We spoke to Nadia Laffey about lessons learnt from working with young people as part of the HDYV project. The project’s recent highlight was a residential weekend held at an outdoor activity centre.
Firstly, can you tell us what the HDYV project is?
Huntington's Disease Youth Voice (HDYV) is a group of individuals who seek to improve the lives of young people affected by Huntington's disease through various projects with the Huntington's Disease Youth Engagement Service. Projects have included reviewing information resources, setting up peer support groups and influencing our social media to inform our work as a charity. This ensures we deliver a service designed with our young people at the heart of what we do. We regularly meet online and we were delighted to be able to hold a residential weekend recently.
Can you tell us what the residential weekend was about?
The 9 -11 February 2024 saw the second Huntington’s Disease Youth Voice (HDYV) residential at an outdoor activity centre.
The weekend provides an opportunity for young people to get together, have fun and make some friends. In total nine young people gathered from all across England and were all excited and enthusiastic to be meeting again as well as welcoming new members to their group. The weekend consisted of a range of outdoor activities including orienteering, high ropes, a challenge course and a campfire, which the young people took part in. They worked well together as a team and there was lots of encouragement and support for everyone, particularly on some of the trickier activities. The weekend was a great success and the group gave positive feedback on how much they enjoyed themselves and the time they spent together.
‘Really enjoyable and fun weekend. Thank you’
What do you think the young people enjoyed about the weekend?
The young people were enthusiastic, full of ideas and had fun on the weekend. They enjoyed the outdoor activities and were grateful to meet in person again. They were warm and welcoming to new members of the group and ensured everyone felt included. After the previous year’s residential the group had asked for more free time during the weekend to allow themselves some space, so we ensured that there was a mixture of outdoor activities, indoor activities and free time. The feedback from young people about the event was positive, with the majority of young people agreeing or strongly agreeing that the event helped them to feel less isolated, and more resilient, and increased their knowledge of Huntington’s disease.
All the young people strongly agreed that they would recommend this event to someone in a similar situation. This shows how important it is to host in-person events, which allow young people to make connections with others in similar situations to themselves.
As said by the attendees highlights included,
‘The mix of outdoor activities/inside project work/chill time’ and ‘Seeing everyone again’ ‘Connecting with other young people impacted by Huntington's disease.
Were there any challenges at the residential weekend?
The members of HDYV are spread out across the UK, making it logistically difficult to get everyone together at the same place on the same weekend. This was particularly challenging this year due to train strikes, train cancellations and engineering work, meaning that some trains were not running on the dates attendees needed to travel. We resolved public transport issues by arranging alternative transport to the event to ensure nobody missed out. Another challenge was the amount of time we had on the weekend to do everything. There was lots of work to get through and we wanted to ensure attendees had enough free time and outdoor group activities too. In the future, we may look at the possibility of extending the weekend, so that there is more time to fit everything in.
What have you found interesting about the HDYV project work?
It has been interesting to see HDYV’s project work develop and progress. The group work well together and are passionate about their projects. They have produced fantastic work so far and have plenty of ideas about what to focus on over the next year to ensure their projects continue to support other young people in the wider community. This highlights the importance of co-production with the group, as they understand what other young people in similar situations to them want and need.
What have you learned that would be useful to others?
We have learned the importance of listening to feedback about how the group work and what they want. Based on feedback, we want to ensure there is a fair spread of work between all the young people and all their project work. We will be going back to the group to ask them how they want to structure their monthly meetings over the next year. For example, do they want to carry on working on projects in small groups or would they like more cross over and support across projects? The priorities of the group can change so it is important to check in and make sure the processes in place are still working to benefit the community and to change them as the needs of the group develop. Furthermore, in terms of the weekend, we have learned the importance of checking and re-checking travel plans to ensure any transport issues are caught early on. It is useful to have a backup plan in place and check travel right up to the date of the event so that if travels plans change, it is still possible for the event to go ahead.
Have you made any changes based on your experiences and what you’ve learned?
Based on conversations and feedback that was given at the weekend, we are going to talk to the group to decide how sessions should run over the next year. This includes discussing the maximum age someone can be to be part of the group, the minimum amount of sessions someone has to attend to be part of the group and how it is best to split work across the three projects so that everyone feels they are getting enough support and help for their project to be a success. .We we may look into changing the length of time for the residential weekend. We found the time we had was not enough to fit in everything we wanted to do. We will consult with the group and look into the possibility of extending the weekend to three days next year so we can focus more on project work and provide more peer support.
