LUPUS UK
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Access to medical records

Following this week's debacle, I thought it would be handy to share people's experiences with this. My rheumy department today told me that they could not send me test results either by post or electronically owing to "data protection". I could only access them in a face-to-face appointment with my consultant.

My GP was somewhat taken aback to hear this and explained his understanding. Which was that the clinician ordering a test is responsible for making arrangements so that the patient is able to exercise her rights of access to any medical records, and that there should be a clear procedure to facilitate this. However, there is no single process that must be followed by all clinicians, and in practice, many services are somewhat lacking. The MDU advice for doctors is here themdu.com/guidance-and-adv...

It appears that for now, I must be content with awaiting a phone call from my rheumy who may (or may not) ring me to discuss my latest MRI and biopsy results.

Meanwhile, I have, by other means, managed to obtain my recent blood results (my ANA has gone up to 1: 2560 and CK to 2100 and I'm now "weakly positive" for ds-DNA - so that's about as good as I could have hoped for in the circumstances)

It would be good if others could add information about how to access test results etc... x

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Hi Mike. Thanks for the update. Wow your test results so far are high. No wonder why you have felt so horribly ill!

I don’t have any suggestions about accessing ones results. But my guess is you’re going to get a call from your rheum soon as you had one from him recently I believe - so this is something he does if the situation warrants it - which it clearly does in your case.

My own experiences have all been Scottish so probably differ to yours as the NHS here is a differently unwieldy organisation. When I was on my island home my GP tried to access my lumbar puncture and mri results prior to seeing me. He did get some of them via the portal - but not all were back. He told me that he couldn’t comprehend most of it but that I had matched oligloclonal bands - which signified that a systemic process was occurring. But this was non specific -although it did seem to point to an inflammatory small fibre neuropathy he felt.

So it might be an issue of interpreting the significance of this information that most GPs struggle with?

Then when I was a patient in another GP practice a few years on I asked a locum for the number and pattern of my newly positive ANA and other hospital blood results . She looked it up with ease and showed me that it was 1:320 with a nucleolar pattern. She wasn’t sure but felt this signified Scleroderma and that the number was less significant with this pattern. BUT she reminded me that Rheumatology is too complex for a “mere locum GP like me to give you meaningful answers”.

Since then, in my new practice, I have never felt that my hospital takes a jot of notice of my GPs or of me come to that. For example I still haven’t had a letter of response from the neurologist and haven’t a clue who will interpret the MRI results of my brain and neck I’m getting done tomorrow. I haven’t even tried to access hospital results from them to be honest.

The hospital are so flaky they even changed my address and GP practice back to a temporary one two years ago - not once but twice - and then told me it was my present GP practice’s fault?! The practice secretary got so furious about this happening that, once I’d accessed the technical team with her help to correct this cock up , she simply sent me print outs of everything on my records for six months - from blood test results to letters of referral. It was quite an insight!

Having moved around a lot over the past 3 years I can say that each practice seems to have completely different policies and approaches to patient records. Now I’m living permanently JUST (a bridge away) within a health board that is different to the one my hospital is under - so it’s nigh on impossible to get any sense out of anyone. I do always ask for print outs of my monitoring blood results though and they are okay about this - or else my GP just tells me the relevant ones. X

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Yes, the variation in practice is ridiculous. If a GP cannot interpret a result, that's their problem - they shouldn't use that as an excuse to withhold it from me. Likewise, for a consultant to withhold a result because they think I cannot be trusted with it alone is paternalism gone mad. I can see no justification at all for not automatically providing a copy of all test results direct to the patient. Hanging onto it should be an exception not the rule. x

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I couldn’t agree more with all you say about this Mike. X

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PS a friend recently posted on NRAS HU for a vent about some bad news. She described the French system where people get given all records, letters and imaging - which they are expected to carry around to consultations with them. She says this weighs a ton for someone like her with progressive RA and she is having to find ways of transporting hers that don’t do her further damage.

