Your results and reports...are they really ours? - LUPUS UK

LUPUS UK

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Your results and reports...are they really ours?

32 Replies

Asking this question on several sites guys.

What /who says our test results are ours?

Is there legislation I can quote to get them?

Just been told, after an all clear ovary ultrasound, "That its NOT the healh trusts policy" to release them? when I issued my first outright request for scan results. !!!!!!

Your information, thoughts greatly appreciated

As always

Love

⚽️

32 Replies
Natura profile image
Natura

That sounds to me like it isnt there policy, but they didnt exactly say no either. In the US, i ask for a copy of everything. And they give it to us. We pay for it in a sense through our insurance plans. Might be different in UK.

misty14 profile image
misty14

Hi footygirl again

Great news your ovary ultrasound was clear. Interesting question you've raised re obtaining copy of the report as the health service is full of protocols and rules. Might be worth asking Citizens Advice and or looking at their website. Also ringing medical records dept of the hospital as they will tell you what to do. I did make a request for my hip X-ray and phoned them and they sent me a form to fill in for it. I did get it too and no charge. This was a few years ago now. Hope that's helpful. Keep scoring X

Chris21 profile image
Chris21

I normally get a copy of the results that are sent to the GP, otherwise I request a copy from the surgery. I've not had a request turned down yet. Never been charged but I'm always willing to pay.

It's possible that they may not like handing the report out as it will be written in medical terms and not everyone understands them, just a thought ?!

in reply to Chris21

Oh Chris you innocent abroad. Bless you. I take your point but I think the NHS is far more devious than minding giving out jargon.

You are so fortunate to have such a willing collaborator in your care.

I am jealous and green!

Best wishes

⚽️🐸🐸🐸🐸🐸

maurice1 profile image
maurice1 in reply to

My experience matches that of Chris. My GP is always willing to give me a copy of my results and I've never been asked to pay.

whisperit profile image
whisperit

These might be useful starting points

The Patients' Association factsheet

patients-association.org.uk...

The NHS Choices site

nhs.uk/chq/pages/1309.aspx?...

in reply to whisperit

Valuable info. Thanks

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Lupiknits profile image
Lupiknits

whisperit has the right starting place. I've found locally that hospitals have stopped their once held policy of copying you in on any results sent back to your GP, but they are often a bit rubbish at telling your GP anything too. Turf war? Trusts are not amused by GPs' power to commission their services. I've never been sent a copy of an x ray or ultrasound though.

You are most definitely permitted to ask for copies of your records, but has to be done formally, as per whisperit's link.

Zara-LouiseD profile image
Zara-LouiseD

My rheumatologist sends me a copy of the letters he sends my GP, as did my spinal surgeon - probably because I asked for that at some point? I also requested a print out of some blood test results from my GP and they told me reception would print them off for me no charge.

It probably differs depending on surgery policies but I've not had a problem so far.

I've never asked for a copy of scans, MRI's or X-rays so I'm not sure if they usually release these as they are not usually fully interpreted by non medical persons?

whisperit profile image
whisperit in reply to Zara-LouiseD

with scans and x rays, i ask to take a photo of them with my camera when they are on screen during the consultation. no-one has refused yet...

Zara-LouiseD profile image
Zara-LouiseD in reply to whisperit

Good idea - I did once ask for a print out of the saggital view of my spinal MRI before my last op as my herniation was massive and from what you could see it was a miracle that I could walk! The surgeon was happy to give me a print off 😀

in reply to Zara-LouiseD

You are blessed by your collabatorial healthcare professionals.

Be thankful

⚽️🐸

Zara-LouiseD profile image
Zara-LouiseD in reply to

I am thankful 😀

I'm sorry to hear stories of people having trouble with their health services. We are quite fortunate sometimes- but not always so!

in reply to Zara-LouiseD

Indeed. It all comes down to money it always seems to. 🤑🤑

You pay directly, so docs etc do not have a leg to stand on regards getting all you ask for. As when we pay privately.

Millions here, as I have myself, have worked hard, contributing via direct removal from our wages, in investing in our health service, for one service. That that money has been systematically mis used has resulted in this situation where every request for anything seems to be weighed first in their list of priorities not ours.

