Bewilderment and loneliness in the face of the general misunderstanding of what is happening to them are the most common sensations of persistent covid patients, which are added to the dozens of symptoms that they have been suffering for months and that, in many cases, exceed a year. Although the disease has been recognized by the World Health Organization (WHO) and by the Ministry of Health, studies are scarce and are in the embryonic stage and most health professionals are not familiar with its pathologies. However, some regional administrations and professional associations are starting initiatives to tackle a disease that affects 20% of those infected by coronavirus, according to WHO calculations. Those involved demand a common and structured strategy to provide an effective response that allows unifying diagnoses and treatments.
Catalonia is the community that has advanced the most. The Department of Health has given the green light to a clinical guide to care for people with persistent symptoms of covid. The strategy revolves around primary care, the entry point to the health system and from now on a reference in the community for this type of non-specific symptomatology. “Up to 200 different symptoms have been counted and those that occur develop in different phases. Some appear and then are mitigated, then others emerge… ”, explains Teresa Benedito, secretary of the Spanish Society of General and Family Physicians (SEMG), which published a persistent covid survey in november, which concluded that this disease affects 79% of women between 40 and 45 years of age.
In Catalonia, family doctors will be in charge of offering comprehensive care and referring patients to other specialists if the intensity or complexity of the clinical picture requires it. “The working group began to develop a protocol that ended up being a guide. The protocol is more rigid. The guide is intended for primary care professionals, because they are the gateway and where there were more disparities, ”says Carmen Bertral, Secretary of Health Care and Participation of the Department of Health. The guide lists the most common symptoms, orders the therapeutic approach and defines the case of persistent covid: “Any person with a clinical diagnosis of covid, with or without a virological diagnosis, who after the acute phase of the disease, from the third week, he continues to present some symptoms related to the infection, either persistent or oscillating ”.
The Department of Health has incorporated a code into the primary care operating system to identify cases of persistent covid. “So that no one is left out, for example, to treat their sick leave, even if not all the tests have been done,” says Bertral.
In Aragon and Andalusia, thanks to the impulse of their respective associations of persistent covid patients, progress is also being made. “It is very important to homogenize the diagnoses of longcovid patients to avoid inequity in treatment, that we are not stigmatized and that we are all diagnosed with the same,” explains Delphine Crespo, spokesperson in Aragon. His association was established in December 2020, but in these months it has already met twice with the Aragonese Government, achieving, as in Catalonia, the incorporation of a code within primary care to identify patients with persistent covid and the creation of a working group that will draft the protocols for the care of these patients and will promote lines of research.
“There are doctors who have knowledge and are sensitized, but there is still a lot of ignorance, some have diagnosed us with anxiety or menopause,” explains Crespo. Therefore, for this association it is essential to carry out an outreach work. In these months they have met with several professional associations, including that of physiotherapists with which they have reached an agreement to publish studies and information on its website. “We professionals are the ones who can help the most and by giving a space on our website we reach patients, but also our 1,700 members, of whom a very high percentage do not know about this disease or do not have the capacity to treat it”, explains Antonio Miguel , vice dean of the Professional College of Physiotherapists of Aragon.
Coordination to avoid patches
Miguel, in collaboration with the Spanish Society of Pulmonology and Thoracic Surgery, is preparing digital seminars to give visibility to this ailment and raise awareness among professionals. It claims “to share knowledge and make clinical guidelines and protocols to achieve evidence-based treatments.” “My patients see themselves alone and need recognition, because it is not something temporary. This requires synergies ”, he insists. The SEMG is finalizing a care protocol together with 27 other medical societies that they hope to present in recent weeks. “But to apply it it is necessary that it be authorized by the Administrations”, warns Benedito.
She participated in the first meeting that the Andalusian LongCovid association had with heads of the Ministry of Health in April, in which requests similar to those of Aragon were transferred and, in line with some of the main claims of persistent covid patients , emphasis was placed on the recognition of those patients who were infected during the first wave, but who do not have a diagnostic test that confirms that they had coronavirus, as Catalonia has done with its clinical guide. “52% of the persistent covid patients from the first wave could not have access to tests, these people are lost because they are not recognized,” says Nuria Hernández, one of the spokespersons for the persistent covid association of Andalusia.
The persistent covid patient registry that the Andalusian Council of Official College of Pharmacists (Cacof) has launched in mid-April in the 4,000 pharmacies of the community can bring out this group of “invisible” patients, as Hernández calls them. The Cacof intends to monitor clients who suffer from the most common diseases of covid, but who do not go to their doctor and demand medicines without prescriptions. “Patients go to their pharmacist because he is their trusted person and with this registry we seek to detect when they change the medication, if it works for them…. We will carry out a study that we will make available to researchers ”, explains Francisco Marín, member of the Cacof Professional Services Commission.
Since this registry was launched, some 150 people have been incorporated into the databases, Marín indicates. “In these first days we have detected that patients feel relieved and grateful to see that finally someone recognizes their illness and that they are not crazy or alone,” he abounds. This misunderstanding on the part of the environment and the discredit of their own doctors that many of these patients face is what the psychology workshop aims to mitigate on line that every two weeks one of the members of LongCovid Andalucía teaches and is attended by about twenty people.
A similar relief is felt by María del Mar Martín, pathological anatomy technician at the Infanta Elena de Huelva Hospital. She is one of the first patients of the only persistent covid unit in Andalusia, which began consultations at the same hospital in December. With the treatment he is receiving, he is feeling better. But the most important thing is the change in your mood. “Knowing that they were going to control me has given me much more confidence and tranquility, it has lessened my fear of thinking that I was going to stay that way,” he says.
In these almost six months the unit has assessed about 350 people. Juan Ignacio Ramos-Clemente, head of the Internal Medicine Service of the Infanta Elena de Huelva Hospital and head of the Persistent Covid Unit, like the rest of the professionals, calls for coordination from a medical and health point of view. “If 10% or 20% of the patients with covid are going to be persistent covid we have to organize an integrated and comprehensive assistance plan because otherwise we will be patching a problem that we still do not understand ”, he warns.