A very bizarre contrast to what we are fuming about here! X

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I am glad you have some results and even thought positive can actually be a bit of a relief. I wonder if you will be Myositis with overlap as happens. Whatever I am glad things are moving on for you and fingers crossed you will get good treatment foR here in. Well done for getting this far under Awful circumstances, LOU X

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Thanks, Lou. As you may have noticed by now, I'll be sure to keep everyone informed about the latest outrage! x

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Thanks for sharing such good info Whisperit about accessing medical records. Good luck for when your Rheumy rings to explain test results. They certainly do need to keep an eye on you as your suddenly weakly anti dsdna positive!. Your really getting somewhere now!. That's more than I've achieved!. Harry sends his love. All the best. X

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Thanks misty. I cannot tell you how much better I feel having got the blood results in my hand - even if they aren't the best. Being denied information about your own illness is completely undermining - and wrong. Still no sign of Hedgewig though x

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I do agree with you Whisperit although sometimes it wouldn't be a good idea to see everything on our notes!. Depends what's been written!. It's different with blood results, they're very important so I'm pleased you've had this breakthru!. Shame no hedgewig, hope he suddenly appears. Fingers crossed for that call. X

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I'm feeling frustrated on your behalf. We're the ones who are ill. Surely test results are about us and therefore we're entitled to access them ....,

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Exactly. I'm afraid we are still trying to overcome the old paternalistic assumptions that somehow out illnesses belong to our doctors. I would like to see a situation where we hold our own notes and allow the doctors to see them when we want them to - not the other way round! x

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In both my pregnancies this was the case! Carry all your notes around with you, even though you are expected to have your pretty little head knotted by hormones.

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I can't say that getting results, records or answers are easier over here, but I congratulate you on your persistence and fortitude in obtaining some results. I hope you soon hear that they will lead to improved care and results. We all can appreciate the Catch-22 of positive results😑. Sending you all good wishes across the pond .

D🏃🏽‍♀️

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Hello

You don’t say who you spoke with in your Rheumy department but what a load of rubbish. You are entitle to see and have copies of everything..

Co incidentally I have just requested ALL of my medical records from the hospital since I was 18 and I’m now 44.

So a huge bundle arrived in the post yesterday. I did have to pay £50 which I think is acceptable given the admin time invoked in an already stretched NHS service.

I went to their Subject Access department.

As far as the GP is concerned mine has a specific blood results line which I call 3 days after bloods are taken tbh.. it’s mainly to check my white count

I rely on the hospital for the other blood tests as the GP wouldn’t actually know what to do with me if they were off normality..

In fact I’ve come to learn that other than for general problems and antibiotics I wouldn’t even bother with the GP and they haven’t a clue how to treat me.

Hope this helps.

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Thanks, Sarah74, Yes, that may be the route I and others will have to take. As you say, our GPs are often reluctant to prescribe without written instruction from our consultants, but if we have test results to hand, that may sometimes reassure them x

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my dr's are all happy to show me my results on a computer if I remember to ask but as I always get brain fog when I visit hospital or GP I don't always remember to ask or remember what I've seen. I wish could get it printed out but I've never remembered to ask. and as I get no written details from any of them I have nothing for benefit assessments. I know I need to get this sorted as benefits assessments can happen at any time and I need to be prepared it's just remembering to ask. and knowing what I need to ask. I see letters on here all the time of things people say they have readings of and that numbers have gone up or down. I don't even know what tests each doctor has done. if I don't ask they either don't tell me or dazzle me with stuff I have no idea about they might as well be speaking Chinese. I wish lupus didn't fog my brain so much.

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That's one the problems, isn't it? Without records of our own, we are disabled other aspects of our life. And it's hard enough to keep on top of the day-o-day stuff when we are struggling with the disease itself x

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When I went through my last long foggy stage I asked for hard copy print outs of my pathology - and some letters - go home with - so I could slowly assimilate what I've been given. Anything I don't understand - and any unanswered questions - leas me to actually slip a printed and dated letter to my GP. I kept another copy of the letter with me for the next appointment.

A clunky process - but if you clearly expain why you're doing it - then they can't accuse you of being 'deranged'

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Hi,

I have copies of all my records. Every appointment I have with my rheumy she reports it back to my GP which also includes any blood/test results. I asked to be copied in and I receive them all through the post. She did say to me it used to be an automatic system with them but so many people would call and question everything they got overwhelmed so now do it on request.

My surgery also have a app that I log into where I get to see all my medical records anytime I want too.

I've never heard of having any problems geting access, they're your records and you have every right to see them.

Hope this helps xxxxx

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Sounds good. Wish everywhere else was as organised and patient-oriented as your surgery x

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I agree, it should be, It makes me angry that it has to be fought for by any one. I see I am lucky with my rheumy and GP but it saddens me that depending on where you are depends on the level of care and support received.

I hope things get easier to access for you xx

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Oooo that is very important blood info! Glad you have that much. (And not glad at same time.) Utterly frustrating about the rest.

