Families’ Breakaway Weekend
A story by Epilepsy Connections
The weekend break to Ardentinny Outdoor Education Centre was an opportunity for families affected by childhood Epilepsy to take part in fun challenging activities.
The activities included canoeing, gorge walking, abseiling and team games. This was a break away from the usual routine, and to share common experiences
What Families’ Breakaway Weekend did
The Families Weekend Break took part over the 3-day September Weekend 2019 at Ardentinny Outdoor Education Centre. It delivered a range of fun, challenging activities for young people with epilepsy, siblings and parent/carers. The activities were delivered by the Ardentinny team, with additional and bespoke support for participants by EC staff and volunteers.
Activities for families included gorge walking, abseiling, archery, climbing, canoeing, dragon boat racing, woodland team challenges, beach and forest night walks and family disco. The young people, their siblings and adult carers used the break to renew existing bonds and friendships, and families who had not gone on previous Ardentinny residential trips were able to forge new friendships and share common experiences.
The break also helped to develop links with other epilepsy voluntary sector organisations (Lanarkshire Epilepsy), and extend the break to families who had not previously gone on these breaks in 2013, 2014 and 2017.
We sought to identify families who already participate in our regular social activities, as well as using our network of contacts within the Scottish Paediatric Epilepsy Network to promote the event to patients and their families. We also used Epilepsy Connection's social media platforms (Twitter and Facebook) to widen our reach to more families.
From an initial 10 families, 6 attended (circumstances affecting the health of 2 young people and 2 carers unable to participate, prevented these 4 families from coming on the break), resulting in a total of 20 participants, with 7 staff/volunteer support.
Most of the young people identified gorge walking as their favourite activity, and quotes from some were "Can’t pick a favourite activity" "Room brill. Food brill. Staff fantastic" "A big thank you" "Meeting new people and of course familiar faces" A follow up email from one family was of note, in that the parent was delighted with his child’s ability to take on challenges which he didn’t expect her to achieve and to utterly enjoy.
What Epilepsy Connections has learned
Extending the opportunity to young people and their families who had not gone on our previous residential breaks. Using our previous experience and resources to assist and collaborate with another epilepsy voluntary sector organisation and developing and enhancing the skills and experience of our volunteers.
How Epilepsy Connections has benefitted from the funding
By collaborating with another Epilepsy voluntary sector organisation (Lanarkshire Epilepsy) on this event, we have developed new links which have been beneficial to our organisation, and assisted with Lanarkshire Epilepsy's growth in the support and services that they are now able to offer to families affected by childhood epilepsy. The weekend break also gave our volunteers a great opportunity to work with our families and young people enhancing and expanding their skills and confidence in themselves in a novel and challenging environment.
The break's intention was to give opportunities to enjoy outdoor activities which young people and their siblings would not otherwise attempt or take part in. Success will be measured with participants having confidence in themselves to continue with similar activities into the future.
Evaluations from young people listed the many activities they enjoyed, and in which they demonstrated to themselves what they can do. In addition to the evaluations from the young people, carers also responded with the following comments: "My son totally enjoys the outdoors and being able to be given this opportunity as being on my own with no transport is a bonus to us" "The kids were in a safe environment doing what they love to do. Thank you for the best holiday of the year"
Prior to the trip, carer stated that her son (R) was so excited to go again and experience the great activities outdoors. His evaluation, along with his mum, was that gorge walking is absolutely his favourite (although not so keen on archery and orienteering), and being down on the beach, exploring, throwing stones and looking around. He loved the night walk (to the beach and through the forest), loved the team challenges outside and exploring the garden grounds. Particular praise was given to the instructor working with R as he was really patient with him which meant that R could fully participate and enjoy each of the activities. By doing these activities, R knows that he is able to do similar things either through our programme of activities throughout the year, or with other groups or with family members.
Success of the project is that carers' sense of well being is improved after the break.
In order to assess the impact of the break on the well being of carers, they were asked about their sense of well being in their caring role, and to rate whether they were: not coping, very stressed, stressed, but coping okay and managing well. All carers rated their well being as "stressed, but coping" prior to the break. Subsequent to the break, half of carers rated their well being as "okay", and half as "managing well"
One carer prior to the break rated her sense of well being as "stressed, but coping". Social and leisure activities with her son (J) were infrequent, and when they did happen, they required a high level of family support to take place. Anxiety over being able to cope with seizures when out and about (without additional support), and public environments which J found difficult, made days out fraught with worry and not enjoyable. After the break, the carer identified the benefit to her sense of well being from the combination of getting away from the routine at home, taking part in outdoor physical activities, and simply enjoying time spent with her children. She stated that being in the company of other families in similar circumstances gave her a better perspective on coping, meaning that she was more relaxed and chilled than she had been in a long time. She noted that, although the outdoor physical activities made her tired, it was "in a good way!" This shift in attitude towards enjoying time spent with J, rather than dreading what might happen, gave the carer confidence to go with J on a short trip - just the 2 of them - which included a train journey, swimming and a visit to an adventure park.