SHA Youth Service Summer Camp 2024
A story by Scottish Huntington's Association
We provided a 5-day summer camp in July 23 for 48 young people, 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 2024 did
In July 2023 we provided a 5-day summer camp for 45 young people, aged 8 – 25 years old, living in a family impacted by Huntington’s Disease. The summer camp provided a unique respite opportunity for the young people to come together, share experiences and develop coping strategies. Our camp is a highlight for many of the young people, and often one of a very limited chance for a break from living at home. Camp offers opportunities to try new and challenging activities, meet others in a similar situation and create lasting friendships helping to increase their resilience and reduce isolation.
Activities at camp included swimming, laser quest, abseiling, archery, tree climbing, kayaking, gorge walking and canoeing. Evening activities included a games night, an awards ceremony, a disco, HDs Got Talent and a visit from the Ice Cream Cart company. The young people also took part in First Aid training delivered by First Aid Perthshire.
A core part of our camp is to provide the opportunity to learn about and discuss Huntington’s disease. Throughout the week we helped to increase young people’s understanding and awareness of various issues connected to Huntington’s disease with the aim to improve their coping skills and wellbeing. Our Huntington's Disease Festival (a half-day young person conference) allows those aged 13 and older to come together in a fun and engaging group-work based session to learn more about Huntington's Disease. This helps build their knowledge and understanding of Huntingtin's Disease and increases their confidence and resilience.
Young people aged 13 to 17 took part in an Huntington's Disease gene discussion while the 18+ group attended a workshop about the HD-YAS study led by our Patron Sarah Winckless and Chair of Trustees Cat Martin. The two groups then came together to hear about Sarah’s experience of
Huntington’s disease and the importance of SHED (Sleep, Hydration, Exercise and Diet) for physical health. This was followed by a session looking at coping strategies led by Cat - APPLES: Advocacy, Peers, Positive attitude, Love, Education, Support network).
What Scottish Huntington's Association has learned
Involving young people in the planning of the project is extremely important and something which we do when putting together the plans for the event. Gathering feedback after the event helps us when planning future events. Feedback received from young people attending camp this year highlighted that they would like to have more free time at camp. The summer camp schedule was very busy with limited time for young people to do their own thing. This feedback is something we will take forward when planning the schedule for future camps.
We have learnt that having inspirational speakers who young people can look up to and relate to is extremely beneficial and something we would like to do more of at camp. We witnessed just how important it is for the young people to hear about other peoples experiences, such as our Patron Sarah Winckless who has the HD gene. Having positive role models is extremely beneficial to young people's attitude and approach to tackling life being at risk.
Involving other organisations within the camp is important for increasing young peoples learning and experience's. This year first aid training was delivered by First Aid Perthshire on the first evening of camp, covering topics such as CPR, choking, trips and falls, wheelchair support and using a defibrillator.
Engaging with young people who have never attended camp before and encouraging them to attend has been very beneficial, with 14 young people attending camp for the first time this year. It is important that all young people have the opportunity to experience camp and that we encourage those who have never attended before who are often very nervous to leave home. Youth Advisors worked with new attendees ahead of the camp to ensure that they felt confident to attend and that things were put in place at home to enable the young person to relax knowing that their parent is being cared for.
How Scottish Huntington's Association has benefitted from the funding
The funding has enabled us to continue to improve our annual summer camp, allowing 45 young carers to enjoy a break away from home whilst developing coping strategies and expanding their peer support network. We have been able to reach out to new families with the highest number of 'first timers' attending this years event. Being able to put on a successful camp also allows us to share our knowledge and skills with other organisations who are planning similar events. We work closely with Huntington's Disease organisations both within the UK and worldwide and we are open to sharing our knowledge of planning and organising a summer camp for young people impacted by Huntington's Disease.
50 young carers will have the opportunity to develop new peer relationships/enhance existing relationships by taking part in group sessions and activities at summer camp. 50 young carers will have access to a support network which understands their individual situations.
