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.

The re-registering giving a fake previous GP won't work. When you register, your record on the main Exeter database is brought up and that has your info, including all previous GPs. If you don't give an NHS number, near matches with your DOB, current/previous address will be looked at too.
If your notes are sent to and then kept at the registration dept then there's no reason for anyone to look at them and they are securely locked away.

Not registering means that you won't be called for important things like screening - which work via your registration with a GP.

I have to agree with stubbornhubby most medical notes are not accurate and I have never had a GP look back at them. When I was 12 I had an allergic reaction to some antibiotics, I later found out that my GP didn't even make note of my allergic reaction or the name of the drug involved and to this day I still have no idea what I was allergic to!
Interestingly there is a thread on chat about the incorrect things people have their medical records so it should not be the only things that GPs rely upon.
I have also had 2 sets of notes lost by a hospital. One was my maternity notes for my 1st born and the second were quite important fertility and miscarriage investigations that I had done.
Fortunately I have had GPs who are willing to listen to me as I hold the information in my head and I have managed without the missing notes.
I do hope you find a resolution that works for you.

You are all providing very helpful incites into how things work. Can I ask how you know these things? Do you work in the health service?

I feel sure I can't be the only person who has this problem. I wonder if my notes are sent to the health authority how I can access health care without a GP if I need it, does anyone know how travellers or the homeless manage? When I have gone to a drop in I have given them the name of my GP, they have always asked this.

Also I think it's a little unfair to say that I am a difficult patient, they never even see me. I think (please correct me if I'm wrong) that they get money each year to have me on their books and they don't even have to do anything for it. Unless, when I go to a walk in centre do they try to recover money from my GP for seeing me?

Yes I work in the NHS.

Afaik there are particular services designed for the homeless etc. This is not a good template to follow OP - very often the homeless and those in the travelling community have poor health and difficulty accessing services.

It is not easy to access other nhs services without a GP, they are the gatekeeper for a lot of things and the way things are going with GP consortiums commissioning services it will only be more that way in the future.

I guess northernlurker my point is that notes are are all well and good when the patient consents. and possibly useful.

but when the patient doesn't consent they are an invasion of privacy.

• ludlowstreet should have the RIGHT to edit her own notes
• given that she doesn't have that right some subterfuge is perfectly in order.

You are correct that - eventually - in theory -- her notes will catch up with her. Shrug. Start again.

but ludlowstreet - first off I am serious perhaps a solicitor will help you (without knowing what your secret is) to persuade your current GP to remove your secret from your notes before she passes you on.

ludlow

You havent said what it is in your medical records that upsets you so much, do the doctors who do see it understand how you feel?

Most people who work in the medical profession will be used to seeing all kinds of things in peoples notes, it really shouldnt affect the way people think about you or the care that you get, especially if it is something not relevent to your health.

If its not relevent than chances are that even if anyone read it they wouldnt pay it any particular attention or remember it.

I think the best way to get this sorted (although I understand it would be perhaps too hard for you) is to actually speak to your GP (or a GP) about getting that part of your records sealed or something? I agree with eviscerate though that even when we get our bits out for Drs, they couldn't care less about it being our bits, it's just another day at work if you see what I mean.

ludlow, I wholeheartedly apologise for saying you are a difficult patient, my intention was not to cause you any upset. Yes, the GP practice get paid a certain amount for taking care of you that is not recovered by you visiting a walk in centre instead, although they will be notified of that visit if the WIC could identify you.

I do feel you need a GP, for screening as Bela says if nothing else. More fundamentally, you have the right to be helped and I think a number of us on this thread feel there is an issue for which you need help. It's your life, you absolutely can choose to disagree and reject our advice. But there has to be a better way than you driving 100 miles and using someone else's medication. I think there is merit in consulting a solicitor if you can afford it, but an honest conversation with your GP might be at least as helpful. If the item has no clinical relevance I can't see any reason why it would be summarised on the new record even if it can't be removed from the paper one. I haven't seen a paper record used in general practice in a long time - admittedly that is only as a carer of a chronically ill husband, not in any professional capacity.

