Did you go to this year’s PwMS Vic “Living with MS” conference?
If not you missed a real treat with three very good sessions The conference opened with a presentation from Sandra Walker General Manager Service Innovation at MSL who spoke about how MSL is responding to the growth of the NDIS. Sandra spoke about MSL’s focus on service to its customers and the information and advisory services it provides and the success that has been achieved advising and assisting people with MS through their entry to the NDIS and the negotiation of their support packages.
The next session presented by the always popular Professor Helmut Butzkueven on “Current and new treatments for Australians with MS”. He commenced by discussing our increasing knowledge about the cause of MS and then went on to discuss the new drugs recently released especially Ocrelizumab which he said is creating a great deal of excitement because it is the first drug to show a positive impact on primary progressive MS and because it attacks the MS in a different way to most other MS medications. He went on to speak about trials of anti-lingo drugs designed to facilitate the body’s natural ability to remyelinate nerves. Finally he spoke about “stem-cell transplant” treatment for MS; he emphasised this is a treatment not a cure and the MS often returns after 3 to 6 years. It is most effective for younger people with active RRMS and mostly ineffective for people with primary or secondary MS but he said there is reason for optimism because although the idea of growing specific stemcells which can repair parts of the brain is still science fiction we are now able to grow stemcells specifically for treatment of the cornea of the eye and maybe sometime in the future we will be able to grow stemcells for brain repair.
Helmut finished by emphasising the importance of our looking after ourselves:
• Have a health-plan
• Don’t smoke
• Get some sun and check your vitamin D
• Eat healthily
• Manage other medical conditions, and
• Exercise at least twice a week
In the third session, a panel answered questions from the floor about the NDIS. The panel comprised Kim Hamilton from MSL and two people, L.E. Ohman and Justine Martin, with MS who are on the NDIS. Some of the key pieces of information which came out during this session were:
• When the NDIS comes to your area it is essential that you prepare for your first meeting with the NDIS agency.
• Make sure you ask for all the supports you need; LE and Justine both emphasized the importance of having the services of a physio and an OT and gym or a personal trainer; and if possible have funding for a support coordinator included because managing your package can be complex.
• Concerns were raised about the Mobility Allowance and questioners were reassured that although the allowance discontinues under NDIS packages the associated healthcare card will continue This final session of the conference finished with a reminder of the services offered by MSL to help people with MS to navigate the NDIS; MSL runs explanatory workshops in areas where the NDIS is being rolled out and provides tools to help you prepare and can provide advice and support during the negotiation of your package, or to help you appeal if you think package is too miserly.
• Finally, when you get an NDIS package MSL is registered to provide support coordination to help you manage your package providing you have funding for a coordinator.
This was a very successful conference; more than 100 people attended on the day; in fact, so many people wanted to register that we had to close registrations. However, the conference was video-cast live and we know many people watched it on-line. The video is still available and can be accessed via the PwMS website at http://www.pwmsv.net.au/portal - go and have a look at it.
Nigel Caswell OAM - June 2017