De-registered patient and medical records

[Pseudonym99]

If I am no longer registered at a GP practice, where would my medical records be kept?

I just don't want one organisation passing information about me to another organisation without my consent - which they shouldn't be doing anyway

Dominthecat upthread you said paper records are stored for 21 years. What happens to records before then? Surely they arent destroyed?

Why do you mistrust the NHS so much?

That's funny... if paramedics turn up to attend me I really want them to be able to talk to my GP about my history. When I'm taken to hospital I really want the consultants to be able to ask the paramedics what happened. Especially if I'm unconscious by then. And after I'm discharged I'd like the GP to explain the consultant's letter about what happened. Then it might be helpful for the GP to explain to the physio why I need physio when they refer me for physio. That's ignoring all the hospital or practice nurses who might be sharing daily information about my care, with each other.

Kind of weird to think you're so special that none of these people should be allowed to talk to each other about you without your express (? written?) consent for each piece of information that they might like to share with each other. How are they supposed to get their job done knowing nothing about you each and every time they encounter you, except the specific bits you want to tell them yourself? Maybe they wouldn't even allowed to know that you're in the hospital at all and need any attention.. it's a secret, after all!

So, if someone could answer - if I am not registered with a GP, and I have an episode at A&E, then no discharge letter would be produced or sent anywhere?

A discharge letter will still be produced and stored electronically on the hospital system. Or at least would do where I work.

Oh and if you then subsequently registered with a GP in the area they would be able to view all your hospital letters.

I think that would be the case. If you needed treatment at A and E and follow up treatment afterwards how would that work without the GP knowing?

Nickname, you wouldn't get follow up treatment. You need a GP to get a clinic appointment, elective operation, district nurse follow up. It's a complete ballache for us when someone isn't registered. We often have to bring people back to the ward for blood tests/dressing changes etc and the hospital won't get paid for those as we can't bill primary care without a GP.

Yep. You can also exclude yourself from screening by not being registered with a GP.

However, not being registered will not eliminate the existing traces of your medical record, nor lead to you getting a new NHS number in future. To prevent your existing GP record being extracted for care.data 2.0 or any other purpose, make sure you have all relevant dissent codes applied to it before you de-register.

There is one circumstance I'm aware of where records can begin again without being linked. Gender reassignment legislation (and I'm no expert) requires organisations to create new unlinked records - so that the person can keep their gender surgery a secret and not experience discrimination. But I think that's the only reason for a new NHS number and record.

OP wants to make sure that her record is never shared, though (without consent) - so would need a new NHS number for every encounter.

So, if someone could answer - if I am not registered with a GP, and I have an episode at A&E, then no discharge letter would be produced or sent anywhere?

Discharge summaries are often sent electronically now. It is likely that this would go to your last known GP surgery. They would probably print it off and send it to be archived with the rest of your medical records.

There are a number of codes that can be added to your GP held medical record (electonic version). This would minimize the risk of data being shared but I cannot categorically say it wouldn't happen.

You cannot 'start with a clean slate' and a new medical record. You would need a completely new identity. If you tried to do this it would likely be deemed fraudulent.

The best way to avoid medical data being shared about you is to avoid NHS establishments. Use a private GP, private hosptials, don't go to A&E or walk-in centres.

Could you not get that piece of information 'sealed' so no-one else can see it, Fakename?

Maybe. But to do that I would have to register with a GP draw attention to this particular entry, get the GP and probably a couple of other people to look at it, go in explain why I want it 'sealed' and hope they agree to do so, which they may not. It would be just like going in and waving it around for everybody to see.

I would also like to access health screening, I'm nearly 50, but it just seems impossible. I'm a big fan of the NHS, I actually think we have one of the best health services in the world and I think data sharing is very useful, unfortunately it NHS is really difficult for me to access.

I know it's no solution OP but maybe deregistering is the only way forward for you. You just have to accept that it will have very serious consequences for you and if you get any major illness it will cut your life short.

I think in some ways for me not having access to a GP may well keep me in better health. I have to be really careful not to get ill. Almost all of my family (not my DH or children) , my blood family, have lifestyle related illness. They are almost all very obese and have type two diabetes, nobody does anything about it, it could be cured if they lost weight, they don't, they just take medication and are closely monitored. I know if I put on weight I would get diabetes and am really, really careful not to do so and it is so hard. I can't afford to get ill like them though.

There is one circumstance I'm aware of where records can begin again without being linked. Gender reassignment legislation (and I'm no expert) requires organisations to create new unlinked records - so that the person can keep their gender surgery a secret and not experience discrimination. But I think that's the only reason for a new NHS number and record.

You know I have actually considered, and dismissed, this as an option to access health care.

I am thinking of de registering, sick and tired of all the entry level harassment to go for over 40's health checks with idiot type questions etc. My plan is to see private GP as and when I need help or use an online doctor for simple stuff. I'm seldom ill and have not needed a GP appointment for over 5 years. I had sort of assumed I'd get my records to keep if I de registered. Can you get a set of copies under Freedom of Information Act? I could show this to private GP if he needed to see them although 60 years of visits for sore throats and eczema cream is not vital medical information.

Pseudonym, I do administration at a GPs surgery. If a discharge summary gets sent to us and the patient has deregistered I would end up sending it back to the hospital. To be honest your post has made me think a lot about how information is stored and who has access to it.

If you believe you are so special, important and somehow at risk from your data being shared, it would make sense for you to go private, OP. In the private market it is much easier to dictate what happens because you are paying directly.

Can you get a set of copies under Freedom of Information Act?

You can get a copy of your records under the Data Protection Act. You need to make your request in writing stating that you want a copy of everything, consultations, test results, correspondence etc. The surgery have 40 days to respond and can charge you up to £50.

Sorry, I also meant to say that you've clearly had a bad experience regarding confidentiality. This is unfortunate but it's not the norm and there are ways of addressing the incident that don't involve trying to wipe your entire medical history.

Yes, the same thing should happen with test results, intheknickersoftime. The sending organisation shouldn't be sending results about a patient who isn't registered at the practice but may not be aware of the de-registration at the time of sending.

ExConstance, yes see information here.

Also, anyone is entitled to see a GP. If you're homeless, if you're not a resident of the UK you are entitled to see a GP. You are registered as a temporary resident at the time of the appointment. I think it's important for the OP to know they can see a GP if they need to.

I don't think OP is unreasonable, some of us are very private and don't want anyone knowing about our medical history. I have never been in an NHS hospital ( and only a very straightforward birth in a private one) have no medical conditions at all and as an adult in the last 40 years cannot have visited my GP more than 10 times. I really don't want notes about me being anywhere tbh and there would be nothing for hospitals, consultants or paramedics to know about me anyway. When my sons were little I agreed for handwritten records to be kept for DS1 in a little red book, but refused all Health Visitor checks for DS2 as these were computerised. This is just the way I am, don't like the nanny state and will not co operate.

You are very fortunate to enjoy good health ExConstance. Not all of us are so lucky. Without the NHS and record sharing both DD and OH wouldn't be here today.

Another quetion.

What would happen if the very private posters suffered from something like diabetes, cancer, heart conditions/stroke? These health issues require ongoing monitoring. So how would you deal with that?