Better knowledge and understanding of Huntington’s disease.
We work with families and professionals to inform and educate them about Huntington’s disease.
Educating professionals about Huntington's disease is key to increasing knowledge and understanding making it easier when families are visiting professionals as they have a better understanding of the disease.
This includes offering:
Understanding Huntington’s disease - course for professionals. This three-day certified course was attended by 60 attendees this year.
“I believe the training was excellent. Huntington's is such a complex disease, so I do not believe I will ever become an expert or feel confident explaining it to my colleagues. However, my knowledge of the disease has improved significantly and I believe I stand a greater chance of connecting with families suffering from Huntington's.”
- Course attendee
A series of educational webinars across the year, covered various topics as requested by professionals we worked with.
As commented by an attendee at a session targeting care homes:
“Staff gained more confidence to provide a high quality of care to residents with Huntington's disease. Some of us were reluctant and some were scared to provide care however, after the training the staff have now different views about it.”
Working with professionals
We offer a number of webinars for families covering topics that the community have raised as queries, these include subjects such as voice banking, insurance, genetic testing, seating and posture, eating and drinking plus many more. Nine webinars organised attracted 285 attendees, and the YouTube version of the webinars has been watched many more times.
This year we launched the Family Voices webinar series, four webinars sharing lived experiences from well-respected people in the community. The webinars were a partnership between the Huntington’s Disease Alliance UK and Ireland. This was a positive experience of working together with people from all over the UK attending the live sessions, the webinars are now available to watch on our YouTube channel and have been viewed over 1000 times.
With a return to more in-person events, highlights included a study afternoon in Dorset and a successful event on the Isle of Man.
The Isle of Man event was supported by Specialist Huntington's disease Advisers, Anita Daly and Theresa Westhead and was attended by 100 professionals. They also offered one-to-one family support sessions with a total of ten family members.
“We are just realising what we have actually achieved, it’s just truly amazing. I am so proud of the hard work and commitment from our small committee. Teamwork makes the dream work, we support and care together”
- Helen Martin (Support Group Leader – Isle of Man)
Mental health study afternoon
We ran a course on mental health and Huntington’s disease as part of the #HuntingtonsInMind campaign attended by 80 professionals. Due to its popularity, a second session was organised and attended by 400 professionals. It was a fantastic success to reach this number of people working in an area of such importance to the charity.
- 96% of attendees said that their knowledge and understanding of Huntington’s disease had increased as a result of the course
- 97% of poll responders said that the webinar would help them provide better quality care and 99% said that the webinar had improved their knowledge
Huntington's disease champions pilot
Working with the European Huntington's Disease Network (EHDN) we piloted an online learning program with six care homes. The program was developed by the Swedish Association and was successfully trialled in five care homes that are part of the Quality Assured Scheme. The course will be run 3-4 times a year. We have been invited to give a talk, alongside the Swedish Huntington's Association who developed the online programme.
