For more than a month, the number for the MS nurses at my local hospital is answered with a message saying that they are “temporarily(!) unavailable”. I should start kicking up about this, shouldn’t I? It’s weedy not to do anything, just because I’ve always thought the MS nurses were pretty rubbish anyway and because I’m scared they’ll stop my Tysabri if they think I’m a trouble-maker. That last idea is just paranoia, isn’t it?
Have you tried ringing the Nurses secretary? she should be able to tell you what the problem is regarding the unavailable message.
Your last idea probably is paranoid but I completely understand why you would think this way
Think about ringing P.A.L.S I’m sure you will get a response then.
Never mind what the ms nurses may think…although I do understand your feelings. There is an obvious break in communication and it needs sorting.
They don’t have a secretary. I will ring PALS - I think that’s safe (I know, completely paranoid).
You are not being paranoid but feeling upset and stressed which is justified.
Let us know how you get on
An MS Nurse is as rare as hens teeth around these here parts - [said in a rural burr] ln 32yrs of PPMS - l have never seen one. l live on the boundary of two counties - and l am told l live too far from any MS Nurse. The nearest MS therapy centre is also about 40miles away.
l saw a Neuro when first diagnosed. Then went 26yrs before seeing another - and that was because l wanted to try LDN/Sativex. l got the Sativex - but have to fund the LDN myself. Have seen a neuro once since then - and the first thing she said was that her knowledge of MS was very limited. l waited one and a half hours -just to get less then 5mins of a consultation.
So apart from the MRI as part of my diagnosis - l have never had another. Now l have a titanium hip and knee - so no more MRI’s.
do u get the tysabri monthly? speak to them then and explain how frustrating it is for u re phone.
yes it is frustrating! what is it you expect them to do? could we help with a question or maybe its personal/private…
scream NOW for 10 seconds-hope thats helped!
Our MS Nurses are no longer at our Hospital (Southampton). They are putting a business case forward to see if they can be re-instated.
Thank you for the suggestion, Ellie. I rang the ward where I get Tysabri, they put me through to the neurology secretary and she is going to give the MS nurses a message to ring me.
I wonder whether they’ve just left the ‘temporarily unavailable’ message on their voicemail to reduce their workload.