SHA Summer Camp 2021
A story by Scottish Huntington's Association
During the summer holidays 38 young carers living in a family impacted by Huntington’s disease took a break from their caring responsibilities by attending an activity day. Young carers took part in a programme of activities including archery, kayaking, paddle boarding and bowling.
What SHA Summer Camp 2021 did
We had originally planned to run a 5-day residential summer camp for young carers living in a family impacted by Huntington’s disease (HD), however due to COVID-19 restrictions this was not possible. We worked with a group of young people to develop an alternative option, we discussed delivering an online version of the camp however this option did not interest the majority of young people. As many of the young people were feeling very isolated they were very keen to meet face-to-face.
We decided to pause planning and await information from the Scottish Government on restriction levels. With the easing of restrictions, we were able to deliver local one-day activities to smaller groups of young people. We planned to deliver 4 activity days across Scotland, however our event planned in Aviemore was cancelled at short notice by the activity provider due to a positive Covid case. Below is an overview of the activities that were delivered:
•6th July - 15 young people from Fife and Lothian attended Broomlee Outdoor Education Centre in West Linton and took part in activities including archery, wires course and tree climbing. •14th July- 15 young people from Forth Valley, Glasgow and Ayrshire attended Pinkston Water Sports in Glasgow and took part in activities including kayaking, paddle boarding and bowling. •26th July – 8 young people from Grampian and Tayside attended Lochter Activity Centre and took part in activities including digger driving, segway experience and go-karting.
The biggest highlight of the project was seeing the young people come together after an extremely difficult period. It was clear to see the positive difference meeting face-to-face had on the young people attending. This was the first opportunity for the young people to take part in a group activity led by the youth service since January 2020. Young people were able to relax, have fun and escape their caring responsibilities.
The biggest challenge was running a range of day activities across different geographical locations, as protective measures had to be put in place depending upon the restrictions of each area.
What Scottish Huntington's Association has learned
Scottish Huntington’s Association has learned various lessons during this particular project funding. Listen to your beneficiaries. Had the Youth Service planned the virtual summer camp as previously highlighted, this would probably have been cost ineffective and had low numbers of attendees. We listening to the needs of the young people and waited to review restrictions and improve the chances of being able to meet face to face. When restrictions were eased we moved swiftly to plan the events which ultimately allowed 38 young people to meet face to face.
Planning with Covid-19 restrictions is challenging. Planning and organising various one-day activities with the complexities of Covid-19 is extremely challenging. It was essential that all risk assessments were completed and adhered to and local guidelines were adhered to. To meet these challenges strong team work and communication was important, along with the ability to be flexible and adaptable to changes often at short notice and have strong contingency plans in place.
The importance of good communication with your funder. Scottish Huntington’s Association liaised on various occasions with Shared Care Scotland staff due to difficulties planning and subsequently cancelling the camp due to restrictions not being lifted. Alternative ideas were discussed and guidance received was excellent. The understanding, adaptability and compassion of Shared Care Scotland to our last minute changes to our project plans was greatly received. Shared Care Scotland were also able to provide us with support from other grant holders who had similar experiences, thus we drew on their knowledge and expertise too when deciding our project plans.
How Scottish Huntington's Association has benefitted from the funding
Receiving Creative Breaks funding has allowed the youth service to build on our skills, knowledge and capacity. Our youth service staff have developed excellent communication skills required to organise events effectively in such challenging circumstances. The team have shown resilience and dedication to achieve a positive outcome. Securing Creative Breaks funding also helps Scottish Huntington’s Association to secure additional funding from other trust and grant providers, as Shared Care Scotland is a reputable funder. By following the Creative Breaks reporting process our own evaluation methods have also improved.
We will hold a Summer Camp in 2021 with 50 young people and volunteers attending. Targets 50 Young People will attend Summer Camp 2021 30 Parents/ Carer will receive respite from caring for their children
Unfortunately due to the COVID-19 restrictions it was not possible to bring young people from different areas of the country together for a residential summer camp as originally planned. We worked with the young people to plan face-to-face one-day activities in 4 locations in Scotland, with 3 successfully taking place. This option allowed young people to come together in small groups and take part in fun activities and have a break from their caring responsibilities. 38 young carers in total took part in an activity day, which included activities such as paddle boarding, archery and kayaking. Feedback was overwhelmingly positive with 100% of young people enjoying their break from home and 100% noting improved wellbeing due to having fun with the group/ peers. 43 parents/ carers benefitted from their child attending an activity day which included the symptomatic parent and the caring parent.
