We’re pleased to share a new set of professional guidelines designed to support those working with people affected by Huntington’s disease.
Many professionals often feel uncertain about how best to support individuals and families living with Huntington's disease due to it's rarity and complexity. Our new set of guidelines aim to address that gap by providing a clear and accessible starting point, helping professionals to build confidence and inform further learning.
About the guidelines
This comprehensive set of resources covers the following areas:
- Cognitive changes in Huntington's disease, written by Dr Sarah Gunn, NHS Clinical Psychologist and Lecturer at the University of Leicester
- End of life care for people with Huntington’s disease, written by Dr Claire Stockdale, Palliative Medicine Consultant
- Genetics and genetic testing in Huntington’s disease, written by Dr Nayana Lahiri, Consultant Geneticist
- Mental health treatment and support for adults who have Huntington’s disease, written by Dr Sarah Gunn and Dr Akshay Nair, Consultant Neuropsychiatrist and Trustee of the Huntington’s Disease Association
- Nutritional care for people living with Huntington’s disease, based on guidance from the European Huntington’s Disease Network (EHDN) Standards of Care Dietitians Group, and reviewed by Ciara Mackie
- Occupational therapy for people living with Huntington’s disease, written by Alex Fisher, Senior Occupational Therapist in Neuropsychiatry
- Physiotherapy for people with Huntington’s disease, written by Dr Una Jones, an expert on the implementation of physiotherapy research practice in Huntington’s disease, but largely based on the Quinn et al. (2020) clinical recommendations on physiotherapy for Huntington’s disease
- Social work for adults who have Huntington’s disease: a practice guide, developed by the Huntington’s Disease Association and building on earlier work with the British Association of Social Workers
- Speech and language therapy for people who have Huntington’s disease, written by Erin Probert, a Clinical Lead Speech and Language Therapist, and Sarah Roberts, a Highly Specialist NHS Speech and Language Therapist
- Treatment of movement disorders in people living with Huntington’s disease, written by Professor Anne Rosser, by a Consultant Neurologist, and lead for the South Wales Huntington’s disease service.
The guidelines have also been reviewed by Allan Adams, Gemma Haverson, and Lynn Johnson, who have helped ensure the guidelines reflect lived experience alongside clinical expertise.
The full set has been endorsed by the European Huntington’s Disease Network (EHDN)
Several of our guidelines have also received endorsement from the relevant leading professional bodies. These include:
- ACP-UK (Association of Clinical Psychologists UK)
- RCOT (Royal College of Occupational Therapists)
- BASW (British Association of Social Workers)
- Royal College of Speech and Language Therapists (RCSLT)
We thank all authors, reviewers, contributors, and endorsing organisations for their time, knowledge, and commitment.
By providing clear and practical guidance, these free to download resources aim to support professionals in delivering informed and coordinated care both to people living with Huntington’s disease and their families.