Accessing NHS Medical Records

Mine were photocopies, digital formats were not offered, dunno if thats the same everywhere though. I didn't have to pay for them.

Do your GP give your NHS medical records in paper format or they give you medical records on CDs?

Are they both for free?

I'm done with Christmas Cards said:

Ended up with carpet burns on my forehead

And generating 500kV?

Also, pulled my fringe down over my forehead and put head down onto carpet so that hair is trapped between forehead and floor. Then Pushed myself round in circles like a small aeroplane landing with a broken nose wheel. Used to *love* the feeling of carpet rushing over my fringe. Ended up with carpet burns on my forehead :-).

Yep :-)

Well Esmeralda I will try again. The delete button turned up but nothing happened.

All I will say in my defence is that I only wanted to share my experience, on the topic stated and it is not clear to me how that originally was truly hijacking.  I have now cut out the details of my own story,  but I am not apologising any further for my own writing style or for not being able to read all earlier replies on my mobile at 4 in the morning, and I will not take any abuse.

This last week was one of the worst I have felt in some time and your response was the most hurtful I have experienced in many years. I might still  subscribe and I certainly won't if I am going to get this kind of response to posts I make. 

you could always edit your posts by deleting the text and pressing reply to update. they would still be there but no text. worth a try....

And thanx a bunch for your charitable attitude. Always have to have the last word do you? 

Thanks for the one last hijack there

Insulting now is it? 

You made your point. Just leave me alone now. 

Ooh stroppy

Whatever. FYI I just tried to delete it, you call the mods them. I'm leaving. 

Goodbye. 

nexus9 said:

Sorry......no intention of hijacking your post. I

You did

nexus9 said:

you think there is dirt that can be used in your medical notes

Not dirt, truth

nexus9 said:

It is not as of there is a blood test that can prove any of this. 

YES there is in my case. Did you not read?

Well I wish you luck. I have been wondering whether to ask to access my medical notes myself, but I don't live in the UK. And now it may just about to get to be even more difficult. 

I always knew something unpleasant was being kept from me, then one day I inadvertently caught sight of what one of the child psychiatrists, psychologists, or whatever, had been saying about me.

Sorry......no intention of hijacking your post. In your case, if you think there is dirt that can be used in your medical notes and you are actively pursuing a diagnosis and you are sure this will be helpful to you, then pursue it. It is not as of there is a blood test that can prove any of this. 

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 .

Many thanks x

Thank you very much. It did occur to me that she cant open my head and look inside. I have to tell her about it. 

Best  x

your information is really good. thanks for this

I think you are doing the right thing, give them as much info as you can was my philosophy. I wrote several pages worth! Even if you are not able to persuade them at least you know you gave it your best shot and you can use the same info if you choose to go private so the effort wont go to waste

Wishing you all the best!

Ok I am now doing what l said I would not do which is writing up my personal history in great detail for my assessor.

What I found in my NHS medical records is so compelling to me that I think it's worthwhile to pursue a diagnosis. I also found a transcript of my o level results which shows an A for English Language and a U for Maths, which is super typical for HF  females. That should do the trick. If it doesn't,  I really give up with this assessor and will go private because that  is hard evidence, in her hand.

Time to make an appointment for my 2nd assessment I think.

Thanks to everyone who has been encouraging here, and also a huge thanks to The Internet, without which I would know zero about anything of interest about anything at all  

Best x