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 also have something on my file I am not happy about fron yonks ago,but it is there.When I go to docs very seldon(practically never) do they go that far back in my file,plus I bet they have read worse,it is confidential and doc won't judge you so relax and try not to stress about it,it's over and done with,get on with your life and family and enjoy them.

Your medical history is your medical history. That's all it is - the past. You can't request things are removed unless they are untrue. If this fact is so limiting for you then you need to get help with it. You could seriously harm your health by not attending the GP. Isn't that thought scarier than your GP reading something ancient? It's very unlikely to shock them. General practice really is about seeing it all.

Getting rid of your past is not an option - cannot be done - so you HAVE to find a way to live with it.I think maybe you would find some pyscholgical support useful in helping you manage your feelings - so you should go and see a new GP. If you don't like the response then you can register elsewhere.

I spend a large part of my working day with my nose in other people's medical records. I know that whatever it is, is distressing for you, but please be reassured that we've seen it all before (with bells on) and probably don't even bat an eyelid at the information. We're not allowed to talk about sensitive issues beyond a need to know basis and we're certainly not allowed to disclose personal information outside of the work arena.

I don't know if that's of any help to you at all?

Just to add, when your records go to a new doctor they will need to be summarised. The only person likely to see your entire history is the person that summarises the record, who will be someone hidden in an office upstairs that you're unlikely to ever meet and the doctor will only delve into your paper records if s/he feels it's really necessary, other that the doc will see a summary on his/her screen which may not even contain the thing that you're upset about, depending on what that is, of course.

Thank you so much for replying, I started a new thread because I wasn't having any joy with this one.

I know doctors have seen it all before and wouldn't care, it doesn't help, I care about it. I have to admit I do worry a bit what would happen if I got cancer or something. I would almost certainly die I'm sure, and then what would happen to my medical records, who would see them then?

I just hope nothing like that doesn't happen at least until my children grow up and can do without me.

I can't be the only person ever to be in this situation. I am hoping somebody will come along telling me how to get around this. I have though of registering somewhere else with my name and date of birth spelt wrong and see if I can get away with that. My husbands records only go back 20 years or so because they were lost at some point back then.

Right now listen! Your children still need you even when they're grown up and you could inflict much needless suffering on yourself by refusing to see a doctor.
The issue here is not that you don't want people to see this on your records, it's that you aren't coping with the thing that's in the records.
This is not a normal reaction that you are having and nobody can tell you how to get round it.
I'm guessing you were hurt very badly weren't you? The ways things are now you are still being hurt because this thing is stopping you living your life properly. It's caused you to risk your life and that of your dcs by not getting complete maternity care. This thing is dangerous but you don't have to run away from it. There are people who will help you and you won't have to be afraid anymore.

An excellent post from NorthernLurker there, I couldn't have put it better myself. I wanted to give you an 'insider' perspective because we fear the things we don't know, the most. I thought that if you knew the process of what happens to your notes it would be less traumatic for you.

Best of luck.

I know that sounded quite dramatic but I have no reason to believe I have anything that will reduce my life expectancy. If I need to see a doctor I drive (100 miles round trip) to a walk in centre so I do have some medical care. Admittedly I don't go very often but it is one way.

"I'm guessing you were hurt very badly weren't you?"

Are you asking if I have been raped? If so, then that's not it, it's not anything like that. I have been raped in the past and it caused me a lot of pain for many years but not now. I'm fine with it now, I wouldn't want it to be common knowledge but it doesn't trouble me. This issue causes me a lot more pain and always has done, 1,000 times more.

Having said that, as I said earlier my life is fine, I am happy my mental health is good. If I could just bury this thing I could leave it behind and it wouldn't trouble me.

I will write to the current practise and try to stop them sending my records on anywhere. Anyone know how far my right to patent confidentiality stretches? Can I stop them sending my records to the health Authority?

Not sure about that LudlowStreet. I doubt that you can because it's unlikely that they'll make exceptions as they have to follow protocol.

