Medical History attached to referral, irrelevant and upseting

I picked up a copy of the referral letter from GP today, as I am seeing private consultant rheumatology on Tues. To my horror, attached is a detailed medical history going back to 1982, when I took an overdose, another in 2000. I was also misdiagnosed with depression for over 30 years, then with BPD in 2010 and Cyclothymic Personality Dis. in 2004. In 2015 the psychiatrist refuted these diagnosis and correctly diagnosed Bi polar II. Despite requesting the GP erase incorrect diagnosis, as it was on another referral to Haematology last year.

She's just added (Combined with Bipolar affective disorder type II) to them all on my Problem and Significant Past. It has really upset me, it is totally irrelevant to the rheumatology issue, and part of my past that I want to forget, and not to be judged all over again! In the letter itself she omits that I have osteoarthritis in my neck and lumbar region, just that I am finding it difficult to wipe my bottom. I have actually been in constant pain in my side for 7 weeks now.

I am going to exclude the drs medical history. Fortunately, I have all my records copied, including MRI and ultrasound and bloods. I sound like a nut case! I have a degree in Psychology and last yr completed an MA in Fine Art. Its disappointing to say to least. Den Hen

[PMRpro Ambassador]

Time for a complaint methinks. Though I believe historical medical notes can only be altered with the written agreement of the original doctor who made the diagnosis. I might be wrong though.

[Hidden in reply to PMRpro]

I expect you are right. It's so disappointing, it's really upset me. Still have PIP tribunal to sort out, and the appointment with Rheumy on Tues. I think the GP secretary, just produced my notes going back to 1982 and put it all in, relevant or not! It ridiculous. Struggling to afford private consult, using PIP money for next month, as only getting lowest amount. Just want a diagnosis and treatment to stop being in pain. Sorry to moan. I have been to NHS England before with complaints, they upheld my allegations, but the GP practice gets no punishment, slap on wrist. I have wasted too much time and energy, just need to trust in Rheumy, hope for the best, then deal with PIP tribunal.

Will address issue of medical history with surgery again, but not now.

Thanks for response. Sorry for rant. Great help on site and you.

Sleep well. Denise

[PMRpro Ambassador in reply to Hidden]

I know exactly what you mean. I probably have a note of "alcoholic" on my hospital notes in England. Due to a very poor consultant (as judged by all his colleagues) on call when I was admitted with an episode of transient global amnesia. HE decided it was drink-related despite being told it was not by the admitting A&E consultant. The gentleman had a particular ethinic background... He told me to squeeze his hands to show it wasn't a stroke (nothing at all to suggest that and all relevant tests had been done) and then complained I squeezed too hard. And refused to discharge me until further tests had been done that would take several days. Luckily OH called in favours and they were done in 2 hours. I told my GP about it - he thought it was hilarious - while I DID appreciate the humour I did NOT appreciate such a false dx being on my notesl However - will have been out of the country for 10 years soon, my notes will go to the great recycling bin in a warehouse in central England...

[Wenben in reply to PMRpro]

Can I just ask a question about your last sentence PMRpro. Are all medical notes destroyed after 10 years in the UK?

[piglette in reply to Wenben]

Hi Wenben, my GP offered to find out if I had chicken pox as a child. That was much longer than ten years ago unfortunately! They have a big room full of old paper records down at my surgery.

[Wenben in reply to piglette]

Thanks......yes I was thinking that sometimes there may be a case for wanting to refer back as you mention. 10 years is not a long time so was wondering if they are actually destroyed or does it depend on the health centre concerned.

[piglette in reply to Wenben]

Hi Wenben, things like types of hip or breast implants used need to be saved so that if there is a problem such as metal on metal it can be checked and people called in to see things are OK. Ten years is not that long in such cases. In fact hips are now barcoded so perhaps they are assuming our records could be lost!

Even when I lived abroad for ten years they seem to have kept my records, although they may have changed that now, as for PMRPro.

[Hidden in reply to Wenben]

In England, I'm sure they keep them forever, they lost my ones from childhood. Only start at 20, go to date. I had to hand copy all the paper ones from 20yrs old to when they went electronic, so have all of them myself to 2015, and will get last two years soon, so I have everything, yes I have trust issues!!! Dx

[PMRpro Ambassador in reply to Wenben]

Not as long as you are registered with a practice. Once you no longer feature as part of the NHS system, the records are sent to a storage facility and eventually may be destroyed if you don't reappear in the system. And there was a scandal a year or two ago where medical records had been lost altogether within the storage system.

[Hidden in reply to PMRpro]

I hope your lucky enough to get rid of what you don't require!!!

thanks Dx

[Juliaaf in reply to Hidden]

I can understand how upsetting your situation is. It may be a good idea to have a word with your GP again or talk to the Practice Manager about how this situation has upset you.

I have found that sometimes communications between surgery and hospital are not what patients expect . Perhaps your GP does a quick referral then the secretary sends the message off. They may not even look at the old notes in detail

It is important for the notes to be kept . I think that a lot of patients have medical details on their notes that they would prefer not to be seen, but I know that it is against the law to change them. However it would not be against the law for the GP to write a comment on the notes re your past and present medical history. Surely if appropriate medically they could do that. I don't think they would want you to be upset and stressed by your past medical history notes.

