7th of October 2020

Parkinson’s in your heyday

Co-creating care for PwP in the prime of their lives

We want to co-create a place in healthcare, especially for PwP in the prime of their lives, where they never feel alone with their questions and needs | Dr. Bart Post 

When I was first allocated to my neurologist dr. Bart Post, I didn’t have the faintest idea that I had just won the lottery for the most passionate neurologist in town. In the aftermath of digesting a Parkinson’s diagnosis, luck simply wasn’t the first word that came to mind.

More than two years later, I can say that I am. Lucky.

I am lucky to have a neurologist who:

  • stuck out his neck several years ago and got funding for a project to co-create care with people with Young Onset Parkinson’s Disease.
  • pushes the borders of the system the moment it starts to behave as if it exists for itself instead of for the goal it was created for.
  • recognized me, not for having Parkinson’s, but for having talents to contribute to the Parkinson’s community.

I still don’t think I’d want to trade with you, but tell me:
How has care been created in Radboudumc, together with the PwP in the prime of their lives? And are there any concrete results you could show me? 

Good question. When I got involved to help get this project back on track, I wanted to know that myself too! To really get into it, I visualized the story, recorded from the mouths of Dr. Bart Post and Xander van Ruissen. You can watch the result in the video below.

Parkinson’s in your heyday. Part I.

Parkinson’s in your heyday. Part II. 

Wow, those are very concrete results that have been achieved. For people who skip the movies, could you summarize what is the main message?

I can best use the words of Bart – who outlines the problem – and Mark – to sum this up. Xander and Dorien’s mind map illustrate their words. You can see all kinds of areas a Parkinson’s diagnosis in the prime of your life all has an influence on.

See, Parkinson’s is a nasty disease that raises a lot of uncertainty, especially when it affects young people. Parkinson’s is never a medical story alone. It also impacts people, for example, in an economic, relational, psychological, and social sense. Even though you will probably be able to live long with Parkinson’s, what will the quality of life be? How long will you be able to do your job? For how long will you be able to be a good partner? What about your role as a father or grandfather? Are you going to avoid the outside world or will you stay socially active? These are questions people with Parkinson’s disease struggle with | dr. Bart Post in an interview (in Dutch) back in 2017

Do not treat the disease, but the impact the disease has on someone’s life | Mark Douwma (Mark received his Parkinson diagnosis in 2011 at the age of 41).

Beautiful… And how are you going to proceed?

The good news is that a group of patients and healthcare providers are eager to continue with the co-creation recipe that has been patiently waiting since 2017.

I even understand that this group has already started?

Yes, it has. On the 22nd of September, a group of care providers and people with Parkinson’s disease from the previous and upcoming project came together. There were 16 of us in total.  Together we talked about the why, the what, and the how of the restart. The entire harvest can be found here (in Dutch though). A condensed version in my own words can be found below:

The sentiment that prevailed among the participants of the previous co-creation project was unanimous:

It was great, we achieved a lot in a short time, we learned about what works and what doesn’t work as well.

But most of all: it’s not finished yet! A lot of energy was released at the time in working together towards the same goal.

The motivation of the newcomers lies mainly in the longing for this feeling of togetherness. Working together, sharing information, showing each other the way in a cluttered forest. Connecting what is already there with each other. So that – as a person with Parkinson’s disease – you can unshrink again.

Patients, their environment and caregivers need insight into and understanding of the impact Parkinson’s disease has on a (young) life. Xander’s “petals” can be so useful for everyone! | Simone Rensen 
Co-creation of care should mainly lead to demand-driven care. A treatment that focuses not only on the physical symptoms but on the entire context in which a person lives and functions. In this respect, care providers rightly noted that a person who starts his or her Parkinson’s career often does not know what his or her question or need is yet. To uncover meaningful questions the gap between the caregiver, the person with Parkinson’s disease and his/her environment has to be explored. Co-creation is giving each other the right tools to fill in the gap together. In filling in the gap, we depart from the specific needs of people who have been diagnosed with Parkinson’s disease in the prime of their lives. We do not want to treat the disease, we want to treat the impact that Parkinson’s disease has on various areas of the life of a young patient and important people around him or her.

