SHA Youth Service Summer Camp
A story by Scottish Huntington's Association
We provided a 5-day summer camp in July 2022 for 38 young carers, aged 8 – 25 years old, living in a family impacted by Huntington’s Disease.
The camp provided a programme of customised activities, one-to-one and group sessions on the issues surrounding Huntington’s Disease and being a young carer.
What SHA Youth Service Summer Camp did
In July 2022 Scottish Huntington’s Association Youth Service delivered its first summer camp in two years at Lagganlia Outdoor Centre. A total of 38 young people attended, including nine young people who had never been to camp before. All young people who are engaged with the youth service were invited to attend.
For young people who have significant caring responsibilities at home the youth advisors worked closely with the HD Specialist team and other services to ensure that an appropriate care package was implemented to enable young carers in these situations to attend.
The summer camp provided a range of fun activities which included gorge walking, kayaking, archery, games night, drumming fun, swimming and a party on the last night. These activities allowed the young people to have fun with their peers, reduce their isolation, try new things, boost their confidence and escape their caring responsibilities at home.
Our Specialist Youth Advisors led workshops during the camp which aimed to increase knowledge and understanding of key issues around HD including symptoms, bereavement and loss and increase resilience and coping skills. This included a half-day Young Person’s Festival for those aged 13+ which offered young people the opportunity to discuss HD in a safe, facilitated environment.
The key highlight of summer camp was seeing the young people back together with each other after two years without a camp. During the pandemic, the young people have desperately missed the opportunity to meet up with others in a similar situation to them, have some fun, try new things and have the respite from caring that they desperately need. The value and benefit of summer camp in person to the young people cannot be understated. There is much more scope to engage, support and provide intervention during in person events.
The number of young people attending summer camp this year was lower than expected. There were 50 young people signed up to take part in the event however a number of young people had to drop out very close to the event due to personal and family circumstances including bereavement, illness and testing positive for COVID.
What Scottish Huntington's Association has learned
The youth service has many years of experience of planning and organising the summer camp, the team have learnt the importance of being flexible and adaptable as plans can often change at the last minute due to various reasons. The team have been successful in reaching out to young people who have not previously attended a summer camp and supporting them to attend.
This year due to staff sickness the youth team had one less staff member to run and deliver the event and were able to successfully recruit volunteers from within the organisation to help out. The main learning has been just how important the camp is to the young people attending. It was clear to see how much the young people had missed out during the pandemic and it provides the team with motivation to continue to develop the camp and ensure it continues to meet the needs of the young people attending.
How Scottish Huntington's Association has benefitted from the funding
The funding from Creative Breaks has allowed Scottish Huntington's Association to deliver the first summer camp in two years to 38 young carers living in families impacted by Huntington's Disease. Although we have a wealth of experience running the camp we continue to learn and develop each year in order to meet the needs of the young people attending. We have built good relationships with local organisations and companies who are involved in the summer camp. Through securing the funding, it also allowed us to apply to other funders and secure the remaining funding required to run the camp. Without the support of Creative Breaks, we would be unable to provide this service which would be to the detriment of the young people living with this devastating condition in their families.
Young carers living in a family affected by HD feel safer and are less isolated. 35 young carers will improve their understanding of Huntington's Disease. 50 young carers will develop new peer relationships/ enhance existing peer relationships.
38 young carers attended summer camp and had the opportunity to enjoy life outside of their caring role. 93% felt that camp offered them a break from Huntington's Disease at home, with 76% agreeing that they had benefited from a break away from caring while at camp. 38 young carers developed new peer relationships or enhanced existing ones. The young people attending were able to relax and socialise with their peers whilst taking part in fun activities and during focussed group work. 100% of young people said that they felt included and welcome at camp, with 93% saying they looked forward to camp because it let them connect with friends. 38 young carers improved their understanding of Huntington's Disease by attending camp and taking part in workshops which focused on various Huntington's Disease topics which aimed to build understanding of Huntington's Disease, coping skills and resilience. 78% of young people felt that they could cope better with Huntington's Disease because they attended camp. 86% agreed that they understood the symptoms better after their week at camp.
