GP records

Posted , 9 users are following.

Hi everyone,

I really need some advice.

I was recently diagnosed with fibro by my GP after 2.5 years of hell. He referred me to a rheumatologist for a treatment plan at the start of December. It was an urgent referral but I still don't have an appointment.

Cutting a long story short I decided after scrimping and saving to book a private rheumatologist appointment as I'm desperate. He asked that I bring my records with. I requested a copy of my records and was absolutely horrified to read them.

They are rubbish! I've been complaining of shoulder and neck ache for 2.5 years and there is literally no reference to it at all. I had conversations about hip and jaw ache but there's no mention of this in my records either.

Now I understand why it has taken so long for a diagnosis. I don't know what to do with this information. I feel betrayed and neglected that this whole time they never listened or cared.

Thanks in advance.

1 like, 14 replies

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14 Replies

  • Posted

    Hi ChronicGirl

    I'm sorry about your doctor but somehow I'm not surprised! That's doctors for you, they hear what they want and help you with what they want, and if they don't want, you don't get help. 

    Some other people on here might be better advising you, but if you still have the rheumy appointment then I would suggest taking your records and telling him of your horror upon reading them that your doctor didn't even make note of what you were telling him, he should still be able to help you, and if he's in your area he may be able to suggest a "sympathetic" doctor as you would be better off changing doctors too.

    Hope this helps

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    • Posted

      Hi Boqer thank you for your reply.

      Asking the rheumatologist if he can recommend a GP is a good idea I hadn't thought of that, thank you.

      I'm so glad for kind helpful people on this forum!

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  • Posted

    Hi chronic Girl

    That is so disgusting it makes me wonder now what they haven't wrote on mine! Do you see a gynecologist by any chance if so you could request those records as they may have more information I know mi e put a lot of symptoms down as I wat h him write it lol

    I think the best thing to would write down all your symptoms literally everything and when you have your next rheumatology appointment explain the situation and tell them all your symptoms as much as you can think of over the last few years.

    Also you should complain about your doctor /surgery as that is so bad.

    Hope that helped a little.

    If you don't mind me asking how did you request your notes as I need to do mine but wasn't sure of the procedure.


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    • Posted

      Thank you for your reply shannel82. I will take a list with me to my rheumatologist appointment, good idea!

      I called and asked my doctor's practice what the procedure was. I just had to write a short letter stating I wanted a copy. They called me a week later and said I could collect them. There was about 1.5cm of paper and they charged me £35 for copy paper!

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  • Posted

    Hi chronicgirl Thats terrible to find out that none of those were in your records, like Boqer said cant say Im surprised either to be honest with you. Take them along to your appointment explain how horrified you were to him that none of those things were down in your records. But what I would do also is have a word with your gp about it ask why they wernt recorded in your medical notes and also if you can change surjurys hopefully find a better gp. ask family friends what their gps are like if they can recommend a good practice. Theirs alot of practices out their with uncaring gps I know as ive come across them. Take care
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  • Posted

    Hiya I'm not surprised some doctors are useless. I had the same problem but went to a different gp in our practice who has been amazing. I would definitely ask them to recommend a different gp.

    Hope u get some help ASAP.

    Good luck xx

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  • Posted

    Morning Chronicgirl,

    I feel your pain. The whole system is shambolic at best. I'm afraid to say negligence is far more common than care. I've been in casualty just in a corridor for eight hours having fits  in a wheelchair. Ended up being put in an office in a maternity ward! 

    I have exactly the same problem except it's coming up to nine years now. I think when I go in there I must just start speaking Swahili or something. NO ONE IS LISTENING TO US! It's mind bendingly frustrating. I wouldn't mind but the nhs is not free we all pay a fortune in tax.

    "duty of care"

    my arse!

    thank god we have each other to talk to. 

    Get some rest and get back back in there fighting girl!

    we all know this is down to one word and one word only. MONEY!


