Forum

DMD and moving to a new area

Hi everybody,

I’ve just started a fix term contract in Devon, having been based in Medway (Kent) since before my dx.

I’m on Avonex which is delivered direct by Healthcare at Home in a refrigerated van. I really don’t enjoy the injections, but I do them because I really don’t want a relapse.

Now the dilemma - I want to continue to have the DMD, but I don’t really understand how the funding works. If I register with a new GP in Devon (and hence a new CCG), what happens to the Avonex prescription (which is currently transferred direct from the hospital to HaH)? Does the funding for it sit with me (i.e. on my NHS number) or with the Trust which first prescribed it? If I move to a new consultant in Devon will the new, local, Trust have to decide if they are going to pay for it or … ? What happens in 12 months when my contract is up and I might need to move again?

Please chime in with your experience of moving to another part of the country (205 miles away in my case) and the things to be careful with … I only have 2 jabs left before I run out so time is tight from my perspective.

The existing neuro team have suggested that I could continue to have deliveries made if I were to be able to have them delivered to an address in Medway, so I’m looking at that for the next delivery to get me into the new year, but then what?

Hello, fleable. The first thing that comes to mind is to ring PALS (Patient Advice & Liaison Service), at your hospital, and see what they have to say. Good luck.