Question about medical records

[ludlowstreet]

Have name changed for this.

I have something on my medical records that courses me a great deal of distress. I don't ever go to the GP as a result because I can't face anybody who has access to this information. I have driven 100 miles round trip before to see a doctor at a walk in centre if I have needed to see one. I have children (registered somewhere else) and had hardly any care during pregnancy because of this. This has been the situation for many years now and I don't feel any better about it and will never be able to overcome this. I would like the information removed but have been told that this is impossible, even though it has no relation to my current health (apart from harming my mental health) and will never have any importance.

I moved house about a year ago and recently informed the GP practise because of letters being sent to my old house (my records are kept in the safe there and are not generally accessible). I have been told that I am now out of their catchment area (just) and will need to register with a new GP within 30 days or they will send my records to the Health Authority.

Please help, I can't stand the thought of anybody seeing my medical records. I'm not crying but do have tears running down my face at the thought.

I don't know what to do.

BTW Otherwise my life is fine, great even, and I am fine seeing doctors who don't know my past.

I have written proof by way of a printout that my medical records are overwhelmingly incorrect. The surgery has clearly muddled up my records with another patient with a similar surname.

Crystalglasses .. i fear this is common . It because of the culture of secrecy surrounding medical records.. we seldom realise . How can we ?

I have found, since the computerised records came in, that doctors do edit things when asked. They would not remove relevant things but can reword them and listen to the patient. For example it came up in a pre-op that I had an allergy to a drug on my notes, whereas I just had some bad side effects when the dose increased too quickly, they edited it to say "if this drug is necessary, take caution and monitor carefully" or words to that effect. I also had a whole load of injuries in my notes prior to an arthritis diagnosis, which were re-labelled by my rheumatologist.

I really think you could say to your GP how upsetting it is that anyone can read "X" and ask her to re-phrase it as "trauma" or something that keeps the medical integrity and information but removes any sense of gossip or details.

As for being able to edit your own notes as you please, I think that is as ridiculous as being able to edit your own birth certificate, driving licence or marriage certificate retrospectively. People would hear ways of fast-tracking their treatment, for example: "just go and edit it to malignant - you'll be seen so much quicker." People already expect doctors to psychically see to the root of a problem when all the patient offers up is: "I'm fine really, not too bad, don't want to complain...." imagine not having any reliable notes either. Imagine dealing with people convinced they have something after a google consultation who could edit their own previous notes with recall bias to make their case. We would also have the prescription drug problem they have in the US if the GPs had to take the patient's word for it over the notes - the downsides are so much greater than any benefits, especially as most GPs are already reasonable enough to have a conversation and compromise on the few examples you have given (including OP).

of course people shouldn't be able to impersonate doctors runnerhasbeen, don't be silly.

but if a patient wanted to write on her note

'given the lack of attention I received at the scan, and the fact that my lump has visibly grown in last few weeks, I am convinced that it is malignant, and the doctors have missed it. Signed, Patient'

then that would be a very good thing that would save lives.

And the opposite way round, if there is something in your past of which you are ashamed, then why on earth shouldn't you have the right to remove it from your records? the only person involved is yourself. why SHOULD every doctor, nurse, administrator you encounter for the next seventy years be informed that you were once treaded for depression when you were 19 after your sister died (or whatever it is that seemed inoccuous to the GP who wrote the notes, but is deeply upsetting to the patient)

Do we know that the item is on the electronic record? The reference to the record being kept in the safe suggests this is an item on paper.

Having just read this thread, I am quite staggered by stubbornhubby's contributions. For you this seems to be some sort of libertarian debate, but the OP is asking some serious questions.

OP, you have spent a lot of time and energy finding and planning ways to work around this issue. Every time, you are reducing the quality of the healthcare you receive and increasing the risk of things that can go wrong.

The behaviours you describe are phobic and avoidant, to an extent IMO that they are outweighing the benefit you perceive they bring. Also this thing in your records, you say yourself it's not inaccurate. I am unclear what exactly is the issue here - do you think it affects the care you get, are you embarrassed/ashamed/angry? I genuinely don't understand.

I am an NHS manager and deal with a lot of this sort of stuff and my clinical background is in mental health (I'm not saying that you have a MH condition). However, I think this is becoming a little out of control. And please, please stop taking your husband's asthma medication, it's really risky.

Just to answer a few questions.

It is something I am ashamed of.

