Can I request my MRI report?

Stayinghopeful

So been referred for some scans and tests to try to get to the bottom of long standing (5 years) si joint pain. I've had an x-ray in Jan and was given a brief synopsis of my results within a week. Then had a long wait for my MRI which was about ten days ago. My referrer (msk triage service) texted me today to say they have my MRI results and have booked me in for a review in two months time.

My question is can I request a copy of the report in the meantime? Otherwise that seems like a hugely long time to wait when they already have the results.

frogmorton

Hi @Stayinghopeful first of all well done getting an MRI!

I don't see why you can't ask for it if it's available, but is it not possible to ask for an earlier appointment instead? I think they probably want to make sure you understand exactly what the results mean perhaps?

Must be very frustrating as things aren't progressing while they are at this standstill.

Take care

Toni x

Stayinghopeful

Thanks @frogmorton

I phoned this am and asked the MSK triage service. Apparently it's policy not to give results until the referrer has discussed it with you at the review.

They can't offer an appointment sooner, long waiting lists! But they have offered to put me on the cancellation list so there is some possibility I might get the results sooner than two months.

Still very frustrating that they can potentially withhold the results from me for that length of time.

I'm pretty sure I would understand at least the overview of the results. I'm a bit of a geek and like to learn about things as much as possible, including reading lots and lots of clinical research on pain, arthritis etc. I know that policies apply to everyone and they can't amend it for one individual, but it's still very frustrating.

Norny

My GP was forwarded a copy as he referred me he gave it to me. You could ask your GP practice could you have a copy.

MrDJ

This is my main job now since being stuck at home since covid started. I only deal with xray, ct, mri scans and reports.

When the EU data protection law came into force all patients now have the right to request their medical notes and radiology xrays scans and radiologists doctors reports for free. (private i believe still have to pay). Once scans are checked it can take quite a long while for them to get fully reported and finalized. If it was urgent they would of been reported immediately and i would of thought you would of been given a sooner appt.

Similar happened to me yesterday for some urgent bloods taken. got text to contact gp to book telephone appt. when i rang they said first appt was end of May. results were not urgent so routine appt was only option. or fill out online text e-consult and may have earlier appt.

Contact the hospital or search on their website for a SAR request form (subject access request). They have upto 30 days to supply these records. you need to supply 2 proof of id, passport,driving licence, utility bill etc.

One request is sent in by you then sent out to all the departments youve asked for so medical notes will come from medical records dept while i send out radiology images/ct/mri scans and reports.

We use IEP (Image Exchange Portal) transfer which is via email where we upload to servers then you get an email link to download them. Not all hospitals use this but majority do. Notes are sent by Egress transfer at my hospital.

SAR requests are the same at every uk hospital but how they send them out can be different from trust to trust.

keep us posted.

MrDJ

looks like my post has been moderated and removed the GOV NHS link so just google it. nhs sar request gov.

Stayinghopeful

Thank you, that's so helpful. I am enormously grateful that they are investigating properly but I just hate the not knowing.

I had summised already that they hadn't found anything that needed to be reported urgently. However that still doesn't really help, I want to know what the results said both for my own knowledge and peace of mind and so I can think about proactive next steps and better targeted self management.

Ironically they told me my x-ray results via text last time but won't give MRI results.

I will try the subject access request, thanks so much for the suggestion.

Chris32

I exercised my right under GDPR to see my data being held, and downloaded an X-ray of my knee. Very useful as the physio couldn’t access the images. I showed them to him on my phone. Also with the NHS using private companies those same GDPR rules get in the way when transferring information from one to another. It’s useful to request data from one so you can pass it personally to the other.

MrDJ

your welcome @Stayinghopeful

Emmasknackeredjoints

@stayinghopeful. You can access the report from the hospital access my records as mentioned above. Some places do not to share info before app for certain results that could be sensitive, without discussion.

For Example abdominal ultrasound which shows lesion as you can imagine the patient would think all sorts and worry for perhaps no reason as may be begin. So reading your reports without explanation isn't always good thing.

I know said it's your SIJ you had MRI but they may want to discuss the findings with you before you read it.

crinkly

When I had a follow-up appointment after an MRI scan in 2023 I was seen by a senior the Physiotherapist who asked if I had seen my report. I replied 'no' and was (I later discovered) given an abridged version of the findings as being relatively insignificant. This left me with the impression that I was making a fuss and no options were given other than that, in specified emergency developments I should present at A & E when urgent surgery might be required.

A little later, when consulting a specialist alternative practitioner who needed details of the scan I learned that it is extremely easy to obtain a copy of these - and other results - from the referring GP. I phoned immediately and was given a copy the same day at my local village surgery.

It was not rocket science to find out that the hospital Physio had glossed over the most important elements of the findings and I had not been told that I have spinal stenosis or about an accompanying chronic spinal fracture. I forwarded a copy of the report to the alternative practitioner who carefully explained that my condition was incompatible with safe treament of the kind I had envisaged. (I am grateful for such an honest response and the two quite lengthy telephone calls freely made by that practitioner.)

If anything similar arises in future I will not hesitate to request copies of reports from my GP before I am called for a follow-up hospital appointment!! I can see that some people might be seriously worried by reading an adverse outcome but I react best when I know exactly what I am facing and can discuss outcomes and possible options from a basis of knowledge.

Stayinghopeful

Sorry missed these replies as I had not logged back in.

Yeah they do want to discuss it first. But it's annoying because I actually have a really good understanding of the different things that might show on the MRI and what they mean. I've done a lot of reading and research and am quite well informed.

But they can't make exceptions if it's policy.

For now I haven't tried to circumvent the system by putting in a subject access. But I am still weighing up the option of doing that.

Stayinghopeful

https://community.versusarthritis.org/discussion/comment/721096#Comment_721096

Sorry to hear your experience of getting results wasn't so positive.

I am totally with you on your comment about reacting best when you know what you are facing and can discuss things from a position of knowledge.

Emmasknackeredjoints

Once they discuss with you , ask for a copy to double check it

Stayinghopeful

Just to say thank you so much to everyone for your advice. I actually managed to get on the list for a cancellation appointment in the end and I got my results on Monday.

After 5 years I finally have a diagnosis, it's osteoarthritis in my SI Joints. I'm relieved to finally have a diagnosis even if that's not the best news to hear as an active person in their early 40s.

I'll maybe post separately about my diagnosis once I have had a bit more time to take it all in.