How participation in labour could be a challenge for pituitary or adrenal patients

What should happen if an employee with a pituitary or adrenal disorder is unable to continue fulfilling their job responsibilities?

This question has been posed to patient organizations and AdrenalNET over the past few years. Additionally, how can we assist patients who have lost their jobs due to such disorders? What key information should employers understand when they encounter an employee who can no longer perform their current role?

In 2020, AdrenalNET initiated a Dutch project that involved all relevant stakeholders to explore options, possibilities, and essential information for employers, employees, insurance doctors, caregivers, and others.

The project, named ‘Participatie in Arbeid,’ was launched in the Netherlands in 2020. It focuses on addressing the support needs of patients with pituitary and adrenal disorders —whether they are still working or have had to stop due to their conditions — while also serving as a guide for employers, insurance providers, and occupational health physicians on how to assist these employees.

During several meetings with stakeholders, the core group thoroughly discussed and elaborated on various topics and details, resulting in the following products:

  1. A specialized website on labour issues, providing information to all stakeholders: https://www.werkwijzer.online/
  2. Three informative documents on Cushing’s syndrome, adrenal disorders and pituitary diseases. See: https://www.werkwijzer.online/speciaal-voor/hypofyseaandoeningen/
    Translated in English are:
    20240501 factsheet cushings syndrome UK
    20240501 factsheet pituitary disorders UK
  3. The establishment of a “Buddy Support Group for Work-related Questions” at the patient associations “Bijniervereniging | Dutch Adrenal Support Group” and “Nederlandse Hypofyse stichting’.
  4. Presentations at meetings for Dutch endocrinology (DEM).
  5. Presentations aimed at other relevant stakeholders, such as the UWV and others.

The project was financially supported by ZonMW, Netherlands

Please Note:
The attached fact sheets have been developed for the Dutch situation, including relevant regulations and advice.