How did chronic pain start for you?
For me it started with a fall from a piano stool when I wanted to grab something from a cupboard. After years of searching for a solution to deal with the pain, the pain clinic in Leiden pointed me to a course on dealing with chronic pain that was given at a training center in the Veluwe. I went there and asked my husband to pick me up immediately if all I would do was whine and cry about pain. But luckily it wasn't. It was like coming home. Many of the same problems, recognition and recognition. Actually the same thing that many people with chronic pain in our peer groups also experience. It turns out I wasn't the only one whose pain wouldn't go away. I also had fear about what would happen next and struggled with the misunderstanding about my pain.
During that course, we were asked if there was anyone who wanted to help set up a patient association for people with chronic pain. I then innocently said YES to that, a YES that I have never regretted. In April 1988, 5 enthusiastic people started the Pijn-Hoop Foundation, a patient organization for people with chronic pain, by people with chronic pain. A telephone line was soon established where people could tell their stories or receive advice on how to learn to deal with chronic pain and the misunderstanding that inevitably accompanies it. That misunderstanding was often experienced as worse than the pain itself. In addition, peer contact groups and a basic and follow-up course on how to better deal with your pain were established throughout the country. The courses were taught by experienced trainers and much of the good advice still applies. This still applies to the current training courses.
The then State Secretary received a note from us stating what we would like to improve. Time was also on our side, I must say. The government believed that patients should be able to participate in boards of research programs and projects in the field of pain policy. Money was made available there to provide training. Our board and employees have followed many of these courses and training.
What was and is the strong point of the Pijn-Hoop Foundation?
I think especially the personal attention and the listening ear. In addition, all our employees were trained through national training courses. At that time, we offered more quality compared to other patient organizations.
By the way, we still have those national training courses for our employees.
We have always paid a lot of attention to the search for new employees! But you've been hearing that lately from almost all patient organizations. There is a major shortage of employees at most volunteer organizations. People are quite busy these days and want to do small tasks, but do not want to commit themselves to a peer contact group for a number of years, for example.
Our group of employees was very involved and had friendly ties with each other. As a result, they remained and will remain active for Pijn-Hoop for years. We have been lucky with the number of loyal employees who of course also had and have a heart for the business. Between 1988 and now there have been many valuable employees who, despite their pain and the little energy they had as a result, worked very hard to bring the Pijn-Hoop Foundation to where we are today. We are getting older now. So it would be nice if new employees came along who wanted to take over!