At my last Dermatology I was to discuss my biopsy results. He gave me a few sentences and said that he wasn't really able to discuss them because he didn't fully understand them(!). He'd have to speak to the pathologist first, who had cancelled their meeting the day before, which would mean not until my nx appt months away. "Can I have a copy of those results?" "No. I need to get the pathologist's input first." I was taken aback and looked a bit sideways. He said he would show me on the screen, which he did by reading them really fast before quickly clicking the screen off.

Similar activity. Guarded and weird.

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Exactly. I am baffled at how mistrustful many health care professionals are of their patients. I worked for a long time in a children's rights organisation, and it was so useful when I later became a therapist - I always made sure to share everything with my clients. Getting better, or coping with illness, is a shared enterprise. Professionals should have the attitude that they are privileged to be allowed to share another person's life in such an intimate way. There's something wrong if they feel worried about sharing their work with their patient.

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Too right!

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It does seem to depend on the hospital. My current one doesn't even copy me in on letters any more, whereas when i was seeing the UCL for a suspected auto inflammatory disorder their letters had copies of all blood results attached on a chart so I could compare them for any slight changes etc. Unfortunately I don't see them any more!

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*Tsk* It's crazy x

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Hi there,

In Brazil public healthcare is a million years behind the NHS, but regarding that particular aspect it is really interesting . We have access to all sorts of results, in paper and online. All tests and scans have to be previously seen by specialist doctors who are supposed to write down a signed report with medical interpretation of the data. At the end of each report there’s a warning ⚠️ saying that only your doctor can correctly interpret your results along with other clinical data. Patients are supposed to take the results with them to all doctor appointments although many are online now and can be accessed by the doctors who have ordered the test/scan or by others upon request.

The confidential thing doesn’t seem to be a real problem in the virtual world. Hackers can access whatever they want, anyway.

My last CT scans (whole body) are online and the software allows me to have a 360 view and zoom everywhere . It’s awesome 😎.

Brazil is a mess politically speaking but technology is really necessary given the size of the country.

Hope you can manage to get access to your medical records and good luck with your appointment!

Chinchi 💕🍀

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That's really interesting, and seems very sensible. I'd love to be able to do that! x

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Hi Whisperit,

I live in Canada and we have an online database that holds all our records. It costs money but not much. Hospital - as someone mentioned sounds like a good idea. I agree that the not-knowing is hardest. I’d try to find a way around it. I hope it gets sorted out soon.

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Yep, I'm going to be making a big point of this when I next speak to my rheumy and see if I cant get something sorted out. Money-wise, I can't think of anything that should take precedence over health x

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Agreed - re money. And good - harder in our position to push through frustrations - because we often have less energy - but will be better in the long run. Let us know what happens w/Rheumy.

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For reasons I'm too tired to go into right now, I requested copies of my hospital records about 18 months ago. I had to request them formally through the hospital's medico-legal department, send proof of identity and pay a fee (£30 I think). Details should be on your hospital trust's website. I was given printouts of test results and reports, plus a disc with scanned copies of handwritten notes, letters and forms, surgery discharge notes and the like; and a radiology disc containing x-ray images and other scans. It took a couple of weeks but by law they have to provide it within 40 days. Much of the doctors' handwritten notes were illegible, of course.

There was a letter in there, a letter I never received (because it was never sent) that contained some information that would have been really useful to me at the time. I didn't see it until nearly a year later. Again, too tired to go into it now - maybe later - but this made me really angry. Partly for this reason, I recently repeated the same process of getting copies of everything and probably will every year. Because the hospital has lost my trust.

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How disheartening. I think the culture of considering our notes as belonging to the doctor, or the hospital, is almost guaranteed to generate a feeling of mistrust. Your point about the "missing" letter raises an important point too. By coincidence, today I was sorting some copies of consultant letters from a few months ago. One recommends CK levels are retested in 2-3 months. But it is written in the passive voice and it isn't clear who is going to make this happen - is the consultant going to arrange it? Or does the GP have to? Or me? In the end, it only happened because I took responsibility - and the result showed my levels had gone from 300 to 1800. Quite concerning! x

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You are so right. There's a Philip Hammond book I read several years ago, I think it's called Staying Alive, about how to get the most out of the NHS. It might sound too trivial a subject matter, but it makes a good case for being a persistent (annoying) patient and chasing up this stuff yourself - just as you did, to your credit and your benefit. So it's useful to know that a doctor is supportive of patients self-advocating too.

