4 May 2017
By Deidre Mackechnie, CEO - Multiple Sclerosis Australia
(pictured - Andrew Potter)
When Treasurer Morrison hands down the budget next week in the people’s house, there will be group of more than 23,000 people with an acute interest.
I speak of Australians with Multiple Sclerosis (MS), the debilitating disease of the central nervous system.
MS is the most common chronic neurological condition affecting young adults in Australia.
- The average age of diagnosis is between 20 to 40 years old
- 75% of people diagnosed are women
- There are more than 23,000 Australians with MS
- The total cost of MS in Australia is $1.04 billion per year
- $500 million is due to lost productivity
- Replacement cost of informal care provided to Australians with MS is $125 million
- 50-80% of people with MS cease to work full time within 10 years of diagnosis
- Australians with MS pay $78 million per year out of their own pockets for medication and treatment
Now, what people with MS need is very simple.
Sufficient funding to find a way to stop this disease, something that is within the grasp of Australia’s scientists and researchers.
And in the meantime, they need Australia’s excellent health system to provide a comprehensive and coordinated approach to help them to better manage their chronic condition.
They need to be diagnosed and treated as early as possible to minimise disease activity and reduce the progression of their disease.
And to have ongoing specialist care and support to reduce the impact on the healthcare system by minimising the need for crisis interventions.
And so, when the Treasurer stands, people with MS will be watching for the funding to reduce the impact of MS on the individual, their family and carers and on the disability and aged care sectors by slowing the progression of the disability and enabling them to stay in employment longer.
Watching for funding to reduce the impact of MS on the healthcare system by decreasing presentations to emergency departments, reducing hospital admissions and length of stay and reducing the burden on GPs and Neurologists.
For the Commonwealth’s plans to improve the quality of life, health and wellbeing of all people diagnosed with MS.
And for the funding to support and advance research to stop MS.
Multiple Sclerosis Australia has called for funding for a pilot project so all people with MS in Australia have access to the care, support and advice provided by a specialist MS Nurse.
A 2015 UK study showed that by increasing specialist MS nursing hours per week, and implementing a care pathway in the emergency department people with MS spent substantially fewer days in hospital.
What was 2,700 bed-days per year became 198 bed-days per year over a five-year period.
This is extraordinary evidence which cannot be ignored.
The establishment of this pilot project will ensure a career pathway for the MS Nurse specialist is well established and sustainable into the future.
Over the longer term just $1.4 million can create 10 MS nursing positions to help embed this vital change.
The 10 MS Nurse positions will be established in MS Clinics in geographic areas of need, based on MS population distribution and “hot spot” areas where gaps in service have been identified such as in Tasmania and Canberra.
In human terms what would this mean? Well consider Tasmanian resident Andrew Potter. Andrew was diagnosed with MS aged just 23.
A year into his marriage, the MS diagnosis came as a shock to both Andrew and his new wife, Jane.
Within six months he had lost sensation in the lower half of his body and was confined to a wheelchair.
Andrew explains what an MS Nurse means for him.
“For me, a nurse is vital for now and into the future. MS may well strike you at any time and have everlasting repercussions.
“I can work with my nurse, knowing that their expert knowledge will help me to better manage my symptoms and keep me well, help me to stay in work and play my part as husband and dad.”
We are hopeful that people with MS will be afforded this chance by the Commonwealth to, as Andrew says, do their part for themselves, their families, the community and our national economy.