Portland here we come!

Unit and concord in multiethnic team, all hands together

WPC is the World Parkinson Congress and this year marks the fourth of these meetings. The first took place in Washington in 2006, moved to Glasgow for 2010, to Montréal in 2013 and this year comes to Portland (Oregon – not Maine). And there is every indication that this meeting will be the biggest yet.

So why the fuss? What’s the big deal about a meeting that occurs every three years?

Certainly other meetings take place more frequently. MDS, held a few weeks ago in Berlin, is just such an example. A big meeting with cutting-edge science and a wide international attendance. In many respects an extremely good meeting. So what sets WPC apart from that?

The answer can be expressed in a single word. Patients.

The key distinguishing feature between MDS and WPC is the presence of patients. Whereas MDS is fundamentally a closed shop for the medical profession, WPC doesn’t simply tolerate patients. It welcomes them with open arms. Because its visionary committees (and I’m proud to serve on one) recognise that a conference without patients is missing something critical. It’s like the sound of one hand clapping.

Let me explain.

I used to be a research neuroscientist – I headed a laboratory looking at dopamine in the basal ganglia in relation to Parkinson’s before I was diagnosed myself with the condition in 2006. The first Parkinson’s patient I met was myself. Despite 23 years in academia, digging deep into the mechanisms that controlled nerve function, I had somehow managed to avoid actually meeting patients who had the condition I was studying. I was so obsessed with the minutiae of individual nerve cells that I somehow failed to register that nerve cells make up brains and brains make up people.

Sure I knew that Parkinson’s was all about quivering, slow-moving, expressionless people. After all I taught this to medical students for a couple of decades. But somehow I never made the connection between nerve cells under a microscope and real, living people with Parkinson’s.

It would be nice to believe that this was merely a lapse on my part and that my particular ivory tower was not representative of the scientific population. Sadly, I think that’s untrue. Having spoken to many scientists who work in the field of Parkinson’s, surprisingly few have direct contact with patients. Unless your research is directly patient-based, there is often no direct reason for contact.

And here is where the WPC comes in. At Glasgow in 2010 and Montréal in 2013, I met many of my former neuroscience colleagues. Without exception, all were excited by the presence of patients. For many this was their first experience of patients and the scientists were fascinated. Not just by the number of patients but by the breathtaking variety of symptoms.

The scientists hugely enjoyed meeting the patients. But what of the physicians? How did they react to seeing patients in their hundreds?

Well, to be honest the reaction was mixed. Some of the older neurologists and geriatricians felt that the presence of patients was inhibiting. Perhaps they attended this conference expecting respite from patients? Hard to say. But for a significant proportion of the neurologists present (and especially the younger ones) it was a valuable experience. Here they were seeing patients in the wild, in their natural habitat rather than the artificial conditions of the consulting room.

And they learnt so much more. Telling patients to tap their fingers together, that mainstay of the neurological examination, is as uninformative as kicking the tires on a motor car. But seeing patients walking, talking and interacting tells the neurologists vastly more about Parkinson’s.

And the patients – let’s not forget them! Once the patients adjust to the language used, and the ways in which doctors and scientists express themselves, the vast majority are willing to join in. Sure, we sometimes ask silly questions or make inappropriate remarks. But don’t forget that we know as little about the medical world as we sometimes feel the medical world knows about us.

Let’s learn together. Increasingly, these congresses are providing insights into the condition that cannot be found when one of the parties is not there. Patients know that. Surely it’s time the medical profession did as well. it’s time to come to the party.

WPC – the sound of both hands clapping.

The World Parkinson Congress 2016 takes place 20 – 23 September.

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