Cerebral Palsy
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Medical Records help please.

NasmamuNasmamu Member Posts: 45 Connected
Just a quick question regarding medical records. Hope somebody can help. I've had CP since birth (Spastic Diplegia) Diagnosed at 2yrs old. Im now 38. Will my diagnosis and subsequent treatments from then be available if I as for my full medical records or is there a limit to how far back they can go. I ask because I'm looking to get them to help with my pip claim and don't want to pay the extra expense of getting them if they won't be relevant. I've not seen anybody for my CP for 20yrs as seems to be the case with majority of adults with C.P.

Many Thanks 

Replies

  • BeccyJBeccyJ Member Posts: 59 Courageous
    Hi @Nasmamu

    I know when I started really, really struggling with my mobility etc, I was about 27.  I eventually got a hospital referral and the doctor had my medical files on his desk.  There was barely anything in the file which really shocked me.  My medical records should have been quite extensive given the amount of time I spent in hospital as a child.  I asked about it and the doctor indicated they probably no longer had my childhood records.  That made it really hard for the doctor I saw at 27 to fully understand how my overall functionality had changed since I was discharged from paediatrics.  Fortunately I do have one letter at home from years ago which refers to a diagnosis of spastic diplegia CP but that is literally all I have.

    I found this link on the NHS website.  Looks like childhood records are destroyed when you reach 25.  That would be why the doctor I saw at 27 had a practically empty file in front of him!  Seems strange to destroy the childhood records of people with a congenital, lifelong condition but is all of a piece with the perception that CP is a "childhood" condition!  It might be worth clarifying what information your GP has.  They must have something on file (at least I would hope they do!)

    http://www.nhs.uk/chq/Pages/1889.aspx?CategoryID=68


  • NasmamuNasmamu Member Posts: 45 Connected
    Thank you for your reply, yeah my biggest concern is getting hold of medical evidence almost 3 decades old. I must say I'm not very hopeful. I have an appt with my GP next week so let's see what we can do. The lack of care available to adults with CP is widespread and alarming and I shall be making that point at any assessment and tribunal if I'm questioned about lack of medical evidence. It's almost farcical.
  • Sam_ScopeSam_Scope Member Posts: 7,732 Disability Gamechanger
    Best of luck with your GP - let us know how you get on. There is some info on medical records here http://www.nhs.uk/NHSEngland/thenhs/records/healthrecords/Pages/what_to_do.aspx
    Scope
    Senior online community officer
  • NasmamuNasmamu Member Posts: 45 Connected
    Sam_Scope said:
    Best of luck with your GP - let us know how you get on. There is some info on medical records here http://www.nhs.uk/NHSEngland/thenhs/records/healthrecords/Pages/what_to_do.aspx
    Sam_Scope Hi Sam, just an update if you can call it that. The GP allowed me to see the medical records that he had for me on his screen. We've been with this GP since 2009 approx and he had tons of stuff on my crohns disease but regarding my CP. had an almost side note like mention sent to him from our previous surgery saying patient has cerebral palsey. NOTHING ELSE. I suspect I'm not the only person to have been forgotten by the NHS regarding my CP in adulthood. Went through 4-5 operations had daily physiotherapy during primary and all through secondary school and they have nothing but 1 lousy side note about me having cerebral palsy. Unbelievable!! 
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