LET'S TOGETHER SHOW HUGO WHAT IT FEELS LIKE TO BE TAKEN CARE OF
With his health continuing to deteriorate, Hugo is now faced with two new setbacks, and is in a life-threatening situation. Regulations and bureaucracy have come above empathy, humanity and reason, with very serious consequences. This is his story.
Hugo (29) is an only child whose parents have died. Both his parents suffered from severe health conditions while he was growing up. His dad was diagnosed with cancer when Hugo was 3 years old, and after a long hard struggle, he died when Hugo was 15 years old. When Hugo was 12 , his mother started to show debilitating signs of illness. After twelve traumatic years of decline, she died when Hugo was 24 years old.
A few years before his mother’s death, while pursuing a law degree at university, co-founding a promising start-up, maintaining a rich social life and with a great love for sports, Hugo himself fell ill.
Neurological and cognitive symptoms started to show, together with chronic pains in muscles and joints, sudden loss of functions, migraine attacks, heart and respiratory symptoms; outbreaks in systems throughout the body. Each doctor's visit led to another, and Hugo went from the neurologist, via the immunologist, to the cardiologist, various outpatient clinics, the psychiatrist, the rehabilitation experts, the rheumatologist and back again to the neurologist, to start the cycle again. Hugo has seen hundreds of doctors and specialists, both in The Netherlands and abroad, in both regular and alternative medicine. Many different diagnoses and treatments were given, but Hugo did not get any better!
Bit by bit over the past years, Hugo has had to give up all the things he loved. And with each year passing his condition has worsened. Now Hugo is 100% care-dependent, for literally every aspect of life. On doctor’s advice Hugo is living in a darkened room, where sound, light and touch are beyond reach, where eating, bathing, sitting, standing and speaking have become impossible.
As if dealing with such a stressful life and rapidly deteriorating health were not enough, two new and dreadful setbacks have occurred.
1. losing the roof above his head
The housing corporation of Hugo’s current care/living-address, where he was forced to go (as the living conditions in his own 15m2 apartment became untenable due to the medical situation), decided to terminate the rental contract. This mean that Hugo will be thrown out on the street per November 1st, without knowing where to go. Statements from his medical specialist that indicates that moving Hugo to another care environment and moving houses will have serious consequences (for his already worrying) health are being ignored.
Being chronically ill is a nightmare. Many patients are forced to return to their parents’ house or have their own family to rely on. Where do you go if you do not have parents? When you are without brothers or sisters; with no family home to which you can return? Especially in our time of reduced health and social care, where great reliance is put on the family and informal care. And what if care institutions and treatment centers keep on rejecting you, because your case is found to be too complex or too ‘care-intensive’?
Due to the combination of diagnoses and the complexity of his case, Hugo continuously falls through the cracks in the care system, resulting in years of lack in care provision, adverse treatment and misdiagnoses. His file is full of conflicting statements and Hugo has nowhere to go. Everything has been tried, but there is no help.
Lisa - a friend and currently full-time caregiver of Hugo – jumped in more than 18 months ago, when Hugo's situation deteriorated quickly and he could not survive any longer without help and adequate care. She could not face this distressing situation with an impending lonely death and, in the meantime, had to put her life on hold (including a successful business and income) to help him. Since then she has been taking care of Hugo every minute of every day. Despite the many cries for help, now also from Lisa’ s point of view, no adequate help from institutions, the health care system, general practitioners, the government or the municipality has been received at all.
“It seems like we are losing the game and getting defeated by the laws of the Dutch health care system.”
At the beginning of 2019, after almost ten years, finally the correct diagnoses have been made. But in the meantime, Hugo’s health has deteriorated tremendously and he’s currently in an untenable situation, without a roof over his head very soon, and without the money to finance the life-saving care and basic medical needs.
2. zero financial support for life-saving care
After long weeks of waiting, a letter has arrived from the CIZ, the institution in the Netherlands that determines the degree (hours) of care you will receive when you are in need of long-term and 24-hour care. Their report determines the amount of financial support you will receive to create a stable care situation. Their verdict: Hugo is granted 0 care hours and thus no money will be available for Hugo to purchase the care he desperately needs. This money is called a PGB (personal budget) and is meant to pay for your informal- and professional care at home, which in Hugo's case is totally necessary and without which he cannot survive, even for a few days.
An utterly incomprehensible decision for anyone who would take just one look at Hugo. The given reason for rejection is full of denial, outdated information and stigmatization of Hugo’s disease profile. At the same time, it is the presence of this serious and chronic illness which is the reason given by various care institutions for refusing to accept Hugo into any of their residential care programmes. This is why Hugo needs 24-hour care at home. Previously unsuccessful applications for financial support also ran aground, due the fact that Hugo needs long-term 24-hour care. "In that case you have to go to the CIZ," is what they said.
Thus Hugo has been placed in a nightmare situation: refused financial support for home care because of bureaucracy and the fact he needs to be in residential care, and rejected from residential care because his needs are considered to be too complex.
With the current welfare benefits Hugo is receiving (25% below minimum wage), he can only pay for a very low rent for a small home, a basic health insurance package and just a very small part of the highly needed medical liquid foods. The ends do not meet, and he cannot afford to pay his current informal care and future professional home care. While being too sick to even go to the toilet himself.
Being shuttled endlessly from pillar to post has been going on for many years, resulting in a lack of proper diagnosis or care, the lack of (correct and adequate) treatments, a very unstable care situation and ultimately further deterioration of Hugo's health. At the beginning of 2019, the only humane way out of this unbearable suffering seemed to be euthanasia. But ironically enough, Hugo not only falls by the wayside of the care system, but also outside the regulations regarding euthanasia.
“This case is too complex for us."
- treatment center for complex cases
A major breakthrough came in the recent months, mainly due to several (until recently) strangers, with whom close contact has arisen during the search for a diagnosis: parents of children with similar problems, who recognized the situation and Hugo’s very serious symptoms. A decade after the first symptoms showed, the right diagnoses have finally and officially been made: very severe M.E., brain stem compression (CCI/AAI), POTS, Chronic Lyme Disease (MSIDS), and reduced cerebral circulation (blood and oxygen to the brain).
The large viral and bacterial load, the mechanical neck problems that affect the brain, nerves and spinal cord, the disruption of the nervous system because of M.E., but also the resulting symptoms, the disease condition and the major limitations, are causing an extreme high level of stress. Stress is one of the major triggers for M.E. and the following applies: the sicker and more vulnerable you are, the less tolerance to stress you have and the less resilient you are to cope with adverse events.
Now, added to this, Hugo doesn’t know whether he will have a roof over his head as from November 1st and whether he will receive the care that he desperately needs.
HOW MUCH MORE CAN HUGO TAKE?
“I’ve never seen this before,
it is bizarre”
- head practitioner care institution
The most pressing need is to stop the deterioration in Hugo's health and stabilize things as soon as possible, so that at least he will be able to be transported by ambulance and have access to the right treatments and further medical examinations. Currently imperative to the saving of Hugo's life, is STABILIZATION and sufficient (financial) resources to achieve that.
Hugo is in a degrading and totally dependent state of being. Without a father, mother, brothers or sisters, it comes down to the help and care of friends and big-hearted strangers.
HELP IS URGENTLY NEEDED.