access to DMT's - where to get information

I’m getting more alarmed at the number of people who do not know what the eligibility is for DMD’s.

Please do not rely entirely on the information given by your neuro or nurse and make sure you do your own reading. The MS Society Treat Me Right Campain highlights 6 out of 10 of us are not on medication we are eligible for (DMD’s and symptom managment meds). DMD’s may not be the right path for all of us but without having the right information we cannot make informed choices.

Please read the ABN 2009 guidelines and the NICE paper Clinical Commissioning Policy: Disease Modifying Therapies for Patients with MS (April 2013). This paper confirms what the eligibility is to access DMD’s and also the stopping critera for them.

It took me 12 months, 3 neuro’s and 2 nurses before gettng Rebif approved for my CIS. In the end it went to the specialist commissioning pharmacy lead who confirmed I was eligible all along. Worryingly none of the neuro’s or nurses I came across seemed to be aware of this. Nor did my local MS Society branch for that matter.

I’m not at all suggesting ignore professional advice but the more we know the more control we have over our care.

I often wonder is the eligibility for DMDs is it based on the patients best interests or the NHS budget !

Moyna xxx

Bumping this post up.