What we have learnt from our first young person's residential with our Youth Engagement Service - HDYES.

Residential

Between 7 and 9 August 2024, our first HDYES residential for over ten years was held at Boundless Outdoors Malvern outdoor activity centre. 30 young people aged 8-17 gathered from across England and Wales for a few days full of fun, activities and adventure. For most of the attendees, this would be the first time they would meet another peer affected by Huntington’s disease. By the end of the three days everyone had become friends.

There was a range of outdoor activities young people were involved in during their stay, including crate stack, problem-solving, archery, climbing, canoeing, zip wire, low ropes, orienteering and an HDYES staff-led Huntington’s activity. The group was split into three smaller age-appropriate groups. Each group worked well together during the activities and was encouraging and supportive of one another. Most children tried each activity, even when they were a bit unsure. The group had lots of free time to chat, play and bond with each other. It was lovely to see them make new friends and come out of their shells in the few days they had together.

The event was successful and the group gave positive feedback about making new friends, having a fun time, feeling less alone and feeling reassured from speaking to peers. Many are already looking forward to next year’s residential.

What went well?

The children all got along well and made friendships quickly. They loved having the space to meet other children in similar situations to them. For most, this would have been their first opportunity to meet peers from a family with Huntington’s disease. Lots of children told staff how they had opened up to their peers and talked about their family life. This is so important for these young people and gives them a place to feel understood and heard by their peers.

The activity centre also provided a space for children to try new activities in a safe and welcoming environment. It allowed them to have some time away from everyday life and have fun. We learned from our youth voice residents, that having free time was important for the young people, so we ensured there was time for them to run around, play games or chat. The feedback from the event was overwhelmingly positive, indicating the importance of having in-person events and providing a safe space for these children to meet.

What were the challenges?

Huntington’s disease is a rare disease, meaning that families affected are spread out across the whole country. This can make it logistically challenging to bring everyone together in one place and often means that families have to travel far. We tried to alleviate this by having the residential as central as possible and providing an option to travel by train and coach, so those without access to a car could still attend. It is also helpful to be able to offer reimbursement for travel costs, which can sometimes be a barrier.

Another challenge was that the children felt nervous about attending. Signing up to three days away with people you have never met before can be quite daunting. However, HDYES staff called every family before the residential and checked in about anything their child might need while away and anything we could do to help ensure they felt safe and comfortable attending. We adapted activities to suit children’s needs and checked in regularly with families, to ensure they had the information they needed. We reassured young people that everyone was going to be in the same situation and some youth workers talked about what to expect at the residential during their one-to-one sessions. On the first day of the event, we did introductions in activity groups and staff facilitated initial conversations. The children started chatting and forming groups early on and some commented they had made ‘friends for life’ by the end of the trip. This shows the importance of communicating with the families and keeping them informed, as well as listening and making adaptions to ensure everyone feels safe and welcome.

What have you learned?

We have learned that despite young people being initially nervous about attending the residential, they want more. Feedback from the event indicates that the children made lots of friends and found the time they had together invaluable. They want a longer residential and to be able to meet each other more often.

Next year we plan to host a five-day residential, extending the time the children have away together to ensure they get that quality time with peers. We have also added ten additional spaces to the residential event so that more children can benefit from attending.

Entering year two of our lottery funding, we are increasing the number of local events we offer to young people and have listened to verbal feedback about where they want these events. One request was to have an event in Central London, as it is easy for many to access even if they don’t live within the city. We have now organised this and will be hosting a London event in October half term.

We are looking forward to hosting our second under 18s residential in August 2025.

 Thank you to Nadia, Youth Engagement Service Project Officer for this update.