Accessing NHS Medical Records

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

I'm glad that your notes have been referred for a second opinion with someone with more specific knowledge. It's a pity, and a complete waste of time, that you were referred to the assessor who now needs to ask for a second opinion. I know of an adult being diagnoses at 84 (yes!) so surely there was no evidence from his childhood. I think your first assessor is perhaps being over cautious, especially as you suspect they have no particular knowledge of adults. 

Would you be able to meet with the person reviewing your notes? Or are they just expecting you to magic up some childhood evidence? 

I think most NHS assessors also work privately. The particular one I saw does. She is a speech and language therapist but also a registered psychologist. She claims on her website to specialise in adult female diagnosis, but from ny experience so far I doubt it. What I have gathered is that if you are assessed via NHS there is a network of second opinions available via contracts with other bodies. This is where my assessment is at now - my case notes are being reviewed by someone with specific experience of diagnosing older females and has about 48% chance if positive diagnosis statistically. Along with this i am supposed to find more information from my side. Hence the quest for historical records. 

With regard to the hearing test i think its the clearest evidence I have so far of communication difficulties. I was an excellent reader and talker so I obviously could hear.

Thanks for your reply. I am really in a quandry here. I will not involve anybody else in my assessment, so it looks like I must do all the talking myself. Nothing has really convinced my assessor. Is it even worth persuing diagnosis at my age? Sigh....

Hi, I've belatedly read this thread with interest. I'm 52, diagnosed last year. I didn't want my mum to be asked anything, we have a difficult relationship - but my husband spent an hour with the psychologist giving his impressions of me :). Unfortunately I had no long term friends to call on so my husband was the only additional support for my assessment.

I too was referred for a hearing loss test at aged 4. I had just started school and the teacher told my mum she thought I was deaf as I didn't answer or speak in class. My mum explained that she surely had mistaken which child she was talking about as her daughter was not deaf and  was a chatterbox at home.

Subsequently I had a hearing test which was normal, so I simply wasn't answering to the teacher. I specifically remember wearing the headphones in the hearing test, which annoyed me. I also had specific memories of primary school, particularly the very first year of primary school (it must have been such a shock I think) - horrible, itchy bench seats; kids spoiling the sand pit by spilling water in it so the sand was soggy (and me having a crying fit over it); at home constantly taking off my nappy and putting my clothes back on - must have hated the feel of the nappy; the day I got chickenpox; the texture of my grandma's sofa which was very bobbly and helped me scratch at the chickenpox on my back; the feel of those horrible woollen school tights...........

When I received my diagnostic report the psychologist stated that any diagnosis without early childhood evidence is given with caution but that "there was no other explanation or diagnosis that would accurately describe my current presentation and lifelong experiences" or something similar. Much of the 'evidence' I recalled from my childhood was replicated in the diagnostic report, which lends weight to my recollections being accurate.

I'm just wondering about the NHS assessors. Are they specialist is ASD, and particularly in diagnosing adults and females? Or are they a generic psychologist with no particular specialism? I was assessed by a lady who assessed for ASD in her NHS post (although I saw her privately as the waiting lists were so long). We took out a loan for the assessment - much better for us than waiting over 12 months.

Hi, I've belatedly read this thread with interest. I'm 52, diagnosed last year. I didn't want my mum to be asked anything, we have a difficult relationship - but my husband spent an hour with the psychologist giving his impressions of me :). Unfortunately I had no long term friends to call on so my husband was the only additional support for my assessment.

I too was referred for a hearing loss test at aged 4. I had just started school and the teacher told my mum she thought I was deaf as I didn't answer or speak in class. My mum explained that she surely had mistaken which child she was talking about as her daughter was not deaf and  was a chatterbox at home.

Subsequently I had a hearing test which was normal, so I simply wasn't answering to the teacher. I specifically remember wearing the headphones in the hearing test, which annoyed me. I also had specific memories of primary school, particularly the very first year of primary school (it must have been such a shock I think) - horrible, itchy bench seats; kids spoiling the sand pit by spilling water in it so the sand was soggy (and me having a crying fit over it); at home constantly taking off my nappy and putting my clothes back on - must have hated the feel of the nappy; the day I got chickenpox; the texture of my grandma's sofa which was very bobbly and helped me scratch at the chickenpox on my back; the feel of those horrible woollen school tights...........

When I received my diagnostic report the psychologist stated that any diagnosis without early childhood evidence is given with caution but that "there was no other explanation or diagnosis that would accurately describe my current presentation and lifelong experiences" or something similar. Much of the 'evidence' I recalled from my childhood was replicated in the diagnostic report, which lends weight to my recollections being accurate.

I'm just wondering about the NHS assessors. Are they specialist is ASD, and particularly in diagnosing adults and females? Or are they a generic psychologist with no particular specialism? I was assessed by a lady who assessed for ASD in her NHS post (although I saw her privately as the waiting lists were so long). We took out a loan for the assessment - much better for us than waiting over 12 months.

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

I'm glad that your notes have been referred for a second opinion with someone with more specific knowledge. It's a pity, and a complete waste of time, that you were referred to the assessor who now needs to ask for a second opinion. I know of an adult being diagnoses at 84 (yes!) so surely there was no evidence from his childhood. I think your first assessor is perhaps being over cautious, especially as you suspect they have no particular knowledge of adults. 

Would you be able to meet with the person reviewing your notes? Or are they just expecting you to magic up some childhood evidence? 

I think most NHS assessors also work privately. The particular one I saw does. She is a speech and language therapist but also a registered psychologist. She claims on her website to specialise in adult female diagnosis, but from ny experience so far I doubt it. What I have gathered is that if you are assessed via NHS there is a network of second opinions available via contracts with other bodies. This is where my assessment is at now - my case notes are being reviewed by someone with specific experience of diagnosing older females and has about 48% chance if positive diagnosis statistically. Along with this i am supposed to find more information from my side. Hence the quest for historical records. 

With regard to the hearing test i think its the clearest evidence I have so far of communication difficulties. I was an excellent reader and talker so I obviously could hear.

Thanks for your reply. I am really in a quandry here. I will not involve anybody else in my assessment, so it looks like I must do all the talking myself. Nothing has really convinced my assessor. Is it even worth persuing diagnosis at my age? Sigh....