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Patient Perspective: Living with CF in Greece When I was first told, at the age of 11, that I suffered from CF (a disease totally unknown to me at the time), I was neither particularly afraid, nor aware of the difficulty and severity of this disease, since the symptoms were quite mild in my case. The only strong memory I have is that, since then, I have been collecting more and more information about the underlying physiology and the different types of the disease, and the therapeutic approaches to it. My hope was that the more one knows about the disease, the easier, the better, and the more effective it will be for a person with cystic fibrosis (PWCF) to face this difficult situation, and confront the problems that continuously arise. I have always believed (and still do) that "time heals all the wounds" and that the passing of time would have a positive and beneficial effect in my coping with CF. This would then help me to adjust to a new way of life, the special needs and all the conditions this disease renders requisite… Unfortunately, I have now realised that time does not always have this magic effect. After all these years, there are still many unanswered questions and even more "I don't knows" that come into my mind whilst living under the pressure of having this genetic disease, called "cystic fibrosis". I could say without a doubt that sometimes, the information that I received had a discouraging impact on me, especially, when I learned about new drugs and therapies, which some of us didn't have a chance to try….
I really don't know what is meant by the words "state" and
"social welfare" when the benefit per month for an unemployed
CF sufferer is only 170 Euros; in the meantime, the pharmacological and
other necessary therapies cost at least five times that amount. (Let me
note that CF patients in employment are not eligible for any economical
support by the "welfare" system.) "CF patients in Greece do not have totally free medical care." CF patients in Greece do not have totally free medical care. Whilst in-patient care/medication is free of charge, out-patient care and medication must be covered by each individual's health insurance. This insurance only covers 90% of the cost of medication from a pharmacy and approximately 70 - 80% of the cost of medical equipment (i.e. nebulizers). The individual must prepay the remaining 10- 30%. (The percentage discount varies dependent on which health insurance organization is used.) I am pleased to report that unlike other countries, Greek CF patients do have access to medication such as Dnase (Pulmozyme) and Tobi, as well as food supplements, at this same discounted price. In fact, more recently I am now able to purchase my Pulmozyme free of charge if I get this from my hospital pharmacy. Also, health insurance organizations respond to our claims at an extremely slow pace and they usually delay or even deny the full coverage of our crucial and vital therapeutic regimens. I really don't know the meaning of a "medical follow-up", when the attendant doctor is always absent, or too busy to spend some time with the patient and discuss the health problems that arise, and the choices open to one. For me, "hospital care" means being cared for in buildings that are extremely old and poorly maintained, always very crowded with patients and often with a shortage of beds, without the minimal requirements of hygiene, without up-to-date essential medical equipment, and without the appropriate staff necessary to provide well organized and efficient medical care. I have NO access to specialist team members such as dieticians, psychologists, social workers, nurses, etc that are actively involved in the treatment of the disease. Cross-infection is not given the consideration it deserves, with CF patients housed on wards with other respiratory lung patients. However, my physician will try to arrange for me to get a single room if this is available. PWCF will be treated in the hospital where their physician is based, which in many cases may be many miles from the patient's home. However, this can be out of financial reach due to the travelling expenses incurred. Once in hospital, PWCF will often be grouped together in a multi-bedded area; in some cases, in the pediatric department. The attending doctor must take the initiative to push for suitable accommodation and draw attention to the need for segregation from patients with potentially transmissible bacterium. Lack of resources is often the problem, so even if your physician is aware of the risks, it can be beyond their control. __________________________________________________________ "…I take advantage of the home IV therapy that is available
to me." As a result, I take advantage of the home IV therapy that is available to me. Although I receive no physical assistance with my home IV therapy, I can self-administer the necessary medication away from what I consider to be an unsuitable hospital environment, which is overshadowed by the threat of further potential infection. I will then return to the hospital every few days for any needed intervention, such as new IV access or any arising concerns, such as an allergic reaction. Despite extensive training it seems that the majority of doctors are
still so ignorant and unaware of what CF entails for people like me. These
medical professionals stir feelings of helplessness and self-consciousness
in me, whenever I mention my chronic disease, or I have a question about
my health problems. "…good doctors, who really care about CF patients…" I am treated by a general respiratory physician who has received training abroad in the specialist area of cystic fibrosis. Fortunately, there are some other good doctors, who really care about CF patients, and are deeply concerned about their future and their fears and, with all they have, they try to alleviate our pain. As you will have gathered, as an individual I do not have a lot of confidence
in the medical care system, here in Greece. Tests and treatments are disorganized
and (apart from a few valued doctors), the staff are ignorant of my needs
as a PWCF. "I have many hopes for future improvements…" I have many hopes for future improvements in Greece for the care of PWCF. My main hope is the establishment of an independent, well-organized CF center for adults, following all the essential treatment, accommodation, staffing and cross-infection criteria. I believe that this is the only way to win all the battles that we face everyday, and more importantly, the most significant one of all, the battle for our own life.
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