How do I get copies of my daughter's MRI reports?

[misdee]

Our youngest daughter has a brain issue that is currently undiagnosed but thought to be a form of leukodystrophy :( I was considering sending copies of reports to Dr Van derr Knapp who discovered 1 type called MLC1 to see if the progression fits the subtypes. It was what the hospital thought she had but a recent mri suggeats maybe not. So far my daughter is a puzzle and it's been 2 years of questions and no answers.

Ask your local doctor's surgery or consultant and if they refuse, maybe send a freedom of information request.

Ask your daughter's consultant's secretary. If no joy speak to PALS for a copy of her records, particularly asking for this MRI report - there's a form to fill in and possibly a fee and then they send you the lot.

Had to do this when we asked for DH's records when he moved trusts and needed all his eye measurements.

The scans were done in 2 different hospitals so I will try the GP first of all. Thank you.

We aren't due to see either consultant for a while.

Can't help on how you get it but just to say you probably want the MRI scans themselves (on CD usually) not just the reports

Ok. Will make sure to ask for the scans and reports. I just want some answers for my daughter.

Google the hospitals and medical records officer, you should be able to find information on who to write to to get the full records. Failing that, ring the main reception of the hospital, they'll be able to point you in the right direction
I had to send off documents, DS birth certificate think, and it cost about £30, that was for full hospital notes and a CD with the CT scan.

(sorry for the vagueness, it was a few years ago now) and

Your GP will probably have access to the reports but they might not address the points that the specialist is interested in. He is more likely to want to see the images themselves as well as - perhaps - the reports. Your best bet is probably to write to the two hospitals and ask for all notes, clinic letters, reports, and images. They will probably charge something in the region of £30 as per @PotatoesOfTheCarribean.

As per minipie a specialist is more likely to want to see the images themselves. Some reports can be v dull 'no evidence of blah' when you actually want them to talk in detail about an area.

There is no substitute for seeing the images.

The Prof you are hoping to involve might be able to arrange this by videolink with your daughter's hospital, otherwise it would be having the images on CD.

Second getting the images on disc. This will be of more importance than the reports.

Appreciate how frustrating chasing answers is, trying desperately to help your child when they are a difficult case and everyone seems to spend so long scratching their heads trying to work it out. Just wanted to wish you and your daughter all the best.

Can you wait until May? It will be free then to request your medical records.

Really??? That's good to know. We should have the genetics results by then as well

Yes when the GDPR comes in it's no longer legal to charge for subject access requests :)

I second getting the images.
I had to go to the archives, fill in a form and pay a fee (30£ I think).
then took receipt and form to imaging where I got a dvd with all scans.

I also took a few empty dvd's in case they didn't have spares.

word of caution, the consultant viewed the images but asked for specialist radiologists to review as well, which was another 500£ (worth it in our case, but keep it in mind)