In order to match needs and supply, a number of possible ways and examples was exchanged:

  • Exchanging and translating knowledge
    • There is a need for findable, validated information that is presented in an understandable way, with someone who feels responsible for it.
    • Linking, recalibrating, and translating existing knowledge for the younger person with Parkinson’s disease, also for the illiterate.
    • Low-threshold information about scientific research (participating and reading along).
  • Exchanging contacts (peer and expert support) 
    • Creating an overview of meeting places such as Yopper’s cafes, social media channels, make Tuesday the day for visits to the clinic for the younger patients (increasing the chance they meet).
    • Creating an overview of courses (Parkinson Vereniging) and meetings.
    • Sharing initiatives of peers (blogs, ParkinsonSport.nlParkinson2BeatHeldenonTour, etc.).
    • Creating a central entrance for activities/sports: findable so that people will actually go!
    • Creating a central entrance to meet peers (a portal where you can find like-minded people with search terms or via an app (Pinder)).
  • Mapping and recalibrating healthcare offers
    • Recalibrate the role of healthcare professionals and patients and further develop the role of the personal coach (Parkinson’s nurse).
    • Use Xander’s flower (and personalize it) to provide insight into the areas of life on which Parkinson’s disease has/can influence.
    • Map existing care offerings and put new care offerings (e.g. Parkinson’s and pregnancy, children as caregivers, etc.) on the map.

According to the attendees, a clear figurehead, a pioneer, 1 website, 1 logo, 1 brand are necessities to be able to walk the talk.

Another thing is that success motivates! How can we make sure that we pursue goals that are achievable within a relatively short period of time?

These course holders mainly follow from the experiences of the previous trajectory (expressed by Marleen van Klingeren (in Dutch)):

  • We look from a human perspective
    We look from the point of view of the human as a whole and not from the point of view of disease. Explicit attention is paid to the entire network, such as family, employer, club life, and so on.
  • We do it together, as equals
    Caregivers and experience experts (people with Parkinson’s as well as their partners, parents, and children) work side-by-side. This means that caregivers and experts by experience both own and steer the solution, instead of evaluating what has been thought up by others.
  • We use everyone’s qualities
    Above all, we look at what is possible and facilitate taking control of areas of life where possible.
  • We are a learning community
    We continuously evaluate whether what we do will get us where we want to be. Periods of ‘not knowing’ are welcome. This eventually benefits quality.

The next phase

That is a rich harvest. And what is the next step? 

The next co-creation meeting is planned for November 25 from 4:00 PM to 6:00 PM. In a digital form, given the latest corona news. Everyone who was there on September 22 invites someone from his or her network so that we make the group larger organically. We hope that after this meeting we will have a group-prioritized overview of projects we want to work on.

In any case, the date has been set and the program is being worked on.

You mean: To be continued? 

Exactly that : -) Just not by me personally for now. I currently need all my energy to keep a number of other balls in the air, such as another major project, for which I (and others) received a grant. That project started on October 1st.

Aha, OK, understandable. To juggle with Parkinson’s also means to choose.

But suppose that I want to hook up, how do I do that?  

Currently, this project to co-create care is only for people with young-onset Parkinson’s in the Netherlands. But if you have input, feel free to leave a comment! I’ll make sure to reply or forward it to whom it may concern.

OK, I will. 



Want to know more? 

  • See the blog at the Parkinson’s Foundation about Bart Post and his work on co-creating care for #heydayPD so far.
  • Have a look at the article about Young Onset Parkinson’s Disease which neurologist Bart Post and patient Xander van Ruissen co-authored: Post, B.; van den Heuvel, L.; van Prooije, T., van Ruissen, X., van de Warrenburg, B., Nonnekes, J. (2020). Young Onset Parkinson’s Disease: A Modern and Tailored Approach. Journal of Parkinson’s Disease. https://doi.org/10.3233/JPD-202135

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