Access to medical reports

[theminiaturist]

I have asked my GP if I could see the actual report of my echocardiogram diagnosing my mild left ventricular heart failure.I was diagnosed with this condition in December 2017 and I have only ever seen a Cardiologist once and I was not told how well my heart is pumping. My GP did not seem too happy when I requested for her to ask for the full report from the hospital.I have heard about ejection fractions and I presume that this would be mentioned in the full report.Has anyone any experience in a situation like mine and if so,how long would I have to wait before the full report would be available for me to see?

[Sunnie2day]

I think the answer (how long if it happens at all) is dependent on the trust and the surgery - mine has gone to a 'we never give patients the full report' which frosts me no end. They weren't too happy when I asked for the full report with the receptionist actually saying to me 'Well these reports are terribly complicated and would only confuse you'...she said this despite knowing I don't panic plus helped my late husband with all his studying and revision whilst in med school all the way through to his being a consultant neurosurgeon. Grrrrrrrrr!

She reluctantly does give me copies of the letters but I want to see the full reports and again, I'm quietly furious at being denied. My GP used to be fine with giving me print-outs but she was a junior and was moved onto a different trust and surgery a few months ago - the new GP is older (but still younger than I am, lol!) and...refuses to show me scan images much less sharing full reports. She says 'I give patients as much information as I feel they are able to process without being unduly alarmed'.

My cardiologist has no problem showing me these reports (and scan images, etc) but he too will not print out the material for me to have a hard copy.

I try to be 'a good patient' - I don't argue, I don't push too hard as I've seen people labelled as 'difficult' and their care be directly affected by the labelling.

But I've talked to other patients in other trusts and surgeries who are emailed and posted and have no problems getting all the information print-outs they want.

My only conclusion is the whole thing is really a postcode lottery.

[theminiaturist in reply to Sunnie2day]

Thank you for your reply Sunnie2day.

[Sunnie2day in reply to theminiaturist]

Sorry for the rant - sometimes despite best intentions I go into full-on rant.

In the end, there is no rule or policy against giving patients all the full reports and trusts and surgeries make their own decisions on who gets what.

[Milkfairy Heart Star in reply to Sunnie2day]

I am given as routine all my test reports that are sent to my GP .

Also all clinic letters.

Before discharge I am given a copy of my blood results and ECG's

As Shar28 has already said we are entailed to this information.

The Genral data protection regulation (GDPR)

I suggest you read the act and have a gentle word with your GP.

ico.org.uk/your-data-matter...

I have heard from other patients in Scotland that they also do not receive the same information that patients in England do.

[Sunnie2day in reply to Milkfairy]

Thank-you for the link, Milkfairy, I'll give it a line-by-line read in the morning (I'm best in the morning, usually, before the Bisoprolol kicks in). Hopefully I'll be able to effect an 'attitude adjustment'.

This refusal to fully share information with patients is new at the surgery, it wasn't like this when I registered a year ago and didn't start until November - but I know from my last surgery and talking to other Scots this refusal to share is common across Scotland. Not all trusts and surgeries, just some but enough that people do talk about it.

[theminiaturist in reply to Milkfairy]

Thank you for the link,Milkfairy. I find it quite incomprehensible that you are not fully told about your own health and have to ask those concerned to let you have information regarding tests and other procedures that you may have had done. It appears to me to be somewhat resembling the" closed shop brigade."

[NorthantsSteve in reply to Sunnie2day]

Hmm. I don’t think they’re allowed to prevent you from accessing any information held about you. nhs.uk/using-the-nhs/about-... could be different in Bonny Scotland though.

[Sunnie2day in reply to NorthantsSteve]

I think it may be different up here, actually. Apparently it's the GP and practice manager discretion. Consultants (at least in the trust I'm in) routinely do not send letters or reports to the patient but instead send everything to the GP.

I'm still working on getting my GP to send or let me pick-up full report prints, I'll update if/when I get some results.

[NorthantsSteve in reply to Sunnie2day]

You have a right to see all data about you. Medical records may be different I guess. You need to make a subject access request. itgovernance.co.uk/blog/sub...

[Sunnie2day in reply to NorthantsSteve]

I have an appointment now to sit down with the practice manager and fill out the forms (multiple!) to gain access to my complete records. If I want print-outs it will cost me a set fee depending on the amount of printing.

When I see her I'm going to bring up the way the receptionist (and the GP) have responded to requests for copies of letters and reports, and I'm going to request a switch to a different GP in the practice. If the GP and receptionist had told me from the beginning I could fill out a form and pay a small fee, none of this would have happened and I am definitely going to make sure the practice manager knows that.

[Milkfairy Heart Star in reply to Sunnie2day]

Sunnie2day

Is Scotland not signed up to the GDPR?

You are not meant to be charged according to the act.

I requested a copy of my recent inpatient medical and nursing notes. I filled in one form on line, had to prove my identity and then I was sent everything via email.

All without charge.

[Sunnie2day in reply to Milkfairy]

I think the practice manager may be looking at an older copy of the 'How to access medical records in Scotland' pamphlet. The pamphlet is being revised to bring it into line with the GDPR (which does have effect up here) but it's not finished yet and apparently they're all going by the 2012 version (which has been replaced by a 2015 version I've downloaded but not read yet).

