Last reply 1 month ago
Ms nurse not resonding

Good evening.
I am writing on behalf of my brother who has been recently diagnosed with high acting ms.
He had been advised to take Tysabri but after going through all the pros and cons he asked if he could take something less potant. He was given the name of a medication which has less effects he was happy to try it. The problem now is several emails to his nurse and voicemails she isn’t responding to either he does not know what to do as an MS nurse she is his first port of call. Can anyone advise him what he should do
Thanks in advance
Hilary

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vixen
1 month ago

Hello @hilaryk0757, is your brother trying to just ask a question about the medication or is he struggling with symptoms? If the latter, don’t delay and call the NHS helpline. If his MS nurse isn’t responding, he should call his neuro outpatients in the morning and say that he needs to contact the MS urgently. He should also ask for an alternative number from his MS nurse. I’m sorry he’s had this experience, it’s. great service, so a real pity when there’s a blip. If it’s a query about the medication, he/you could always try posting one here and see if anyone can help. Good luck, it’s nice of you to be here on his behalf 🙂


hilaryk0757
1 month ago

Hello.
No it’s not the medication that is the problem. It purely the fact that his ms nurse isn’t responding to him either by email or phone call. It’s been agreed about the medication he is to take but without her responding he cannot get it. His last conversation with her has been 2 weeks ago. I personally think it’s disgraceful to leave someone like this. I have told him to contact his consultant’s secretary and explain why he has had to call her


stumbler
1 month ago

@hilaryk0757 , you could also see if there’s another MS Nurse for your area. This webpage should be able to help:-

https://www.mstrust.org.uk/about-ms/ms-services-near-me

Also, you cold also enlist the help of your hospital’s Patients Advice & Liaison Service (PALS). They can normally help things get moving.


vixen
1 month ago

One of the annoying side of things is that, whilst the services are there for us, we need to be our own advocates. That is a real pain, but it’s kind of how things can be. Yes, deffo get on the phone first thing. The consultant’s secretary is a good start


cameron
1 month ago

This situation could be the consequence of staff absence coming on top of existing understaffing…..My hospital has had to suspend their MS helpline temporarily, but they have given us all a contact email which IS responsive, so I think your situation definitely merits phone calls etc. to get it sorted. Good luck and let us know the outcome.

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