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  • Posted

    Hi Chronic girl:

    I am not an expert on this but his happened to me too.  First of all, you don't know what they write down and if you don't get a copy of it, it is in there hands only.  My wife being a nurse and nurse supervisor had to take meticulous medical notes and she was a stickler on it.  Why doctor's don't mention pertinent information, I don't know.  It's like it  is either too much for them or disregard it completely.  You the patient suffers as there is no history.  Going to a new doctor is hard enough and to explain the things that you are going through is even harder.  You want the doctor to understand what has been tried and tests given.  It would look like you would have to go through a complete medical anaylisis of by your doctor to determine what he has to do.  Not only that is time consuming but expensive as well.  If you are on insurance, depending on what kind, like I am on medicare advantage which sucks, then the word medicare means that quite a nmber of doctors today don't even want to hear that word.  Medicare is slow pay and reduces the amount the doctor charges.  If something is not done fixing this, eventually will not take medicare.  I had to wait over 2 months for an appointment.  I bet if I paid it privately, I could have gotten it within a few days.  Doctors like cash.  One of the best things about cash is that you can get a discount.  They don't mind doing it as they make more than what insurances will pay unless you have excellent insurance such as supplement. 

    The question is what should you do?  It would be hard  to get a good set of medical records if there are none determining what you are suffering from.  Is there anyway you have another doctor that have them?  What about hospitals or clinics that you had tests at such as radiologists and even blood work?  It would help some.  But if you neither had these, I would imagine things would have to go as from square one.  Sorry to say this but what else can you do?  I hate to see you pay a large expense for a specialists who may provide expensive testing.  I don't know what kind of insurance you have but if it is any doctor co-op or HMO, not only would they not likely pay for the tests but the doctor as well.  It will all have to come out of your own pocket.  If there is anyway you can trace back to other doctors you have been too, there may be some records of what you told them there and findings of diagnosis.  That may help.  One thing I did not lke when getting records is that they were in scribbly notes and try to find what they have written.  I like to get summaries of everything.  This way you can develop a portfolio of all your medical papers.  When I moved to WA just a little over a year and a half ago, I had all of my medical records, like blood work, doctors summeries which are valuable and other pertinent information when I had surgeries like reasons why and have more summaries, where these tests and surgeries were done and th conclusion of the doctors findings.  Guess what?  The mover I had was someone I knew and did a disastrous move and lost most all my records and the ones I do have have been water damaged.  hat was so important to me.  I was devestated and lost the most important think about my illnesses and conditions.  All I can advise you as well, from now on keep good records and get them immediately.  Ask for summaries from the newer referrals.  I wish you  well, hope everything will come under control and like to hear from.  So take care of yourself as all is not lost.

    my best,


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  • Posted

    Hi - it's a widespread problem. Even consultants can't get it right. I received a copy of the letter sent to my GP from my consultant. Haven't a clue which consultation it referred to because it certainly wasn't mine. The letter suggested all sorts of things were discussed but they weren't. I was in and out in 2 minutes with "fibro" written on a piece of paper and told to go research it myself because they don't treat it at our big teaching hospital!  No help whatsoever.   Wish you better luck - suggest you keep a diary and write a list of your symptoms and what is missing from your records. Give the consultant a copy and keep a copy yourself.  Keep notes yourself of the appointments. Record everything in a diary.
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  • Posted

    Hi  I dont know what country your in, but it scares me and I wish I could take your pain just for one day and night and give you a gentle hug.  

    Why is it that we are hearing these horror stories,  I knew a friend who could not take his pain and well no one would listen to his cries of pain and im afraid at the age of 35  he took an overdose and nearly died  which was his wish  but at least, they sat up and listened to his cry for help,  now 6 plus years on  he has met a wonderful woman and his pain  meds have been sorted.  

    Come on my love let us hope your new doctor can help you,  go to see a solicitor or in this country (UK)  the CAB   they would help you to write letters.  jocelyne mason  Cambridge  UK

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  • Posted

    Hi everyone,

    I just wanted to update you following a trip to a private rheumy.

    He was fantastic. He was so thorough and knowledgeable. He has given me a prescription and tonnes of advice to help me live a new life with fibro.

    I'm so relieved to just draw a line under the last 2.5 years of hell in limbo.

    I want to thank you all again for your kind support and advice smile

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