According to the makers of the plan, one million Dutch people will have or have had cancer by 2030. Many are seriously tired, have anxiety complaints and cannot function socially as usual. For example, patients are afraid of the disease returning, have damaged nerves and there are people who experience problems with, for example, relationships or at work.
National Action Plan
Therefore, better follow-up care should be provided, which starts with the diagnosis and attention should be paid to the possible (later) consequences of cancer and the treatment. The current organization of care and financing would be inadequate. For example, in nine out of ten patients, the costs for physiotherapy are not reimbursed.
The initiators also believe that data is easily available digitally to the patient and all care providers involved, so that coordination of care is easier. In addition, there must be one regular care provider for each patient who can answer questions and make appropriate referrals.
Aftercare
Josje Hamel (54), who grew up in Holsloot, founder of the Hamelhuys with offices in Assen and Groningen, recognizes the concerns. She has also dealt with the disease herself. In 2010, metastatic melanoma was discovered in the lymph nodes in her neck. She has had to convalesce for more than two years.
She lost the cancer after this “intense trajectory”, but she has, among other things, chronic neuropathy (nerve pain) from the treatments. After being ill for two years, she was rejected from the labor market. She didn’t know what to do. Hamel: “I ended up in a black hole.”
She says that aftercare is therefore very important. “When you start treatment you have no choice. You have to be treated or you will die. But you have no idea what the effects are. And that’s where aftercare is very important. Because you have to be prepared. have no idea what will happen to you after the treatments are done. “
Information
Hamel says she would have wanted more aftercare during the treatments. She was informed on paper about, among other things, the side effects, but she was hardly concerned with that at the time. “You are in a treatment and you need all the time to endure that treatment and how you feel at that moment.”
The hospital is mainly focused on the medical process. They aim to help a cancer patient as best they can and make it better, she says. That is understandable according to Hamel. “Whether it concerns surgery, chemo, radiation or immunotherapy. That’s the corebusiness. That must be done. “
“It would be much better if personal discussions were held later in the process,” Hamel thinks. “Then you are more open to it.”
Customization
She would have liked to have had such conversations with the oncologist or an oncology nurse. She thinks it could be different for everyone. “It can be done in different ways, of course.”
“I am well aware that it is difficult because every patient is different”, Hamel continues. “It also has to do with what type of person you are. One wants all the information in advance, the other is like: ‘I’ll see when the time comes.’ It is difficult to come up with a standard for this. So I don’t think it should be done through a standard procedure, but through customization. “
Figures mentioned in the plan:
- Every year, 110,000 people in the Netherlands are now diagnosed with cancer.
- Five years after diagnosis, six out of 10 patients are still alive.
- 800 thousand people in the Netherlands live with or after cancer.
- One in four is seriously tired.
- One in three has symptoms of anxiety.
- One in three cannot function socially as usual.
- 40 percent struggle with the consequences and do not know was it possible to support cancer.
Hamel recognizes the aforementioned complaints (see box). She has to do with it herself. “I used to get up at 7 and go to bed at noon with a lot of energy,” she says. “But that is no longer possible. My energy is running out quickly.” Because she gets tired quickly, she can sometimes find it difficult to participate in social activities, she says.
“I also recognize the anxiety symptoms very much. You are afraid that the cancer will come back”, Hamel says candidly. “You also become insecure about your body. If cancer is diagnosed then you have had it in your body for a while and you have not noticed it. So actually something like this can happen in your body before you realize it and that can happen. make you lose faith in your body. That’s scary. “
Hamelhuys
To get out of the black hole, Hamel started doing voluntary work. After experiences with drop-in houses outside her hometown of Groningen, she also started such a house in 2015 for people with cancer, former cancer patients and their loved ones. There they can, for example, share experiences and do activities. In January this year, a second ‘Hamelhuys’ opened in Assen. She also hears stories from people who have experienced the same.
“You can go to a walk-in center for contact with fellow sufferers and to tell your story”, she says. “But of course there are no doctors or nurses there. Imagine that you have ambiguities in the medical field, then you still need them.”
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