Neuromuscular Care Advisory Service

Hi

Anyone had experience with the service above and how it works? My wife has LGMD she was diagnosed some 30 years ago and never bothered with any followup. Her GP’s knew and she does get support through DLA with her condition and the home is well adapted. I’m fairly new, known her for 8 years and encouraged her to touch base with the Neuro dept at the local hospital as none of the OT’s that visit know anything about the condition and we’ve had 6 different OT’s in the last 6 years so no consistency and each time we have to explain what she has and how it affects her.
She got an appointment and he is looking into transferring her notes to see which form of LGMD she has as this was never done after diagnosis. He also referred her to the Neuromuscular Care Advisory Service in the area and we thought this would be useful in assessing her immediate and future needs with specific advice and help. We got a letter from them stating they don’t do appointments, and will only visit if we have a specific need, if so telephone the number provided but be aware the office isn’t manned. My wife left a message over a week ago, no reply. I can see from the area they support its difficult but I thought there would be some initial contact just to introduce what they do and how they help.

Anyone used this Service?

cheers
Alun