zoelouise 28/11/17
Last reply 3 months ago
Anyone else have to chase results etc?

I am on tecfidera so have the 3 monthly blood tests to check all my levels are safe. Because of where I live, I have the blood taken at my GP surgery. It is then sent to the hospital in the same “trust” as my doctors before being sent to the hospital that actually deals with MS in our region!
No-one ever let’s me know the results of these blood tests and the results are not even sent to my GP. So I have to phone and ask for these results, even more so because on several occasions the results have not even made it to the correct department!
I have been phoning the hospital since Friday now, and been greeted by an answer message saying the ms nurses are dealing with emergencies only at present. So I left a message. I tried again and it said on the message if calling for any other reason to contact the MS coordinator on a different number. I did this and left a message, still no call back! Today feeling totally frustrated and sick of these people playing with my life, (as i am sure most of you are aware there is a risk of PML, hence the 3 monthly blood tests) so yes they literally have my life in their hands, I have telephoned my neurologists Secretary, only to be greeted by another answer machine. I left a message saying that if no-one can be bothered to let me know if I am safe or not then I am considering stopping my dmt.

Add categories

Browse categories and add by clicking on them

You can remove current categories below by clicking the ‘x’.

3 months ago

Oh dear @zoelouise that’s not good form at all! Does your hospital have a PALS or complaint department? You’re right, it’s so important that us Teccies are monitored and these delays are anxiety provoking. How near to the hospital do you live? You could try stomping round there and insisting somebody helps you. It’s a bit drastic though, right? The services are all there for us, granted, but the systems, or lack of, don’t pull these things together, and you’re right – this is about people’s lives. May the force be with you! 🙂

3 months ago

@vixen thanks for your reply. PALS is a good suggestion, I will look into that. The hospital is about an hour or so drive….and I don’t drive 😂 I contacted my GP surgery to see if they could help but they said I would have to go through the hospital.

3 months ago

@zoelouise , another vote for the PALS team. Give them a call and things will start moving. 😉

3 months ago

Thanks @stumbler will do

3 months ago

I travel a long way to my chosen hospital and they do the bloods at the same time as the review appointment. Friends have suggested it would be more logical to have bloods done locally and for the results to be sent to the hospital in advance of the nurse appointment. That has never been suggested to me by the team in London and I’ve never asked. Never will now! Having all info, test results etc. held in one place is clearly a safer bet. Travelling to London is less stressful than what you’re going through, which is totally unacceptable. Remember you have the right to be treated in any NHS hospital in the country. Ever considered a change? x

3 months ago

I’ve been on Tec nearly 2 years, had the blood tests every 3 months and never received any results! I’m so busy with life I work to the maxim of no news is good news. Quite irresponsible really. But I’ll chuck in PALS too. They’re very helpful. X

3 months ago

They only test every 6 months here in the US, I just had a appointment with my neuro, my next appointment is in a year. I asked about the blood test, the MS nurse said I was doing so well, didn’t think I needed it. They said if I wanted it done have my GP do it, I am starting my 5th year on Tecfidera. Potter

Post Comment

You must be logged in to reply to this topic.