My first rheumatologist decided on my first appointment that she wasn't going to find anything wrong with me, rheumatology-wise, because my blood tests were normal. My next appointment was with a different doctor (due to a clerical error), who was more open-minded and said normal blood tests don't necessarily rule anything out, and also suspected a vitamin D deficiency that the other doctor hadn't. However, I wasn't his patient so perhaps that's why this happened:

He sent me for a vitamin D test and I heard nothing. Two months later I went back to my original rheumatologist for follow-up. She told me my vitamin D level was 10 (severe deficiency) and she was sure that was the cause of all my symptoms. I didn't think that made sense for a lot of my symptoms (it didn't). Any attempts to query it or elicit an explanation were shut down (quite rudely) and she told me if I took the vitamin D for 8 weeks she was sure I would feel much better.

So I went away firstly annoyed at the rheumatologist's attitude, and also annoyed that nobody had contacted me about the vitamin D in those two months. I mean, I had been in the abyss as well as in a lot of pain and discomfort and was struggling to keep my job. It was hell. If my symptoms really were all attributable to a vitamin D deficiency (and I couldn't see how they possibly could be), then I could be two months into treatment by now and well on the way to recovery. So I contacted the hospital and politely queried this, as I was sure they should have let me know sooner.

I was contacted by the other rheumatologist (the one who had ordered the test), who apologised for not including it in my GP letter. I told him I had not received any letter. At this point he realised it had all gone a bit wrong and that I should have received a copy of the usual letter to my GP. Anyway, he told me he would send the letter and mention our conversation in it too. The letter never came.

Two months later I returned to my original rheumatologist for a follow-up. I told her that yes the vitamin D had taken improved my fatigue but I still had the other joint symptoms, swelling, paraesthesia and stiffness etc (no surprise, since they were not symptoms of a vitamin D deficiency). She discharged me from rheumatology anyway, told me my pain was not inflammatory (without examining me) and that I didn't need a rheumatologist. She had obviously made up her mind that this would be the outcome of the appointment before I'd even walked in the door.

Anyway, fast forward several months and finally I have a bone scan that proves my suspicions were right and she was wrong - I have some kind of inflammatory arthritis - and I'm back under her care and taking hydroxychloroquine. But obviously I don't have a lot of faith in this consultant at this point.

So after several months, feeling much better on hydroxychloroquine and wondering about psoriatic arthritis (which would explain the normal blood tests) and lupus (there's a lot of lupus in my family) I requested copies of my medical records. In there was the letter from the other consultant, the one that was never sent. In it he mentions that I had some nail pitting, which he said could be indicative of psoriasis and a cause for my joint symptoms. He had not mentioned this to me at the appointment but had obviously observed it. I had no idea. I knew I had some pits in my nails but I didn't even know that was abnormal. Why would I.

So, this is why I am angry. Because even though I never got that letter, my rheumatologist would have seen it and yet she chose to ignore it and pursue her own (wrong) hypothesis that I did not have inflammatory arthritis. Had I received the letter when I should have, 11 months previously, I would have pursued this myself. I would have asked her about it, I would have sought other advice... I would have KNOWN. So, not getting that letter delayed my treatment (and prolonged my pain and other problems) for many months.

I didn't mean to write this long post, I just got carried away. There are follow-up instalments but I think you've suffered enough for now.

Anyway, this is why I take charge now by making sure I have copies of EVERYTHING and ask for a second opinion when I'm unsure. And it's why I encourage everyone else to do the same, even if they have great doctors. x

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Blimey, whaleroad, please don't apologise for that tale. It's a really important lesson and the more of us that hear it, the fewer have to learn from bitter experience. I am sure that miscommunications like that lead to delays and oversights in treatment every day. Sometimes it's down to mistakes, or confused policy, and sometimes because one professional decides to assume sole and supreme authority over our lives. The attitude that patient power is a bad thing is still far too prevalent. And like you, I've grown more and more angry as I've experienced it repeatedly in these last few years x

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Seems the way to go for everyone, get copies , chase things up and so on. Very hard when unwell but very necessary too. Lou x

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that's why we need to keep track of everything ourselves and they should let us. most doctors don't read much of our notes before they see us and when you see a different doctor everytime the only constant is us so we have to know what is going on so we can remind them. my mother is supposed to to get a health MOT on her birthday every year but her appointment is never made by the GP she has to remember and do it herself. doctors need to trust us with our information because they see too many people to be able to remember all of us

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exactly right x

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