Taking Charge

TonyI am not a doctor or a scientist and have no aspiration to work in these fields. When diagnosed with Parkinson’s in 2010, I had been working on a community development project in community health at the time and felt obliged to practise what I was preaching, i.e. that we need to own our heath and take responsibility for our ongoing wellness. How well I remember the ‘maybe/maybe not’ stage in my own experience. I’m not too bad. Maybe it’s not… At that point the key issue for me was choosing not to be the ‘object’ of professional service delivery. Owning my health at that point meant moving from ‘object’ to become the ‘subject’.

I had a lot of catching up to do. Another way to describe this is that a person with Parkinson’s needs to change their game and behave more like a stakeholder in the process, not a ‘service user’, a ‘patient’ or a ‘client’. Stakeholders need to show personal leadership, the key indicators of which are getting informed and behaving as the subject in relationships with others including health professionals.

Ron Paterson refers to the 21st century as the ‘century of the patient’ (Paterson, 2012, p. 9). It is therefore a good time to reflect and act on ways to increase our participation in the treatment process. Given that the symptoms of Parkinson’s disease are so specific to each of us, greater participation is likely to involve us in a journey that has a steep learning curve in the area of knowledge and skill.

How many of us still go to appointments with doctors without doing our own preparation beforehand? How many of us know about the medications we take and have an informed opinion on their purpose and how well they work for us?

If we are to make a change in the way we address health and wellness issues, we will need to find a way to structure and manage that change. I propose a relationships framework that we could use to shape our relationships with health professionals and develop our own contribution to that relationship. Such a framework will be driven by the key values that each party brings to the action in the middle ground between them.

How would this work? Understanding stakeholder behaviour can be complex but if we take it one piece at a time, it is doable. For example, preparing for meetings with medical professionals as a stakeholder could now look something like this:

  • Develop an agenda
  • I would like to discuss xx
  • This is what I have noticed about xx
  • This is what has been happening to me over a period of yy weeks
  • These are the key issues for me. I would like to change abc and do def

If your health professional operates with email, then your agenda goes to them before the meeting. When you get to the meeting, you start with your agenda and you are the chairperson.

This will involve doing some background preparation, not as an annoying Google ‘medical expert’, but as a specialist enquirer into the practical questions that you think about and are concerned about. As a stakeholder it is important to remember that the focus is on you rather than the condition. This is why we need to do the work on knowing ourselves on our own terms and where we want to go next.

There is a difference between the key values that you bring to a relationship formed with a health professional and the values that they, as professionals, bring to that relationship. Being aware of your own values in this situation is important. For example, autonomy or independence might be important to you. So might empathy and respect. If this is so, you are going to want a degree of acknowledgement of these values from a provider. If provider behaviour does not acknowledge your values of autonomy and independence, an impoverished relationship will result where information shared is generic and its application haphazard. When any transaction is separated from the relationship that frames it, the result is marginalisation. In these situations it could be said ‘I got some advice but I didn’t know what to do with it’.

I believe that productive engagement and relationship development can only occur in the space between you and the service provider if the provider behaves in a way that acknowledges your role as stakeholder in that shared space. When a professional works well with the patient as stakeholder they acknowledge the authority and responsibility of the person in that role to make the right decision given that they both bring important and different contributions together when they meet. To the extent that this is not happening currently, the greater will be the need to check that your side of the relationship is operating.

This is different from the ‘patient as object’ model. A critical issue is the quality of the relationship that is forged and maintained between the provider and the person with Parkinson’s. How that is done in detail in the wide variety of situations we find ourselves in is a topic for another time.

When people work together and the person with Parkinson’s is acknowledged as a stakeholder, with all its ownership of health and wellness connotations, empowerment for people with Parkinson’s more easily occurs. In the final analysis it is only when a relationship occurs between a person with Parkinson’s as stakeholder and a health professional that language around ‘empowerment of people with Parkinson’s’ makes any sense at all.

Paterson, R. (2012). The good doctor: What patients want. Auckland, N.Z.: Auckland University Press.

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