Max de Man of Jessica de Rooij from Tilburg recently died of the consequences of muscle disease ALS. Jessica took care of Max for a year and a half at home and had to do a lot alone. “I actually couldn’t say goodbye because I was always worried,” she says. The regulations are so complicated that you simply cannot get out if you have to deal with it. A patient support could have helped, but it is often not offered.
“When we were diagnosed, we did not know that things would go so fast. Within a year and a half it went from a relatively healthy situation in which he could still do everything, to the moment he was stitched as a result of the disease,” says Jessica. “With a lot of support from me, he kept it up to the second-last day at home.”
Due to the rapid progression of the disease, new care and support resources were constantly needed. Jessica has arranged many things himself, but sometimes in the wrong order. As a result, ‘the system stuck’, with the result that it received late or even no (financial) help at all.
Where should you request something?
Furthermore, there is a shortage of qualified healthcare staff, so there is a budget, but simply no one can be found to provide care. The communication between different doctors, specialists and carers also did not go optimally.
All municipalities have patient supporters who help find the right path in the administrative hassle for free. Typically something that your head doesn’t stand at all at such a moment. Not all municipalities actively offer this help.
“Because of the maze of rules and laws I couldn’t get out of it. Where should you request something? And then there are also countless conditions and exceptions,” says Jessica. “If you finally get something awarded, it can take just three or four months before you actually have it, while in the meantime the disease quickly worsens. Max, for example, got an electric wheelchair after a long time, but he finally only had twice there Seated because he was much sicker again. “
Because some healthcare resources were late, Jessica also had to come up with emergency solutions. “I had to secure his pillow with straps, because otherwise he would fall out of bed.”
The Ministry of Health (VWS) acknowledges that the health care system is sometimes complicated, especially for people who need different forms of care due to a progressive disease. “Everyone wants to get the right help on time and not be sent from the box to the wall. That is why this cabinet has included in the government program that it is being investigated how the various care laws, such as the Long -Term Care Act, the Health Insurance Act and the Social Support Act Being able to connect better. The goal is to arrange healthcare more efficiently, “says a spokesperson for the ministry.
Spokesperson Ricardo Bronsgeest from Muscle Diseases The Netherlands also recognizes the Wirwar of rules that people with a progressive disease are confronted. “There is no simple solution. It would save if a client supporter was always offered. If the authorities involved also provide more tailor -made solutions, that also helps. Who knows, it is also possible to group progressive diseases in the long term and to make a legal arrangement for that think. ”
“I was just arranging everything.”
“If I had had a patient supporter, it would have achieved a lot of stress, frustration and money,” says Jessica. “I put a lot of time and energy in finding my way in the health care system. I made mistakes when applying for, simply because I didn’t know better and because it seemed like the logical way to me. But if you don’t hold the right order like For example, by first requesting a PGB (personal budget) for healthcare staff and only then informs the government that it is long -term care, the system gets confused and you get the money now, months later, , but in the meantime I first had to address my own savings. “
When Jessica looks back on the last period with Max, she feels frustrated. “I was just arranging everything and just before his death I had too little time to say goodbye. I was able to sleep on the couch for two hours at most, and he needed me for his care for the rest of the time. “
ALS patients can encounter various problems within the Dutch care system, despite the existing care laws. These are some common challenges:
1. Access to care: if a progressive disease, and patients often need specialized care quickly. It can sometimes be difficult to get quick access to the right care providers and treatments.
2. Financing of care: the costs for care and tools can be high. Although the Wlz and Zvw offer coverage, there can be situations in which patients have to pay for certain tools or treatments.
3. Tools: patients often need specific tools, such as wheelchairs or adjustments in the house. Requesting and obtaining these tools can sometimes be a long -term and bureaucratic process.
4. Coordination of care: ALS patients often have to deal with different care providers, such as neurologists, physiotherapists and occupational therapists. It can be a challenge to properly coordinate healthcare, which leads to confusion and delays.
5. Emotional and psychological support: In addition to physical care, ALS patients also need emotional and psychological support. This aspect is sometimes not sufficiently covered by the existing care laws.
6. Information provision: patients and their families often need clear and accessible information about the disease and available care. This can sometimes be missing, which leads to uncertainty.
It is important that ALS patients and their loved ones are well informed about their rights and possibilities within the care system. There are also organizations and foundations that offer support to ALS patients and help them navigate through the care system.