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Medical records and autism diagnosis - records missing?!?

BigDonnyP

Hello all

I just have been filling in my PIP reassessment (that time of year again) and thought given tendency for medical assessors to suddenly decide you aren't autistic or such like I thought I would access my GP records to get my report.  My doctors has a new online portal and I used this to see my records and was really surprised.

I lived in Hull for a few years and it was during my time there I was diagnosed as Autistic and not schizophrenic as the GP thought when they referred me. This was how my ASC was named if that makes sense. Only issue is I have no records for the 2 years and 10 months I lived in Hull - they are literally none existent.  My other records don't deny I am ASC but I cannot actually get the diagnosis report or anything because my records have not been transferred or been updated.

I cannot actually remember which doctor it was or much details about where the GPs were etc. because my ex partner dealt with that sort of stuff (She was a nurse); I did have paperwork but it was destroyed by same ex when we split up.

Does anyone know if there is anyway I can find out details of the report, or if it even still exists? I cannot afford private diagnosis and feel my doctors won't refer me again for one. I am still waiting for an urgent referral from August 2019 so don't fancy chances if I asked for help with it.

  • BigDonnyP,  I understand your frustration.

    A couple of years ago, I tried to get copies of several psychiatrist / psychologist assessment reports dating from the early nineties from my local hospital's record office.  I was informed that due to their policy of store and destroy they would probably have been destroyed.  I gave them all the details and they carried out a search but found nothing.   I accessed my GP's notes as I thought the referring clinician would have copies, but there were no reports. There were records of my being referred, but nothing more.  I was not given copies at the time.

    It's just not good enough.

    Ben

  • Thanks for the input peeps.

    As luck would have it my PIP letter arrived today confirming I am staying as is regards getting the same as before (which is awfully fair of them and so quite unexpected).

    In regards to accessing the records and what systems; I wouldn’t have a clue where to begin... I can remember I went to a big building that looked like a school from the 1990’s to see the psychologist but that is about it. I couldn’t even begin to guess where it was or when. Time and when things happen is something I am terrible at unfortunately. I only know it must have happened between 2002 and 2005 in Hull but that is about it.

    I may have to look at getting an advocate but there is very little in terms of services or support in East Yorkshire for adults with Autism 

  • Hi. Do you know what System is used by your GP practice? For example: SystmOne, Emis Web, Vision.

    If the two systems between the Hull Practice and your current practice, sometimes the transfer can not be done electronically and the report will have been printed and found in the paper notes.

    The practice should have a framework for you to access all information in your record, for example you can request copies of your correspondence (hospital/secondary care notes) just for your time in Hull. They will then have to look through your full notes and give you what information they have.

    Also  sometimes previous GP details are kept on the Systems, so they may be able to trace your previous GP. They also may be able to contact the National Spine to see if this information is available to access.

    There definitely should be a way for you to access your previous report. Can you remember where you went for your assessment, as they are governed by the same Information Governance and you can request a copy of your report from them.

  • Don't worry about it for the PIP, the fact you are autistic, or any other condition is ignored.  They are only interested in whether you are able to do certain things, no matter what your impairment or disability is.

    Have you approached your GP directly about the notes.  The online notes are only very sketchy in a lot of cases and not everything is on there.  There is a lot of my medical history not on the online portal, but if I go to my GP the notes are there.  Which just makes me wonder what the value of seeing the medical notes and checking them at home actually is.