If your records were sent back to the local authority then no-one would read them there. My best guess is that they are filed at the LA and when (if) you register with another practice then they will be pulled out and stuck in a box to go to the new practice along with all the records of other patients that have registered at that practice recently. They are sent by specific couriers in sealed boxes, by the way (or they are in my LA), so you don't have to worry about nosy postmen. Some records are sent electronically now too, by what's called GP2GP - you might want to find out exactly how that happens, but it will have stringent security procedures in place so they will not be able to be accessed by anyone whilst in transit.

But the health authority wld not read them at all, wld just be keeping them safe to send to new gp if current gp did send them.

Ime when people die there wld be v little reason to look at the nitty gritty of old health records as they wont need further medical care,

But the health authority wld not read them at all, wld just be keeping them safe to send to new gp if current gp did send them.

Ime when people die there wld be v little reason to look at the nitty gritty of old health records as they wont need further medical care,

I don't feel you're really listening to me. No you can't stop them sending your records on. When you aren't registered your records go back to the authority and are sent to a GP when you register again. Patient confidentiality does not mean nobody sees your records. It means only those who need to see it see it and they can't disclose that to anyone else unless they also need to know as part of your care. You have the right to see your record and have things that are not correct removed but you can't remove the whole record.
Hating something so much that you can't bear the thought of other people knowing about it is NOT a sign of good mental health. Trying to get round this - driving miles to go to a walk in centre and thinking you can control your reecords are not things people usually do. It's not ok to feel as you do. It indicates a deep trauma and you know that don't you?

I agree with Northerlurker, the extent you are going to in covering up something that was not your fault is a sign of a trauma.

here is some good information about records in general

www.nhsmedicalrecords.org.uk/medicalrecords.php

www.nhs.uk/chq/pages/1309.aspx?categoryid=68&subcategoryid=160

You could go to your GP and ask to see the records -- it is possible that the thing you are worried about isn't even there, if records have been lost, summarised / whatever over the years.

You could ask your GP to remove this information. If it is no longer medically imporant, and will improve your mental health if it were removed then perhaps she would do it.

Ok this means confronting it, but then you could change GP and start again...

BTW - I really sympathise. It is completely wrong and unjust that the state can keep records about you that you cannot necessarily see, and do not have the right to change. Every patient - unless incapable - should have the right to see/amend/dispose of their records, even if they are endengering their own health... so what?

It seems a little unhelpful of the practice to insist you de-register when in a year's time you will be able to register with them again (if they wish to accept you). Have you suggested this to them?

Given you don't wish any GP who treats you to have access to the information, sending the record back to the Health Authority is probably the better thing to do, but I have to agree with the others that your reaction to this information being on your record is worrying. Avoiding medical care during pregnancy is worrying. And if you ever need referring (and I certainly would suggest counselling) this will be difficult. You could certainly explain to a new GP that if his/her judgement is that the information is not clinically relevant to your current or future state of health it is not summarised into the new GP system.

I'm sorry you're suffering this stress, it sounds awful for you.

Thank you everyone and the links are really useful.

I have tried to get them removed and have been told that only the doctor who put them on can remove them (my current GP) she won't do this under advice from her union, although she has said they are not at all relevant. The notes are about seven years old now.

I think she is very happy to 'get rid' of me maybe she sees me as a difficult patient because they send me letters and I don't respond or go to appointments. They have a few branches and I did attend another branch for a while, years ago, always seeing a locum so they didn't know me and hadn't read my records, this worked for a while but them they wouldn't let me do that any more because I have asthma and they wanted to see me more often. Luckily (!) DH has asthma so I just use his medication now.

You cannot be properly treated by somebody who does not have your history. You cannot carry on like this - you have a serious medical condition and you aren't able to manage it. YOu have to try and get past this as you risk hurting yourself and your family.

I have to agree - treating yourself with your DH's medication is simply not right - for you, for him, or for his GP. Thinking laterally, could you afford to see a private GP, even for a one-off consult for the asthma?

