Patient associations want to weigh in the event of a second wave

Illustration of the commission of inquiry for the evaluation of public policies in the face of major pandemics in the light of the Covid health crisis.

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• The senatorial commission of inquiry for the evaluation of public policies in the face of Covid-19 convened this Tuesday three spokespersons from associations of health users.

• An inaudible word during these long months of health crisis during which, according to them, health democracy has been undermined.

• These patient associations hope to be solicited and heard in the event of the worsening of the Covid-19 epidemic, in particular on decisions about the continuity of care.

“We have so much to tell you that we need to invite us more often!

", Ironically Gérard Raymond, president of France Assos Santé, heard by the senatorial commission of inquiry for the evaluation of public policies in the face of the Covid-19 pandemic.

This Tuesday, the senators received interlocutors who have been heard little since the start of the health crisis: patient associations.

Three of them, Renaloo (which supports patients suffering from renal failure), the League against cancer and France Assos Santé (the National Union of approved associations of users of the health system)

were for the first time convened to give their vision of the Covid-19 period.

A morning to learn from the past, advance health democracy and weigh in the event of a second wave.

Ignored alerts

“In January, we alerted to the fact that the Covid would not be a simple flu, recalls Gérard Raymond.

The authorities have ignored us, in particular the Scientific Council.

On the other hand, we worked with the Health Insurance and the Ministry of Health.

Mediatically and politically, we were more in reaction than in building a health policy.

"

For Magali Leo, head of advocacy for the Renaloo association, the experience of patients, their concerns, their experiences and the surveys carried out by user associations could have shed light on the authorities.

“A political decision should not be decided solely on epidemiological data.

The whole sensitive dimension of what the patient's real life is must be taken into account.

But also the way in which patients accept constraints.

"

A complicated dialogue

"There has been a decline in health democracy during this period", points to the Magali Leo commission, supported by other associations.

"The bodies of health democracy, such as user commissions in hospitals, have been suspended," she

few hours after these hearings.

Dialogue between institutions and patient associations has not been carried out satisfactorily.

"

And this while the need for health democracy was significant.

“The urgency, the gravity and the astonishment of March led to the abolition of all the structures to defend the rights of patients, while we were faced with dramatic situations: people who died alone, others in nursing homes deprived of their close, she recalls.

I regret that during this crisis, because of the emergency, all the dikes broke.

It gave rise to a form of drift on medical practice.

For example, the removal of meals for patients on dialysis.

We have to rebalance things and trust the patient.

"

However, the results are not all black.

"This crisis was a revealing of the weaknesses of our democracy in health, but also an accelerator of the territorial initiatives in outpatient as in the hospital", advance Gérard Raymond in front of the senators.

Decisions with serious consequences

The voice of users has also been slow to emerge in the media.

And yet, a number of chronically ill people, people with cancer, have suffered from containment measures, remoteness, access to health care hampered.

“Our leaders relied on scientific knowledge, but we [patient associations] ordered us to return home, assures Gérard Raymond.

We had a very bad time during that period.

"

And Magali Léo to take the example of kidney transplants.

“The government suspended the transplant activity without consulting patient associations and without informing patients.

This is unacceptable.

What is subject to criticism is how the decision was made.

Which testifies to the little consideration we are given.

Likewise, when the harvest and transplant activity resumed, we were not informed.

From March to May 2020, nearly 600 kidneys were not transplanted.

It is a waste of luck for the patients.

"

According to Emmanuel Jammes, of the League against cancer, the senior health authorities lacked clear messages.

"The health crisis has been a catalyst for questions that have been asked for a long time, that of drug stocks, how to ensure the monitoring of patients in town?

The associations had to offer support solutions without having directives.

"

The consequences of service closures, canceled appointments and postponed exams will not be considered for several months.

“We have treated people, but how many lost chances for patients screened or treated too late?

asks Magali Leo.

Everyone did as best they could with the uncertainties.

But here we have to think about the future.

"And Senator Sylvie Vermeillet asks a complex question:" Does it go without saying to favor Covid patients over others?

In the event of a second wave, is that still how we should do it?

Should we have a nationalized response?

"

What lessons can be learned from it?

If these associations step up to the plate, it is in the hope that in the event of a worsening of the epidemic, which seems to be confirmed, their word will be more solicited and heard.

How? 'Or' What ?

By consulting them more.

In particular by bringing one or a representative of users into the Scientific Council.

What Jean-François Delfraissy himself calls for.

"It would be a first step, but it is not enough", nuance Magali Leo.

She wants the creation of an ad hoc committee, bringing together associations of patients directly affected by Covid-19.

"It would be the counterpart of a body like the Scientific Council," explains Magali Leo.

Today there are exchanges.

But it would be much easier if there was a weekly meeting with the minister's office.

"

Second watchword: anticipate.

In March, no one was ready, and alarming signals have been rekindling for several weeks.

"It is not excluded that we find ourselves in complicated situations with a multiplication of hospitalizations, even the saturation of hospitals, warns Magali Leo.

We want to prevent a new suspension of transplant activities.

Never again !

We know who the high-risk patients are, this was not the case in March.

And we have the hindsight and the time to organize channels, in order to maintain the continuity of care.

Even if it means grouping together activities in certain hospitals and putting in the necessary resources.

Another lead, launched by the president of France Assos Santé: “Perhaps if we had had better digital tools, exchanges between health professionals and associations would have been facilitated.

Will these hearings in the Senate make a difference?

"The lack of lessons learned from this crisis is what emerges from many of our hearings," regrets Senator Paul-René Savary, chairman of the committee.

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