Hi, can anyhow shed any light on the current situation with the MS nurses at RD & E HOSPITAL. Wonford. EXETER?
Have they all left? Is the helpline ever being reinstated? I feel at a complete loss. I phoned the coordinator for some advice, no disrespect, but she couldnt help answer my ms related query, so i phoned my consultants secretary, its never been a problem in the 30+ years ive been diagnosed, infact, consultants have always said its fine, only to get short shiff from another secretary who answered the phone, was told to go to A&E!! if i had a problem.
My GP surgery has no continuity of care, i dont speak to the same GP twice in a row which makes explaining my whole medical history quite laborious. I appreciate the nhs has changed remarkably in the pass 30 years but oh, how i miss my 1st ms nurse, Gail Haynes (aka earth angel).
I’m really sorry you’re experiencing this—it sounds incredibly frustrating, especially after having consistent, supportive care for so many years. A sudden loss of access to specialist support can feel very unsettling, particularly with a condition like Multiple Sclerosis where continuity really matters.
While I don’t have real-time information on staffing at RD&E Wonford, there have been wider pressures across the NHS affecting specialist nurse services, including MS teams. Gaps in staffing or restructuring can unfortunately lead to situations like reduced helpline access or delays in support.
That said, being told to go to A&E for a non-emergency MS query is clearly not appropriate, and it’s understandable you feel let down.
A few practical steps that may help:
Ask your GP surgery specifically for a referral or direct contact with your neurology team rather than going through general channels
Request to be placed on any updated contact list or helpline system if one is being reinstated
Consider contacting MS Society or MS Trust—they often have helplines and may know the current situation locally or suggest alternative contacts
If needed, you can raise a concern with the hospital’s Patient Advice and Liaison Service (PALS), who can sometimes clarify what’s going on and help re-establish communication
It’s completely understandable to miss the kind of care you had before—good MS nurses make a huge difference, and your experience highlights just how valuable they are. You deserve access to proper guidance, not to feel like you’re navigating this alone.
Well that all sounds a bit rubbish and I’m sorry you got a shirty secretary. I expect you’ve done this, but maybe worth checking the personnel and contact details on your hospital website to see if there’s any more up to date information. If you’ve been out of touch with them for a while it might take a while to get played back into the system. It’s the creaking gate gets the oil, as they say, and you have not been asking much of them so they might need reminding that you’re there and need support.
Thank you for your response. Your advice is invaluable and has given me some direction on next steps. Very much appreciated. Thanks again. Have a nice evening.
That sounds awful and you deserve better care. In Manchester we don’t have dedicated MS nurses any more as resources are stretched.
We do have a MS helpline and you can leave a message and you get a response within 5 days from a nurse. Usually this happens within 2/3 days thankfully.
We also have an annual telephone consultation with our Neurologist.
Any emergencies I think we would need to go to A&E.
I completely empathise, and unfortunately have not had any luck getting more information either.
I badly my broke my ankle in December and managed to let the team know just before the last nurse left, so i could delay my tysabri treatment for surgery. But I haven’t been able to arrange any follow up or neurophysio support since, so im trying to manage significant mobility changes as best I can.
I tried the ms helpline and they listened but couldn’t offer any advice. Ive also been advised to go to a&e, but it’s not a relapse.
So hard to know what to do. Im thinking of contacting the SouthWest MS Centre in Exeter for sone advice.
Its the first time in 15yrs I’ve had no access to support and feel at a real loss. They say they are recruiting buy I’d be devastated if this lifeline disappeared for good.
Ive just been told that rd&e have recruited 2 new ms nurses so hopefully things will start to look up.
Yippee!!!
Oh, and i dont know if they can be any help to you but the MS Society has trained MS nurses that you can chat to and although they obviously arnt quite like having nurses who you can see, i actually found them extremely helpful.
