We need to connect and work together

There are shocking examples of people who are too sick to get out of bed. The directive is a first step towards good care. But with just a guideline you are not there yet.  Because there are a lot of parties that are committed to patients with Long COVID in their own positive way. How can we join forces to achieve even more?

The Platform Knowledge Exchange Recovery and Follow-up Care COVID-19 was set up to provide structure, order and calm in the care for patients with Long COVID. Some twenty parties have joined this platform, such as scientific and professional associations, knowledge institutions, government bodies, patient associations and C-support, an organisation that supports people with Long COVID and trains professionals. The platform is funded by ZonMw. C-support and LAN are responsible for the coordination. The platform aims to provide structure, order and calm in the care for patients with Long COVID. We will provide clear boundaries: who takes on which role and when? We exchange knowledge and will jointly tackle the challenges concerning Long COVID, for these matters are not part of the guideline.

New insights and developments are rapidly disseminated within the platform. We inform each other about what we are doing and which challenges we see. For example, the foundation Stichting Long COVID has become the charity in the area of Long COVID. Together with a large research consortium, they aim to establish a research programme. It is also useful to note that the three patient associations are jointly examining how they can further improve the information made available to patients. That information needs to be clear and reliable. Therefore the platform has a useful role to play with respect to knowledge dissemination. We are also considering, for example, a central training database so that platform participants can benefit from each other’s training provision.

Another aim of the platform is to raise awareness. There is still a lot of misunderstanding and ignorance, for example among employers, company doctors, insurance companies, welfare agencies and within society. And not every GP considers Long COVID as a possible diagnosis when a patient complains about fatigue or brain fog. Doctors should examine the patient from a multidisciplinary perspective more often. Care trajectories can play a role in this. How can you ensure that care trajectories are introduced everywhere so that patients receive the right care throughout the Netherlands? Recognition is also an aspect of raising awareness. There are still people who deny the fact that Long COVID exists, which beggars belief, in my opinion. I recently saw brain scans of people with Long COVID. These images were imprinted on my mind and are very difficult to forget.

The platform seeks to connect and encourage collaboration. However, we do not take on the responsibility of the various parties, they remain independent. For example, if a patient association in the medical domain highlights a problem or is critical about policy, they can make this public and talk with the media, members of parliament or the government minister concerned. The platform helps to jointly discuss challenges. We are now developing a knowledge agenda that is based on our joint challenges, as defined during our meetings. We have been given two years to realise a structure for connecting and collaborating. After that, the collaboration needs to happen automatically or be part of the expertise network, for instance.

Health insurers have a role to play in this. They need to invest in the development and dissemination of care trajectories. That will lead to great cost savings in the future. At present, Long COVID cannot be cured yet. But with a good care trajectory, you can more often exclude certain diagnoses. That means not solely examining the lungs, brain, blood or intestines, as is often the case at present, but examining the entire clinical picture instead. This provides more starting points for treatments and, as a result, a better quality of life for patients. Furthermore, it will ultimately save health insurers a lot of money. During the pandemic, the emphasis was always on vaccination and treatment on the ICU. Now it is time to focus on follow-up care.

• Long Covid
• Blog series "I'm researching long COVID"