Poor people’s ParkinsonNet

The Dutch ParkinsonNet is an online platform for Parkinson’s care providers that evolved from a joint initiative between the Radboud University Nijmegen Medical Centre and the Dutch Society of Neurology’s ‘Movement Disorders Working Group’.

The concept is simple: build a comprehensive portfolio of healthcare professionals, provide and share knowledge and expertise, and organise events. The primary target audience is health care professionals, the secondary men and women with Parkinson’s.

Quality Parkinson’s care (regardless of whether that’s fragmented and split between neurologists, occupational therapists, speech therapists etc.) is a prerequisite for such a platform. Yet, even though ParkinsonNet is now relatively well known within the Netherlands, most patients don’t even pay a weekly or monthly visit to the site. If ever. It’s not necessary either.

ParkinsonNet costs money

ParkinsonNet costs money. Think people, offices, education and congress. For an idea of the associated price tags (the following figures have been extracted from the ParkinsonNet Foundation’s own financial statements): The 2014 Jubilee Conference alone cost more than 680,000 euros. Personnel costs amounted to approximately 57% of the total expenditure.

The main sources of income are health insurers (approx. 40%), healthcare provider subscriptions (12%) and healthcare provider contributions for conferences and education (approx. 30%).

It costs money, plain and simple. In prosperous and efficient Holland, money is no object. Although, arranging financing with insurers can’t exactly be a piece of cake.

The two prerequisites

Essentially there are two prerequisites for a healthily functioning ParkinsonNet: a Minimum Quantity & Quality of Care and Money. That’s how it operates. ParkinsonNet is obviously relatively easy to establish in Germany, Norway or via Kaiser Permanente (US healthcare company) in small, privileged slices of the USA.

We need a Bill Gates here

But imagine that you’ve got Parkinson’s and you live in Ethiopia. Or Venezuela. Bangladesh. Greece. Who’s going to provide your Parkinson’s care? The two prerequisites, Minimum Quality & Quantity of Care and Money are yet to be met. And digitisation is likely far from optimal. Not to mention the efficiency of society. The sad thing is; if you live in a ‘poor’ country, then chances are, you’ll never know that you’ve got Parkinson’s in the first place. And if you do, then there’s probably no adequate care or medicine.

The impact of 1 extra dollar

I wouldn’t like to relinquish any of the care and medication that I receive. Yet looking beyond our own affluent borders, to those countries where men and women with Parkinson’s receive nothing in the way of care at all, would certainly be a noble pursuit.
So, who fancies calculating the difference one extra euro or dollar would make to Parkinson’s care for a Dutch man or woman with Parkinson’s and then comparing it to the difference it would make to the Bangladeshi man or woman with Parkinson’s. We already know the answer.

Poor People’s ParkinsonNet

Establishing a Poor People’s ParkinsonNet would be an even more noble pursuit. For all those men and women with Parkinson’s who are tired of the pain, loss, stiffness, depression, tremors, and what have you. Who are even more tired of the fact that there are no meds, no occupational therapists, no neurologists, no nothing.

There are those who preoccupy themselves with whether their care is delivered by a power doc or a level playing field doc. Or whether they should do tai chi, mindfulness or boxing. And then there are those whose only preoccupation is whether they receive any form of Parkinson’s care at all.

These are the men and women with Parkinson’s who need a Poor People’s ParkinsonNet.