Frankly you are a difficult patient, I accept that you have your reasons of course. Your response to this data entry is not, on the face of it, rational. Will you consider having your records archived with the Health Authority (there is virtually no reason for anyone there to examine the contents, very occasionally they do if two records have become confused but there is no reason to suppose that has happened) whilst you seek private medical support? I do hope you can find a way past this.

OP - I sympathise a lot. It's also very hard because to take any action you are forced to discuss the very thing you don't want to discuss.

Here's some ideas

• go back and talk to your current GP again and ask her again to edit your notes, after that she's never going to see you again. Without doing that this 'difficult patient' is going to be registered with her forever, as I don't see you re-regristering. Do you have a RL friend who already knows your history who can go with you the GP to make this request?

• you could try a solicitor. It might be possible for a solicitor to help you without actually knowing the details of your secret (and no doctor could reveal it)

• meanwhile rather than driving 100 miles to a walk-in centre - can you find a private GP to go to? They charge you money but I reckon it will be about the same as 100miles worth of petrol .. and much quicker. Also you can then get some continuity. ALTHOUGH private prescriptions are expensive :-(

• OK a wilder idea. Moving house as you are doing is a great opportunity as you have a good reason to register with a new GP. When you fill in the forms don't supply the details of your old GP, give the details of some other random GP in same area. Your new practice won't be able to locate your records. IT will probably take months before they realise and ask you. You can play dumb 'idiots have lost my records. Well I was only with them for 6 months. here's the GP before that' etc. A busy GP practice isn't going to spend too much time on this. Meanwhile you are building up new records. If you can register in a different name (maiden name / married name / middle name/ first name) that will help.

Other people will tell you that these ideas are completely ridiculous, that you have to lay yourself and all your history open to every random doctor.. I don't agree. YOu should have the RIGHT to edit your records. The state denies us that right.. so some subterfuge is excusable

Stubborn - what you are suggesting is dangerous. Our medical history includes vital clues for future diagnosis and treatment. Our medical records should include everything that is true. The op is objecting not on the grounds that the entry is incorrect but because it describes something she doesn't want known. Suggesting she effectively create a false identity is downright moronic and indeed unhelpful to her. Her reaction is not a normal, healthy one and running away from that issue, involving yourself in a complex web of 'subterfuge' is a recipe for disaster imo.

"When you fill in the forms don't supply the details of your old GP, give the details of some other random GP in same area" Does anyone work at a surgery and know what happens with a mystery patient? What do illegal immigrants do?

I have thought about that and I think it may be the best/only way to go. I have also thought about going to court to try to get this item removed.

"Our medical history includes vital clues for future diagnosis and treatment."

I have been told the item is not relevant to my future health, the only reason it's there is because it can't be removed. The fact that it is there could be said to be detrimental to my health both in the stress it causes and the fact it stops my going to the doctor. When I have seen a doctor/midwife etc I just make up some reason why I haven't gone to the GP. I have over the years developed coping strategies for this and some ways round it although I know it's not ideal. If I could only have this thing removed I really feel all my problems would be solved, I could be a normal patient and a normal person.

I exhausted after getting that letter yesterday I spent the whole day with tears running down my face, I feel much reassured that if my records go to the health authority they won't be read.

northernlurker I imagine OP is a grown up and can make her own decisions on risk. I imagine she is not trying to hide an allergy to pencillin or something similarly life threatening.

Most notes are full of red herrings, errors, miscellaneous mistakes and bad diagnoses and a good doctor pays only slight attention to them.
Losing her notes is likely to be minimal risk... and will relive an enormous pressure.

I say go for it.
And if you are allergic to penicillin or similar tell your NEW GP and get that on your NEW notes.

Good luck ...

No that's nonsense stubbornhubby - most notes are not full of mistakes and they have incalcuable value when seen over your lietime.

OP - lying about your name etc will not work because eventually they will need to track down your NHS number - which is unique to you.

I urge you to deal with the issue that is causing you distress NOT the fact that it's in your notes.