I'm seeing the practice manager Tuesday next - bonus, lol, I'm also going to see the practice nurse for the chest listen they've had to put off owing to the effort to reduce exposure to potential coronavirus for 'vulnerable' patients like me.

Of interest - the receptionist told me to go to the staff entry and ring the bell - they are taking people like me (seeing the practice manager, nipping in for a quick check with the practice nurse) through the staff entry straight to the pm office where the practice nurse will give a listen, then the practice manager and I will have a chat and I'll go out through the staff entry.

Honestly after the receptionist told me how they're organising the meeting, I was (and am) tempted (very) to put it off the now.

[NorthantsSteve in reply to Sunnie2day]

Have a look at this and then the tab on accessing your health records. Seems to me it should be free. I think they don’t know who they’ve taken on Sunnie 😂. nhsinform.scot/care-support...

[Sunnie2day in reply to NorthantsSteve]

I'm going to print that out and take it with me to the meeting Tuesday.

The only thing I can think of to explain the problems I'm suddenly encountering is the trust I'm in has been hitting the news up here and not in a good way, sadly. I think they're circling the wagons, so to speak.

Any road, I intend to be pleasant and polite but I also intend to make it clear I want a copy of all reports so far and new ones in the future.

Thank-you for the link, Steve, much appreciated!

[Milkfairy Heart Star in reply to Sunnie2day]

Perhaps ask the Practice manager to read this link.

The GDPR act came into force in 2018. It was the Data protection act before then and it seems the Practice Manager is relying on out of date information.

I must admit my Patient advocate antennae would be twitching if I had the response you have had from the Practice manage.

Just who does this data belong to...you!

firstpracticemanagement.co....

[Sunnie2day in reply to Milkfairy]

Thank-you for that - I'm going to go through it line-for-line.

I don't want to be 'a difficult patient' but I do want to be fully informed and there is no real reason why I've been given the runaround so far unless it's a wagon circling exercise as I mention in my reply to Steve.

The trust might want to give a think to what the wagon circling is doing to patient confidence. I know since I hit what felt like a brick wall when I asked for the full report in addition to the letters (they were reluctant to give those letters, btw), my confidence in the practice has dropped.

[Milkfairy Heart Star in reply to Sunnie2day]

It is not the patient who is difficult or demanding it is the situation.

Being assertive or advocating to be given the information which belongs to you is not being difficult.

[Sunnie2day in reply to Milkfairy]

I know that, you know that - the hard part is getting that across to the receptionist and some GPs. I'm saying that with a small tight smile (is there an emoji for that?).

I really do know people who have been marked as 'difficult' up here for nothing more than asking to switch meds they're having trouble with, or wanting more information and copies of letters and reports. I feel as though I'm negotiating a mine field at times.

[Milkfairy Heart Star in reply to Sunnie2day]

I know that feeling all too well.

My daughter did an amazing watercolour to illustrate one of my favourite quotes by Margaret Mead which she framed and gave to me.

' Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has.'

🤨

[Sunnie2day in reply to Milkfairy]

She spoke at my university and that was one of the best hours I've ever spent. I came so close to changing focus to anthropology after listening to her speak.

[Shar28]

Hi. You can ask for copies of all the information held about you by the hospital or wherever did the test under GDPR (data protection) regulations. It’s free and I believe the timescale is 28 days.

[Sunnie2day in reply to Shar28]

Thank-you, I'm going to look into this as regards Scotland.

[benjijen]

I have access on line to GP surgery to all letters etc sent to them by the hospital and all blood test and hospital test results so I can query anything I don't understand. My Cardiologist explained everything to me and I am now just under GP care with annual CVD appointments. I have never asked the hospital for anything else but was under the impression that it's your right to have access to reports and results if you want them. I would definitely persevere with your requests. It's not up to anyone to decide you will be confused by them!

[Ashisan]

You are all lucky that your doctors or cardiologist tells you anything. The doctor complains that the hospital doesn't send him reports he tells me to ring the cardiologists secretary for results and the cardiologist won't tell me anything. I have just had an angiogram and the consultant would not say if I needed a follow-up or any idea what was wrong. He just left the scan room not saying a word.

You are all lucky you can even converse with your medical carers I have given up.

[Milkfairy Heart Star in reply to Ashisan]

Hi Ashisan

Welcome to the forum

Have you considered contacting the hospital's Patient advice and liaison service ( PALS)

I have always found them very helpful in this situation.

[Ashisan in reply to Milkfairy]

Thank you I will try that service.

[woodlandwonders]

I requested my stress test and echo reports as I ended up in another hospital needing emergency surgery on my hand. Because they didn't have access to my records they made me have it under local, with gas and air.

The CD arrived the other day, 3 months later. They have not sent me the tests but my total cardiology notes. There are several blank pages that are "redacted third party notes that they can't disclose to me"

Got to make you wonder why

[jon22]

I had the same problem getting access to my records. I wanted copies of my cardiologist report / CD of my angioplasty. I asked a nurse at cardio rehab who said she would find out but never got back to me. I assume becuase she was told 'no'. I will have to follow up again.