So, some good news
As of March 2015, I am a National Advocate for MS Australia, the peak body for the disease in Australia.
I am remarkably happy about this, and I am looking forward to the role for all the usual reasons, the main one being the opportunity to make a difference. But if I am honest, that isn’t my primary motivation. My motivation is more personal: I have a crappy and unpredictable disease, and this is a way for me to take back a small measure of control, and perhaps even turn it into something of a win.
What does a National Advocate do?
There are around twenty National Advocates in the National Advocates Program. National Advocates work with the state-based MS Societies, community groups and individuals to help determine the annual priorities of MS Australia. Essentially, they channel the viewpoint and represent the experience of those with MS into the national policy platform.
The responsibilities of National Advocates include:
- Developing relationships with politicians and policy makers
- Presenting to parliamentary inquiries based on MS Australia’s policy platform
- Participating in media and issue-based campaigns.
If you have an idea, tell me
After 15 months, I have a few ideas about what I will advocate for.
As I wrote about in my last post, despite being a well known disease people with MS receive what (in my opinion) borders on negligent treatment in the emergency department (just because we may look well does not mean we aren’t in acute physical and neurological distress). I understand the reasons for this (MS is an unpredictable boutique disease, after all), but I can think of ways to mitigate this common feeling in patients and improve care during a relapse.
But what about you?
If you live in Australia and have MS, tell me your ideas, needs and wants. I don’t mean ‘a cure for MS’. I mean practical, fair ideas that address an existing problem. Something we can do something about, in other words.
And if you live in another country, tell me about any useful policies and programs you are aware of. Maybe we here in Australia can learn from you and make them work here too.