It's your choice to deregister. If I were you, I would make sure I knew my NHS number before I did so, and I would seek independent medical advice for your known health problem, your asthma. But I think there are better options if you can manage to explore them. I wish you all the best.

If paper records are hidden away and never read by GPs why is it so difficult to edit them? It doesn't make sense to me.

Lokking at it another way, There is another active thread on mn which focuses on inaccurate medical records. This seems to be fairly common so surely the op could just make out that the info isn't true

tribpot- Don't apologise it's fine, I'm really not at all the sensitive sort, despite the impression this thread gives.

"surely the op could just make out that the info isn't true" I wish I could do that but the GP knows that it is true.

Are any of you GPs by chance? and have come across this before?

If my notes are sent to the health authority I will have no GP, can I still then access a walk in centre or out of hours service? I fear that if I ever go to an out of hours service they will just try to register me.

I really don't know what to do.

Ludlow

You say in the OP that you will never be able to overcome the impact of the information in your notes - is this something that you have tried to do?

There are many things written in peoples medical records that could be considered unusual, and GPs are well used to seeing all sorts of things. Whatever it is is very unlikely to change the way that your GP sees you. Have you considered counselling or CBT to look at this issue? Sometimes when people feel that they have a horrible secret, often telling people about it and realising that it doesnt change the way that people feel about you can be very freeing.

ludlow - you will still have access to out of hours/walk in care. They won't try to register you in the sense of obtaining your GP records although they may have access to a limited amount of current summary information online. But if, in the future, you need referring for something this will be difficult to do.

I will write to the doctor as beg them to keep me on their book, I don't think I'm any trouble to them, they never even see me. Think if I am out of their catchment it will be only just. I seem to remember a while ago the government saying people shouldn't have to live in the same area as their GP if it was more convenient to have a GP somewhere else.

I think, in the kindest possible way, you need some perspective on this. You were willing to put your dc's very lives at risk by recieving little care during pregnancy because of something on your medical records?? Wow.
I just cannot understand it, sorry. I have all sorts of stuff on my medical records that I'm not exactly going to frame. But it's there and I trust my GPs to be proefessional enough to not be bothered by it. The fact that you are so bothered by it suggests to me that the very people you are hiding from are the people you need to help you. I think counselling would go a long way

i think OP made clear her DCs have a different GP, and no problem taking them there.

why should she have to endure counselling/therapy about a matter she DOESN'T WANT TO TALK ABOUT when the whole thing could easily be solved if her GP would simply edit the records. Much simpler.

Grown ups, of sound mind, should have the absolute right to see and edit their records. It's a downright scandal that we don't.

A medical record is a legal document though, if it has happened why should it not be recorded? If it's an error then absolutely yes you should get it amended but if it is a true record then it should stay.
Medics are taught that if it's not written on the notes then it didn't happen so if you say "The Dr never told me I could go blind if I had this operation" and the Dr says he did but never wrote it down, your comment will be upheld even if you're lying through your back teeth.
I'm not suggesting for a moment this is the case here OP and I am sorry of I have caused you any offence but you can't just remove part of your history I'm afraid. You can see your record under almost all circumstances (generally unless there is something in it that would compromise your mental health or the wellbeing/confidentiality of another person) by writing to your practice, they can ask for a fee for this though (a reasonable fee to cover time/photocopying etc)

grumpy - sorry but that's paternalistic bollocks: everyone should have the right to see and edit their own records. It's a basic human right, and doctors should be supporting their patients in this, not persecuting them by making permanent records of things they don't want discussed.

the fact that we don't have that right - as well as being wrong in itself - seriously endangers people's health as it leads to countless people not consulting doctors at all because they want to avoid having certain things written on their records for the rest of time - especially mental health records. Many many people live for years without seeking any help at all simply because they don't want that label permanently tied to them... as indeed it will be, for rest of their lives.

And in some cases, less commonly, but not uncommon, people's health is endangered becaue they end up avoiding doctors because of things that are already there - as in OP's case.

the system is fundamentally wrong.

It's my health. I have the right to endanger my health bungy jumping. I should have the right to endanger my health by throwing all my medical records away .. if i want to.

