Keeping the neuro informed


I have advanced MS, diagnosed in 1995. I am not on any drug to slow down progression, and never have been, just a bit of symptom management for spasms and sleep. Consequently I get an annual 20 minute chance to talk to my neurologist. This is not really enough time to talk through everything.

Despite my best efforts time runs out too soon and not all the questions I have written down are asked or answered. Also I have a bad memory and I’m likely to forget his answers. Yes he does write a short letter to my GP and I get a copy.

I get the feeling it is a tick-box exercise. Am I alone?

What do you actually want/need that you are not getting?

My experience thus far:

My neurologist is there to diagnose changes in my condition as I decline. Mine organises MRIs to see what’s happening.

Day to day MS Nurse or GP can refer me to the Community Rehab Team for OT and physio help. Or send me to the

local Wheelchair Services, or to scan my bladder and get advice from the Continence Adviser. Preventing infections is


I know I can always ask for social care funding from Adult Social Care - you can also get help with rise and recline chairs/beds

and home adaptations etc.,.

Carer’s Assessment can also be organised and Carer’s can ask for £500 pa for a short holiday break which is funded by

GP’s Surgeries.

These are the services provided that I have I’ve found out about as I have declined.

They have been helpful. I guess it depends what symptoms you have and what help you may need.

Have you had contact with your local Community Rehab Team?