Test Result protocol?

New diagnosis and before diagnosis
1

Hi -

Wanted to ask a question about test results.

I have had a few different tests now, and after each test the neuro writes a letter to my GP with the results, and sends me a copy of the letter (I am able to discuss results with him at clinic appointments, but they are often not scheduled till months after I get the results). I didn’t feel too anxious whilst waiting after first mri, but after that came back ‘suspicious’ of MS, I have found that I am much more anxious about subsequent tests.

I usually cope ok initially, but once 4/5 weeks have passed, I start to get increasingly worked up and anxious ; I find myself waiting obsessively by the front door every morning just in case post plops through the letter box. The ‘not knowing when to expect them’ is the hardest bit for me .

I know I am not alone in this situation, but also I have seen a few posts on this forum with titles like ‘results day on Monday’ and ‘results tomorow’ ; so it seems that some hospitals are able to give patients a set appointment at which they get told results. I think I would find it a lot easier if I was given results in this way: a set time / date, to minimise unneessecay anxiety.

Does anyone have any idea how it is possible to arrange this with specialist? Is it something that can be arranged if patient requests it, or is it all down to individual hospital protocol?

2

Hi,

I do not think you will be able to get an appointment (not on the NHS, at least) to discuss every set of test results individually, as this would not be cost-effective, or efficient management of the waiting lists. Obviously, if you went privately, you could have as many appointments as you were willing or able to pay for…

The only way I can think of to do it would be to request that you NOT be notified by post, as the uncertaintly of this is making you anxious, but to discuss all test results since last time at your next scheduled appointment.

Obviously, this isn’t the same as being able to book an appointment on request, specifically to discuss the results, and may result in waiting longer to find out about them. It could also place your GP in a difficult position, if you’ve asked not to be copied, because if you happen to see them in the meantime, they might be a party to things you don’t yet know.

But I can’t see any other way of implementing it fairly. Why should one patient get extra appointments, when everyone else has to wait for the post?

I must say, even going privately, I did not usually receive copies of test results by post. I would only get my neuro’s write-up AFTER he had seen me and shared them, and interpreted them for me.

Although, usually, I wouldn’t be in favour of less information, rather than more, I think this approach does away with the problem of the scary letter you might not even understand.

I don’t think anyone should be getting a letter saying they “might have” a serious disease, unless it has been discussed with them first, so should come as no surprise. And certainly, it’s contrary to NICE guidelines to offer a formal diagnosis that way. The diagnosis letter should simply confirm what has already been discussed face-to-face, NOT be the main channel by which the patient finds out. Ask that you DON’T get copied with test results, until someone has been good enough to go through them with you. Then, like other folks, you’ll get a date when you know it’s up for discussion. Although this won’t prevent the odd occasion when they say: “Sorry, they’re not back yet.” :frowning:

Tina

3

thanks tina

as always, you offer very sensible advice! x

I think I have to learn how to manage my anxiety more effectively.

Yes, by test results, I meant my neuro writes a letter outlining his interpretation of the results. Sometimes the wording is slightly different on the version the gp receives (eg on one letter I received, I was told there were ‘patches that could be consistent with ms’, whilst my gp received a letter stating they were ‘consistent with demyelination’, and also additionally stated which areas of the brain they were in). On other occasions I have simply been sent a copy of the letter sent to my gp (letter is addressed to gp, with hand -wrtiten ‘cc’ note on the top).

It is definitely the waiting bit I find hard. I agree that it would not be cost-effective to discuss each test result in person though.

It is interesting you suggest that one option could be for me to request that I do not get notification of test results by post, but instead ask to discuss them at follow up appointments. It is something I have been considering. I had not considered that this might place my gp in an awkward position. It is quite complicated when you stop to think about things properly.

thanks again (as always) for your time. x

4

I am not very impressed that I have not received a letter sumerising my first nuero appt back in December, I think it is not good practice at all and I don’t get any results until I next see him, not even my gp has the results, and I aren’t getting an appt till march time, even though I have had MRI and bloods and nerve testing all done but no appt to see nuero yet :frowning: I will be asking why I have not had any communication from him regarding the last appt