Life With CRPS In Europe With The RSDSA Board
By RSDSA Board Member, Ilona Thomassen
What is it like for people living with CRPS in Europe? Ilona, a member of the RSDSA Board and of the Dutch Patient Society, addresses some of the similarities and differences between CRPS in America and in Europe. While some approaches are similar, some are quite different. What surprises you the most?
I am writing this blog from the other side of the earth, in Europe and, more precisely, in the Netherlands. There are also a lot of CRPS patients here. There is a patient’s society to [help] inform patients, to support them, and to organize meetings. I have been the chair of that organization for many years and there are about 1800 members, 40 volunteers, and a board of 7 individuals. Our society started 30 years ago with 4 patients and Prof. Goris. He was one of the very few in the Netherlands, and maybe worldwide, who took CRPS very seriously.
How did I get into contact with the RSDSA? In 2003, we wanted to organize our first congress for healthcare professionals, especially physicians. We had never done that, so wanted to learn about this kind of congress and there is no better place to learn then by the RSDSA. They had a lot of experience. So, I went to Tampa to look at their congress in 2002. I learned a lot and was not nervous anymore about the organization of our congress. I met Jim Broatch, Mary Beth, and some other volunteers who all are still at the RSDSA. I left with a lot of information and contacted some speakers, such as Prof. Baron, Prof. Birklein, and a psychologist. Our congress was a big success.
After a few years Jim and Dr. Peter Moskowitz came to the pain department in Rotterdam to talk about the 20-years research [study] of CRPS patients. I was also invited to attend that meeting. I do not remember how that pain department got involved with this research, but I had some contact with Peter and Jim afterwards. In the following years, the RSDSA and my organization were involved in the Bath Consortium and the contact got more intensive. We saw each other in Chicago, Zürich, Bath, and Amsterdam over the next few years. One day, I got an invitation to be a member of the board. I fully agreed and there is now a telephone meeting every 6 weeks or so.
In the beginning, it was quite shocking and impressive to get the inside information of the RSDSA. Shocking was the amount of work that was going on. Impressive were of all the activities RSDSA runs as an organization; the meetings, the peer-to-peer contact, the website and all other informational sites, their political activity about medication and SH, and raising money, and more. It was a little bit overwhelming (no not a little bit, very overwhelming)
There are big differences between our organizations, but also several similarities. The Netherlands are small. The travel distances do not take much time comparing the distances patients have to travel in the USA. In 2 hours, you are from East to West with a little bit more time from North to South in the Netherlands; that is the whole country. One knows another very well and there are short lines between physicians and other health care professionals and our society. I know all the important professors/ researchers and have an easy-going line of contact. I was involved in the development of the evidence guidelines CRPS 2006/2014.
All patient organizations get money from the government, about 45,000 euro and membership fee of about 5000 euro. Most activities can be paid with this money. It takes some time for patients to get a diagnosis of CRPS, especially by GP’s. That is because they do not often see CRPS, just 1 or 2 patients a year and then with different symptoms. That makes it difficult to diagnose. But in almost all pain clinics and rehabilitation centers, they know quite well about CRPS and treatment. We do not know about visits to the SH for pain medications in weekends. We also do not have the very big problems (yet) about opioids as in the USA.
A really big difference is the Health Care System. In the Netherlands, you are obligated to have a basic health care insurance and all of your medical treatment is payed for. You can also get extra insurance, for example- more physical therapy or alternative treatment. Another difference is that disabled people or those affected by chronic illness that are are not able to work anymore get a payment from the government (that is not a lot but it helps you). It does not happen that you have to sell your home because you are not able to pay for your treatment. I think patients in pain and having a chronic illness have a lot more trouble in the USA than here.
All patients worldwide have the same heavy pain, their symptoms with more or less disabilities, work problems, psychological problems, and even social problems. They are similar with their CRPS. We, the RSDSA and the Dutch Society, work most with volunteers, but it is harder for both societies to get new and younger volunteers. We organize meetings and also both societies have the experience that lesser people will attend those meetings (even here with the relative short distances). We also have the experience. Every year there are less members. One can find the information on the internet and social media. For most people that is enough.
But what we really share as RSDSA and our society is our commitment to help CRPS patients in any possible way but most with good information and contact.
In Europe groups from Germany (Network), England, the Netherlands, Spain, and maybe Finland have contact with each other. We form a sort of Global CRPS community. We share articles, news and sometimes just ideas or have a chat.
I hope you like this blog about CRPS in Europe and the Netherlands. I wish you well.
Chair Dutch Patient Society
Board Member RSDSA