Poppy, aged 10, was referred to the youth service during the pandemic. Poppy’s Dad has Huntington’s disease, and her Mum also has her own mental health difficulties. Poppy has a younger brother who she helps care for, including getting him to school on time and helping with his homework. Poppy was engaging regularly at online events but was very much looking forward to coming to an in-person event and having a break away from home. This was the first summer camp Poppy had attended, and she thrived during the week, and over the course of the 5 days really engaged with other young people and staff. Youth Service Lead, Grant Walker commented: “You could see her confidence building during the activities and she became more animated and positive throughout the week.” Poppy benefited hugely in being able to relax at camp and escape her caring responsibilities at home. She was able to take part in new activities which she wouldn’t have otherwise had the opportunity to do. At the end of the week her evaluation stated: “It was brilliant to come along to camp and just have fun. I didn’t have to worry about Dad or any of the boring stuff I normally do about the house. It was great to be able to come along and do all these new activities – I’ve never jumped off a cliff into a river before, I LOVED IT! We don’t really have a lot of money to do stuff like this normally – my dad doesn’t work so we don’t really go out and about that often" "This week has been great – it’s really given me a chance to do new things I wouldn’t have thought about before, like the drum fun workshop. We have an African drum in my school, so I think I’m going to ask to practice on it for next time!” During her time at summer camp Poppy made a very strong friendship with another girl who lives locally to her. This was one of the first opportunities Poppy has had to really connect and socialise with her peers face-to-face and this resulted in the forming of a new friendship. Poppy made plans to meet up with her friend when they get back home.
Outcome: Young carers will have the information they need to make decisions that affect their lives. Target 1: 30 young carers will increase their caring skills toolkit Target 2: 30 young carers will discuss their caring role with their peers
38 young carers had many opportunities to discuss their caring role throughout the summer camp with their peers and during structured group work sessions. 23 young carers attended the ‘Reconnecting: Coping well in Huntington's Disease festival which focussed on the signs, symptoms and stages of Huntington’s Disease. Through games, presentations and discussions the young people were able to formulate their own care plans for their parent and discuss what strategies may work with different symptoms and at different stages. 100% of young people found the festival session beneficial. 88% of young carers reported that they had learnt a new coping strategy. 78% of young carers reported an increase in their ability to look after their family member with Huntington's Disease because they attended summer camp. 81% felt more confident to speak about Huntington's Disease with their parents.
Ben attended camp with his younger brother Michael. As the eldest sibling, Ben takes on caring responsibilities at home and helps to take care of his younger brother. Ben has previously attended summer camp with his brother and is very protective of him. Ben was continuing to take on a caring role of his brother whilst at camp. The youth advisors noticed this during camp and could see that Ben wasn’t fully able to relax whilst at camp. The youth advisors aim to empower young people at every opportunity, and they intervened and had a discussion with Ben to reassure him that he did not have to care for his brother at camp and that he should make the most of the experience for himself. Ben commented: "When I came along last time, I really felt a duty to look after my wee brother – and yeah it kinda impacted on my time away. Now I know that I don’t need to do that here, so it’s been great to focus on spending time with my friends here and not to worry about him so much!" Ben was able to fully relax and escape from his caring responsibilities whilst at camp. Connecting with his friends and trying out the activities gave him a real boost. Ben then felt recharged when returning home and once home he felt empowered and used the skills, he had learnt at camp to prioritise some time for himself at home which was extremely important for his own wellbeing.
Young carers and those they care for have improved physical, mental and emotional wellbeing. Target 1: 30 will attend a workshop designed to look at emotional wellbeing Target 2: 50 young carers will attend summer camp
38 young carers attended summer camp and were able to relax and have fun with their peers by taking part in a range of activities which boosted their confidence and improved their overall wellbeing. 38 young carers attended workshops and took part in group sessions which looked at emotional wellbeing. Young carers learnt coping strategies which has had a positive impact on their home life. 91% of attendees felt that their wellbeing had increased after attending summer camp. 88% of young people reported that camp had increased their confidence. 76% agreeing that they had benefited from a break from Huntington's Disease at home. Comments received on feedback forms: “I’m so pleased that you pushed me to try again to jump into the river - I was so scared but it was fun! Thanks for letting me come along to camp!” “This was my first camp and it’s been awesome. So good to meet people from a Huntington's Disease family and it’s been such fun - I can’t believe how high I jumped from.”
The focus of summer camp is to provide young people living in a Huntington's Disease family an extended break from caring and being around Huntington's Disease. An additional benefit is the respite and break offered to parents and individuals with Huntington's Disease because their children are with us. Christine cares for her husband Gary who has Huntington's Disease, their daughter Holly, aged 11, attended camp for the first time this year. The family have been having quite a difficult time recently as they are coping with Gary’s recent physical changes and mental decline. Christine commented that her daughter ‘had a ball’ at summer camp and it also had a very positive impact on both Christine and Gary. Christine highlighted that this was the first week that they had been alone since their daughter’s birth (almost 12 years ago). Christine and her husband experienced a personal reconnection and some vital alone time that they had been unable to have for so long. The extended break had a positive impact on the whole family and resulted in them being ‘the most settled’ in a number of years. They now have a positive memory of the week to help them through future challenges. Christine commented; ‘” It was a great chance for us all to recharge our batteries’ and ‘remember our relationship before I was a carer”.