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 can spell

question

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

Well ultimately you have to make a choice about whether to be treated and accept there will be records held about you or decline treatment and have no records.

For the love of god please dont tell me gender reassignment patients have their old records erased - that surely can't be true?

I mean why would a GP need to know that Mrs Williams actually has a prostate gland not a cervix. What possible clinical use could that be? Oh wait....

The GMC on transgender patients.

If I became unwell I'd go to see a private GP and then weight up the pros and cons of being registered and getting back to the NHS system. Obviously the risk of having something serious and not getting treatment would be a reason to opt back in. At the moment I'm well and find constant harassment to provide information about how much I drink, what I eat etc. very intrusive.

I can see both sides of this.

I am concerned about data sharing between all large organisations, not just the NHS. Different example but we met up with some old friends this Christmas (all of us in our 50s so not hugely techie) and the following day he came up on my "people you may know on FB" despite having no obvious connections and none of us having made any posts about meeting. That scares me and the OP is, in my opinion, right to be concerned about use of data, if a little extreme in her approach.

I'm not sure that no NHS records is reasonable though. I work for the NHS and know how difficult it can be to treat and prescribe for patients without proper history and information. At best, it is time consuming and frustrating but, at worst, life threatening.

i agree with OP, we as a society have lost sight of our privacy so capitalism can make money - NHS data will be anonymised and sold at a profit. No one at all should be able to collect or store data about you unless you give consent. There are very few valid reasons for wanting to collect and store data about people, most of the time its used for purposes which are detrimental to you. its about time the law was changed on this subject but politicians will always be in the back pockets of business and will never say no to someone who wants to make money.

IvorHughJarrs the reason the person showed up on your feed is because they have come looking for you on FB or are a friend of a friend - facebook will also use things like phone records to track people e.g. you use facebook on your iPhone in a location and they will keep that data but they may also use data of other people in the same location and suggest you may be friends...

peggy I suspected that but this was a meeting of 6 middle aged people (3 couples) and the "People you may know" was for me and friend's husband. Neither of us really use FB so didn't look at it while there, have not searched each other or posted about meeting up, no friends in common on there as have checked since link showed up and no FB posts or tags from others who were there (the other 4 don't even have FB accounts and never have had!) It just highlighted to me how endemic this is.
It can only be the geographical/location tracking which must have come from other tech giants (Don't know if it makes a difference but his phone is all Apple and mine is all Android/Google)

the best way to be invisible is not to use a mobile phone, don't use your bank card to pay for things - take cash out the bank and then always use cash, don't drive anywhere. in the future this may affect you though...

If you have to visit A&E and you don't want this info to go to your GP and be put on your records, you can request this. I know of someone personally who did this as it was due to a substance abuse issue.
They were warned that the notes would stay on the hospital records and that they didn't like doing it as it could be unsafe.

a very real problem caused by simply having medical records is when going for certain jobs.
Previous mental health/addiction issues can affect ability to work in some fields. When a future employer asks for access to medical records if you refuse they will not take your application further. If you agree, past problems will most probably affect your chances of getting the job.
Not sure how to get round this.

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?

I have no GP and have asthma. I need to take a preventable inhaler every day. I buy drugs on the internet, this is an absolute godsend for me and I suspect without it I would have to have frequent A&E visits.

For the love of god please dont tell me gender reassignment patients have their old records erased - that surely can't be true?

Seems so. Meanwhile I have one entry on my medical records that is completely irrelevant to my current or future health or treatment (unlike GR) and this can NEVER be removed.

No I don't think their medical records are erased - they're given a new NHS number in some cases but the past records are still linked to the present.

fakename just out of interest though, why does having that one thing on your notes affect all of your other care? You could be having gold standard asthma care, for free, much better than you can manage yourself. What makes you think the nurse or doctor doing your asthma review would even notice care about this thing?

We don't accept anyone without photo Id and proof of address

Bad news for anyone who doesn't drive, doesn't have a passport and only has online bills!

We don't accept anyone without photo Id and proof of address
You cannot insist on photo ID because many people don't have it, but everyone should be able to prove their name and address. You have to prove your ID to open a bank account so there's no reason why you shouldn't have to to register with a GP.

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

This is already the case. Unless it is needed to be shared to save your life or for some other good reason. You do not understand the law.

Anwyay I am the opposite to you. I find it really annoying to have to give the same information and prove the same things over and over again and would love there to be more data sharing and for us to have ID cards. So for example, if I have a driving licence, the passport office can use those details rather than me having to provide them all over again. So if my GP shares information about me with my local hospital so that I can get care, that is good. I do not want to have repeat a story over and over again.

Basically, by going to a GP you give your consent to them sharing your medical data with other professionals (eg for a smear test). But they will not send off your whole medical history, they'll just share your name, address, DOB and NHS number. The person doing the smear test does not need to know if you have an appendix or not.

I really don't know what you think is going to be done with your medical information. You've not said.

You have to prove your ID to open a bank account so there's no reason why you shouldn't have to to register with a GP

Yes and if you don't have photo ID or paper bills it is close on impossible. That said, if you are over 18 and on the electoral roll that sorts out the address issue and I suppose (although I don't know) that they accept a birth certificate. But I don't know if a GP has access to the electoral roll or what happens if you are not entitled to vote in the UK (you could easily be lawfully resident here but not entitled to vote).

On a different point, someone said above that a GP does not deregister people unless you ask them to or they are told to. I don't know if that is correct, as I was deregistered from a practice many years ago when I moved house. I didn't reregister immediately in my new home but was close enough to the old practice to go back to it but when I called for an appointment they told me disinterestedly that I was no longer registered with them. Nobody had told me. I don't know how they knew I'd moved house but it was probably when I went to the local hospital with my son and gave the new address.

why does having that one thing on your notes affect all of your other care?

It doesn't, it's irrelevant to any other treatment I may receive. I just don't want anybody to know about it, I wish it could be erased, it can't. I have been told that because it causes me so much distress, medical professionals need to know about it so it has to stay even though it's of no clinical relevance. I don't think this is actually true though if tested in court, for a start it makes no sense and removing this item would solve all my problems accessing medical care.

You have to prove your ID to open a bank account, so there's no reason you shouldn't have to register with a GP

The reason you need ID to open a bank account is to prevent money laundering. You don't go to a GP to launder money, so your argument doesn't make sense.

But to continue your own analogy from earlier in the thread, Pseudonym, as you wouldn't launder money your bank should trust you.

However, as patient registration fraud is also a thing, NHS England recommends, but does not require identity proofing.

You don't go to a GP to launder money, so your argument doesn't make sense

Plenty of people DO try and defraud the NHS by obtaining medication and services they are not entitled to.

Well, I'm not attempting to defraud the NHS, I'm just trying to prevent them from breaching my confidentiality, privacy and trust (well, too late for the trust)