I think I am phobic about it maybe, but I am not phobic about seeing doctors, I fine with that, it's just any who know my history I can't cope with. I also know that they couldn't care less about it and would have no opinion either way on me.

Other than this issue my mental health is fine very robust in fact and I think in my life I have coped very well with things others would have more difficulty with.

I have also been told, (and can't see how it could) that it has no relevance to my present or future health. Therefore surely there is no reason for it to no to be removed because even I can see how much it is impacting on my present health and do worry how I am going to manage in the future.

I think it was in both paper and electronic form. The notes on the computer where printed out and deleted from the computer then all the paper records kept in the safe.

"I am an NHS manager and deal with a lot of this sort of stuff"

What do other people do then? How do they get round it and access healthcare? I have accepted that the notes will never be removed so unless I am willing to go to court about it (which I'm not) I just have to live with the fact that I can't have a GP. I have found ways around this which I know aren't ideal but I can use by husbands medicine and if I have to drive 100 miles, then I have to drive 100 miles. If you work in healthcare and know a better way please tell me.

"And please, please stop taking your husband's asthma medication, it's really risky."

What am I going to do then? I can't breath without them and it seems a lot safer than buying them on the internet.

Tribpot "Ludlow, as of April 2012 you will have the right to register out of area if the practice is willing to keep you on the books"

Do you know anything more about this? I just want to keep my notes out of sight I the safe at the current GP. I keep on hoping they'll have a fire or something and they'll be destroyed.

I just can't begin to think what it is that would make you feel so ashamed that you would put your health at risk - to the point where you could cause yourself serious harm or even death - by taking someone else's medication :(

I cant imagine either. Lots of people have things in their notes that might be embarrassing to them if people who knew them socially were to see it, but to a doctor these things are not going to be shocking or surprising. Does the doctor who knows your concern think that your reaction is in proportion?

Sorry, I have just seen your post where you say that you know they couldnt care less about what is written.
I hope that you can find a way through this.

I know this isnt really relevant to your situation, but all my doctors notes got lost when I move house 5 years ago, at the time the practice that I moved from was not computerised, so from the ages of 0 - 26 there is no record at all of anything that I have had done, so now I have to guess at anything, from which different pill I have had over the years, and the ossociated problems that they caused me, to which holiday vaccinations I have had and when, this isnt helpful at all.

I am on the fence with regard to the ops story, I can see both her side and the Health Service. And I just cannot imagine what can be so bad that it is causing her all this anguish. P.s I have not read all the posts, as I am at work, but wanted to coment.

ludlow would you share with us what it is that you would like removed from your notes and maybe we could get a better understanding of your situation :)

QueenofWhatever

And I am staggered by your lack of sympathy with Ludlow - you are telling her she must just suck it up.

the nature of Ludlow's secret is not relevant. Whatever it is, it will be something that you will say 'yes i can see that's embarrassing, but really you must come to your senses, it's not that bad'..

but that's not the point, whether or not is seems that bad to you - IT IS THAT BAD TO HER

I say again she should have the right to remove it from her records - whether this is a risk to her health or not. she's the best judge of that. I agree with Ludlow, removing it will IMPROVE her health.

Ludlow asks 'what do other people do?'

some strategies

• people think ahead and avoid having things on their notes in the first place. When they have to see a Dr about somethnig they really want private,. that's when they drive 100 miles or - if rich - go to see a private GP (less than £50 even in London) so that notes are never made. This is too late for you :-(

• people do their best to have their notes lost. If you register with a new GP, and confuse the issue of who was your old GP, you notes might never catch up with you

• people prevail upon their GP to edit their notes.

I think this is your best bet. You need to go and see your GP again, but this time with a friend - or a lawyer - who can help you and have another go at persuading her to take this information away. If the GP is a compassionate human being she really should do this for you.

ludlowstreet - you should also familiarise yourelf with this site on the new(ish) summary care records
www.nhscarerecords.nhs.uk/index.html you may wish to fill in the opt-out form (although it's possible/likely that your secret won't appear on the summary care record, as it is, as other posters have said, merely a summary, and it focuses on things a doctor treating you in an emergency would need to know.

BTW - if it's any comfort, and as it s probably pretty obvious by now, you are not entirely alone I HATE sitting at the Dr as he scrolls up and down my records on the screen reading about things that I do not particularly want to be reminded of when all I am there for is a new puffer. Luckily for me I don't have it as bad as you do, and I can and do go to the Dr if I really need to. But I do know a bit about how you feel)

I also know how you feel. There are things on my medical record that I'd rather keep private although I don't mind my GP knowing. However, I worry that my medical records can be viewed by various friends in the medical and pharmaceutical profession. For example I have friends who are receptionists in various GP surgeries, who are GPs working in surgeries other than my own, who are hospital consultants and who are pharmacists where I have taken my prescriptions. How easy is it for any of them to access my medical records? I have opted out of the summary care records for this reason but don't know if it is enough of a safeguard.