In my experience as an Kex senior hospital and community nurse , notes are there to guide and not to judge.

Do hope you are less stressed and worried. But if you feel the same talk or write to the Practice Manager or to your hospital Consultant /GP explaining how you feel.

Good luck, kind regards. Julia Howarth

[Hidden in reply to Juliaaf]

I have calmed down, and I am working up to sorting it out, but have to focus on my health for now and seeing Consultant, then sort tribunal paperwork for PIP appeal. Getting strength from somewhere!! Thanks for advice. Very helpful. Dx

[Hidden]

Yes. Interesting how one doctor can mess up your whole history. They have lost my notes prior to my twenties. I was put on pheno barbitone as a young child - 3 to 8 as my mum said I had a convulsion, my dad says I had a tantrum and held my breath, went blue and he held me upside down to make me breath. Mum was probably Munchausen's by proxy, so liked the attention I got and she got from me being on a 5 yr hospital trial. I did not have epilepsy, never have. Ironically, I'm on an anti-convulsant now, Epilim, for the Bi polar (6 years now). the childhood dose could have caused my mental health issues, but no proof. I meticulously went through my paper notes, took 3 hrs to hand copy them all. Very revealing, like you say above what dr's really think of you. Have all of the rest of my notes since last year too. Always ask for copies of letters and test results. Sound slightly paranoid, but if I hadn't asked for the latest copy of referral letter, I wouldn't have known what was in it and what was missing, important information!

Yes. Life for me always turns into a challenge with authority, I usually come off worse. Although my last PIP Tribunal was a success.

I try to be positive and will put this to one side and focus on the most important thing, my health.

Without it, you have nothing. I want to live, laugh and enjoy everything to the best of my ability.

Thanks again. Going to bed now. Very tired.

[sondya in reply to Hidden]

My baby daughter got so frustrated with her brother's teasing (three years older) that she would go into a spasm and stopped breathing. Gave us a fright. Most times she would come right but in one instance she didn't, was unconscious and we rushed her to our doctor. He explained that unconsciousness relaxes the muscles and breathing resumes. Which is what happened. Phew. Less scary from then on.

[Hidden in reply to sondya]

That's at least a relief that no medication was required.

[SnazzyD]

Happened to me when I had a rough patch of then undiagnosed physical problems in my teens and a stupid doc decided it was mental. It became a barrier to other correct diagnoses because every doc after that latched onto it and assumed it was all in my head. Never mind that the mystery symptoms turned into something definite later on, it stuck for years.

Anyway, rant over - when I worked at a GP surgery, whenever we sent referrals, the admin staff would pull up a summary of medical history to go with the dictated letter. It was automatic and contained a minimum of main headings of significant problems from the year dot. It relied on the GP deciding whether to put something under a heading of significant or minor at the time of diagnosis. Often if diagnoses came from outside the practice they didn’t make it onto the record as a heading. The admin people wouldn’t be allowed to make a decision on what to keep or not and I doubt the GP ever revisited it before it was sent off.

I would complain to the manager but be calm and measured.

[Hidden]

I am so sorry this has happened to you... it feels like a bit of a betrayal to me. : (

After being treated privately in the USA and here in the UK, by four different Cardiologists (over a 30+ year period) for a Mitral Valve Prolapse; an NHS Cardiologist Consultant ( who I saw once), based on one ECG, has determined "...there is no evidence of a Mitral Valve Prolapse," and has denied my Rheumatologist's request for an echocardiogram.

His letter to the Rheumy and my GP, makes it sound like I just made the whole thing up.

[Rimmy]

This is horrid for you and as evidenced by many of the replies it is often partly under-girded also by incorrect diagnoses.

As it is more than blindingly clear that many people - on this forum alone have difficulty in getting accurate and timely diagnoses - (often due to a 'mysterious' lack of education or understanding of PMR/GCA and appropriate treatments) - that reference to and regurgitation of patient info which is dated and possibly inaccurate as well can triply complicate things. Crazy, crazy, crazy and certainly NOT 'good' medicine !!

[PMRpro Ambassador in reply to Rimmy]

Especially when you consider the number of consultant's letters that sound as if either one wasn't present at that particular meeting or all the dictations have slipped a couple of addresses (if you see what I mean). I do at least watch my doctors writing the notes onto the computer themselves - mostly! Given all doctor's skills with handwriting you are left to wonder how anyone else manages to decode them!

[Rimmy in reply to PMRpro]

Blimey PMRpro you just have to wonder with that (potential) litany of 'errors' how much of it 'holds together' at all. Can't help wondering if the people meant to be monitoring standards in medical education and practice are doing their jobs properly or is this too tall an order !!?

[PMRpro Ambassador in reply to Rimmy]

Someone on another forum said she found her GP has handed over wrong info about her medication - seems to have confused her records with those of her husband. It really beggars belief!