A webinar for GPs
We understand how important it is for healthcare professionals to have a better understanding of Huntington’s disease. Better-informed professionals mean better care and support for you and your family. Over 8 in 10 people (82%) told us in response to our recent campaign survey that we should prioritise giving guidance to health professionals on what good care and support looks like for people living with Huntington’s disease.
As part of our commitment to improving care, we recently held a webinar specifically for GPs to help them gain more knowledge about Huntington’s disease. The goal was to equip them with the skills and confidence to offer better care to their patients.
The session was hosted by Dr Marianne Novak, Consultant in Neurology, and Dr Nayana Lahiri, Consultant in Clinical Genetics, from St George’s Hospital. We are delighted that, 150 GPs registered to learn more about the disease, its symptoms, and how to avoid common mistakes and misconceptions in care.
What was the webinar about?
Marianne talked about the complexity of Huntington’s disease, focusing on how symptoms can vary and change over time. She stressed the importance of listening to families, who are often the first to notice early signs.
We also need to be careful not to over-treat. The earliest sign of Huntington's disease is usually mild chorea—small, fidgety movements that families might notice before the patient does. Treatment isn’t always necessary unless these movements start to affect daily life.
The webinar also highlighted the importance of having a named GP as part of a Multidisciplinary Team (MDT) to ensure coordinated and continuous care—a key part of what we’re campaigning for at the Huntington’s Disease Association.
Nayana focused on the genetics of Huntington’s disease, covering testing and family planning options. These are important conversations that many people at risk of, or living with, Huntington’s disease have with their GPs.
The webinar reminded GPs how vital it is to work closely with families:
Patients, families, and carers are an integral part of the team—many are painfully experienced in Huntington’s disease management.
How do these sessions benefit professionals?
We surveyed the GPs who attended the webinar, and the feedback was overwhelmingly positive:
- 87.5% said they felt more prepared to care for people with Huntington’s disease.
- 75% agreed they now feel more confident in providing care.
What’s next?
We’ll continue developing webinars and training sessions to ensure healthcare professionals are equipped to support people affected by Huntington’s disease.
We hold monthly online sessions for those working in care homes, which are always well attended. Future webinars will cover important topics like sleep management and continence care, based on suggestions from specialists and the Huntington’s disease community.
How can you help?
We have GP booklets that we can send out if you wish to drop them off at your local General Practice. We also have a digital version and the link to the webinar on YouTube to email to your GP.
Watch and share the webinar.