Summary
Epilepsy Connections exists to provide vital support and services to benefit people with epilepsy, their families, carers and friends. We deliver these services across Greater Glasgow & Clyde, Ayrshire and Arran, and Forth Valley. Young people with epilepsy, and their siblings and parent/carers, took part in fun, challenging activities at a residential weekend in Argyll. They experienced new things in a rural environment. In addition, carers enjoyed respite from their usual responsibilities.
What Ardentinny Autumn Adventure did
We delivered a 3-day residential activity trip for 3 young people with epilepsy and 6 family carers.
What Epilepsy Connections has learned
We found that, more so than in previous years, it required additional effort to get initial uptake from families, and to maintain communication with families in preparation for the residential trip.
Delivery of the project depends on our volunteers who work with families affected by childhood epilepsies. Successful delivery of the project is measurable on the relationships and trust forged with each family, and this is largely down to the range of skills, experience and commitment shown within our volunteer team. We have learned to value what each volunteer brings to the project.
How Epilepsy Connections has benefitted from the funding
Funding from Better Breaks has allowed great experiences for the families that we support. It has created a strong foundation to the wider activities that Epilepsy Connections provide.
Project Outcomes
Outcome
Disabled children and young people (aged 20 and under) will have more opportunities to have fun, develop friendships and do activities they enjoy
Results
Children with epilepsy enjoyed challenging and adventurous activities such as canoeing on the sea loch and gorgewalking in the river.
Case study
The youngest member of the group (R, aged 6) tried these activities for the first time, encouraged and supported by her parents and by the volunteer team. Her adventurous streak was clear when she used rocks to slide into water pools, and her confidence grew as she tackled each new challenge.
Outcome
Carers of disabled children and young people (aged 20 and under) will have more opportunities to enjoy a life outside of their caring role
Results
All the parents took part in the outdoor activities. They took great enjoyment from simply doing fun things that they would not usually be able to do in their day-to-day lives due to their caring roles.
Case study
Parents of R could see just how much fun their child was having. They were able to immerse themselves in the activities, knowing that R was supported by the volunteers - allowing them to let themselves go and enjoy the adventurous activities not normally open to them.
Outcome
Carers of disabled children and young people (aged 20 and under) will feel better supported to sustain their caring role
Results
Carers benefitted from sharing experiences and issues they had in common with others on the trip.
Case study
Young carer (K, aged 16) was able to participate in all aspects of the weekend’s activities, without the burden of responsibility that she deals with for her disabled sibling. She spent time with the group of volunteers, two of whom were also carers of siblings with epilepsy. Conversations with them, whether specifically on caring, or on common interests (in music, films, theatre, food etc) allowed her to appreciate that there is more to her life than solely being a carer.
Outcome
Disabled children and young people (aged 20 and under) and their carers will have improved wellbeing.
Results
See case study
Case study
Parent A has a demanding caring role for his disabled son, so he has not given priority to his own wellbeing for many years of caring. Getting time for himself, without the pressure of being ever-present for his son, was extremely important over the weekend. He took to the activities with gusto, particularly canoeing. The weekend reinforced his changing approach to his own physical and mental wellbeing, in that he can cope better with his caring roles when his own wellbeing and self-care are central.