In the spotlight

Interview with Recognition Award recipient, Mr Piet de Kleijn

At the EAHAD 2019 Congress, in Prague, Czech Republic, we honoured two professionals for their work for and service to the haemophilia and allied disorders community in Europe and around the world, with the EAHAD Recognition Award for Outstanding Contribution to the Haemophilia and Allied Disorders field. One of the two recipients is physiotherapist Mr Piet de Kleijn, a current member and past chair of the EAHAD Physiotherapists Committee. We took the opportunity to interview him on his beginnings, his thoughts on the shape of the haemophilia field today, and his future plans.

You are one of the most experienced physiotherapists in the field and the progress made by you and your fellow Physiotherapy Committee members to set up your group and build a network of almost 300 specialists in just three years is very impressive. What got you interested in the beginning?
What got me interested was the need to make physiotherapy visible in haemophilia care. Implementing basic physiotherapy started through the WFH using the “Train the Trainers’’ principle. We made progress, but it was also challenging to try to implement something on a global scale. I said to myself: “if it can’t be done on a global level, then more likely it can be done in Europe as a start”.


But visibility alone is not enough without a body of knowledge. The body of knowledge in physiotherapy in general is too limited, but this is especially the case in rare diseases like haemophilia, von Willebrand disease, and other haematological disorders with musculoskeletal problems.


This is the where the value of the EAHAD European Physiotherapists Network lies. As the first chair of the EAHAD Physiotherapists Committee, I hoped to help establish a basic network in a reasonably short time. That was the most important task for me as chair. We extended the Physiotherapists Committee (a wonderful group) by including regional coordinators, ending up with a total of 18 people. Since then, we participate in the organisation of the annual EAHAD Pre-Congress Day.


If you do research on a rare disease, you often don’t have large numbers of patients to obtain statistically significant results. With the network, we can increase these numbers. My hope is that the colleagues coming after me, who are excellent physiotherapists and researchers, will enlarge this network and contribute to the creation of the body of research on musculoskeletal care of haemophilia and other bleeding disorders.


What made you interested to keep going and reach the level you have reached today?
Before you can solve any problem, you must gain insight into all its different aspects. In a rare disease, like haemophilia, physiotherapy should be considered an essential part of treatment from the beginning. This is not the case yet. I want to change this. I would like to take the field a few steps further. What keeps me going is the simple fact that research has to be implemented, and still today, basic physiotherapy is often not fully realised in European HTCs.


What question or challenge were you setting out to address when you started working in the field of haemophilia?
In the beginning, I was involved in the setting of the Netherlands. Here, physiotherapy is performed by local physiotherapists working in a front-line setting, with the majority of them only treating a single patient with haemophilia. This means that there are huge limitations in gaining experience. The challenge was to adapt my job to this Dutch situation: provide the Dutch physiotherapists with necessary information, assure regular communication, as well as give crucial feedback for any kind of question they might have.


What do you think will be the next step for physiotherapy in haemophilia?
Physiotherapy in Europe is very different in each country. The Survey (Scope of practice of haemophilia physiotherapists: a European survey), will shed some light on the European differences. From there, the next step would be to try to identify more physiotherapists working in the field and enlarge the network. A bigger network will also mean more patients represented and we need to reach what we call in research “power”. This way, we can facilitate joint research projects that can lead to scientific proof of the value of physiotherapy in haemophilia. The proof would not only show that physiotherapy “works” but that it does so in a cost-effective way. This can be the next goal of our group, with the support of the EAHAD Executive Committee.


What was your favourite aspect of your work when you were starting out and what is it now? Has your perspective changed?
Even though in a country like the Netherlands, patients have sufficient access to clotting factor, around the world this is not the case. This is what makes physiotherapy unique in its approach: physiotherapy is completely different in the Netherlands than in Indonesia, which I visit annually (WFH Twinning). This is my favourite and the most challenging aspect: you have to adapt to any given situation in order to help the patient gain access to everyday life. Physiotherapy is relative and its value is dependent on local situations, so not solely of the person with haemophilia.


If a patient has knee problems for many years, you have to see what you can do with this particular situation. The most important thing is to allow the patient to participate, to make their life as normal as possible. If a child cannot walk to go to school, then you need to see if you can help them reach at least the school bus. Because, the school in this case, is the gateway to finding a job and securing an income. It is the gateway to a normal life. Participation is the key word here. This is why I think functional exercise is so important, because you adapt the treatment to the habits, environment, and needs of the patient.


Could you share the proudest moment in your work as a physiotherapist? How did you feel when you reached that breakthrough point?
With 40 years in the field, there are a lot of examples that come to mind. But, one experience that was very significant for me in these past few years occurred during a WFH Twinning Programme with Yogyakarta and Solo, in Java, Indonesia. We met Dwiki, a young boy, 14 years old, three years ago. His mother was carrying him on her back all the time. We managed to procure a wheelchair for Dwiki and that was extremely important both for him and his mother. Now, both feel literally freer as she does not have to carry her son all day, and Dwiki felt relieved since he became more independent. Thanks to the wheelchair, they experienced a newfound sense of freedom.


About a year later, during a hospital assessment day, we saw Dwiki once again. He was very pale, seemed like he had a major psoas bleed and was experiencing debilitating pain. We went to his parents’ house. They own a “warung” (small family business). Dwiki was there, lying down on the floor. It was obvious that he needed to start doing some exercising. So, I brought the mother to the mattress on the ground, where Dwiki was lying, and showed her how to help him do the right exercises.


This was both a very emotional and poetic moment. When we provided the wheelchair, in a sense, we split them up. But now, we brought them back together. They need their individual lives, but they also need each other. That’s a beautiful thing. Eventually, I hope that he will be able to help his father at the small shop. This is another example why physiotherapy is important: because finding a solution to physical problems is linked to an active and healthy participation in everyday life, often one small step at a time.


You received the 2019 EAHAD Recognition Award for your contribution to the haemophilia and allied disorders field. The list of your accomplishments is long. Still you remain active. Do you plan on slowing down anytime soon?
This is an interesting question. I am now 64 years old and have around 3 more years before retiring. What I would like to do is to work still for another year or so and for the final two years, I would like to set up a project for small children with haemophilia. The focus would be to help them after their very first bleeds. Even though this is a more personal project idea, I am sure that my colleagues and friends from around Europe and of course the EAHAD Physiotherapists Committee would be interested in being part of it.


Do you have any advice for young and aspiring physiotherapy professionals entering the haemophilia field?
Be yourself, we have a profession which is truly beautiful. We stand physically and mentally very close to the patients and we collaborate with the whole comprehensive care team. Realise this and communicate with your entire team, the patient, and their family. And since most physiotherapists don’t work only on haemophilia treatment, implement this approach into all of your work.


Outside of your work, what gives you the biggest sense of accomplishment?
This is the easiest question. I am proud that my children grew up and are now successful and ready for society. I am very proud of their personal progress, especially if we consider how often I had to travel around the world for different twinning programmes. I am also proud of my second wife and her two children. We are a ‘’composed’’ family and it is always refreshing when they give me their opinion, because they offer a different perspective. My wife Patricia likes to accompany me during sessions and workshops; she notices patient-related characteristics which I do not. We are a perfect team and this is indicative of the fact that the persons with haemophilia or an allied disorder suffer not only from physical problems but mentally as well.