You own your health; we work with you
If Parkinson’s Auckland were to identify and agree the 5 key things the Auckland organisation should be doing well over the next 5 – 10 years, what would they be? Clearly an important question. However, the approach to the question is even more important.
If the question is seen primarily as a professional issue there is every chance that the process becomes self-referential for the professional staff who would naturally provide important leadership from that perspective. The danger with this approach is that when working well, the person with Parkinson’s becomes a more and more passive receiver of services that are designed and delivered by others. In addition the measurement of the value of professionally driven services, where mainly professional standards are used, further marginalises the receiver of those services. For the person with Parkinson’s this means a loss in their ability to own and manage their health as a starting point for improving wellness.
Where the person with Parkinson’s owns and manages their health, the view of strategic priorities can look different. A key general difference is that the person with Parkinson’s is not the object of service delivery but its subject. In other words the person with Parkinson’s is a stakeholder in this process not a ‘service user’ a ‘patient’ or a ‘client’.
If the person with Parkinson’s is a stakeholder in the above sense, the role of the Parkinson’s organisation in relation to its stakeholders is different. It is not one of leadership in a hierarchical sense. It is primarily one of support. Seen this way, a funder also cannot be a stakeholder. Where a funder is regarded as a stakeholder, the funder’s agenda drives relationships and processes and the person with Parkinson’s becomes invisible or at best an object. Likewise, the government cannot be a stakeholder. Having said that, the difficult current reality is that these latter groups, to a greater or lesser extent, tend to assume and behave in the stakeholder role. The victim of course is the person with Parkinson’s.
If the membership of Parkinson’s Auckland were to take on this primary stakeholder role, a different type of leadership would emerge. It comes with the discipline of membership accountability which is not related to hierarchical authority.
If people with Parkinson’s reflect on ourselves as people and groups in the community in order to identify what’s important to us, what emerges is something quite different, i.e. some agreed strategic priorities for people within and across the Auckland region that relate to people owning their own health. This is not a shopping list of demands and wants. It is not even a list of needs. It is a set of strategic priorities that relate to the aims and objectives of Parkinson’s New Zealand but they are member designed and become member driven.
Going down this track requires a framework within which appropriate roles and relationships of all the parties to each other can be identified in a way that allows people with Parkinson’s to improve or maintain their wellness as they need to. When the primary stakeholder, i.e. us, starts behaving as a stakeholder, there are benefits for service providers inside and outside the Parkinson’s organisation as well. Internally, service delivery becomes relationships focused not based exclusively on performance or financial measures.
In this context, language around ‘empowerment of people with Parkinson’s’ makes sense. Where the service provider or the funder leads the stakeholder, fundamental disempowerment for people with Parkinson’s necessarily occurs.
Options for organising Parkinson’s Auckland therefore depend on a willingness of people with Parkinson’s to engage the challenges of a stakeholder role and participate with others in the development of leadership of this nature. There is no assumption that everyone is at the same level of readiness to act or willingness to begin with.
Unless there is a way to tap into the voice of the people of Auckland with Parkinson’s from the perspective of owning one’s health, it will be difficult to make a case for change in ways that address the diverse interests of the people of Auckland and show benefits for everyone including the staff of Parkinson’s NZ.
Author: Tony Spelman
Dated: 23 June 2014