The forgotten sick during the pandemic: half of chronically ill patients are worse off than a year ago

The quality of life of patients with chronic diseases worsened during the pandemic: uncertainty, problems with care and delayed diagnosis were some of the problems they suffered. According to the third phase of the ‘Study of the impact of COVID-19 on people with a chronic disease’, prepared by the Platform of Patients’ Organizations (POP), only 43% of the chronically ill people consulted had received at least one dose of the vaccine, and almost half of the patients experienced a negative change in their health.

The president of the POP, Carina Escobar, said at a press conference that the “health authorities must understand the urgency. We are not the same patients or the same professionals, we have worsened”. Escobar concluded that “we must return to the presentiality”, because “people who are sick have a huge struggle with their illness and we cannot abandon them any longer”.

“Those of us who are chronically ill are forgotten,” explains Lorena López, a multiple sclerosis patient and vice president of the Multiple Sclerosis Association of León. Lopez says that, although the situation is “exceptional”, people with conditions like hers need face-to-face health care: “The assessment we can make of our state of health may be different from that made by a professional. The neurologist’s vision and empathy is necessary,” he says.

Worsening health

Since the beginning of the pandemic, 31% of the participants have seen their chronic disease worsen or have experienced new and different symptoms (11.7%). That is to say, almost 43% of the patients have presented a negative change in their health. From the POP indicate that three out of four people live with some kind of pain, and the same figure suffers from anxiety or depression.

As Laura Carrillo, from the NUPA association supporting families of patients with intestinal failure, explains by email, the pandemic situation for these people has complicated their emotional well-being: “The uncertainty for those who have to resort almost daily to a hospital and, especially, for those who need a transplant was very difficult to manage”.

Ehis psychologist points out that the organization has been able to verify the insecurity on the part of the people affected, and gives an example: “Some were even afraid to come to Madrid to the review,” he says.

117 days to confirm the diagnosis

Regarding health care, one of the most significant data is the waiting time for patients to be treated. Thus, when they needed to make a visit to the doctor, they had to wait 48 days on average to receive care, which in some cases could be extended to more than a year. From the onset of symptoms to confirmation of the diagnosis could take an average of 117 days, according to the report.

The problem of taking so long to diagnose complicates certain diseases. As Lorena Lopez relates, in the case of multiple sclerosis, the symptoms “are very confusing” so early detection of the pathology “makes the evolution of the disease is much better.

Another cause for concern for the platform and health professionals is that, according to this third phase of the POP study, which has been carried out since April 2020, only 43% of the chronic patients surveyed had received at least one dose of the vaccine. “That these people have not been prioritized for vaccination made no sense. It has been left unprotected patients with chronic diseases that were being affected in a much greater way than a healthy patient,” said at a press conference last Wednesday Diego Ayuso, Secretary General of the General Council of Nursing.

“We have been left out of the vaccination strategy,” says the vice president of the Multiple Sclerosis Association of Leon. Lopez speaks of the fear of patients to be infected by not being vaccinated, taking into account that this disease, in many cases, affects young people who are now beginning to receive the first doses.

In the same line as Ayuso, Antonio Blanes, director of technical services of the General Council of Official Associations of Pharmacists of Spain, says that in recent months it has been possible to verify a “loss and worsening of the quality of life in half of chronic patients.

Growing dissatisfaction

On the other hand, while the dissatisfaction with the health care received in the first phase of the study was 28%, in the second phase of the study, the dissatisfaction with the health care received in the first phase of the study was 28%. this third phase has doubled to 57.2%. As María Gálvez, director of the POP and the person in charge of presenting the report, explains, “as the months go by and the (chronic) people see that there is no recovery of care”, they become “more dissatisfied”.

And this has happened, agrees Enrique Guilabert, treasurer of the General Council of Medical Associations, because during the pandemic “was left aside any kind of assistance. This expert also explained that the relationship between doctor and chronic patient should be face to face: “If there is this continuity (to attend the patient in person), just by walking in the door you know if you have worsened his condition.

As for pharmacological treatments, the study concludes that more than half of the participants faced different problems in obtaining community treatment. According to Gálvez, in some cases these were bureaucratic: there was a certain rise, of more than ten percentage points, between the last two phases of the study among people who had complications with the expiry of the electronic prescription, which went from approximately 10% to almost 20%.

Another aspect that shows a negative evolution for chronic patients was the therapeutic adherence: the number of people without treatment, those who forget to take their medication or those who refuse to do so is increasing. In general, only 31% of patients have been able to continue their treatment normally in outpatient clinics.

The presented last Wednesday is the third phase of the study conducted by the platform POP by the continuity in the time of the covid-19 and the “lack of health recovery”. In this way, the document closes a cycle of research that began in April 2020, and that in this phase has had the participation of more than 470 respondents.

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