Hope you are all as well as can be!
I have been invited to an MS focus group as I was suggested by the hospital I am registered at. The focus group is directed at how they can improve the way they help people get started on disease modifying drug treatments and ways to support people when they are on treatment.
I have a few suggestions noted down so far, but I think to make the most of it by asking you guys for any more would be a good idea!
I would really appreciate any help!
p.s is anybody else from London going to this meeting?
Is it connected to this exercise? http://multiple-sclerosis-research.blogspot.co.uk/2012/10/royal-london-msers-outpatient-experience.html
Being a PPMSer, I can’t help regarding DMD use, but hope you get some decent replies.
Hiya thanks for the reply, I don’t think it is. I was asked by the national hospital for nuerology and neurosurgery, I think they just want to improve the services.
I take Rebif which is notorious for causing red blotches at injection sites.
I cope with this by following a routine of:
3 sites from Left arm, stomach, bottom, thigh one week, followed by 3 sites from Right arm, stomach, bottom, thigh the second week.
This means each site is only used once a fortnight so has a chance to recover.
Anyway to get back to your question - if those considering DMDs were able to share experiences from people already using them, then this practical information could be shared.
I think it is good that your hospital is trying to be pro-active and hope this is the type of info you are after.
I’ve noted those down, I’ll try get them across. They seem like really good points.
Thanks a lot!