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No support anymore

Hello all,

I’ve been a bit quite recently but have been lurking. But I felt the need to get something off my chest.

my Gp referred me to a unit which specialises in neurological conditions and I was given a MS specialist nurse who I saw every 6 months, my neurologist discharged me into her care two years ago, she retired last year and was not replaced. So now I’m left without support!

My Gp always failed to acknowledge any symptoms as ms related so I stopped going to see her years ago with anything that I thought might have been symptomatic of ms, she described it a quiescent which in fairness it was relatively but because I started to feel myself deteriorating I finally told another dr at the practice who sent me back to a neurologist to get another MRI (I hadn’t had one in over 20 years) after some steroid treatment and three annual visits he discharged me into the care of my MS nurse, ok he wasn’t too know she would retire within a year and not be replaced. But I’m seeing my go later and I’m thinking should I ask if I can see another MS specialist nurse? I don’t actually know if there is another service near me.

If it were me, then I’d definitely ask my GP. It might also be worth contacting your neurologist’s Secretary and explaining the situation and asking if any alternative arrangements are being made.

In the interim, if you have any problems, then do go to your GP for another referral to see the neurologist.

As I said, this would be my plan of action, but I am quite new to having been diagnosed. Wishing you lots of luck.

Hi Dolly,

What a total bummer with regard to the retirement of your neurologist! As Flopsy says, its worth getting in touch with your neurologist secretary, since there is a real possibility that she will have been replaced. It’s also worth getting in touch with your GP to explain the situation - its not fair that you have been left without any support, so go straight for the jugular, and ask for a referral to a new neurologist. As to referral to an MS Nurse, I admit to being a bit baffled, since the relationship is usually very open ended in that you can contact them any time you feel the need to if you have any concerns or worries, and they should be able to help you sort them out. I have a named MS nurse who is available to me 5 days a week should I need to talk to him; I also see him 4 times a year regardless of what’s going on with me physically. Try getting in touch with your last MS Nurse and see if something can be done by way of a meeting at hospital or a home visit to see if he or she can help ( and they should be able to!)

Nia.x

Sorry folks maybe I didn’t really express myself well it was not my neurologist who retired it was my MS specialist nurse. When my neurologist discharged me into her care he would not have been aware but she had been planning to retire however I think he still would have discharged me as there was no further treatments available via the hospital.

I have not spoken to my GP this afternoon about this subject as I was receiving a new diagnosis I am now officially Type II diabetic so after examining my feet and giving me a pneumonia shot, discussing information of the further plans including, medication, retinal screening and diabetic education program there was no real time left.

she will however be seeing me again in around eight weeks time I think that might be an opportunity at that point to ask if there is any chance I can see an MS specialist nurse again, I know she will not refer me to a neurologist again unless I am clearly deteriorating.

why not contact your local M S Society and ask them what is the situation re m.s. nurses in your area.

That’s OK Dolly. I still don’t understand why you need a referral to your MS nurse from your GP though. Surely, your MS nurse should be able to be easy to contact without the need for any of that. I know the system works differently for people in different parts of the country, but I must admit I’m baffled! My neuro team never discharges anybody, even if they dont hear from them for a very long time.

My MS nurse retired and was not replaced so the agency she worked for does not have any MS specialist anymore. My neurologist discharged me because there was no further help he could offer and I had a MS nurse at that time, which he considered more appropriate for my needs.

Hi Dolly, Have you tried contacting your Hospital’s Neurology Department to see if they have specialist nurses? You could also try ringing the MS Society helpline, too, they may be able to help you find a nurse. I hope something works out for you, Nia.

Hello

You should certainly have some neurological support. The neurologist needn’t have discharged you, regardless of whether you had an MS nurse. There are always times that people need an appropriate doctor’s advice regardless of their current disease activity. For example, as you have progressive MS, there are likely to be times when you need help with specific symptoms, a change of drugs, eg neuropathic pain meds. An MS nurse, however good cannot prescribe for you.

In the absence of even an MS nurse, there’s no reason why you should be having current changes in your MS to be re-referred to the neurologist. But if neither you nor your GP see the need for that, you certainly should be given access to an MS nurse if indeed there is one. Your GP in fact may not even know if there is an MS nurse. In which case referral back to the neurologist would be appropriate.

Sue

Hello, I was diagnosed last year, and I am in one of the reputable hospitals in London. There are ms nurses but they are so overloaded that when ever I have a problem I can’t reach them . The telephone number is not answered due to shortage of stuff. I have to send an email which will get answered about 30 to 40 days later. I have been told i can contact my doctors secretary so she can raise the issue with nurses so they will get back to me earlier. This also takes about 4 -5 days and once no one contacted me at all. I was told if there is an emergency I should go to a&e of that hospital. About a month ago I had a completely new symptoms dizziness, Blurry eye,brain fog and extreme pressure in my head. And probably the pressure in head was the worst I felt my head was exploding. After tolerating it for few days I went to A&E after waiting there for long time the nurse told me I could wait a bit longer to see a GP or a general neurologist but no one could really help me. Anyway long story short I have never really an ms nurse I have to follow everything myself from blood test, appointments to prescriptions and… I am in no way ungrateful for the work that nurses do, but they are extremely overloaded and patients are left with very little support. I am in early stages so I can still manage (with A few tears) but surely there should more help available. Good luck

Our MS nurses left and I was w.o. one for over 2 years - funding cuts blah blah… Only now have we got another. Ask the GP to refer you to the MS nurse or the neurolgy dept and say you wan the support they can offer.