As part of our campaign to strengthen care, the Huntington’s Disease Association presented at the Genetic Counsellor North West Development Day.
There were 40 Genetic Counsellors from across the North West of England who attended in person and virtually.
The aim of the day was for the North West Genetic Counsellors to see the support and services available for patients with neurological and neuropsychiatric genetic conditions.
We had the opportunity to present on the Huntington’s Disease Youth Engagement Service (HDYES), showcasing the vital support we provide to families and children at risk of Huntington’s disease. Our presentation highlighted how, when, and why children may learn about their risk, the range of services we offer, and our recommendations for discussing the condition with young people.
Lydia Greensmith, a Genetic Counsellor said,
I’ve sign-posted to the Huntington’s Disease Association in the past but now, seeing the incredible work that you do - I will actively be referring to your service.
We were also joined by one of our Ambassadors, Niall, who spoke to the attendees about his Huntington’s journey and his experience with a Genetic Counsellor in the North West. Niall openly shared his very positive experience with the Genetic Counsellors that he was supported by during he and his wife’s PGT-IVF journey in 2019, and his own genetic testing journey in 2023. "Every time I've reached out, or me and wife had had a question, someone has always been there to answer them and support us", Niall says.
When talking about the support he got from his Genetic Counsellors, Niall said:
I always thought I had Huntington's. After testing, I really struggled. They referred me for psychological therapy sessions. I had seven sessions over eight months. It did everything I needed. Trying to explain to friends and family that I'm struggling with the good news is hard. But these sessions helped me so much. I just wanted to get involved in some way. I reached out to ask to be an ambassador so I could share my positive story because it's so under-talked about. I have family down south who haven't had the same support as me. And doing this is helping my family.
Both the HDYES presentation and Niall’s talk opened up the room to lots of questions. Everyone who spoke up on the day was grateful for the knowledge they received from both the charity and Niall’s lived experience.
We are grateful to the North West Genetics team for giving us the opportunity to speak at their development day. We hope that events like these provide healthcare professionals with a deeper understanding of what someone at risk of Huntington’s is going through and how we can work together to support those going through genetic testing.
Tom Ketley, Trainee Clinical Scientist and organiser of the event said:
We just wanted to say a massive thank you for speaking to us about the Huntington’s Disease Association. We have had some great feedback from the attendees. Hearing about Niall’s journey was very emotive and it is always invaluable for us to hear more about what our patients go through. We certainly found it useful.
Campaigning: Strengthening Care
We are working hard to improve health care for people living with Huntington's disease. We’re providing training and developing guidelines for health professionals on how to offer effective support.