Great Pinheads in every surgery seem to be trained in obstructive ways to block requests. If this is because we are complex patients, perhaps they should do their sums.

My surgery has expanded to some thousands of patients due to many new housing estates being built near by.

If the vast majority enjoy robust good health not like us, if they averaged out our costs per surgery, not person, I do not believe we are expensive, unless they are unlucky enough to have a very high proportion of us.

It is all spurious no etheless.

We are worthy of care. We should not have to beg at every turn. It is obscene that such a basic human right is effectively denied so so many of us.

Sorry Zara but just to explain the vast difference between private and National healthcare provision. And I do know it is no longer clear cut in the States.

Thanks so much for contributing

Love

⚽️

Zara-LouiseD profile image
Zara-LouiseD in reply to

We also have the issue of hundreds of new patients due to housing estates, and no new surgeries yet.......

I have been fortunate in the past to have experienced the wonders of private healthcare = immediate and excellent care compared to the NHS - and for exactly the same spinal operation. I used to have private health insurance through my employer before I was made redundant from that employment and I sorely miss it.......however I still enjoy quicker appointment times compared to my Uncle who lives in a city so I am thankful for that at least.

The other thing that I have found over the years is that I am in charge of my body and my care - if my GP is being complacent I ask for a referral to a specialist and I generally get one. When my Rheumatologist suggests steroid injections and I want to try something other than drugs so request a physio referral first - thats what I get. As long as you are well informed, you can manage your own care to a certain extent. I will have to wait ages for a physio appointment to come through, but its happening because that is what I chose and asked for (- knowing the options without being given them by the rheumatologist.....who generally just wants to stick me with a needle!)

I think knowledge is power, if you do your research and know whats going on with your body and what kind of treatments might be available then you can cut through the bullcrap and demand better services. I have used PALS before to speed up appointments in a case where I knew an MRI was urgently needed (with the backing of my GP if required) - PALS can liase with NHS departments if you are getting nowhere fast or have a complaint about the services you have received. I imagine they could probably help if you required copies of results and the NHS was not forthcoming?

I cannot comment on services in the States as I am not familiar with the procedures over there........

x

Wendy39 profile image
Wendy39 in reply to whisperit

That's a great tip! I have requested copies of X-rays before, of my left hip. The report from the radiologist said no problems. No action required. I got a copy to send a friend who is a clinical radiologist for him to look at. Anyway, subsequently had an MRI and I had lesions on my hip and had torn the socket lining right through. I needed an operation. So I am very sceptical of how X-rays and MRIs are read too!

in reply to Zara-LouiseD

Hm. Food for thought re Radiology department

Cheers

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Bleachbabe profile image
Bleachbabe

Hi, glad your scan was clear. I think the Data Protection Act gives you the right to request information held about yourself by health boards. I suspect that if you tell them you will be making a formal request they will let you have a copy.

Lupiknits profile image
Lupiknits

Oh dear, just remembered saying very firmly "Its MY body, I LIVE in it, give me the information" it's entirely possible I phrased it with a few more words in what my dad called my fine grasp of military language, but the simply firm line can work.

Taking pictures while you are there is a great idea, though.

in reply to Lupiknits

Having a good grasp of English often works against me. Perhaps military or Anglo-Saxon might work better?😂😂

Doubt it... get banned!😂😂😂

Thanks will PM you

⚽️

BettieJ profile image
BettieJ

Hi FootyGirl,

As far as I can determine I don't think your test results belong to you, per se, because they are the property of the trust concerned ,but you have the absolute legal right to have access to them and to view them. NHS Choices has a brilliant summary as to how you can go about this( and you might not even have to pay!!). Here's the link:

nhs.uk/chq/Pages/1309.aspx?...

Bx

in reply to BettieJ

Many thanks. I hear your subtle point and appreciate it. They bought film I think you are saying. But full Radiographers report is our info isnt it? Am I right so will follow your link gratefully

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in reply to

It's very unclear to me as well. In this respect alone it would be good to be a US citizen patient, just to be given all the straight information relating to our health and care - unadulterated by patronising speak.

To me extracting information seems a bit similar to looking up our conditions/ diseases on NHS web pages. I always know I'm going to feel a bit exasperated by the paternalistic tone, and sometimes by the content. Sometimes I think the NHS is run by former head teachers who weren't good enough to keep their jobs!

