Friday, September 4, 2015 - 15:01
Report: Red tape defeats ALS patients' quality of life
Patients suffering from the fatal disease ALS sometimes have to wait so long for aid devices like wheelchairs and stair lifts, that they no longer need them by the time they finally arrive. Because of the many bureaucratic battles they face and how quickly the disease progresses, some patients have already passed away when the aids they requested are finally available. This is according to the Foundation ALS Nederland and ALS Patients Connected in the Volkskrant on Friday. The foundations get weekly complaints from ALS patients who can not get access to the aids they need due to difficult procedures. "Sometimes the things only arrive after the patient has died", Ineke Zaal, spokesperson of ALS Nederland, said to the newspaper. ALS is a crippling disease that gradually paralyze people suffering from it until their breathing muscles stop working. Patients diagnosed with ALS have an average lifespan of between three and five years. The disease became known worldwide through the ice bucket challenge last year. Famous scientist Stephen Hawking suffers from the disease. The foundation has asked the Association of Dutch Municipalities to establish an accelerated procedure of ALS patients. They get weekly complaints from patients who have become stuck in burdensome procedures for wheelchairs, stair lifts, mobility scooters, eye computers and other necessary home modifications. One patient requested a stair lift from his municipality in June. "He had a letter from the doctor that he has ALS. But the municipality still wanted to send him to its own doctor for a check." Zaal said to the newspaper. "Since then ha has fallen down the stairs several times, flat on his face. He now has dentist bills, hospital bills. The healthcare costs are now higher than that of a stair lift." Other patients have to wait up to 20 weeks for an eye computer - their only means of communication as they can no longer type or talk. Zaal believes that municipalities simply do not realize how quickly people suffering from ALS deteriorate. Around 1,500 Dutch people have ALS. As the disease is so rare, authorities and municipalities know too little about it.