Background There are eight care organisations within the Netherlands which are specialised in Huntington’s disease (HD), each offering different kind of care products such as nursing care in an intramural institution, daycare or an outpatient unit.

Each organisation wants to provide the best quality of care for their patients, also on the level of occupational therapy. This overlaps the vision of the nationwide Huntington Network Netherlands which aims at making quality care available to all Dutch HD patients and their families.

Case history For ten years the occupational therapists of these eight care organisations gathered into a nationwide department to improve the quality of the provided occupational care. Despite the distance and the differences, they congregate four times a year and discuss new developments, best practice and patient’s cases. Most of the participating therapists already built a considerable amount of experience throughout the years. Based on the European Standards of Care a Dutch guideline is being written.

Conclusions Despite the distance and differences between care organisations and products it is important to collaborate so that each individual HD patient in the Netherlands receives the same optimal care from their occupational therapist.

The main focus of the Dutch occupational therapists is the use of assessments to maintain daily living activities and skills by making house visits, screening cognition within safety matters such as biking, giving advice about positioning, lying in bed or sitting in a (wheel)chair, personal care (like eating, drinking, dressing) and functional capacity of the patient.