Obtaining medical records

[Jenny583]

I need to obtain medical records, but don't know where to start. Should I try the SAR for hospital records first, or the GP I am registered with?

I have no contact with any Dr's but need to ascertain whether I have graves blocking or central hypothyroidism, but my history goes back so long & the CAB adviser tells me that I can only ask for short spans of timeline in order to have any chance of any info.

My history as I recall is thyrotoxicosis which may have started in early teens, culminating in severe symptoms. However the notes were never as far as I know passed on from the GP in the UK where I was diagnosed. I have for 40 odd years experienced hypothyroidism following a lot of anti thyroid treatment. But for some reason I was never able to obtain any thyroid replacement therapy. I tried Tiromel, then Metavive, then both, as that was all I could get hold of, (via internet).

I have for the last few weeks managed to buy thyroid S from Thailand , & have ordered a test from England this AM. My temperature is low, can't sleep for the cold, & as I have no heating I am struggling to sleep. I have had worsening allergy type problems since changing to NDT. The Dr's did not take my hypo seriously as I was on what they regarded as a hypochondriacs snake oil supplement (metavive), but now I have proper NDT I have no Dr's, as they have dismissed me.

So I need to see where I was in regard to historical tests. If I write to current GP (who has some )notes, do I write to her or to reception? or should I delve into hospital records - & if so should I start with more recent (as hypo) or way back in the 1970's/1980's when I was thyrotoxic? I assume the consultants that I saw over past 40 years would be via hospital & therefore SAR? A friend I saw today does not believe that I was never able to obtain Levothyroxine in spite of very low T4, & confirmation from 2 GP's of hypo. But I now have low FT4 & very low TSH, since self medication.

I should add that I was deemed by a GP as severely hypo around 16-17 years ago. Maybe I should start with GP records from then?

Than you for any advice.

[helvella]

Technically, you direct any request to the Data Controller.

You can do the requests in parallel. (Obviously, if you know how records are managed and shared in your area(s), you might find you don't need multiple requests.) At present, hospital and GP records are usually (always?) separate. And if multiple establishments are involved, you might have to ask each separately.

Old records are not always easily found. For example, my NHS number now is very different to the one I had forty years ago. If that is the key to access your records, it would very much help if you have every scrap of identifying information.

[Jenny583 in reply to helvella]

Thanks helvella, I was afraid of that. Looks like I will just have to play it by ear, starting with current GP (inherited) records , I guess.

[tzracer]

I did a DSAR to my GP surgery, via letter (had googled what to write) but a week later the said they wanted it on their own form. My letter was a perfectly legal request (they argued it wasn't) they complied within the 30 days from the date of my letter anyway and luckily had my paper records going back to childhood. I can't remember the circumstances under which they can ask you for a payment, but I think it was capped and I wasn't charged. Good luck with your quest.

[helvella in reply to tzracer]

Absolutely - the request can be an email or letter (the Information Commissioner's Office site even suggests there are situations in which even a Twitter post could count. Wording is not prescribed (ha! ).

The ONLY issue the surgery might require is something more formal to prove your identity.

[Jenny583 in reply to helvella]

The surgery & hospital records are separate where I live. Specialists like Endo had difficulty getting hold of them too, which caused no end of problems. My Husband died as a result of those kind of cover ups. It's very triggering for me right now.

[Jenny583 in reply to helvella]

"Patients' notesIn Jersey, patients do not have an automatic right to see their handwritten medical notes. The General Medical Council, however, advises that patients have a right to information about any condition or disease from which they are suffering which should be given to them in a manner easy to follow and include information about diagnosis, prognosis, treatment options, common and/or serious side effects of treatment, likely timescale of treatments and costs if relevant.

Medical records held on a computer come under the Data Protection (Jersey) Law 2018 and patients do have the right to see what is held on computers about them, doctors would need to make a good case to the Data Protection Commissioner as to why the notes should not be seen by the patient.

Patients' notes are legally the property of the GP (in UK property of NHS). If a patient changes from one GP practice to another, in general, the practice will cooperate in passing on the patient's records or summaries of records. It is the duty of a doctor, if a patient does change practice, to hand over records or other information for use by the new doctor as soon as possible. Doctors may legally keep notes when a patient changes practice.

Confidentiality and the sharing of information

Patients have a right to expect that information about them will be held in confidence by their doctors. However, where patients have agreed to treatment, express consent is not usually needed before relevant personal information is shared to allow the treatment to be provided.

For example, express consent would not be needed before a doctor gives information so that a medical secretary can type a referral letter. Patients should be made aware that personal information about them will be shared within the health care team unless they complain, and of the reasons for this. The wishes of the patient who objects to their information being shared with others providing care, except where this would put others at risk of death or serious harm should be respected."

