Epilepsy Connections Weekend Break for Families
A story by Epilepsy Connections
We provided a 2-day break for families at Ardentinny Outdoor Education Centre in Argyll. Thirteen children and young people with epilepsy attended, along with 36 carers including young carers.
We provided transport, accommodation, catering, outdoor adventure activities and entertainment tailored to meet the needs of our group. Children and young people took part in gorge-walking, canoeing, abseiling and archery with their peers. Adults enjoyed sailing, orienteering, archery and canoeing.
Families worked together to complete “team challenges”. We also enjoyed a guided night walk, a disco, a quiz, a surprise birthday party and an “Ardentinny Champions” awards ceremony.
Tip 1:Be aware that a trip like this might seem too risky for some families. While this is the main appeal for some families, other may feel put off so allow plenty of time and opportunities for families learn about and discuss what’s involved. We held 2 information meetings for families, and the Manager from Ardentinny OEC attended one of these as part of our efforts to make sure everyone had the information they needed to make a decision about attending.
Tip 2:For a break like ours, if it’s your first time allow twice the amount of time you think you’ll need for planning and organizing, including time for a site visit and make a contingency plan for bad weather.
Tip 3:When planning staff and volunteer numbers allow for at least one “floating” member of staff to respond to unexpected situations.
Ruby (6) has severe intractable epilepsy, additional complex health problems, sensory impairment and behavior issues. With one-to-one support from Epilepsy Connections’ personnel she enjoyed gorge-walking, and canoeing, and had fun completing the night walk and team challenges with her parents.
Matt (13) has severe intractable epilepsy, physical and learning disabilities, communication difficulties and often needs to uses his wheelchair. He abseiled and canoed for the first time, and the trip opened up a new opportunity for him; as a result of taking part he was able to attend a 5-day outdoor activity course with his school, an option that had previously been ruled out as unsuitable for him.
Jane, who came with son Blair (14) said, “It was a great weekend and I felt I was stress-free for the first time in 10 years”.
Esme (6) is involved in the care of her sister Cathy (8). Their Mum said that “meeting other families was an important part of the journey of acceptance, especially for Esme who was a bit apprehensive about coming, but this feeling shifted on meeting the other kids.” The girls’ Dad commented that “the whole weekend has been very enjoyable and exciting for everyone in my family group”.
David (11) lives with his Mum and his 15-year old brother who has epilepsy, autism and learning disabilities. The one-to-one support we gave her older son during the weekend meant that she could spend valuable and much-needed time with David. David was allocated to a separate activity group from his brother, enabling him to briefly leave behind his caring responsibilities.
Sarah, Mum of Matt (13) and Chelsea (10), said “It was so good seeing my kids both enjoying the same great activities. It was good to meet other families, share stories, have a laugh. I was very wary about leaving the kids in their own groups without us, but I’m glad we were brave. We had a fun time without having to be totally responsible for the kids which is rare and we did enjoy it.”
Staff are now better able to and more confident about recognizing and managing seizures, and have a better understanding of the impact of epilepsy beyond seizures. Ongoing liaison during the planning and delivery of the trip further enhanced Ardentinny staff’s knowledge and understanding of epilepsy, which they combined with their expertise in designing and delivering activity programmes to ensure our group enjoyed the break safely and to the full.
One parent said, “this weekend showed what children with any disability can do. I think some parents were surprised at what their children are able to achieve. My son showed he is willing to give anything a go.”
Feedback gathered from children and young people with epilepsy and carers during and after the break along with observations from staff and volunteers will form the basis of plans for future trips.
For all but 2 children and young people who took part in our survey, this was their first experience of canoeing, abseiling, gorge-walking, and archery. Asked how they felt after taking part they said, “proud”, “braver”, “happy”, “exhausted”, “great”, “hyper”, “wet”, “this was something I wouldn’t have done” and “I don’t want to go home”.
We spent more time planning and organizing than we had anticipated. Gathering sufficient, relevant information and securing the correct consents was more challenging than expected. Working out activities to meet the needs of a mixed ability group aged from 3 years to 50+ years was also challenging but was time well-spent.