I'm not entirely sure it's all about money - I think it's about a top down culture which tells those at the helm that patients will just worry too much if they know too much.

Re extracting print outs - it was fine when I lived up here and even easier to get copies of results and letters off the next GP practice. But the following one refused point blank - I had to lie and say I needed them to report back to a private consultant! Even then it was like getting blood out of a stone.

The GP told me that if they did it for me then they'd be doing it for everyone and it would take up far too much of their time. I pointed out that not everyone wants to know and anyway I didn't know anyone else in this practice area so I wouldn't blab!

Now in new Practice again and I extracted prints of my blood results quite easily yesterday.

I believe hospitals are different again though. I wrote to PALS about my hospital experiences up here last year. They were good and thorough and apologised for some very bad practice and for the hierarchical attitudes held by some doctors who favour secrecy and paternalism mixed with heavy duty sarcasm! .

I also took a photo of the print out of my carotid arteries last year - which I was asked to take to the neuro on other side of hospital. This meant I could then show gp and ask about the significance as well as keeping for my records. I like detective work and it's my body, my life - got to get my thrills somehow - why not out of chasing the significance or otherwise of test results?!?x

maurice1 profile image
maurice1 in reply to

Be careful what you wish for. Millions of US citizens have been denied health care because they couldn't afford insurance. Obama care should bespectacled this but the Insurance companies simply increased the premiums for those who could pay, to make up the difference. My friend pays a large monthly premium in addition to 290dollars per month for her prescription (one item).

My cousin who had emergency heart surgery recently was sent home from hospital after 3 days still attached to a drip because her insurance wouldnt cover further treatment. The grass isn't always greener.

in reply to maurice1

That's why I said "in this respect alone" Maurice - I just meant being able to access our test results without a fight. Nothing else I can assure you!

Wendy39 profile image
Wendy39

Hello

I used to work as a personal injury lawyer and we applied for clients medical records all the time. I think you need to apply to the medical records department of the hospital under the data protection act - I will check the date. Just wanted to type this reply whilst I had 5 minutes.

However, you shouldn't have to go this far. I had an MRI of my whole back in April this year and when I saw my rheumy to discuss it, she was quite dismissive and I wanted to read it and digest it myself, so I booked a GP appointment and they printed it off for me and talked to me about it in more detail too.

Maybe worth asking your GP surgery.

I also get copies of blood test results printed off - the GPs receptionist will do this for you. Plus I ask all consultants secretaries to note on my file that all correspondence from doctor to my GP or other specialists should be cc'ed to me every time. That works too and you often get more information from their letter after your clinic appointment than you do from the appointment itself.

I hope I've helped and I'll get that date for you.

Best wishes

Wendy

whisperit profile image
whisperit in reply to Wendy39

Great tips, Wendy,

Wendy39 profile image
Wendy39

Yes, it is the Data Protection Act 1998. But hopefully you won't have to make a formal request in writing under this Act to your GPs surgery or the medical records department at your hospital - request from your GP first. Let us know how you get on.

Wendy

Mean-time profile image
Mean-time

I'll check it out, but I've always gotten my results. In California USA they have to, so I'm told. Sometimes the person you talk to is ignorant of the facts so ask for a superior/supervisor/manager or better yet, your doctor 🤔

baba profile image
baba

NHS/ medical records

nhs.uk/chq/pages/1309.aspx?...

cliffhopper profile image
cliffhopper

I work in an NHS hospital as a radiographer, and we will happily give patients a CD with their images and reports on, however we do need a letter from the patient allowing us to release their data. This is to protect the Trust in the event of the CD being used to post images on social media etc, which has happened. This is likely to be tightened up in the next few months due to a few fraudulent requests, possibly with a requirement for photographic ID. We would never give results over the telephone, as we can't be sure who we are giving them to, this also applies to GP's. In this instance we would send them to the verified fax/email address at the GP surgery. Your best bet may be to go straight the Radiology Department and ask them what their local policy is.

Hope you get somewhere.

in reply to cliffhopper

Nothing like expert opinion.

Thanks Cliff I shall do that

Much appreciated

🌹

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