‘PERSON-CENTRED PARKINSON’S CARE PORTRAYED HOLDING STILL, TOGETHER’
Thieme Stap, Richard Grol, Jur Koksma
Now that I have received the book, flip through before I start reading I see myself in a mirror.
You have photographers and photos, but you also have artists and art. These two now fall into place, intertwined with beautiful conversations between two special people, simply because of who they are, ‘grata persona’.
It becomes even more art when the conversations are captured by the photos, interwoven with each other.
Reading the book gives me the feeling of reading stories of ‘my new family’. That’s one of the ‘Silver Linings’ that Parkinson brings with it, new contacts, acquaintances, friends that suddenly crossed your path.
So say family, and that worldwide!
I am of course very honored to be able to review this special book.
Hans van Geluk
Also very curious about how the book is, hope just like the beautiful spin-off video ’10 Million Parkinson’s in the World’
The images in this spin-off film are accompanied by a beautiful song sung by the Dutch singer Sofia Dragt.
Even though we have a shitty disease, we don’t give up, help each other where we can and we are unstoppable. And not only us, but also all our loved ones, the scientists, specialists who also help us where they can.
They are also part of this special beautiful family, which I have a warm heart for all of them.
This book also clearly indicates that together we do want to and can stop Parkinson’s disease.
And that with everyone at their best, we are One, we are United!
The book
clearly gives a picture of that family, with each other one on one or sometimes in groups, in addition to the diagnosis of Parkinson’s, it gives you the feeling that you are not alone.
Join forces together and go for it, no matter how painful and difficult that is sometimes. In my experience, I get strength from this book, it gives me warmth and affection. But also connectedness, that is what person-centered care should stand for.
Parkinson’s is a very complex disease, sometimes elusive. There are various complaints, limitations, wishes and needs in people with Parkinson’s disease. With Parkinson’s disease, the person in question, but also his loved one, has to make adjustments every time.
One person sooner and faster than the other. I don’t think this is always emphasized clearly in the book.
There is still a great deal of uncertainty about how this care can best be given concrete form in daily practice. There are many faces of Parkinson’s.
Nevertheless, as a Parkinson family, we are a big buyer because of the continuous improvement of Parkinson’s care. Thanks to the many specialized care providers of ParkinsonNet.
Although this approach is becoming an increasingly important part of healthcare professional training, many professionals still lack a clear understanding of what this care should entail for their patients. Often due to a lack of time, which in turn is caused by pressure in the healthcare sector.
Yet the writers and photographer show through images and storylines that this book is based on person-centered care. Something that contributes to person-oriented care through imaging, both photography and video.
Precisely by projecting this photography and storyline between the person with Parkinson’s and one of his many caregivers in this book, you can clearly recognize the form of learning that can be important for other healthcare disciplines.
The writers and photographer organized 21 sessions in which someone with Parkinson’s entered into a conversation with their care provider (neurologist, Parkinson’s nurse, specialized physiotherapist or occupational therapist, company doctor, etc.). I think the great thing about these encounters was how people could exchange ideas with each other, while in the literal and figurative practice this cannot happen quickly. Certainly with the neurologist there is not a lot of time for this. They spoke in depth about how they think about person-centered care, what they have experienced from each other and what they expect in the future. Surprisingly, everyone brought a personal object, which brought a different angle to the conversation.
The photos and stories are interspersed with a number of reflections on the themes in this book.
The book is accessible to everyone who has to deal with care, but also to people who are interested in art and science.
An eye-opener of how contacts between people with a condition and healthcare providers can be improved. Of course we are on the right track in a number of disciplines such as the IVF department and ParkinsonNET, but like everything else, this is also subject to improvement. Intended for people with their own Parkinson’s, their loved ones and caregivers, this book provides support, insight, reflection, understanding and, above all, solidarity.
Together on the way to that one goal, Parkinson’s out of the world and hopefully in the foreseeable future a new drug that really slows down Parkinson’s disease or better yet, can cure it. This together with the prevention that is so necessary.
Together we stand, together we fall!
In addition to providing the viewer and reader with an insight into the characters of people with Parkinson’s and their caregivers, the book also discusses what patient-centeredness (written by Jan Kremer, Glyn Elwyn) really means and how it works in the person -centered care (written by Thieme Stap, Richard Grol) today.
With this special book and project, the writers and photographer let us experience how they experienced it, that when people came into their studio, there was first a moment of scanning. Then came the art of breaking the ice and blending the characters, creating synergy between the person with Parkinson’s, the caregiver and the photographer.
Another interesting chapter entitled ‘What is here now’ is about how to look objectively. Based on a special example, which I will not tell you now, Jur Koksma explains what conscious looking and taking the time for this actually mean.
Two essential parts that a doctor must master in order to look really objectively at his patient. A good looking doctor does not focus on the disease, but on the person who is ill. Doctors who took part in ‘The art of looking’ discovered how their medical training determines how they look. That even their feelings play a major role in this, and that they project their own feelings onto their patients.
The third chapter, which like all other chapters is intertwined with the characters and their storylines, is about changing in the fall. Mieke Moor takes us along in her work as an organizational philosopher at Vrij Werk. ‘I had noticed something about the Parkinson photos: I thought they were ‘so vertical’. By that I mean that the position of both persons is usually standing, the bodies erect, the backs as straight as possible.
