Accessing NHS Medical Records

I thought this story was finished.

Thus far from the information in my medical records I  have worked out that I  must have Fragile X Syndrome. That,  I naively think, is easy to prove. A DNA test will give the yes/no answer to that. A positive test for Fragile  X won't  prove I am autistic,  but it will prove I am not making up my symptoms. My GP to my surprise refers me for the test. Answer from the NHS lab: DENIED. No test. I don't  fit the criteria for Fragile  X testing.  Why? I don't  know but I  have written to the National Fragile X Society to see if they can possibly help me to contact a private test. This may be another  thread...

Anyway, thinking over some vague memories of my early life I realise that my mother knew all about my condition and elected not to tell me. I even remember being in a room at my GP building alone with a woman who was not my mother, some strange books, an action man type doll, and being asked questions i found very strange. Sounds suspiciously  like  an ADOS test to me. This and other little things that are peculiar to the circumstances really make sense now.

How to prove it isn't all just in my mind?  On returning to my medical notes for clues I find that although hospital reports from my young life are included, all of my GP notes from birth to 16 are mysteriously missing.

I returned to my current GP practise manager for a 3rd time to try to bridge the time lapse. Amazingly helpful, I had a 121 with her  in a private room wherein I  was shown (very nicely) on their system screen  once and for all that they just don't have those missing records. The manager offered to do anything she could to help me retrieve them and gave me her contact details. 

Basically what happens is this: when you move doctor's, your records move with you. There is no central patient database in the UK, so if you move around  a lot sometimes your records don't catch up and thus they become fragmented over time.

I have moved around so many times. F*** only knows where all my early medical notes are now.

So...back to the future...

I messaged my childhood GP practise once more. Explained the situation. Reply says records are usually passed back to the health authority once a patient has moved on. My request has been forwarded to an admissions officer for reply. So these early  records may well be in vast and dusty archive in some ridiculous old "Lloyd George " envelope (remember those?) That  nobody has ever bothered to scan and send on. And which health authority archive are they buried in?

If I had all this information *dreams*...

Surely I  can sue the NHS under GDPR or something? This is a shocking disgrace for me as a patient to have to put up with this nightmare out of Kafka or Orwell where My own history is concealed from me by a heinous filing  beurocracy.  It was never meant to be like this for us, was it? What happened?

Or maybe I should just sue my mother for lying to me for her own selfish purposes?

What will happen if I never find these records and never know anything for sure?

Now I am waiting for yet another glorified filing clerk to get back to me with another step to take beyond this one.

With my next assessment coming soon, I feel my progress backwards rather than forwards. 

Thanks for listening .

I thought this story was finished.

Thus far from the information in my medical records I  have worked out that I  must have Fragile X Syndrome. That,  I naively think, is easy to prove. A DNA test will give the yes/no answer to that. A positive test for Fragile  X won't  prove I am autistic,  but it will prove I am not making up my symptoms. My GP to my surprise refers me for the test. Answer from the NHS lab: DENIED. No test. I don't  fit the criteria for Fragile  X testing.  Why? I don't  know but I  have written to the National Fragile X Society to see if they can possibly help me to contact a private test. This may be another  thread...

Anyway, thinking over some vague memories of my early life I realise that my mother knew all about my condition and elected not to tell me. I even remember being in a room at my GP building alone with a woman who was not my mother, some strange books, an action man type doll, and being asked questions i found very strange. Sounds suspiciously  like  an ADOS test to me. This and other little things that are peculiar to the circumstances really make sense now.

How to prove it isn't all just in my mind?  On returning to my medical notes for clues I find that although hospital reports from my young life are included, all of my GP notes from birth to 16 are mysteriously missing.

I returned to my current GP practise manager for a 3rd time to try to bridge the time lapse. Amazingly helpful, I had a 121 with her  in a private room wherein I  was shown (very nicely) on their system screen  once and for all that they just don't have those missing records. The manager offered to do anything she could to help me retrieve them and gave me her contact details. 

Basically what happens is this: when you move doctor's, your records move with you. There is no central patient database in the UK, so if you move around  a lot sometimes your records don't catch up and thus they become fragmented over time.

I have moved around so many times. F*** only knows where all my early medical notes are now.

So...back to the future...

I messaged my childhood GP practise once more. Explained the situation. Reply says records are usually passed back to the health authority once a patient has moved on. My request has been forwarded to an admissions officer for reply. So these early  records may well be in vast and dusty archive in some ridiculous old "Lloyd George " envelope (remember those?) That  nobody has ever bothered to scan and send on. And which health authority archive are they buried in?

If I had all this information *dreams*...

Surely I  can sue the NHS under GDPR or something? This is a shocking disgrace for me as a patient to have to put up with this nightmare out of Kafka or Orwell where My own history is concealed from me by a heinous filing  beurocracy.  It was never meant to be like this for us, was it? What happened?

Or maybe I should just sue my mother for lying to me for her own selfish purposes?

What will happen if I never find these records and never know anything for sure?

Now I am waiting for yet another glorified filing clerk to get back to me with another step to take beyond this one.

With my next assessment coming soon, I feel my progress backwards rather than forwards. 

Thanks for listening .