Published on 12, July, 2020
I have asked my GP surgery to give me access to my NHS medical records back to childhood. This is an attempt to find something from them which will prove to be the 'hard' documentary evidence of early autism that my autism assessor is demanding from me.
Despite the obstructive attitude of the GP's Receptionist I managed to fill in a form at the GP surgery, and was told it would be sent on to their main branch for processing. I won't be able to follow it up until tomorrow so I am still waiting....
My questions are:
How long does this usually take in reality (ie: to actually get to see the records)?
Will I need some sort of reference book to decode the medical jargon in the records, and if so what can I use? Or is it written in plain English?
What kind of thing will I be looking for with relevance to autism?
Do NHS autism assessors already look at your full health records? My assessor previously told me she'd seen my care records, but during out first assessment meeting I could tell she didn't know all about my medical conditions at all, (or did she?)
Would be grateful for any insight of previous experience with this, especially with regard to what is relevant to signs of autism.
Thanks.
Conclusion to the saga.
I finally received my notes. Hardly any mention of childhood except the few things I already knew about operations and dates.
The hearing test I had appears to have been related to physical causes. The word 'deafness' is used as a symptom but progress is 'satisfactory' (meaning what?).
Pretty sure that many things are missing. No baby notes at all. I cannot be bothered persuing this further. There is clearly nothing there to assist me. Nothing much in the adult section of relevance either.
Thank you to everyone who has shown their support in this thread . I do appreciate your time. I wish it could have an exciting conclusion but it won't .
I slightly take back my rant above.
1. I have learned today that I have PANDAS which is completely supported by whats in my health records.
2. I've learned from my records that somebody thought I was deaf however I never recall a loss of hearing, quite the opposite. And my hearing test said i was not hard of hearing so why was I thus described as deaf?
3. There are no records from before 5 years old. I need to specifically request these for the full picture.
Exhausted
I've read this thread with interest and I truly hope you get the answers you are looking for.
All I can say is I also had sensory problems with my hearing infact my mum recalled one of the neighbours saying to her to get my hearing checked as I appeared more deaf than her son who had hearing aids. When my mum used to shout me in the street it was my friend that had to alert me. Well turns out I ended up having grommets in when I was younger. But even after all this I still came across as ignorant.
My own conclusion as I got older I realised it was my brain processing that was rubbish and concentration. So if someone said something to me I'd ask them to repeat it then I could understand. It's the same now at work. If I get given instructions I have to say it back to my manager so I can fully understand what is required.
So I'm sure any hearing difficulties if you can find any in my opinion may help your case? I'm no expert though only recently diagnosed.
Thank you for your info. 84 is quite impressive for a diagnosis. Good for them for getting it sorted.
I do not know what the next step is. I will try to retrieve my baby medical records just for my information, and otherwise just wait for a follow up letter from the centre about my next appointment. I know how long these things can take so I will just get on with my life for now as if nothing is happening. I am certainly not writing up the War & Peace of my childhood unless I know there is a point. It might be a total waste of time.
Best x