What happens, Mieke wonders, if a Parkinson’s patient falls? If he or she allows the shakiness. Can a new horizon (language) unfold in it?
Using her example, she shows that falling in the person with Parkinson’s can be trained in both the physical and mental side of the disease. To be able to let go of something that always gave hold (health, freedom of movement).
So ‘The Art of Letting go’!
Reinventing Healthcare: Using a New Integrated and Proactive Approach to Parkinson’s Disease as a Model
Bas Bloem and Marten Munneke
Describe how fast the population of people with Parkinson’s disease is growing and that the care of these people can be an example for other healthcare providers in other disciplines. Also how Covid, even though these were terrible times, has brought us new ways of communicating.
Challenges in today’s healthcare: The solution is not simply to work harder. We need to reinvent healthcare and develop alternatives to current pillar approaches that contain multiple imperfections.
Bas Bloem and Marten Munneke
The complexity of the condition is reflected in the fact that about thirty different professional disciplines can potentially provide meaningful support to affected individuals. It is great how the collaboration between different healthcare providers and people with Parkinson’s can find themselves in ParkinsonNET.
But ParkinsonNET is not yet complete. Hospitals should also be included in this. So the Parkinson Association and ParkinsonNET continue to work together to offer even better care and support to people with Parkinson’s.
ParkinsonNET is currently being rolled out in various countries, including the USA, Norway and Germany.
Parkinson’s disease as a model condition for health care design
Bas and Marten also hope that the design of ParkinsonNET can serve as a guideline and blueprint for other healthcare disciplines.
The book is part of a research project of the
Radboudumc Health Academy: Innovation as learning .
The team consists of Thieme Stap, Richard Grol (photographer) and Jur Koksma.
The book can now be ordered for the attractive price of only €24.99 per copy (including VAT, excluding postal costs).
Interested? Then click here
Review written by Hans van Geluk
23-01-2023
‘ I AM VERY CURIOUS ABOUT THIS BOOK. IF YOU’VE SEEN THE SPIN-OFF, THE VIDEO, IT PROMISES TO BE A UNIQUE, SPECIAL, COMPELLING AND BEAUTIFUL BOOK’
Hans van Geluk
“ Part of the artist’s job is to make the mundane singular, to project a different interpretation onto the conventional’
Sally Mann,
Hold Still: A Memoir with Photographs
Person-centred care is of paramount importance in most healthcare institutions. This is care in which the person is central and not the disease. Care tailored to the personal needs, wishes and preferences of someone who is ill is increasingly seen as a crucial element of good quality care.
Thieme Stap, Richard Grol, Jur Koksma
Thieme Stap is a PhD candidate at the Radboudumc Health Academy, working on the
PhD project Transformative Learning in Parkinson’s Care.
Richard Grol is Emeritus Professor of Quality of Care at Radboud University Medical Center
in Nijmegen and Maastricht Medical Center in the Netherlands.
He was also the photographer in this project.
Jur Koksma is Associate Professor at the Radboud University Medical Center Health
Academy, researching Transformative Learning in Healthcare.
Strong together for one goal: living as well as possible with Parkinson’s disease.
Hans van Geluk
I see this book as a handle for all care. I intensely hope that other healthcare disciplines can copy this ‘blueprint’
‘ On a chilly spring evening in 2001 I organized a meeting with ten couples with a desire to have children and fertility problems. As chairman of the department, I was curious about their experiences in our IVF department. I started this meeting thinking we were doing pretty well. However, the patients disagreed: ‘Our needs and expectations are not central, we feel like a number, we see care of high but also low quality, and we sometimes notice a lack of social skills among doctors. We have started a series of innovations in our IVF department, with the aim of organizing our care around the needs of patients.
Jan Kremer – chairman IVF department Radboudumc
It is the art of being together and making space. Space that we create by having an eye for what is here now.
Look, time flies, no time flew!
‘The Art of letting go’ is different for every person, especially for people with Parkinson’s. As different as the disease itself.
I agree with you Monique, seeing what you can still do with positivity, but also feeling the downside and seeing that it is sometimes too much.
It is precisely then that it is nice to gain understanding both at home and certainly also with your healthcare professional and to be able to discover a horizon again.
Monique Bosman, Hans van Geluk
I think this song from Mamas Gun fits this book, learning to let go, together, continue with who you are and beyond that …….
‘The Art’
Lyrics ‘The Art’
Behind these bright deceiving eyes
From the album
Behind these lips forever smiling
Lies the meaning of despair
Like a fugitive in hiding
Today I wish that I would find a way
To change the way I am
Then maybe it might still be yesterday
Before it all began
Now that the light is fading
This is the only thing I know
How to reach and how to touch and call my own
There’s so much I’m yet to know
In the art of letting go
Under dark December skies
Somewhere my happiness is calling
Like a sun that never shines
Solemn, sleepless till the morning
And so I live to fight another day
And see what I’ve become
I could live forever in a yesterday
Or I could turn away and run
Out of the arms of sorrow
Into the open arms of hope
Out of reach, out of touch and on my own
Time is all there is to know
In the art of letting go
The Life And Soul
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