This outcome has been achieved however the number of young carers who attended camp was slightly lower (45) than the original target of 50, due to last minute cancellations. All of the young carers who attended had the opportunity to develop new peer relationships/enhance existing relationships by taking part in group sessions and activities at summer camp. The young carers who attended have access to a support network which understands their individual situations. 93% of young people stated that they had made at least one new friend at summer camp, with 98% of attendees agreeing that camp helped to strengthen their peer support group. Quotes received from young people on what attending camp means to them; “Being able to reconnect friendships and tell sweet and bitter stories about what Huntington’s has given and taken from me and be able to be deeply emotionally agreed with”. “Getting a break from home and also getting to see your friends and making new friends along the way"
K self-referred to our service in May 2023. From a very rural village, he was struggling to come to terms with his Mum's Huntington's Disease symptoms. K was feeling overwhelmed from a lack of knowledge and understanding of the illness, and had no opportunity to discuss Huntington's Disease within the family. His mum was in denial of being symptomatic and didn't want to acknowledge being unwell. K undertakes a significant caring role around the house. K was very keen to meet up with others his age and shared experiences of growing up in an Huntington's Disease family. K has suffered from depression and anxiety, also previously having input from CAMHS. Mum can display anger and aggression, and often gets emotional when Huntington's Disease is mentioned or brought up. By attending camp, this allowed K to meet with other young people from an Huntington's Disease family for the first time. He was able to connect and established really strong bonds with those in his age group across the week. He also hugely benefitted from our workshop sessions on research and discussion about the Huntington's Disease Gene. The week has lead to K feeling more positive and confident about discussing Huntington's Disease, and has allowed him to establish a peer group for support and to chat to. This has been particularly strong online and via messaging (helping to reduce K's isolation) and offers him an outlet to discuss and share experiences with others which he missed before. K has also been able to meet up with other young people from our Summer Camp and continue the support and bond out with our planned meet ups. This has proved particularly important for K as he is now considering genetic testing, and allows him the chance to speak to others about their experiences and learn from his peers.
Young carers will have the information they need to make decisions that affect their lives. 30 young carers will increase their caring skills toolkit by attending structured group work sessions. 30 young carers will discuss their caring role with their peers.
45 young carers had the opportunity to discuss their caring role throughout the summer camp with many opportunities informal opportunities to talk with their peers and also during structured group work sessions. Our Huntington's Disease Festival allows young carers to come together in a fun and engaging group-work based session to learn more about Huntington's Disease. 91% of attendees felt that they could cope better with Huntington’s disease because they attended camp, with 80% agreeing that they understood Huntington’s disease better after their week away. 80% reported that their confidence had increased during camp, and 69% thought they were better prepared for life at home after attending camp. 76% felt more confident to speak about Huntington's Disease with their parents. 72% of young people felt that their week at camp had improve their ability to support their family member with Huntington’s disease. “Camp for me means getting to learn and have fun.” “Reconnecting and learning new things about HD."
Q lives with her gran, Q's maternal grandfather has Huntington's Disease. Q's gran struggles with physical health and also experiences periods of low mood and apathy. Q has never been away on an overnight residential before. She has had the opportunity through school - but has never taken these chances up as she struggles to interact with peers. Her behaviour can be challenging and often leads to arguments with friends. Q was supported to come to camp through many sessions of preparation with her specialist youth advisor, to help explain camp and help Q to understand the expectations and boundaries that are in place. Q had an amazing time at summer camp - and one of the highlights was the constant smile on her face and the challenges she set herself though out the week. Following our return from summer camp, Q's teachers report knock-on benefits from her week away. Her school reported that they had noticed a very positive impact on Q's interaction with her peers, her confidence had increased and that her transition to secondary school was less daunting for her. "The change we have noticed since Q has been away at your summer camp has been incredible. You have all done a wonderful thing for her, and it looks like she has found lasting friendships".
Young carers will have access to support and advice which will help them make positive choices for the future. 50 young carers will attend summer camp. 30 young carers will attend a workshop designed to look at emotional wellbeing.
45 young carers attended camp and attended workshops which focused on improving their wellbeing. The camp helped to increase young people’s understanding and awareness of various issues connected to Huntington’s disease which improves their coping skills and wellbeing. 81% of attendees felt that their wellbeing had improved after attending camp, with 78% agreeing that they had learnt a new coping strategy during camp. Comments received from young people included; “Has been really beneficial for my self-confidence”. "SHA camp helps me remain positive about my future." “As an over 18, between working full time, studying, caring responsibilities, and everything else; a week away at camp, where your biggest worry is how cold the water in the Feshie is, makes life more bearable.” “Camp means so much to me because it’s a break for me and it makes me so happy to just be here”.
A's Mum has Huntington's disease. She is a young carer for Mum who has difficulty with chorea, mood symptoms and difficulties with her memory and planning. A does a lot of the household chores, helps with cooking for her Mum, and will often take care of financial tasks including paying bills and doing food shopping. A has struggled with being bullied at school and people telling her that her Mum is drunk (a common misconception with Huntington's Disease). A attended her first camp and quickly made a small, but strong peer group. The other girls took A under their wing and helped her settle into camp. They quickly built a bond and shared experiences and lots of laughs. One hugely positive outcome from A's week away at camp is that she learned to swim from her new friends showing her how it is done. A had always been nervous around water (and had actually refused to attend previous water based activities) so this was a major achievement for her. When her Specialist Youth Advisor met up with A following camp she reported that she had been going to the local swimming pool with her Mum and had loved being able to show her Mum what she had learned while away at camp. This has also helped give her an outlet for further exercise and relaxation opportunities away from her caring responsibilities.