Nearly 200 leading specialists in sarcoidosis, including clinicians, researchers, other healthcare professionals and patient associations represented in the ELF sarcoidosis patient advisory group, endorsed and authored the comment article, published in The Lancet.
It discusses the urgent need for fairer fitness to work checks, also known as work capacity assessments, and calls for a new patient-centred approach.
Sarcoidosis is an inflammatory condition. It can affect many organs in the body, but the lungs are most commonly affected. It can cause shortness of breath, extreme tiredness and in many cases, difficulty with concentration and memory. Not all people with sarcoidosis need treatment, but there are options available that can help to slow the disease and improve symptoms and quality of life.
Sarcoidosis is a rare condition. People living with sarcoidosis often experience a lack of awareness about the impact it can have on an individual’s life. This has also created a lack of understanding about a person’s ability to work.
The article, which is informed by lived experience, looks at how sarcoidosis might prevent a person from working. Research has shown that the impact of the disease is different for each person. This means that it cannot be easily categorised by the tools that are commonly used to measure whether a person is fit to work.
The paper calls for change and suggests that a more holistic patient-centred approach should be used; one that considers the range of symptoms that a person living with sarcoidosis might experience, alongside lung function tests.
The paper also proposes that these assessments should require the input of a sarcoidosis specialist who can make clear what a person’s individual needs are and offer appropriate next steps. This might include a short period of leave from work, or more general advice on living with sarcoidosis and focus on what is possible, rather than on what is not.
The authors of the paper have produced an infographic that summarises their proposals. This serves as an example of a practical tool for fairer assessment which they actively promote in the hope of influencing changes to the standard assessments currently in use. The assessment considers a range of things that might affect the body including the ability to perform daily activities that are fundamental to a person’s ability to work.
This approach should also improve communication between patients and their healthcare providers and adds more information to the assessment that could be ignored when only lung function measurements are considered.
Having sarcoidosis is different for every person. The social, physical and emotional burden of sarcoidosis is greatly underestimated. Delays in diagnosis and feelings of fear and uncertainty can also impact an individual’s self-confidence even before a diagnosis is made.
Clinicians and work assessors often rely on protocols for other conditions such as chronic obstructive pulmonary disease (COPD) which can lead to assessments which overlook common sarcoidosis symptoms such as extreme tiredness, pain, and cognitive problems. This can lead to inaccurate assessments.
For people living with long-term conditions like sarcoidosis, it is crucial to receive support that not only helps them maintain their quality of life but also ensures their challenges are taken seriously.
With fairer assessments, individuals can feel empowered to find suitable solutions that help them continue to participate in society.
Members of the sarcoidosis patient advisory group will follow up on this article and work on new resources and practical information around employment which can be shared in their own countries. To get involved, please contact us.