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1st of February 2017
Most of us have reached another New Year and the significance of time is once again brought to our attention. For many it is a time to celebrate with our families and friends, for others it is a time line when they make promises to create a change in their lives, some spend it living on the street, others in a room with just their own thoughts for company and there are those who throughout the course of the year have experienced a loved one or more whose time has come to fruition on this earth. Time for them will expand with its sorrow and strangely seem so short for those they loved. I send my love to all in whatever place they are dwelling.

I was recently reminded of a thought provoking statement by Susan Sontag when she wrote:
” Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick.”
It made me think very seriously of recent and ongoing relationships with many Leukodystrophy families and how their kingdoms were being governed. It is apparent that there exists a hierarchy in the realm of those affected by a Leukodystrophy and there are far too many kings and queens who treat their citizens as subjects. They are often under the dominion of the medical monarchy and sometimes the dominance of the family and community disinterest. The affected can be recognised as either citizens or subjects. All are born equal.

There are those lucky citizens who are treated with respect from their first contact with a primary physician who shows care, concern and the honesty to admit that he or she has little practical knowledge of Leukodystrophy but understands from their medical training that it is a most unpleasant disorder and they commit to doing everything within their power to assist the patient and family to get the very best medical attention that can be accessed. The foundation of the success of this happening is embedded in the Primary Physician’s choice of Paediatrician, Metabolic Physician or Neurologist chosen for the family. This is the first “specialist” attention that they will receive and if both the patient and their extended family are treated with their full rights as a citizen, this specialised treatment will be very powerful in alleviating a great of pain for all those entering this unknown passage of life.

Its ensured success is always underpinned by the enactment of a Care Plan. This master strategy needs to see all the health caring contributors in one room if in a hospital and that they all know their responsibilities and as is often said they are all on the “same page” of this written document. In this room, we will have the General Practitioner, Paediatrician, Metabolic Physician or Neurologist), Endocrinologist, Gastroenterologist, Nursing Manger, Palliative Care Team Leader, Spiritual Leader, Occupational Therapist, Speech Pathologist, Ambulance Leader, Dietician and any other Speciality that is relevant to the ongoing loving and supportive care for our Leukodystrophy loved one.

I can hear some doubting that this can happen. Yes, it can and it did for my family and we even had the Mayor of the City we lived in at our meeting. I know that this can happen in a hospital setting and whilst there may not be 100% attendance it must have all those that will be involved at the beginning and those for the long term travail. I have never been to any football, baseball, tennis, basketball or any significant sports game that has not had all of the above mentioned there at the same time. It can and must happen across the globe and we as parents and medical providers are responsible for making it so. I know that it is currently happening in the kingdom of the sick for those treated as citizens.

Sadly, not all are that fortunate and many are subjected to diffidence and an uncaring attitude by their first primary physician and of course all the subsequent referrals are usually not much different in outcomes as the initial choices made for the family are jaundiced by ignorance and very often by the egoism of this medico. These are our poor subjects who must be freed from the serfdom of a system that is self-absorbed.

I have observed many, many families around the world with care plans that do not seem to be benefitting from them. Their Care Plan in fact has just become another Oxymoron to be added to a Google list. A Care Plan is not a document in a doctor’s draw, that is a file. A Care Plan is not a Statement of Intent, that is a wish. A Care Plan is a living active document that has all of its participants (signatories?) fulfilling their roles from its enactment. It changes and updates and motivates. It supports at all levels those who are part of it and sustains them. It is a creative commitment to Action from its inception.

We must fight very hard for these our rights as citizens and not ever allow ourselves be subjected to anything less than best practice. All in the kingdom of the well need to remember their dual nationality.

As we started this chat referring to time I am also aware of how little of it we really have and what we will experience with our share of it. A very wonderful English poet John Donne has always inspired me and one of his profoundly true comments I leave with you. “… any man’s death diminishes me, because I am involved in Mankind; and therefore, never send to know for whom the bell tolls; it tolls for thee...” 
Brendan Wyborn with his family
Copyright © 2017 Leukodystrophy Resource & Research Organisation Inc, All rights reserved. 

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Leukodystrophy Resource & Research Organisation Inc · PO Box 209 · CLONTARF BEACH, Queensland 4019 · Australia

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