This is nteresting as I'm currently doing a masters in medical ethics and without wanting to hijack what is clearly a very emotive thread for the OP. Stubborn, yes it is paternalistic but some people (particularly those with mental health problems), do not have the capacity to decide whether their records should be thrown away or not. If you can't understand (and by you I don't mean you, I mean "one") the significance of your records then should you be allowed to decide that no Dr can ever see what medication you have been taking?

I could go on for hours but I hope you can see where I am coming from. I totally understand your argument and wish I had read it before submitting my last essay, just wondering how I would reference you though.

When dealing with a patient, shouldn't a doctor take a medical history anyway? In which case, aren't the important facts already covered? When a patient is treated at a walk in centre or at a&e that "emergency" or first response medicine may have to happen without full medical records. In fact we have a problem that the hospital continually loses my ds' medical records.....so how does that fit with the moral/ethical responsibility in respect of the significance of medical records?

I agree and I'm not saying I'm right by any stretch of the imagination, I just don't think there's a one size fits all answer. Take a girl who has a rare cervical cancer, look at her mum's medical record and find a drug she was prescribed during pregnancy makes the poor girl a "DES daughter". The cause of the cancer is found and maybe the treatment plan is altered. Just one example of how records may be useful.

I would imagine many patients tell untruths about their medical histories either deliberately or through forgetting details, I would rather not go through everything everytime I go for a smear etc I can't remember the dates anyway. Losing medical records is appalling and I would DEFINITELY complain about that. I just wanted to generate some debate so please don't flame me and OP again apologies for hijacking.

idiot doctors write all sorts of things on people's records that may be true, but just don't belong there.

I think you touch on the real reason doctors are so keen on records in your post above .. to protect themselves...

I totally get where OP is coming from. There is something on my medical records that is factually incorrect. An extremely serious allegation was made against me based on something recorded that I did not actually say. And then things were written about me that were factually incorrect. My new GP has admitted such.
But my mum and dh convinced me to let it go, saying they would never apologise and that I would only be blackmarked. So I did. And i regret that often. I think about it regularly , to this day.
If this kind of thing has never happened to you, you would struggle to understand how much it could affect you.
But OP, this IS affecting you too much. You have to find a way to put some practical steps in place, write a letter, do something,and then let it go. Because this is getting out of hand.

I see where you are coming from stubborn but if your whole career (house, life etc) was at stake if you didn't protect yourself by writing stuff down, what would you do? Just trying to see it from the Dr's point of view.

Okay, I think first thing to note is that ludlow is clear the distressing item is not untrue. This is where the GP's problem comes from in being asked to remove it.

Ludlow did not seek (but potentially did not avoid) medical treatment whilst pregnant. Subsequently her children are registered elsewhere.

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. However, interestingly (if you like that sort of thing) this isn't in the legislation before Parliament, implying (in my view) that it can be done now. At the opposite end of the spectrum to you, my DH is in and out of our surgery all the time and has a complicated medical condition. I'm pretty sure if we had moved a bit out of the catchment, as opposed to just inside it, DH's GP would have made a case for keeping him on the books because having to start again with a new GP in a new practice would have been very time consuming. My current guess is, if the partnership are happy to do it you can stay on their books already. It may not suit them but be persistent. FWIW it's worth I'm pursuing the question of why it's not in the legislation at the moment so I will re-post if I do find out. (I need to know for work).

That said, if you're not willing to use their services, there seems little point in staying with them as opposed to de-registering entirely. Fundamentally there's no point your record being held at a practice if you don't want anyone to look at it.

And that said, I still think your reaction is concerning and you would be wise to consider looking for help in your own time. You may not always be well, although I hope you are. Wouldn't it be better to face this issue whilst you are, instead of dealing with, say, a condition of old age at the same time?

Grumpy - exactly. the idea that these notes are permanently, irremovably, unchallengingly there for the patients benefit is fiction. They are there for the benefit of the State.
Drs are sworn to act in the interests of the patient. In this case (and 1000s of others) the patients best interest is CLEARLY to edit the notes.