Hi my sister went for an MRI scan a few weeks ago for ms we were told the consultant would send out an appointment to discuss the results. I have just had my sister on the phone in tears she has a letter which says things like white matter changes in demyelination, prominent canal and minor disk bulge, syrinx of the spinal cord etc and that she can see the consultant to discuss these results in 3 weeks! Is that right? Is that a normal way to get your results? The consultant left and she has a new one it says he wont know if the results are ms until he meets her.
Its a letter from the hospital but it was sent to her by the gp i think Im not sure she was too upset, she has depression and often has no energy they have always put it down to depression, now she has gone to sleep because she was too upset.
Can anyone tell me if this is how you are supposed to find out and if not what to do to get the appt bought forward she cant wait 3 weeks thanks
Hello, Sorry that your sister is so upset which I can understand. Could your Sister have an appointment with her GP first to discuss the contents of the letter? I saw my GP first who told me in his opinion what was going on but to wait for my follow up Neuro appointment. I really do not agree with letters like this going out knowing full well that the average person cannot interpret the contents! I never received the MRI results letter, it was for my GPs eyes only and I do believe it should be that way too. I cannot speak for other members but i’m sure you will get some more replies. Hopefully, you would be able to go with her to GP? Good luck, stay strong, hugs xx Sam x
Sorry to hear she’s upset, I know it’s hard but the neuro will explain I had a similar letter but had wait 6 weeks for explanation , then it was only possible ms, further tests needed Take care Xxx
Thanks for your replies. I went and saw practice manager at gps surgery and asked if this was standard practice. She said that unfortunately it is the consultant sent it to her and not the gp. She was quite helpful. Then she called me and said she had shown letter to a gp who said it made no sense and she was quite horrified that my sister got this letter. The gp dictated a letter to the neuro demanding an interpretation of the letter and that he see sister sooner. and the neuro secretary called today and bought appointment forward. Only 6 days to wait instead of 3 weeks. Her depression is very bad at the mo she is finding it hard to cope with. 6 days is better than 3 weeks tho eh? also she has signed a note to doc so I can act on her behalf if she too ill so at least they will stop blocking me when I try to help her now. Honestly I don’t know how anyone copes when they get news like his its awful!
It’s not uncommon to get a notification of test results through the post, but that is NOT the same as a diagnosis (the interpretation of those results), which NICE guidelines say should always be face-to-face.
I think the problem has arisen in part because of the increased emphasis on patients’ rights to see ALL information held about them. This can result in release of information to the patient which is either upsetting or confusing, but has been done because it’s “their right” to see everything that’s being said about them - whether or not they’re capable of making constructive use of it.
Personally, I was diagnosed on BUPA. I’m not sure to what extent that makes any difference, or whether it’s down to the individual neuro (I have the same neuro on the NHS), but I never got just a bald statement of test results through the post, with no context.
Instead, my neuro collected all the test results, and only then went through them with me at the consultation. After that, I got a letter summarising both the evidence, and what we had discussed about it - i.e. what it meant, and what (if anything) was proposed.
also she has signed a note to doc so I can act on her behalf if she too ill so at least they will stop blocking me when I try to help her now. Honestly I don’t know how anyone copes when they get news like his its awful!