was able to contribute loads of info for her so it was very thorough. I was given verbal diagnosis of ASD Aspergers on the day. I am still waitig for my written report because of xmas delays and admin sickness! 

I got half a page and also feel the same about it. It's really unhelpful.

We've talked about anxiety and depression, but he doesn't want to medicate and keeps giving numbers for the council to sort out help, but they don't answer phones or reply to emails. I've tried several local organisations for support that either want paying (which I can't afford), or simply don't reply to messages/emails.

I was diagnosed 5 months ago and had zero support.

Yep 9 pages, same as Sunflower- front page just gives diagnosis and the other 8 very personal. I'm in London and the whole thing was a year waiting then 6 months for 3 appointments with an OT, someone who did a mad test aimed at children then a psyciatrist specialising in affective disorders not AS. It was fairly grim but worth doing. Think the main difference between nhs and private diagnosis is that nhs (and other state agencies) usually only takes its own diagnoses seriously. Bet it's a lot less unpleasant privately.

I got a brief letter and am feeling very shortchanged.  :(

My report is 9 pages including a title page and references page (recommended reading). I was sent a draft version of the report and given the opportunity to correct inaccuracies and make comments before it was finalised.

I was also provided with a short version of the report to share with employers. This omits sensitive personal information and focuses on the autism assessment, diagnosis and recommendations.

With the psychologist's support I have prepared an employment checklist, and an autism 'passport', to go with my short report. The fact that this has been validated by the psychologist makes me more confident about sharing it with employers. It is not just a wish list - it reflects genuine autism related needs.

During my diagnostic feedback session I was given some useful handouts and links to other resources. I got a letter immediately afterwards confirming my ASD diagnosis. The psychologist also emailed me initial recommendations based on the discussion my husband and I had with her during the session. 

I am still in touch with the psychologist who assessed me - in fact she is now assessing my son SvetlyI am going to see her for a follow up session in a few weeks when my future plans are a little clearer. 

Discussions on this forum show that are many different ways of getting an ASD diagnosis and no two assessments are the same. There seems to be considerable variation within NHS assessments  - and within privately funded assesssments. 

It is a great shame that for many people access and choice are so limited by long NHS waiting lists and funding considerations. And  although NAS provides a list of private ASD assessors, it is difficult to assess quality and value for money in the absence of any independent system for publishing feedback or ratings.

Mine had a 'main report' of twenty pages.  There was another three in an appendix of how I was affected in my work environment and the adjustments and understanding recommended.

The main report was about the justification for the diagnosis, linked to my 'life history' and also observations about my speech patterns, expressions, stims, sensory difficulties and so on.  It made quite interesting reading for me but a lot of it I would not really want to share with anyone I knew as the information is very personal.

13

How many pages long are your autism spectrum diagnostic reports?

This is good news and will potentially prevent adults getting stuck in the mental health system, simply because of the way it’s currently set up for funding and organisation purposes etc and the one stop shops are the first port of call for mental health problems, so they’ll be catching people earlier on.

This is really great news. Thanks for sharing. I used to work in mental health and positive changes like this are always welcome although the current system is still deeply embedded in the old model of treating ill health but it is trying really hard to move into the new recovery model. 

The transition over to the new model of recovery is going to take time though, and a lot more money,  patience and innovation to make it a success. 

We’re very lucky in this country, to have the systems we have and we’re fortunate that the chemical kosh era is no longer financially sustainable so the nhs is getting more imaginative in its approach to wellbeing. 

The system is of course built on ill health and no matter how much they do, towards working toward more of a health model, it is still up to each individual to take responsibility, where he can, for his own health and wellbeing but the food and drug industries are still pushing hard to grab people’s custom, and this is where I see autism as another benefit. I’m not swayed by popular opinion and advertising etc and so seek more reliable sources of knowledge and information. 