I am getting nowhere as usual, stonewalled by both CAB and SAR - again. How are we supposed to "expect that information about them will be held in confidence by their doctors" when we can't even access that information to begin with?! and how are we supposed to correct the lies and cover-ups when we have no proof ?

[Jenny583 in reply to tzracer]

Thanks! The island I live in has different rules. GP's are a business (no NHS) & records belong to them. I may not have any right to obtain records here, but I now have nothing to lose by delivering a letter asking for them, except I don't know how to prove that I requested GP's notes though.

[helvella in reply to Jenny583]

GP surgeries in the UK are also (mostly) businesses. Just many of us don't think of them like us.

The rules and laws surrounding personal information held on records have changed a lot over the past few decades. At one point, doctors tried to claim they owned them. Eventually, in England, the technical owner of NHS records became the secretary of state for health.

However, that ownership was primarily to preclude others having ownership.

Alongside that, rights to access records were enhanced across the EU. Those rights are still present in the UK.

Further, some countries which have not moved in line have been put under pressure to tighten up their rules. For example, denied some access and trade if they insist on retaining the worst excesses of data control.

[Jenny583 in reply to helvella]

I tried to reply with a copy & paste of the info on CAB regarding the (local) rules, but got a warning about anonymity & sharing info. Is it possible to go anonymous before I share that copy & paste? or I could DM you?

[helvella in reply to Jenny583]

You always get a warning if you post a link - it is only trying to draw your attention, not stop you from doing so!

Post or send a Private Message, as you wish!

[Jenny583 in reply to helvella]

Thanks I will!---

We were never in the EU. We pay to see GP here, also pay for referral letters, blood tests, hospital scans, to speak on phone etc.

I can no longer see a template letter so the below copy & pasted( from CAB )rules may have changed ...

Medical notes - doctor's

Legally, GP's notes are the property of the GP. In the UK they are the property of the NHS. Under the Data Protection (Jersey) Law 2018, you have the right to see information that is held about you and to ask for it to be corrected if it is not correct. This is called a Subject Access Request. You can make a request in writing directly to your GP. A template letter is available on page 7.28.0. If you have any issues with your request being accepted, you can contact the Office of the Information Commissioner on 716530 or e-mail [e-mail].

Health and Community Services records

Health and Community Services records are the property of the Health and Community Services Department. Please see 10.6.0.B.

[helvella in reply to Jenny583]

There is a template! Scroll down here:

cab.org.je/index.php?option...

[Jenny583 in reply to helvella]

Yes, There was a different template before that was specific to obtaining medical records. That's the one I wanted to use, but it's gone.That new template goes round in circles when you try to use it. For example there is no way of knowing what the "department" was called before, & in some cases what it is called now.

I tried with an SAR when Data protection & SARs came into force, my application was very similar to that new template, it was a total disaster. Also no one can find any way of correcting misinformation, if they do manage to obtain any. But we will see how I get on...

[Kazania]

Hello, have you got the NHS app? On mine, I’ve just checked, I can see my medical record going back to tonsillectomy in 1955. If not, you just download the app as you normally would, you then have to request your GP surgery to give you access to the medical record section. It’s very handy and allows you to see your blood test results, for example, without the annoyance of requesting them on paper each time. I am not sure what the situation is regarding a change of NHS number, one would hope the data from the two numbers has been combined! I hope this helps. All the very best. 😃

[Jenny583 in reply to Kazania]

Ha! You did well there. I would love to know what disease I had when my tonsils were finally removed age 4. My Mum had TB, I think I caught it from her.

But I was in a bad way when she finally found an old fashioned GP willing to refer me for adenoid & tonsillectomy as the Dr's here had gone from 1 extreme to the other, & tonsillectomies were no longer in fashion! I'm not from UK, so no NHS here in channel islands, sadly. I will ask CAB tomorrow if it's possible to get GP notes & how to apply (with proof) as well.

[Kazania]

Oh sorry you are not able to access the NHS. So I guess you would have to do it the hard way, I hope you can stay well enough to deal with the whole process. I can’t tell from the note on my app what state my tonsils were in, it is just the simple statement that they were removed, probably after all this time it might not be possible to see more detail even supposing it had been recorded at the time. I think, in my case, my tonsils must have been infected, I won’t explain as I don’t want to make you or anyone else reading this feel ill. Yes, I gather the removal isn’t done as often as it used to be; I have just read they are part of the immune system and that could be a very good reason not to remove them. I wish you success with obtaining your records. Take care and keep as well as possible.