10 January 2010


In New Zealand, there is the code of Health and Disability Service Consumers Rights which outlines patients rights when accessing health care. This states that within New Zealand, every consumer has the right to:

Be treated with respect;
Be treated with freedom from discrimination, coercion, harassment and exploitation
Be treated with dignity and independence
Be treated with services of an appropriate standard
To receive effective communication
To be fully informed
To make informed choices
To have support
To the rights associated with teaching or research
To complain.
The HDC Code of Health and Disability Services Consumers Rights Regulation 1996, retrieved from http://www.hdc.org.nz/theact/theact-thecodeclause2

In this entry, I would like the opportunity to discuss the relationship between an individual with ME/CFS and their General Practitioner. I want to keep in mind this code of conduct, because this is a good comprehensive list of expectations that an individual can realistically have of the medical profession. More importantly, I want to address an aspect which isn't clearly described in this code, and that is partnership.

For all patients, but especially those with illnesses such as ME/CFS, It is very important to establish and foster a partnership of trust, honesty, and equality with your doctor. This may sound pretty simple and pretty obvious to many people, but, in my own opinion, I feel it is a subject which is essential to the accurate diagnosis and successful management of ME/CFS. It is not simply about having a doctor who regards, or 'believes' in ME/CFS as a disease with a physiological pathology. It is about having someone who you can trust, share information and questions with, and someone who will ensure you understand at all times your situation.

Of all the people we associate with, often the most intimate is that which is between a doctor and a patient (outside of close family, of course). We are expected to share details and participate in examinations which require us to put a lot of trust in the Dr we work with. We regard Dr's as having a greater knowledge of the function and dysfunction of the human body and systems, and we have a lot of trust in this knowledge. Rightly so, of course, with student's graduating medical schools with loans which would pay off my mortgage AND get me a trip to the Kennedy space centre.

However, we bring equal knowledge to this partnership ourselves. We know what our experiences are, we know what our histories have taught us. We know what has or hasn't worked in the past, we have expectations of what we want to achieve through this partnership and we are equal and active contributors to the investigations into our wellness.

We also know what sort of attributes in people that we are most responsive to; some of us are purely objective and require black and white factual information. Others of us need more fluid discussions and conversations with the Doctor as we work together with them towards management of our symptoms. It is important to know what attributes you require from a doctor to ensure you can work comfortably, equally and successfully with them. Always ask questions if you don't know whats happening or what something means. Always discuss your fears and concerns and be honest. In essence, your choosing a person to work alongside you as you search for health and wellbeing, someone who has specific skills you may not have, but you as the patient, have knowledge and responsibility in this investigation also, and should not sit back passively in this process. For individuals with ME/CFS, taking on this responsibility can be overwhelming when brain-fog and fatigue challenge our ability to participate in the most mundane tasks. this is where it is often necessary to take a support person or advocate to appointments, to help with information gathering and sharing.

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