The Patient Journey

We’ve been working with people with Huntington’s disease and their families for over 20 years. We’ve learned a lot about Huntington’s in that time, but the important thing to remember is every Huntington’s journey is different.

We’ve gathered together useful information and best practice to help you when working with your patients and families.

Helping you on the patient journey

The Huntington’s journey can be vary a lot from person to person – even members of the same family. But there are some common interventions that can help at different stages.

We’ve produced an example patient journey that charts the progression of the disease alongside the interventions that may be available for patients. However, services available for people with Huntington’s vary across England and Wales, so not all people will have access to every service that is recommended.

If you’d like to discuss the patient journey for one of your patients, our Specialist Huntington’s Disease Advisers can help. To contact the adviser for your local area visit our Support near you page.

  • 1. Individuals at risk
  • 2. Huntington's Disease Association
  • 3. General practitioners
  • 4. Clinical genetics
  • 5. Diagnosis of Huntington's disease
  • 6. Clinical presentation
  • 7. Behavioural symptoms
    • 7a Clinical assessment of mental health symptoms
    • 7b Management of behavioural symptoms
  • 8. Cognitive and emotional symptoms
    • 8a Clinical assessment of cognitive and emotional symptoms
    • 8b Management of Cognitive and Emotional Symptoms
  • 9. Motor symptoms
    • 9a Clinical assessment of motor symptoms
    • 9b Management of motor symptoms
  • 10. End of Life
  • 11. Resources and Services


How we can help

We’re here to support people with Huntington’s disease, their friends and family and also the professionals who work with them. We do this through our Specialist Huntington’s Disease Advisory Service.

Our Specialist Huntington’s Disease Advisers can:

  • offer information and advice on Huntington’s disease, and suggest relevant literature for further reading.
  • identify suitable respite breaks, residential care facilities and other services such as specialist clinics and day centres.
  • provide training sessions for service providers such as social services, nursing homes, and residential care staff teams.
  • work with families to provide advice, information and practical and emotional support.

If you’d like to make a referral to our service, or would like an informal chat about Huntington’s disease, please contact your local Specialist Huntington’s Disease Adviser.

Our other support services

We have a dedicated specialist adviser who can give advice on Juvenile Huntington’s disease – find out more here.

Our Youth Engagement Service can also support young people aged 8-25 who are growing up with Huntington’s in the family.