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121 Care provides support for people with a disability on the Sunshine Coast, South Burnett, Brisban [ ... ]

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Vale David Sullivan

I am sorry to advise that David Sullivan longtime committee member and past president of PwMS Vic Inc, and one of the longest serving MS Ambassadors, died peacefully in his sleep on Friday 13th January after an extended battle with cancer. David put a great deal of effort into the cause of people with MS and people with chronic disabilities. In addition to his work for  MS David was also a long term member of the executive committee of Australians for Disability and Diversity Employment. David was a truly gentle man and a close personal friend. He had lived with MS for nearly 30 years. He will be remembered as someone who put aside his own trials to focus on working for people with MS.
 
Nigel Caswell - President PwMS(Vic) Inc.

 

Nigel Caswell President 25pc  

 

 

 

 

 

I hope you have all had a good time this festive season and that 2017 brings you good luck. In November, we held our Spring Seminar which focused on the NDIS (National Disability Insurance Scheme) which is now being rolled out across Victoria.  We had an excellent presentation provided by Kim Hamilton (Business Development Manager at MS) in which she discussed how the NDIS is really working; what has been learnt from the trials, what should people in the roll-out areas do, and what support can MS offer.  Kim was very positive about the experience gained so far but it was clear from her presentation that getting onto the NDIS is a complex process and many people could benefit from getting expert advice when the time comes.

So, I suggest that when the NDIS is rolled out in your area it is worthwhile finding out what support MS is able to offer.   And it offers quite a lot; for example MS can provide you with advice and assistance with your application and can help you appeal if you are unhappy with what you are offered and if you have been granted a package then MS can help you implement it and manage it.  For more information go to MS Connect: Freecall 1800 042 138, or Email msconnect AT ms.org.au.

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Are you planning or anticipating surgery in 2017 if so it can be important that you check with your health insurer how much the surgery will cost you.  Don’t be like a friend of mine who went ahead with an operation only to find out afterwards that her insurer would not cover it and she was left having to pay the full cost. Your surgeon can tell you the insurance item number applicable to your specific operation and your insurer will be able to tell how much they will pay towards the cost.

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Are you a member of the Australian Longitudinal MS Study; if not I strongly encourage you to join.  The ALMSLS has put out an update for 2016 and here are a couple of extracts which will give you a flavour of the work which it does, and hopefully show why it is important that as many people with MS as possible are members:

The 2015 Medications and Disease Course Survey and 2015 Employment Survey

The analyses of both surveys have been underway for the last 6 months, with numerous papers already being produced. Importantly, a paper has been published showing that more people with MS seem to be able to stay in the workforce since the last survey in 2010, with women in particular, closing the gap between those employed with and without MS. We will now do some work, together with representatives from MSRA, MSA and societies to see how to use this data for advocacy and people with MS.  

The 2016 Lifestyle and Environment Survey

This survey has just closed, with the last of the paper surveys tricking in. The survey covered some very important aspects of how people are currently living that we have never captured before, including diet, physical activity, smoking, alcohol intake, sun exposure, vitamin D supplementation, things people may be doing to try and improve their MS, stressful events and comorbidities. It is hoped this survey will be instrumental in providing recommendations about which lifestyle factors most impact the wellbeing of people with MS. The survey has just entered initial processing, with analysis expected to begin in the second quarter of 2017. The 2016 Economic Impact Study – cost of illness This data will be used to give an up- to- date picture of the cost of illness of MS, something which is critical for advocacy. It also feeds into an cost-effectiveness model that is being created, to provide an independent model that pharma/researchers/policy makers can use to price products and examine the cost-effectiveness of an intervention.

The AMSLS will be advertising for new members early in 2017 so why not make that your new year’s resolution.    

Best wishes for the New Year- Nigel Caswell OAM

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