WHY IS THERE NO FINANCIAL SUPPORT?
This is a question we ask ourselves a lot too.
Almost every country has official protocols and financial support programs from the government to support those in need. In The Netherlands that’s the CIZ (a.o). This is the main Dutch care assessment center/umbrella organization (for long time care) that’s responsible for an indication of the needed care, which in turn determines the kind of financial support you will receive to be able to buy care.
Currently we are, together with a specialized lawyer, in an objection procedure against the CIZ. Their indication? Hugo is granted 0 hours of care.
But, let me start at the beginning. The system is kind of complex, and there are different ways to receive financial support (called a PGB) in order to buy the care you need, depending on your situation. Next to the CIZ for long-time care (government), it is up to the municipality where you are registered (and thus officially live, for Hugo that’s Amsterdam) to financially assist their residents in times of need (with a WMO). The registration procedures are complicated and cost a lot of time and energy.
Knowing Hugo his case is complex and we have faced many obstructions already, we hired a professional whose job it is to take over all kind of practical jobs from patient and caregiver (in Dutch we call them a mantelzorgmakelaar). They officially studied for this and are fully up to date on all laws, rules and applications processes. This lady, very well known in her field and extremely experienced, aborted the process half way as she knew from her experience that Hugo, due to the complexity of his case, the (by then) lack of adequate diagnosis, Hugo’s unstable care frame-work, and without hope for appropriate future treatment or admission (which is a requirement), did not stand a chance. Also, due to his condition already back then, Hugo himself was unable to have the obligatory conversations at his home. They were a requirement.
Two other professionals followed, they also both dropped the case prematurely and did not see any opening to help.
In the meantime, Hugo’s health situation quickly spiraled down. His Amsterdam-based studio couldn’t facilitate the fulltime care and the whole situation became untenable. There was no other choice than to move Hugo to another apartment in order to receive the needed care. As this was supposed to be temporarily, and Hugo was staying in an apartment where he could not officially register, he officially is still a Amsterdam-based citizen. Besides the fact that with a health- and 24/7 care situation like Hugo’s, a WMO is not sufficient at all – being forced to temporarily move to another town and change municipality made the process even more difficult. They could not help anymore.
People in need of long-term and fulltime care have to go to the CIZ. And so we did, several months ago, as Hugo became more and more care dependent and Lisa was giving care 24 hours every day of every week, with no time or possibility of generating any income.
It was an intensive process for both Hugo and Lisa, while there was actually no space, energy and time for it due to the crisis taking place. The whole process had a great impact on Hugo, who also had to be involved, while he was already living a darkened room 24/7 and had to stay away from input and stress. The whole process caused further deterioration and triggered crash after crash.
It is too sad to say that what happened next was to be expected (when having M.E.), but still hit like a bomb. A rejection letter arrived. Hugo is granted 0 hours of care (and thus no financial support). They state that his disease profile (neither M.E., nor CCI, nor POTS) does NOT give any somatic reasoning for the fact that Hugo needs 24/7 care and continuous proximity of a caregiver. The reason for this, according to the CIZ, is the result of psychological problems. Following the rules, people with psychological-based health issues are not permitted to receive financial support through the CIZ.
And this shows exactly how harmful it is to both the patient and their environment, when a disease is unknown, dismissed and covered with stigmatization.
We have started an official objection procedure against this rejection of the CIZ.
Let me share some facts:
Not only admission to somatic-based treatment/care institutions have been tried, but also pshychosomatic- AND pshychiatric-based treatment/care institutions have rejected Hugo for admission. As I told before, we’ve tried absolutely everything and within that process we did not dismiss the depersonalization and complex developmental trauma Hugo is dealing with. But all rejection statements declared that Hugo his somatic (!) situation and need of physical care is too care-intensive and too complex, and therefor they cannot offer any treatment or care.
Patients with Myalgic Encephalomyelitis go for years, or even decades, undiagnosed. Many have been accused of malingering, have been diagnosed with conversion disorders (which basically means who the hell knows) or mental disorders, or have otherwise been dismissed by medical professionals. Guidelines are outdated (all the while M.E. has been recognized by the World Health Organisation (WHO) as a neurological disease since 1969) and new guidelines (set by the WHO and other official evidence-based statements and qualified reports) are being ignored. M.E. is one of medicine’s grand mysteries. Its etiology is not known, and patients afflicted are rarely documented to recover from their ailment, although it sure is not impossible.
M.E. is officially a multisystemic somatic disease, often dismissed as psychological, which has serious and harming consequences for those in need. In the past 10 years that Hugo has been ill, he has built up an extremely long list of (both correct and incorrect) diagnoses, because the doctors did not know what was going on. One of those diagnosis, back in 2010, has been ‘undifferentiated somatoform disorder’ – which basically means a person has physical complaints that cannot be attributed to a medical condition. And that’s the thing, people with M.E. hardly have any abnormal outcome of blood- or medical tests. On paper, everything seems fine, because the disease and deregulation is happening on much deeper and more complex layers within the system.
This diagnose (undifferentiated somatoform disorder) has been made in 2010 by the SOLK (medically unexplained physical symptoms) department of the hospital. The suspicions of M.E. started a few years ago and the official diagnosis of very severe M.E. was finally been made in March 2019. Hugo’s medical specialist has explicitly stated that this (of course) proves that the earlier diagnoses of, for example, the somatoform disorder are invalid. A lot of M.E. patients get this label during the long process of getting the right diagnose, that doesn’t mean it’s the right diagnose. But once recorded in your files…
Until 2 years ago, Hugo has been treated by a psychiatrist for around 8 years. This man has literally confessed that Hugo was his most difficult case so far, because only further deterioration took place, whatever treatment he applied. In retrospect, with the diagnosis of M.E. this can be explained quite easily.
Hugo’s psychiatrist his expert opinion, which he has extensively discussed with both Hugo and his GP, is that Hugo has to contend with serious somatic issues and that they should be addressed accordingly. He has referred Hugo to various institutions for somatic treatment and care, knowing the institutions that later on have rejected Hugo because of the severity and complexity of his case.
The CIZ states that they cannot find any evidence on paper that Hugo is in need of long-term 24-hour care and continuous proximity of a caregiver. With this they not only deny the diagnosis and the officially recognized disease M.E. (and POTS), also their statement is the opposite of the statements from various treatment/care institutions, which rejected Hugo earlier, because of the required long-term and very intensive 24-hour care and the continuous proximity of a specialised caregiver.
Anyone who would take a single look at Hugo sees that this is a ridiculous decision and a ridiculous and contradictory situation, where Hugo (and everyone involved, such as his caregiver) got the short end of the stick, over and over again.
All of these organizations work separately, but when you put everything together you can clearly see how ridiculous these decisions, statements, regulations and laws come together.
The system crashes, while lives are at stake.