By Gerard H.F. Boekhoff

In the Netherlands, a country with 15 million inhabitants, there are about 4,000 people on dialysis.  Almost a third of the dialysis patients are on peritoneal dialysis. Only a few people (a little more than a hundred) are on home hemodialysis. The Dutch Kidney Patient Organization (Nierpatiuëntenvereniging LVD) is the national patient organization in the Netherlands and has about 5,000 members, all kidney patients and/or relatives.

Dialysis and Transplantation

In the Netherlands, 48 hospitals offer both hemodialysis and peritoneal dialysis. Pediatric kidney patients are cared for in four children's hospitals. Unlike the United States, there are no private dialysis units in the Netherlands. The standards for dialysis are quite high and the staff is professional and well trained. In cooperation with the Dutch Kidney Patient Organization (LVD), quality standards for hemodialysis have been defined nationwide. Now all the dialysis centers will be regularly audited to ensure quality standards are met. The opinions of the patients in the facility are considered during this process.

One of the key issues in the Netherlands at the moment is the threat of a treatment shortage. The problem is not only money, but also a shortage of dialysis nurses. Many are concerned that there will not be enough locations for people to dialyze and/or enough healthcare professionals to care for these patients.

Kidney transplantation is performed in seven hospitals in Holland. The operation is considered a routine surgery and the results are on average very good. The problem, however, is the shortage of organ donors. There are about 1,400 kidney patients on the waiting list and, at the moment the average waiting time for a transplant is close to four years.  The LVD, together with the Dutch Kidney Foundation, directs approximately 60 projects, all with the aim of shortening the waiting list by educating the general public. One such program is sponsoring "donation officers" in hospitals. These professionals help raise awareness of organ donation when such a need arises in an unfortunate emergency.

LVD (Dutch Kidney Patient Organization)

The LVD was founded in 1977 and is considered one of the leading patient organizations in the Netherlands. We offer education for kidney patients and their families, and address topics like organ donation. The LVD is strictly a patient organization; meaning that it is crucial that we work "through the patients' eyes." Therefore, the backbone of the organization is the volunteers. The volunteers are all kidney patients, or relatives, who devote their time and energy to their fellow kidney patients. The LVD National Office is located in Bussum, a small town in the middle of the country. A small staff of 10 employees assists the volunteers in their efforts.

The goals, as well as the activities of the Dutch Kidney Patient Organization, can be divided into the sharing of experiences and taking care of the interests of kidney patients.

Sharing of experiences

Individual level

On the patient-to-patient level we are able to offer patients what we call the luistertelefoon (the listening phone). This is a free telephone number and is open every weekday from 11 in the morning until 3 in the afternoon, for kidney patients and their relatives. Trained kidney patients, who can offer a peer perspective, answer the calls. Most of the questions received are from pre-dialysis patients who must decide on their treatment option.

Our magazine, called Wisselwerking (Interaction), is another way we reach patients. This magazine, which is produced six times a year, is highly respected, not only by patients, but also by doctors, nurses and other healthcare professionals. Every October, a special issue is produced. Special issues have included topics such as therapies (transplantation or dialysis), elderly patient needs, future advancements, etc. Of course, the LVD can also be found on the Internet. For all the Dutch speaking readers who are interested, the site can be accessed at www.lvd.nl

Group level

On this level, the LVD works for a specific group of patients. The four active committees within our organization include: 1) Dialysis Patients; 2) Transplant Recipients; 3) Juvenile Kidney Patients; 4) Nephrotic Syndrome.

These committees are responsible for the education of fellow patients by organizing informational meetings, patient/family weekends, etc. The information meetings are also organized on a regional level. Although Holland is a small country, it is not possible for all patients to come to our national office. Our regional meetings have been very successful.

Taking Care of the Interests of Kidney Patients

Waiting list for transplantation

As stated before, this is a very important topic to our organization. In 1998, a new law was passed in Holland that asks people to register their desire to be an organ donor. We decided not to become involved in the public relations effort surrounding this law. We found that the 'patient perspective' was left out and that the information was too 'technical.' The registration was not a big success; only about 30 percent of the public registered and about 60 percent of those who registered said yes to donating organs. This means the same amount of people who used to carry a donor card registered. We are very concerned by the decrease in the donation rate in Holland over the last few months. Our organization has teamed up with heart-transplant and liver patient organizations to try and educate the public on this important need. We will attempt to explain from the patient perspective why it is crucial to be a potential donor.

Social security

In 1995, we began our Patient Desk.  It is staffed with two employees and a social worker, and its goal is to support kidney patients who want to get or maintain a job. It has proved to be very successful. The government also recognizes our Patient Desk because we contracted with the government to be the official location to help kidney patients with employment problems.

Quality of treatment and of life

Quality seems to be a topic that everybody is concerned about, some with good reason (doctors?), others only because they want to cut the costs (government?). It is the opinion of the LVD that it is important for patients to take a position on this subject. Therefore, as explained before, we were involved in a working group that helped to set standards for adequate hemodialysis. We worked with doctors, nurses, social workers, technicians, the government, insurance companies etc. to establish quality guidelines within Holland.

The activities mentioned above are of course only a sampling of our work. We play an important role in Holland for all kidney patients. The LVD also works on the European level within CEAPIR (European Kidney Patients' Federation).

We feel that our work and the work of kidney patients all over the world is extremely important. We can really make a difference! Of course, we are aware that our success means more responsibility and more work to be done in the future by and for the kidney patient.

Dr. Boekhoff is a Medical Sociologist and the Director of the Dutch Kidney Patient Organization (LVD) and Vice President of CEAPIR (the European Kidney Patients' Federation). He received a kidney transplant in 1982. 

This article originally appeared in aakpRENALIFE, Vol. 16, No. 3, November 2000.

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