Background In 2012 a working party of Occupational Therapists, allied to the EHDN, produced the Best Practice Guidelines for Occupational Therapy (OT) for people with HD. Since then these guidelines have been condensed into easy to use summaries – the Clinical Tips for OT in HD. These are hosted by a number of HD patient and professional HD focussed organisations in Europe. For example they form the basis for a series of webinars broadcast through the Huntington’s Disease Association (UK) in 2021.
Aims/Methods As the application of OT covers the many complex daily issues of living faced by people with HD and their families, its scope has increased since the original guidelines were produced by the working OT working group specialised in HD. The OT working group, part of the EHDN multidisciplinary working group, is active again. The vision of the group is that every Huntington patient should be able to receive comparable diagnostics, treatment and care - regardless of place of residence - and that this should be done by experts. In short: Every Huntington patient must receive comparable, high-quality occupational therapy.
Outcomes We are experts in meaningful activities of daily living with patients with Huntington’s disease. We hope by joining forces sharing experiences, developing, and evaluating the best practice Huntington’s European guidelines, that every patient, in Europe, can receive the best occupational therapy possible.
Do you want to share OT experiences working with HD? Please contact us.
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