Epilepsy Connections Outward Bound Activity Weekend Break
A story by Epilepsy Connections
We provided a family break to Ardentinny Outdoor Centre in September 2017. Families took part in a programme of fun, challenging activities.
Epilepsy Connections work in Greater Glasgow & Clyde, Forth Valley and Ayrshire & Arran to support children and adults with epilepsy, and their families, to live as well as possible with what can be a lifelong, unpredictable disease. The suite of services we offer has been developed in collaboration with people who have epilepsy and those who support them.
What Epilepsy Connections Outward Bound Activity Weekend Break did
Epilepsy Connections offered families from Glasgow, Ayrshire, Lanarkshire and Inverclyde affected by childhood epilepsy a 4-day retreat to Ardentinny Outdoor Education Centre in late September 2017. Activities included canoeing, sailing, gorge-walking, abseiling, team challenges and fun entertainment in the evenings. Families had the chance to try fun, challenging activities and re-charge their batteries.
Volunteers, Sessional Staff and Epilepsy Connections full-time Staff were recruited well in advance of the event taking place to ensure all involved became ‘stakeholders’ in this enterprise. Four of the six volunteers had epilepsy and therefore had the opportunity to act as a role model to those participants who lacked confidence in themselves due to their disability and for the volunteers it demonstrated Epilepsy Connections confidence in their abilities.
We contacted a wide range of individuals and agencies in publicising this event including Clinicians, Epilepsy Specialist Nurses, Voluntary Sector Organisations with an interest in epilepsy and directly to the epilepsy community via a social media campaign.
While at Ardentinny the days were filled with different activities, after arriving by coach on Friday afternoon everyone was left to familiarise themselves with their accommodation and environment and following dinner everyone took part in a night walk through the woods. On the second day the children and parents were separated and completed a day of activities only reuniting for lunch, day three various families were grouped together and completed a variety of team challenges. The final day prior to lunch we enjoyed a treasure hunt in the grounds of Ardentinny and following the mid-day meal we travelled back to Glasgow.
During the four days at Ardentinny we assigned a dedicated individual to support C.B during all activities which enabled J.B to undertake activities with other parents and spend quality time with her other son. As a result of this intervention Epilepsy Connections are exploring the option of offering C.B a befriender to offer J.B periods of respite which will benefit the whole family.
“Perfect balance of achieving goals as a family in a safe/relaxing environment, whilst at the same time getting time to relax and recharge.”
“Great respite for me! Fantastic experience for us all. We tried different activities we couldn’t do in Glasgow as a small family.”
“So good to be with other people whose children/young people have epilepsy. I don’t feel so isolated. Wonderful to see the young people try all these sports supported by so many staff and volunteer
We recently recruited a family to the Children’s Project, which offers children with epilepsy the opportunity to take part in leisure activities on a monthly basis. The parents had reservations about joining because their son who has epilepsy is managing well and they were concerned that joining the group would expose their son to other children who had less well controlled epilepsy and therefore potentially undermine their son’s ability to cope with the disease. However, the family attended two activities prior to the Better Breaks Ardentinny event and felt comfortable in attending.
The four day’s spent at Ardentinny offered the whole family (Mum, Dad, Son & Daughter) an opportunity to spend quality time exploring with others what living with this disease really means and the support that’s available via this community. Due to work commitments the family had to cut short their stay and leave the evening prior to our departure, upon my return to Glasgow I received an e-mail from the father explaining how much the entire family had enjoyed themselves and that during their car journey home tears had been shed such was the children’s disappointment at having to leave early.
The inclusiveness of the activities ensured the whole family could participate in activities which for many was a novel experience, particularly siblings of those with a disability who would normally undertake these activities while their brothers/sisters where at best spectators.
What Epilepsy Connections has learnedFollowing our previous visit to Ardentinny in 2014 the evaluation suggested a longer stay would be appreciated, therefore we extended this event to four days and the feedback from this year’s event has validated that change. The extra day offered people the sense that it wasn’t a ‘flying visit’ but a real break from the routine of everyday life.
Recognising an Epilepsy Support Group in Lanarkshire had a significant number of families involved who had children with epilepsy but lacked the capacity to organise an event such as the Epilepsy Connections Outward Bound Activity Weekend Break. Therefore the development of an informal partnership which offered and encouraged those families to join us at Ardentinny has both benefited those families and the links formed between Epilepsy Connections and Lanarkshire Epilepsy Support Group.
During the development of this project we decided, given our previous experience to increase the number of staff/sessional staff/volunteers attending the event as support to the Ardentinny staff. This proved a spectacular success with many parents commenting how safe and secure they felt during the various activities and the compliments received from Aidan Doherty, the Head of Outdoor Education at Ardentinny who considered the support staff a real asset and valued addition to the success of the event.