Thanks for the input, all. I have gone into my GP and handed in a copy of my diagnosis. He said he'd put it on my file and has also sent it onto psychiatry to see if they want to do anything further. I doubt I'll hear anything from them.

On a related note - staff at my local one-stop-shop are to be trained to carry out autism assessments. This is a new initiative in the area aimed at relieving the current NHS autism referral back log.

Pirate Santa said:

My ASD referral was after a year of failed Psychotherapy, for which I also had to wait 18 months from the initial referral. Had I been properly assessed from the start, I could literally have saved two & half years of my life from being wasted.

Your experience mirrors mine. In and out of shrinks offices from tje age of about 13. In and out of primary, and secondary mental health care from about the age of 16.

My GP was the person that refferred me after knowing me for years. He had next to no mental health experience, but noticed the signs. The mental health system didn't know, notice, or care.

I get mad for myself and other people when I read stories like yours.

Wasted time, distress, and a whole lot of other ***. Sorry to hear you went through it too.

Mine was quick, around 10 to 12 weeks. I got quite a bit more, and some signposting. Have you talked to your GP?

Simply who pays, and the waiting time.

You don't need another consultation. You just need to give the information to your GP. I'd also pass on the information to your GP about the potential of dyspraxia.

If the diagnosis was carried out by an accredited psychologist/psychiatrist, it's valid proof. It will also stand as proof for employers, benefits, and any other relevant people.

From the length of the appointment, and the source. It sounds completely legitimate. Don't worry.

So there's no need to keep wondering. Get an appointment with the GP, and that's it. They will take the diagnosis, put it on official record, and take you off the waiting list, because for all intents and purposes you are officially autistic. No worries, and it should be simple.

All the best,

Cloudy

I think like many things on the NHS, it's both a personal & postcode lottery.

Where I live in North Manchester, all NHS diagnosis of ASD, ADHD, Dyslexia & Dyspraxia seems to be outsourced to a private company called LancUK. The 'Lanc' part doesn't seem to be anything to do with Lancashire though, since they are based down South.

It took over a year from my initial referral to receive a confirmed written diagnosis of ASD in August 2017, although I did have a verbal confirmation at the end of my second consultation four months earlier (yes it really did take them that long to write it up). My ASD referral was after a year of failed Psychotherapy, for which I also had to wait 18 months from the initial referral. Had I been properly assessed from the start, I could literally have saved two & half years of my life from being wasted.

The ASD diagnosis didn't alter anything with regard to my ongoing problems with depression though & in September 2018 I was referred to LancUK again, but this time for an ADHD assessment. Prior to the second referral, I didn't know much about ADHD apart from the usual misleading cliches about school-children not being able to sit still in lessons. Much of the reasoning given for my second referral involved my severe life-long issues with low self esteem & poor self image that I had described many times to mental health professionals over the last five years, including fairly detailed descriptions during my ASD assessment.

I was referred for the ADHD assessment as a probable explanation for my treatment resistant depression. ADHD in adults is often linked to problems with chronically low self esteem & constant fear of rejection, which inevitably leads to frequent bouts of severe depression. The specialist mental health nurse who made my ADHD referral was convinced this was why both psychotherapy & anti-depressants have had no effect on me at all, i.e. those treatments could never work for me because they were targeting the wrong thing. I asked him why no-one else had suggested that in the last five years & he just said that ADHD still wasn't that widely understood & people without specialist knowledge might not recognise the symptoms. When I asked why LancUK hadn't suggested it during my ASD assessment (given that it was supposed to be one of their specialities), he just said that they are probably only supposed to look for one thing at a time.

Sadly, the current system in the NHS for identifying people affected by ASD, ADHD & Dyspraxia is ridiculously unreliable & incredibly slow.

I had an NHS one (very quick - a few weeks fro referral to diagnosis). I received a half page report and that was the end of it. No support, no help, no recommendations, and been dismissed from their primary care - I assume because I can't be medicated.