Advocating for MS: Being a National Advocate for MS Australia

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.

4 comments

  1. What a fab thing to do. I had an almost identical experience to you last month in the UK and felt so frustrated. I know I need to do something about this but don’t yet know where to start. I’m currently battling the tiredness and brain fog that arrived with my second relapse but have put on my to do list that as I begin to recover I will try to take some action to advocate for improvements in treatment for those with MS. Thank you for sharing. X

    Liked by 1 person

  2. That’s great! I’d advocate for getting “enzyme modified” ingredients off the supermarket shelves, “lysolecithin” out of make up and products or o and products off shelves with interesterified oils. Is there a marijuana legalization push in Australia? Advocate for CNS lesions analysis of those using marijuana – there should be more frequent occurrences of lesions in those using heated forms of thc. Finally, I’d advocate for eliminating public consumpotion of DHA products that are processed with lysolecithin as the vehicle used to cross the blood brain barrier – these include infant’s formula, children’s foods with DHA, Pediasure drinks for children and on and on. I hope you can make a big difference in Australia and it will spread to the rest of the world. May the Lord bless and keep you in this position and always.

    Liked by 1 person

  3. Congratulations Astrid Knowing you and your ability to achieve the objective you strongly believe in, you will do a wonderful job as an advocate for MS Australia.

    Best wishes David >

    Liked by 1 person

  4. Congratulations! You’ll do a great job being that voice of advocacy for all MSers. You’ll be amazed with the tremendous opportunities this position will offer. As a citizen of the US, it’s important to me for patients to be educated, have services they truly deserve and need: DMDs, affordable medical/prescription coverages and support for management of this unpredictable disease. Looking forward to reading about your exciting venture! 🙂

    Liked by 1 person

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