Scottish Huntington's Association Youth Camp
A story by Scottish Huntington's Association
We provided a 5-day summer camp for 50 young people from across Scotland, aged between 8 – 25 years old, living in a family impacted by Huntington’s Disease.
The camp gave young people the chance to grow in confidence and develop personally while getting support on issues relating to Huntington’s Disease and also being a young carer.
What Scottish Huntington's Association Youth Camp did
These are the outcomes that we met which match Creative Break's priorities, Carers and those they care for will have improved physical, mental and emotional well being, Carers will have more opportunities to enjoy a life outside of their caring role, Carers will be better supported to sustain their caring role and Carers who are less likely to ask for support will feel better supported and more aware of sources of help.
Scottish Huntington's Association is the only charity dedicated to helping young people and adults living with Huntington’s disease in Scotland. We have a strong track record in delivering high-quality services to adults and young people. One of the main focuses of the SHAYP is to offer young people an opportunity to escape their caring responsibilities, meet others in a similar situation and try new experiences. Since 2008, up to 50 young people have attended a 5-day Summer Youth Camp each year.
The camp gives young people the opportunity to grow in confidence and develop personally through taking part in outdoor activities and adventures, as well as one-to-one and group sessions with Scottish Huntington’s Association Counsellors, and group discussions on the issues surrounding Huntington’s disease and being a young carer. All young people invited were known to the Scottish Huntington's Association and living in families impacted by Huntington's Disease. Over 120 young people were invited and 51 attended.
In 2018, the camp took place at the Laganllia Centre for Outdoor Education, near Aviemore, Scotland in July 2018 which is a fantastic venue with an excellent choice of activities including duckies, white water rafting, skiing, gorge walking, mountain biking, mountain climbing to name but a few.
During their break away the young people developed and maintained peer relationship, discussed young carers specific issues and relaxed away from caring responsibilities.
What Scottish Huntington's Association has learned
Providing respite opportunities for Huntington's disease families is integral to a young persons long term coping. Peer Support has a far reaching impact for the young people, especially post camp. Encouraging new young carers to camp has improved benefits for them and the entire group.
Organisation is paramount. Set a plan of action with deadlines and targets. Ensure you meet all your deadlines. Provide opportunities for the young people to discuss any concerns or worries they may have. Record whilst at camp any issues raised by young people to ensure that these are tackled after camp.
How Scottish Huntington's Association has benefitted from the funding
SHAYP is recognized as a world leader in providing support services to young people impacted by HD and Summer Camp constantly acts as the flagship event for our Youth Program. We continue to set the bar worldwide for new forms of outreach and support for young people. The numbers in 2018 were higher than previous years, with 51 young people in total attending, 44 of who were under the age of 18. This meant Summer Camp was at full capacity this year, which is a mark of its popularity with young people. “The Scottish Huntington's Association Youth Project is leading the way through its pioneering work with families. This is a UK first – no other organisation has developed such specialised information about the condition specifically for young people.” Fiona McLeod MSP, Acting Minister for Children and Young People.
Carers and the people they care for will have improved well-being.
51 young people were able to attend camp and have a break from their caring responsibilities, while also receiving support from their peers. 100% of young people rated camp as a positive experience. Over 90% said they felt more secure and safer at camp than at home.
