The relationship that is established between doctor and patient in blood diseases plays an important role
You risk being lost when faced with a diagnosis of leukemia or lymphoma. But it must be known that science and research are making important progress in the treatment of these diseases. And above all, it should be remembered that in this period of Covid-19 pandemic it is necessary to remain firm, informing oneself and maintaining close relations with the care team. In short: a solid relationship is needed between doctor and patient, with words and contact becoming real therapeutic weapons.
To remember it are experts and patients who, together discuss the present and future of the challenge to blood cancer during the work of the National Conference Life in the time of COVID-19: patients with blood cancer at high risk, promoted by AIL Italian Association against Leukemias, lymphomas and myeloma. The reason? The doctor-patient relationship and the dialogue between the doctor and the cured person is fundamental in all diseases, but in blood cancer it plays a crucial and absolutely delicate role.
The value of the word in times of Covid-19
The ongoing health emergency has made disease management difficult and this is even more true for people with blood cancers who encountered various problems in the first phase of lockdown and still encounter them today with the resumption of the infection. COVID-19. But above all, by removing the haematological patient from the hospital for safety reasons, the experts were forced to find a new way to get in touch with their patients.
"Regarding communication, Covid-19 has changed everything" – explains Mario Boccadoro, Director of the University Division of Hematology of the University of Turin, AOU City of Health and Science. "What is completely different is that all unnecessary things have been eliminated: patients who are well and stable have their check-ups postponed; oral therapies are prescribed for two months instead of one, but all this removal of the patient from the care facilities is not without psychological consequences, because they are still cancer patients, with anxieties and a series of needs that are now not met ".
“Missing the handshake, looking into each other's eyes, discussing around a table. What we try to do at the National Conference is to talk to patients that no one is talking to. Digital technology helps, even if it is not like shaking hands, but at this particular moment it makes up for the lack of direct contact and dialogue ”.
In this sense, the dialogue between hematologist and patient is an important dialogue that the National Hematology Conference has been carrying out for years also with Jam Sessions; in this edition a large space will be dedicated to acute and chronic leukemias, myeloproliferative diseases, multiple myeloma. This year the AIL Patient Groups will participate only in virtual mode, but it will in any case be a listening moment for patients on the therapeutic progress of the various haematological diseases and a listening window on the part of clinicians connected to the network on needs, expectations and hopes of the sick for the next few years.
Nearly 20,000 volunteers in support of those who suffer
For the sick and their families, the support of the over 18,000 AIL volunteers was essential. “It is a tradition of our organization to always be at the side of patients and their families and AIL has not failed in this commitment even in these months of serious health emergency” – reports Sergio Amadori, AIL National President. "All our volunteers have been mobilized through the activity of the 81 provincial sections spread throughout the country and have solved many social and health problems, for example by bringing medicines to the patient's home, shopping, providing for routine payments and offering comfort".
"Home care has been implemented by the provincial sections that provide it to meet the growing need for clinics and day hospitals. Our volunteers, doctors and nurses have had to face and solve some difficulties: the use of a greater number of professionals, the adaptation to the new safety protocols and the procurement of all safety devices. AIL responded as always with strength and courage thanks to the powerful network of friends and associates that in fifty years of history it has been able to gather around itself ".
In recent months, even the research has never stopped. GIMEMA – Italian Group of Adult Hematological Diseases has continued its commitment with numerous clinical studies involving most of the 150 participating Hematology Centers and the network of LabNet laboratories, which AIL has always supported by contributing to their funding.
National Referent AIL Group Patients MMP Ph-
Myeloproliferative Diseases Ph negative
The testimony of a patient
ME, A PATIENT WITH HEMATOLOGICAL NEOPLASIA AT THE TIME OF COVID-19
“My story as a haematological patient began ten years ago, when following a slight illness (tiredness, mild headache and confused head) I underwent simple blood tests at the insistence of my wife. The diagnosis was almost The diagnosis was almost immediate: thrombocythemia. Two years ago the disease evolved into myelofibrosis. I am currently undergoing Ruxolitinib therapy at the Hematology Center of the Ospedali Riuniti of Reggio Calabria.
Certainly the health emergency linked to the COVID-19 pandemic has had a rather significant impact on us patients and not just those of us with myeloproliferative diseases. In particular, there is a lot of anxiety and concern for checks, which have been postponed and in some cases blocked. Even for blood tests there is no clarity on where to do them, it is all rather uncertain and since our diseases are sometimes bizarre and can change suddenly, this is a problem.
So, on the whole we feel various inconveniences, due to the fact that, among other things, our diseases lack a precise legal framework and, therefore, even the discourse of being frail patients with the right to obtain certain benefits is not adequately recognized. Many patients with regard to these problems live in the anguish of not knowing what could happen by contracting COVID-19 with respect to any patient. The concerns are therefore partly linked to strictly health and organizational issues and partly to bureaucratic issues ”.