Summary
The project was a weekend residential trip at Ardentinny Outdoor Education Centre in Argyll for families affected by childhood epilepsies. Children and young people with epilepsy and their family carers had opportunities to try challenging activities, mainly outdoors, in a supportive setting.
What Ardentinny Adventure Weekend did
We delivered a 3-day, 2-night residential weekend in June 2022 for families affected by childhood epilepsies. We re-engaged with families we had contact with prior to, and during the COVID-19 pandemic, and with newer referrals of families with recent diagnosis. The setting was at Ardentinny Outdoor Education Centre in rural Argyll. With the combined experience and skills of AOEC staff, along with EC staff/volunteers, young people with epilepsy, siblings and parent/carers took part in fun, challenging outdoor activities. Meaningful support allowed carers(both adult and young carers) to enjoy a break from their usual routine, step back from their caring role and connect with others facing similar experiences and issues.
Prior to the weekend, we maintained our strong relationship with experienced volunteers, matching them to provide bespoke support for each family. This complemented the partnership working with AOEC staff; management team, catering/entertainment staff, instructors.
We strived to make the time away from the usual routine as good an experience as possible. Attention to what may appear to be small/insignificant details (e.g. sourcing favourite food choices, sounding out current special interests). Young people were given Ardentinny diaries - to write/draw what made them happy/unhappy, activities that they liked/didn't like. This communication during the weekend helped to adjust plans, and provided a useful post-event evaluation resource.
The project addressed priority issues in the areas of Complex needs, Sports and active leisure, Independence, Transition to adulthood and Diversity.
Successes? Having attended previous trips with parents, M came this time with his Personal Assistants. This gave him more independence, and Mum and Dad had their first break without children in years - close by in Dunoon, confident that their lad was (in his own words) "having the best time ever".
Barriers to families were greater than anticipated, resulting in a smaller number of families. Some specific to seizures on the day of departure, and family support networks breaking. Emerging from the pandemic, worry, stress, caution, anxiety and isolation were factors.
What Epilepsy Connections has learned
The uncertainty of the COVID-19 pandemic, and the impacts on families we sought to deliver the project to, created challenges to planning and budgeting. Smaller numbers meant an underspend, and we had to develop other follow-up activities to maintain our connection with families.
Barriers and challenges were greater than anticipated. In particular, the isolation and breaking down of informal networks and statutory supports that the most vulnerable families need for their caring roles demonstrated the precarious nature of their day-to-day experience. This emphasises the importance of providing meaningful respite and breaks.
Our continued relationship with the AOEC gave us confidence in delivering an exciting range of outdoor activities, for returning families as well as newly-engaged families. The trust and experience with this partnership is recognised within EC and with our families as a key element in the success of the project.
How Epilepsy Connections has benefitted from the funding
We value the commitment and qualities that our volunteers bring to our organisation. We benefit from setting high standards and expectations of what they each bring to the team, and not allow ourselves to be complacent, by offering stretching and interesting roles within our volunteering programme.
Our organisation's reputation, and international profile, has been recognised earlier this year when the Ardentinny residential trips featured in a poster presentation "Beyond The Clinic Walls" at the British Paediatric Neurology Conference in Edinburgh. This is attended (in person, and remotely) by epilepsy consultants and the wider medical and research communities in the field of neurology. It was a great opportunity to highlight why our children need fun activities in their lives, even with the challenges that they encounter with epilepsy.
Project Outcomes
Outcome
Delivery of a fully-organised residential weekend for families affected by childhood epilepsies, with young people and their parent/carers and sibling young carers taking part in fun and challenging outdoor activities.
Results
Whilst the number of children and young people was less than anticipated, those who did attend discovered new skills and self-confidence. This is reflected in their diary comments, feedback from conversations between families, AOEC staff and EC staff/volunteers, and follow-up emails from parent/carers afterwards.
Case study
A new family came to the trip, and took part fully in the activities, quickly built up friendships and got into the heart of the social aspects of the weekend.
Months later, whilst on another activity for families, the child's parent/carer said that the residential weekend was the highlight of their year, and that their child spoke of the fun things at Ardentinny - and a wish to return again.
Outcome
Parent/carers and sibling young carers will have taken part in fun and challenging outdoor activities. Carers will have had a break from their usual caring roles, and established informal network supports from other carers facing similar experiences.
Results
Adult and young carers participated and enjoyed the range of outdoor activities whilst on the weekend break. Carers took the opportunity to step back from the caring demands and relax, mingle and chat together. Specifically, young carers were able to socialise with other young carers, and bond with their parents whilst siblings were supported by the AOEC crew and the EC staff/volunteer team.
This was observed by viewing the developing of friendships and bonds - particularly in the informal games and play that took place between families adjacent to the social meeting point. Parent/carers sat out in the sunshine, and took strolls down to the lochside beach.
Comments by young carers in their Ardentinny diaries also gave a measure of the feedback on what they did throughout the weekend.
Case study
A family who have accessed our activities for a number of years came to the June 2022 Ardentinny weekend. The young person benefits from a high level of support and engagement, which is demanding on the family carers at all times.
As we were able to give very bespoke support to this lively youngster, the parent used this opportunity to relax, sit back from their usual, highly-focussed interaction with their child, and enjoy the peaceful surroundings. In a email after the weekend, the parent reflected that he didn't need a holiday on returning from Ardentinny - and this was due to the support given by the EC volunteers.
Outcome
Carers will have benefitted from an enjoyable break away from their routine and caring responsibilities.
Results
Families expressed their enjoyment from attending the residential break, through email and text messages from parent/carers, and from diary entries from sibling young carers.
Following the trip, families new to EC have attended other activities we have organised.
Case study
The positive impact on one new family can be demonstrated from the perspectives of a parent/carer and from a young carer sibling.
Now a regular attender at various activities, mum has a chance to network with other parents and with EC staff. Building on this, she took steps towards employment opportunities after years of being carer to family members. Her confidence had grown over the months, and she was able to balance her caring roles and her new job.
And, after the trip, the younger sibling of a ype is now a regular attender of our events and enjoys meeting up with other youngsters.
Outcome
By participating in the residential trip, young people with epilepsy will have tried new activities and will have formed positive, happy memories of their time at Ardentinny.
Results
Due to the supportive and encouraging environment, young people acquired a new-found confidence in their abilities to do challenging activities - such as canoeing, gorge-walking, climbing and abseiling.
Case study
One of our new attendees expresses anxiety over new situations by concealing his face and head with his clothing. So, at departure time, meeting new people was a challenge for him.
With encouragement from family and staff, a very different rural environment and the fun activities that he tried, we saw the slow transformation into a more relaxed young person. He was the instigator of informal games out on the grassy area after mealtimes, along with his sibling and children from other families.