As a young person, living in a family with Huntington’s disease, can have a profound impact upon your physical and emotional wellbeing. R is 19 years old and is sole carer for his Mum who has Huntington’s disease. R attended his first camp with SHAYP and during the camp met other young people who have shared experiences similar to him. Prior to camp, R displayed as a very capable, intelligent and sociable young man, however in the lead up to camp he disclosed that life was increasingly difficult and he was struggling with his mental health, feeling down, life wasn’t worth living, struggling to cope. R came to camp under the advisement of his specialist youth advisor and met other young people who could empathise, as they had also experienced these feelings. R formed a close bond with a group of young adult carers and they discussed in detail issues which were affecting him, such as watching his Mum die, worrying about the genetic risk, how to care properly to name but a few. R was also educated about the research being undertaken for treating Huntington's disease which alleviated some of his anxieties. Following camp, R has sustained close bonds with his peer group, they have continued to stay in touch via social media and have met up on at least three occasions. R reports that this support from his peer group, has helped him to cope with his difficult days and through facilitated discussions with staff he has developed a wide range of coping skills to manage the hard days and maximise the benefits of the good days. Prior to attending camp, R rated his mental health as a 3, and 3 months post camp he rated his mental health as having improved to a 7. R explains that “I’d never been depressed before, but life was getting on top of me. I went to camp and met a group who understood how I felt the way I did, and why I felt the way I did. They helped me to understand the disease better and gave me practical ways to support my Mum. Life isn’t perfect, but I’ve got a support network around me now, that I didn’t have before. This has all helped how I feel and how I cope. If I hadn’t gone to camp, I wouldn’t have that support now”.
Carers will have more opportunities to enjoy a life outside of their caring role.
Caring (especially within a Huntington's disease family) can be incredibly socially isolating and result in young people being unable to experience social activities outwith their caring role. It is therefore incredibly important that they are given the opportunity to step away from that. In 2018, SHAYP delivered focused group work sessions on Huntington’s disease for 51 young people including age appropriate information on the symptoms and management of Huntington's disease. The younger attendees were also able to receive support and advice from their peers.
M is 13 years old and life involves caring for Gran. M and his Mum are sole carers for his Gran who can no longer talk, has difficulty understanding dangers, is unstable on her feet and has mood swings. M attends school daily, however when he returns home from school, Mum goes to work and M is sole carer for Gran for 4 hours each evening and weekends. M enjoys caring for his Gran and speaks positively about this role, however he identified that apart from school, he doesn’t have a life outside of caring. M attended camp and thrived with the range of activities which were on offer. Whilst M is always pleasant to staff when visiting, he can often look tired and burdened. During camp it was observed that M had a smile on his face from morning till night and was laughing, smiling and joking constantly during camp. M explained “I know I don’t have to worry about my Gran as she’s in respite to let me have my holiday, and give Mum a break too. I’ve loved being at camp, it’s the best fun ever cause we’ve swam in the river, jumped of rocks, climbed trees, went skiing, chilled out, had a laugh. I feel dead happy inside, like I don’t need to worry about anything”. This respite opportunity provided M with the break he needed to reflect upon his life and priorities. Following camp, M has looked into going out with friends one evening after school and is excited about attending. He openly admits he wouldn’t have thought it possible had he not attended camp and realised that it’s okay to have time off caring.
Carers will feel better supported to sustain their caring role.
SHAYP delivered a focused group work session on Huntington’s disease and interlinked this with coping skills and the roles and responsibilities of young carers throughout the session. This gave the young people the information they need to continue to access the levels of support they are entitled to post-camp.
Caring, is incredibly difficult and none more so in the case of H who along with her elder sister and father care for her mother who’s Huntington’s disease is characterise by tearfulness, lack of interest, difficulty planning and prioritising and pronounced movement disorder. H, not only has to care for her mum, but she also takes care of her baby brother. H has struggled to care for her Mum and sibling and often expresses anger and resentment that she has been thrust into this role. H attended camp and with the support of the group, learned about appropriate caring, discussed in a safe environment what level of care she wished to undertake and why she was upset and resented her current caring role. H developed a list of areas she was happy to support Mum with and the other areas were discussed post camp with her Dad and other services. H highlighted that attending camp and meeting others who had experienced similar difficulties had helped to sustain her caring role as prior to camp she was getting ready to leave home and live with other family members. H explained “caring’s really hard and I’ve got two people who need me. It wasn’t easy and I wanted to give up. I met another couple of people at camp like me, who totally got what was happening and they told me what they do. I’ve tried that now I’m home and it’s worked. I’ve got a plan that helps me to do what I need to and I know ifs it’s getting too much who to talk to. Being at camp has kept me caring for my Mum and brother”.