De-registered patient and medical records

[Pseudonym99]

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

But (and I have already made this point on the thread) what do you mean by sharing?

Shared, like a prescription which you take to the pharmacy?

Shared, like a referral letter which goes to the hospital?

Shared, like a test result which goes from the lab to the practice?

It's true the only way to opt out of this 'sharing' is not to use the health service, because the examples I've given are of direct clinical communications performed to support your care.

You are quite frankly ridiculous and I really need to bow out although you are also semi amusing

Yes I think everyone is getting bored now.

At school we were always told (by the teacher) to make up a name at the sexual health clinic if we wanted contraception/ an abortion and didn't want them to know our name. Wonder if that's possible now?

But why would my GP be informed of my attendance at a walk in centre if I didn't want that information shared? How would they know I'm giving a false name?

I believe the NHS is gracious enough to allow you to use a sexual health clinic anonymously. Shame about the rest of the service.

Although I suppose I could go to a walk in centre and use a name pulled out of the phone book. Or the name of someone whose date of birth I know?

What OP is proposing is deception which puts people attempting to care for her and others at risk.

I didn't see the OP suggest deception until a load of snide posters piled in and refused to actually address the patient autonomy.

• aspect

I have experience of working on a ward where someone registered falsely to obtain treatment then self discharged before their records could be linked.

Equally you could register at a Gp surgery as a temporary resident under a false name for emergency treatment.

However neither of these allow for any planned or ongoing treatment, which ultimately may be the detriment to your health (depending on what health problems you develop).

You can request your Gp surgery does not share any details and so on for any other treatment you receive (though each separate department/surgery would be able to see their own notes from previous appts).

Their are plenty of people who live "off grid" to avoid similar concerns, but only you can make the decision about pros and cons of this.

I think ultimately the difficulty is that based on what you've written here you sound slightly paranoid and that will raise alarm bells for a lot of hcp that you have mental health issues and this may impact on their treatment. Therefore you will need to have a concise and clear rationale for not sharing info to your Gp without raising these concerns.

Good luck

They may need to know for continuity of care reasons. For example if you attend with a uti and they treat with a first line abx and a urine sample shows later that the abx will not treat the infection effectively and you need to attend your GP for a second abx prescription.

Without sharing the information your health could be impacted.

You can't use a false name at the walk in clinic. I went to one a few months back and they wanted my name, DOB and GP. I got the name of the GP surgery a bit wrong so they had to search, but they confirmed they had my demographics by asking me to confirm the first line of my address.

When I went to the GP after with a recurrence they asked me if the antibiotics the walk in clinic had prescribed had helped so they had been informed. That helped the continuity of care.

Exactly, Klaphat, if the NHS respected patient autonomy, then people wouldn't attempt to find work-arounds which could be misinterpreted as fraud or deception

Part of the issue is they need to know you're entitled to nhs treatment, otherwise anyone could visit for free healthcare

Klaphat the op suggests upthread that they could try and register at a gps and say they are new to the NHS this is deception to most people.

Probably not the right word but this appears to be fraudulent in nature.

What is it that you want the NHS to do?

In the case of the walk-in centre, is that you want to be able to dissent to share the episode information with your GP? I think you probably can express dissent to that, why not ask your CCG's Caldicott Guardian to confirm?

What else do you want to happen? I have given you examples of direct clinical communications, which I assume you do not object to. Can you give some examples that you do object to?

What I want is for the opt-out culture to be reversed into a consent culture, and for no information to be shared without consent. They ask, I decide whether to say yes or no, rather than sharing being automatic

Oh, and I don't want my data being used for research without my consent either. I think that's what care.data's stumbling block was. They wouldn't have wasted millions on that, and we'd have loads of useful data by now if they'd done it properly

Part of the issue is they need to know you're entitled to nhs treatment, otherwise anyone could visit for free healthcare

AFAIK hospital doctors in the UK at least are not particularly concerned with this issue. There is a conflict of duty if it risks preventing people from seeking the care they need. Perhaps this situation has changed and the finance department is more likely to be on their backs now though.

Incidentally I have had treatment on three separate occasions at three separate HCPs in Denmark on a Dane's health card since it was easier for them to do it that way, as I was a visitor/didn't have my own health card. So it is also not necessarily a concern of HCPs elsewhere either. Then again, this was for acute treatment, not for something that would need tracking particularly.

Of course they're going to send an ill person away because they cannot confirm your identity

What I want is for the opt-out culture to be reversed into a consent culture, and for no information to be shared without consent.

So the Caldicott 3 Review has made some recommendations but has concluded that the best balance between meeting these expectations and providing a choice to those who have concerns is achieved by providing an opt-out model. You should expect, therefore, to have to express your dissent (but you should expect that dissent to be respected unless there is a compelling reason not to, that reason should be explained to you).

You can dissent from medical research using the codes listed here, although I think there may be others as well, your practice will be able to advise.

Establishing entitlement to treatment is the responsibility of a hospital's Overseas Visitor Manager, rather than clinicians. (Although clinical staff may be obliged to ask questions to help the OVM establish this).

Information can only be used for the purpose for which you've given it (usually 'for my healthcare') but if you specify you don't want info passed to any other part of the NHS, then they don't. You had the chance to opt out of shared records a few years ago because the DPA required it, as a change in how the records were used - otherwise it would have been deemed part of the function of the NHS.

The alternative would be to go private if you really care, but private doctors may refuse to prescribe or treat if they think that vital info is being hidden that would make a difference.

OP, can I ask why you don't want your data being used for medical research? Research saves lives. I work closely with researchers and if it helps you feel secure, would like to reassure you that they are not allowed access willy-nilly. They have to go through a number of permissions processes, which include an assessment of the privacy risks of the patients included in the data. They are given access to anonymised data, unless it is a consented study (and even then the data will be transmitted without identifiers). They aren't interested in the individuals, only in the trends - the big picture.

Klaphat - I don't mean drs in hospitals. As I said previously getting emergency treatment wouldn't be difficult it's getting planned routine treatment that's funded by ccgs that would be tricky without an NHS number.

I believe you could always get emergency treatment without an NHS number and with false contact details.