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CEASED OPERATIONS: Spinal Network

Tuesday, February 05, 2019

Our Board recently reviewed our strategy and concluded that we have achieved the purpose of our formation in 2008 and that we should now CEASE OPERATIONS and let the spinal research community get on with the job.

The Spinal Network was established in 2008 with the financial support of the NSW government to:

• build connections across the spinal units in Australia and New Zealand
• promote clinical trials and other research programs, and
• fund early career researchers to help establish their careers.

Over the last ten years we have seen a marked improvement in the level of communication between the spinal units.  We have supported the establishment of four clinical trials, including the imminent establishment of the RISCIS trial in NZ.  These will now come under the oversight of the Australian Clinical Trials Alliance which was established a couple of years ago.  This year we established the Research Strategy Group which is now set up on the SRI’s SCoRH platform.  We have funded several PhD scholarships and many travel grants in memory of Rosalind Nicholson over the last ten years – thus fulfilling our goal to support researchers, especially those in the early career stage.

Our research funds will now be managed by other organisations.  We thank our benefactors, the Estate of the Late Joan Hume, Kevin Hortle, the Nicholson Family Trust and Anne Cooper.

Our achievements would not have been possible without the hard work and support of several people.  In particular we acknowledge the enormous contributions of:

• Dr Tony Penna
• Professor James Middleton
• Professor Louise Nicholson
• Professor Michael Good
• Professor Sarah Dunlop
• Emeritus Professor Phil Waite
• Dr Stephanie Williams

Since making the decision to cease operations our directors, Associate Professor Peter Bragge, Professor Alan Cass, Adjunct Professor C. Phillip Morris, Professor Mary Galea, Jonathan Tang and Soraya Mir have resigned, but before doing so appointed Chris Bertinshaw and Leah Campbell as directors.  They, together with Dr Ralph Stanford who remains Chair, will oversee the company for the time being.

Our team have worked closely together over several years.  Thanks to Chris Bertinshaw our CEO who has worked tirelessly advocating for funds for research and for an improvement in services for people with SCI.  Our office manager Leah Campbell has maintained the office, carrying out most of the requirements to support our activities and quietly held it all together.  She is an administration genius.  Dr Cindy Kok has offered wise counsel and helped develop this newsletter into a very highly regarded resource.

Government decision makers have the enormously difficult task of allocating scarce resources to support citizens in need.  People with spinal cord injury have significant challenges each day and deserve better support.  They are however very resilient people.  They get on with life and their achievements are championed in the media.  There is a perception that their only problem is that they cannot walk.  Government decision makers do not see the ulcers and cysts, the bladder and bowel challenges or the sexual dysfunction.  The fact that their autonomic nervous system is impaired, leaving body temperature regulation limited is just never talked about.

Health administrators argue that all the data needed to see what people with SCI endure is captured in existing data systems.  While they are correct, the data is not identified as belonging to people with SCI.  We have advocated strongly for a whole of life data registry to capture and link this data to SCI patients as well as collecting data about activities that enhance their health.  SCI researchers have lobbied government for about 40 years for a registry without success. In that time, the Australian kidney registry has been quietly collecting data which has led to changes in clinical practice to the point that nephrologists in Australia are achieving the world’s best outcomes for kidney disease.  It’s time we had a SCI Registry!

We trust that the clinicians and researchers around Australia and New Zealand will be able to put aside their personal interests and continue to explore ways to make life better for people with spinal cord injury.



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