Until there's a cure ... there's care

MND Advisor talking with person who has MNDBy Joyce Schuringa, President, MND Tasmania

On 1 March nearly 70 people, including speakers and staff, attended the MND Health Professional Forum in Tasmania. A diverse group of people from Victoria and Tasmania attended and networked throughout the day – people who have MND, volunteers, neuroscientists, medical specialists and other health professionals, staff from other support and advocacy groups and from funding organisations, people working in public and private health, disability, community and other care and support services.

This was the first Forum we have held in the new funding era of My Aged Care and NDIS. In the past it has been relatively easy to know who to invite to attend as services for people with MND were linked mainly within the public and not for profit sector. We now look forward to finding and engaging with other service providers especially in the private sector and many that are new to MND.

A constant in this changing environment has been the support we have received from Palliative care services. When Dr Paul Dunne became the first Statewide Palliative Care Specialist in Tasmania he changed palliative care services to include people with MND and their families. He and his team formed a relationship with MND Tasmania over 20 years ago which has been continued and further developed by his successor Dr Christine Edwards.

We enjoyed a day filled with excellent presentations and learning. As the first speaker, Charles Smith shared his every day experience of living with MND. His personal journey includes the change in his mindset from an illness such as heart disease to MND which has such a different predicted outcome than his cardiac surgery. He spoke of the stress of meeting health professionals who had no understanding of MND and of the obstacles in the aged care system. He wondered about the future and who will be there to help him on the way.

Dr Helen Castley, (photo below) Staff Neurologist at Royal Hobart Hospital taught us Neurology at a level we could absorb and utilise to improve our understanding  of MND. She provided an update on current data,  medical management, medications and research and on the expanded team of Neurologists in Tasmania.

Sarah Solomon, Occupational therapist and Marian McCarron, Speech pathologist from Calvary Health Care Bethlehem, Victoria gave us practical guidance and information on effective assistance where there is no recipe or clinical pathway. MND is currently incurable but NOT untreatable. The role of the multidisciplinary team is vital for the person with MND, from managing 600ml of saliva per day to knowing which minimal home modifications will be required.

Dennis Lo, Speech pathologist, Independent Living Centre (ILC) Tasmania opened up the rapidly changing world of assistive technology (AT) and the enhancements it offers to the quality of life for people with MND and those who assist them. The MND Tasmania Communication Equipment Library hosted and managed by the ILC is a fine example of two local not for profit organisations working together to care for people with MND.

Dr Christine Edwards, Staff Specialist in Palliative Medicine, Tasmanian Health Service provided the whole of journey perspective on MND and the importance of a coordinated and well managed pathway of support in order to empower the person with MND to have control and make informed choices. Palliative care is a “Quality of life service” and early referral is essential to optimise the well-being of the person with MND and their family.

A panel of the speakers chaired by Jo Whitehouse, Manager Support Services, MND Victoria applied their expertise to two fictitious case studies which provided a great opportunity for general discussion, questions, answers and the sharing of ideas and emotions.

Eric Kelly and Alison Jones from MND Victoria explained the “go-to” expertise offered to everyone who has questions and needs related to MND and Kennedy's Disease. This specialised knowledge is shared by the MND associations in Australia and they described the MND Advisor and the Information and Resourcing services.

The Forum featured only a little of the breadth and depth of MND. We hope that relationships, work and practice will be changed as a result. We hope that more people now know where to turn when they have further questions that may arise about MND. We know that more Forums will be needed so look out for one next year.

Behind the scenes was the MND Victoria team who worked on this program for months and who came from Melbourne to present it to us. THANK YOU MND Victoria!

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