I think stubbornhubby has talked a lot of sense. If something on your medical records is doing the patient harm and has no relevance to present or future health why not just remove it.

Also I think patient confidentiality if quite frankly a laugh. The doctor can see it, the nurse can see it, the receptionist can see it, the secretary can see it, the pharmacist can see it. So, if 50 people work in a practise, 50 people can see what's on your records. There's a good chance you will know one of those 50 people socially and I'm sure they would be very professional and never divulge to other people (other than their spouse) or even let you know that they know, but they will know what's on your records.

Just so that you know Ludlow, confidentiality means that a health care professional cant tell their spouse any details related to patients.
Its very unlikley that everyone who works at your practice will have read every page of your notes.

But, Eviscerateyourmemory, if they know you socially they may be nosy and have a look. I really think that unless everyone can see everyone elses records it is very disempowering to know that your friends may know your private and confidential medical history, even more so if they are not letting on to you that they do. I have several long term illnesses and a very complex medical background which I don't disclose to anyone socially or professionally as I know it would change their perceptions of me.

Also, I'm too long in the tooth to believe in medical confidentiality, especially between health professional and spouse and there is juicey information/gossip about a friend. Reason being is that I've been told confidential info about other people by friends who are health practitioners or work in GP surgeries.

Oh dear.

Why don't you register with a new doctor and make up a cock and bull story about your records or your previous doctor until in the end they just stop asking you for them? Would they be able to track your records down?

It's more important that you and your children have a doctor close by and that you have this stress removed from your life. If there's any way around it, that's what I would do.

If this is old, and has no bearing on your current health or mental health, why should you be bothered by it?

I think it's awful that it can't be removed. Ugh. One reason I've opted out of this computer thingy.

If you aren't on the computer thingy, can you say you need your records for new doctor cos you're going abroad or something? Surely as they're your records you can have them? I think I live in la la land on this one don't I.

Ok just read a bit more.

First of all go back to your GP and ask to be taken off the electronic thingy.

Then go to a new doctor and just pretend your notes are lost or you've just come back from abroad, or you've been in private practice or something.

Would this work

I completely see your point.

ludlow :-)

gooseberrybushes - it might well work, it's worth a try.

here's my revised, improved plan..

• identify the doctor you want to end up at "target-gp"
• identify a temp doctor you are going to use for this plan
• register at temp doctor, and utilise all the ploys above so that he doesn't get your note ('I've just come from scotland, and can't recall my old GPs actualy addrss, I need to look it up' sounds promising.. I bet the scottish NHS is on a different computer system)
• go to the temp doctor a lot.. new asthma stuss etc, so as you start to build up new notes

• after a while register at 'target-gp' and now of of course you can say your previosu dr was temp-doctor who will supply a set of notes... yes the notes will be incomplete, but i don't think taget-gp is going to spend a lot of time worrying about that.

ludlowstreet, your medical notes are not only for your benefit but could also benefit your children in the future. I don't know what the issue is that you are concerned about but if it could lead to diagnosing a problem in one of your children, how would you feel then? Would you still want it removed.

You ask how others cope? I think others don't need to cope because on the whole they don't suffer the phobia that you do. Is it something that you would consider counselling over in the first instance? Before you make any rash decisions or put undue pressure on your GP to do something that he/she may feel goes against his/her professional ethics and which could have consequences for your children?

Above plan sounds good. We never get complete notes for travelling families or forces families and unless you have some major comPlicated health issue , no one is going to bother chasing up old notes for no reason...... Unfortunately the nhs do loose notes it happens and unless it is crucial they are tracked down they just remain " lost"......xxxxxx

exactly PUMBA... because most notes aren't actually even very useful.

scroobiousPip - that's unlikely, but if OP does have some medical condition that is hereditary it will be easy enough to have that put on her new notes. She just needs to mention it to her new GP.

In reality most notes are far from the vital documents people beleive they are: they are full of errors, omissions, mis-diagnoses and irrelevancies. Doctors really don't pay them very much attention beyond checking what was the last thing you came in for... to try and give impression that they remember you :-)