Eve is 16 years old and has been involved with SHA since she was 8 years old however following the death of her father from HD last year, she withdrew from services as she needed a 'break from HD'. However Eve contacted staff after a 6 month break and work commenced on grieving, mental health and reducing isolation. Eve attended an activity day and reported 'I was scared to go back as my Dad is dead but it’s the best thing I've done, I feel great, I had fun and feel like I can cope with this (HD) after all'. Parent: Sally is a single parent and shielding due to various health concerns. Sally’s daughter, Kendra, 12 has been home educated since lockdown commenced and there is no other support. “This was the first time Kendra has been away from me in 16 months and the first time she has spent time with children her own age. It was fantastic for her to get this opportunity and its actually given me a much needed break- I went to get my nails done and had cup of tea at a café, on my own, in peace. When you have not had a break in 16 months this simple thing changed my whole world. I felt like a new woman. When Kendra came back she was laughing and joking and being a child, which she hasn’t had the opportunity to do for so long. Both of us needed this break and it’s helped us both feel 100% better".
50 Young Carers will attend camp and enjoy a break from their young caring role, through participating in a range of daytime and evening activities. 40 young carers will have decreased stress levels. 25 Young carers will have experienced a new opportunity.
38 young carers were able to enjoy a break away from their caring role by taking part in a day of fun activities, even though it was only for one day as opposed to a 5 day residential it still had a significant positive impact on their wellbeing. The activities included things such as archery, kayaking and paddle boarding. For many of the young people attending it was their first time taking part in such activities, which they would otherwise not have the opportunity to take part in. 100% of the young people reported that they felt emotionally better following the activity day 100% reported they had reduced stress 100% reported they could cope better on their return home. 100% took part in a new activity on their day out whether it was paddleboarding, digger driving or catwalk (nightline)
Mikey, 15, was attending an activity with the youth service for the first time. Mikey has an extremely challenging home life and was recently referred to social services due to adversities faced at home with dad’s HD and Dad’s behaviour toward Mum and Mikey. Mikey was apprehensive about attending the activity day, however during the day staff could visibly observe the stress and pressures melting away from Mikey and he reported that he felt ‘chilled, happy and good about himself’. Mikey explained; “My family have no money, so I never get to do fun stuff like this. Dad is always angry and shouting at us so I spend nearly all my time in my room, on my own. This has been the best day of my life getting to go kayaking and paddle boarding. I’ll be able to tell my friends on the computer tonight what I did and I know my Mum will be really happy I’ve had fun. 10/10 best thing I’ve done and I can’t wait till next time!”
50 Young Carers will attend camp and enjoy a break from their young caring role whilst 40 young carers will learn new coping skills to support their caring role at home.25 young carers will attend a Festival focussed on Young Carers issues. 40 Young people will have increased coping skills
Structured group work sessions (Festival) did not take place, as the focus was to work on re-establishing the groups following a 16-month hiatus and support the young people with this transition. The priority was for the young people to reconnect with their peers, have fun and escape their caring responsibilities. Whilst the outcome and targets were not directly met, the feedback received from evaluations has indicated that; •38 young people thoroughly enjoyed their day out •38 young people enjoyed meeting peers living in HD families. •38 young people enjoyed time away from caring roles, which in turn increased their coping skills. As a result of the success of the activity days, planning commenced for a three day residential for ages 13-17 in September and whilst this was not funded by Shared Care, the lessons learnt from delivering the activity days helped staff to provide a successful residential tailored to the needs of those attending.
Mikey, 15, has an extremely challenging home life and felt very isolated. "Dad is always angry and shouting at us so I spend nearly all my time in my room, on my own." The activity day provided an opportunity for Mikey to meet other young people who are going through similar issues at home, as a result Mikey was less isolated and felt recharged and more able to cope when he returned home. Mikey also felt that attending the activity day had an impact on his Mum who is the main carer for his Dad. Seeing Mikey happy and enjoying himself had a positive impact on his Mum. 'This has been the best day of my life getting to go kayaking and paddle boarding. I’ll be able to tell my friends on the computer tonight what I did and I know my Mum will be really happy I’ve had fun. 10/10 best thing I’ve done and I can’t wait till next time!” Other comments received from young people attending demonstrate the positive impact meeting up with their peers has had on their wellbeing which will result in improved coping skills: “The best part was meeting friends and not staying in all day” “everything was amazing” “It was very fun and relaxed. Good seeing everyone after lockdown & stuff” “The best bit of today was meeting my friends, that I wouldn’t have met if it wasn’t for the group”