Beleid loopt vast waar systemen elkaar niet vinden

Good afternoon.

My name is Narita Saija.
I am a board member of the Dutch patient organisation PostCovid NL and the Dutch PAIS Alliance.
I also serve on steering committees within the Dutch Post-COVID Network as a patient expert.
I participate in several national research projects on Long COVID, including a PEM-pacing study and a study involving homebound patients.
And I live with Long COVID myself.. M
y main symptoms are PEM, POTS, profound fatigue, cognitive difficulties and sensory overload.
Off-label medication helps me manage some of these symptoms.
But it does not make the illness go away.
So I speak from lived experience.
I also speak as a patient representative and a board member.
That combination has shown me something important.
Speaking from the perspective of people with Long COVID and other PAIS conditions, I would like to offer our answer to one question:
Why is policy still failing Long COVID and PAIS patients in many countries?

Our answer:
Patients experience one illness.
And they live one life.
But our systems respond in separate parts.
Healthcare looks at symptoms.
Researchers study mechanisms.
Employers look at work.
Schools look at attendance.
Social services look at eligibility.
Policymakers look at budgets and responsibilities.
Each system asks its own questions.
Each system has its own rules.
And no single organisation is responsible for the whole.
This is where policy lacks.
It gets stuck in the spaces between systems.
We already have growing scientific evidence.
We have committed researchers.
We have dedicated healthcare professionals.
We have policy initiatives.
We have patient organisations with years of knowledge.
But these efforts do not yet form one coherent and sustainable response.
The challenge is therefore not only to do more.
We also need to connect what already exists.
We need to connect science and policy, preferably internationally.
We need to connect research and clinical care.
We need to connect healthcare with employment, education, income and social support.
And we need to connect professional knowledge with patient knowledge.
Patients can help make those connections.
We experience where systems meet.
And, very often, where they fail to meet.
Patient involvement must therefore go beyond sharing personal stories.
Patients should help set priorities.
We should help shape research and care.
We should participate in governance.
And we should be involved in evaluating whether policy actually works.
Because recognition on paper is not the same as access in practice.
A policy may look coherent.
But the real test is simple.
Can patients access appropriate care?
Can they keep an income?
Can children continue their education in a way that respects their illness?
Can families receive support?
And can patients feel a difference in their daily lives?
We also need to learn from history.

Long COVID is new.
Many of the policy failures surrounding it are not.
People with ME/CFS, Q fever fatigue syndrome and other post-infectious conditions have faced similar problems for many years.
We should have learned from that history.
We need institutional memory.
We should not start from zero after every outbreak.

What patients, clinicians and researchers learned from ME/CFS, Q fever and other post-infectious conditions should have shaped our response to Long COVID from the beginning.
And what we learn from Long COVID must now be preserved.
Research networks should not disappear when a programme ends.
Clinical expertise should not disappear when temporary funding stops.
Patient knowledge should not be lost when political attention moves on.
Future outbreaks will create new chronically ill patients.
So a sustainable PAIS infrastructure is part of pandemic preparedness.
We heard yesterday that medicine has a history of psychologising conditions it does not yet understand.
For patients, this is not an abstract debate.
It affects the questions we are asked.
It affects the treatment we receive.
And it affects whether our physical limitations are believed.
Psychological support can be valuable when someone is living with severe chronic illness.
But support in coping with an illness is not an explanation for the illness itself.
We must separate cause from consequence.
Scientific uncertainty should lead to more scientific curiosity.
It should not become a psychological conclusion.
And it should not become a reason to postpone action.
We may not know everything.
But we know enough to protect patients from harm.
We know about PEM.
We know that physical and cognitive exertion can cause a serious and delayed worsening of symptoms.
We know that patients need appropriate support now.
And we know that one standard pathway will not fit everyone.
This is especially important for children.
Children with Long COVID and other PAIS conditions are not only losing their health.
They may also lose access to education.
To friendships.
And to important years of development.
Children cannot put their development on hold while systems wait for complete evidence.
Healthcare and education must work together.
Support must follow the child’s actual capacity.
The child should not be forced to fit the system.
The system must respond to the child.
We must also speak about the most severely affected patients.
They are often the least visible.
Some cannot leave their homes.
Some cannot leave their beds.
Some cannot tolerate light, sound, touch or conversation.
They may be unable to visit a clinic.
They may be unable to participate in research.
And they cannot attend conferences like this one.
Their absence must not be mistaken for an absence of severe disease.
If care is only available to patients who can travel, we exclude those who need it most.
We need outreach.
We need appropriate home-based care.
And research must find ways to include severely affected patients safely.
A system should be judged by how it responds to those who are least able to reach it.
In the Netherlands, some patients reach a point where they explore euthanasia.
Every individual situation is complex.
We must speak about this with great care.
But when seriously ill patients no longer see a bearable future, that is also an urgent signal.
We must ask what years of illness, isolation, inadequate care and lack of perspective have contributed to their suffering.
Euthanasia must never become society’s answer to the absence of a
propriate care, support and scientific progress.
We can promise that people will not be abandoned while science continues to search for answers.
We need a continuous learning system.
Knowledge must move from research into care and policy.
Experiences, unanswered questions and safety signals from patients and clinical practice must flow back into research.
That is how science, care and policy can strengthen each other.
So what must change?
We need one coherent strategy.
We need clear responsibility.
We need structural funding.
We need continuity.
And we need meaningful patient involvement at every level.
This is not about bringing every organisation into one structure.
It is about working towards one shared goal.
It is about knowing who is responsible.
What they will deliver.
And by when.
We have many of the necessary pieces.
Our task now is to connect them.
Around the reality of patients’ lives.
Around the knowledge we have already built.
And around our responsibility to those who may become ill after the next outbreak.
Patients experience one illness.
Policy must finally become one coherent response.

Thank you.