We took 6 staff and volunteers. This allowed us to allocate one-to-one support where anticipated and provide back up to Ardentinny staff. This worked well but we learned that taking at least one “floating” member of staff to provide additional one-to-one support where needed or to step in to relieve colleagues if necessary would be wise in future.
The break exceeded all expectations in respect of levels of participation, achievement and enjoyment. Everyone thoroughly enjoyed it, as is reflected in the post-break evaluations and in the many messages of appreciation we have received since returning.
We were remarkably fortunate in that the weekend simply could not have gone better. Transport, accommodation and food was as expected and the arrangements went according to plan. The weather was superb, enabling us to be outside all weekend in warm sunshine and on calm water.
We were particularly pleased that a high proportion (29%) of families were from ethnic minority communities. This success is largely due to the efforts of our Ethnic Minority Community Development Worker who supported families in various ways (e.g. encouraging families to sign up, helping with forms, advising on clothing) and who also provided guidance on cultural and religious issues in relation to catering and accommodation.
In our original proposal, we said that we would provide outdoor activities for children and young people while parents / adult carers enjoyed presentations about epilepsy. On our site visit, Ardentinny OEC Manager Aidan Doherty suggested offering the same activities to adults and children. We agreed that this would shift the focus away from epilepsy towards fun and relaxation, although we had some reservations about adults’ enthusiasm to take part. Our concerns proved unfounded, with all adults present gamely joining in, and learning from their children how to take on new challenges. There is no doubt that the change of plan was the right decision.
Epilepsy Connections and Ardentinny are blessed with committed, enthusiastic staff and volunteers who enjoy their work, however personnel from both organisations commented on how particularly rewarding this experience was. One member of Ardentinny staff has raised funds for us recently and another is considering volunteering to support our programme of children’s activities.
We had not initially budgeted for a professional photographer, but would hope to do so in future. The photos were made available to families for their private use and to Epilepsy Connections and Short Breaks Fund for reporting purposes. The standard of the photos is exceptional; families are delighted with them and they significantly enhance our reports and presentations.
In November 2013 we made a well-received presentation to the Scottish Paediatric Epilepsy Network to raise awareness of the break and of our plans to run another break next year. Those present (paediatric neurologists, epilepsy specialist nurses, neuropsychologists and other health, social work and voluntary sector personnel) loved the story and the photos; the presentation gave them a new perspective on the lives of their young patients.
As a result of the presentation, a paediatric neuropsychologist has volunteered to help develop additional evaluation methods to measure the long-term impact of such a break on attitudes to risk, anxiety levels and decision making.
To reach other families we advertised the weekend break in our newsletter well in advance and circulated information about the break to paediatric epilepsy clinics and encouraged them to refer. We circulated details for publication to Third Force News and The Alliance newsletter. A double-page article with photos was published in Glasgow’s Evening Times the day before the trip; too late to attract families but good publicity nonetheless.
Two of the families who attended were not previously known to us.
In addition to providing care in relation to physical and learning disabilities, parents and young carers of children with severe epilepsy are on alert 24-hours a day to respond to seizures which by their nature are unpredictable and which in some cases are potentially life-threatening.
We prioritised the support needs of children and young people throughout the planning and delivery process working very closely with Ardentinny OEC instructors to ensure that regardless of need (including the potential need for emergency medication), everyone would be able to participate in activities with one-to-one support provided where required. We recognise that levels of anxiety are high in families affected by epilepsy, and worked hard to support families to accept a level of controlled risk that they may usually find unacceptable.
Reporting requirements are appropriate to the level of the grant, although it was a challenge to sum up the project in so few words. There are some minor differences between Section 2 of the application form and Section 2 of the evaluation form, and between the printed evaluation form and the online form; this was a bit confusing and ambiguous in places.
Two volunteers carried out short interviews with children and young people during the break.
The talking wall was a great success, proving particularly popular with younger children who gathered there to add comments and drawings that evidenced excitement, fun and friendship. We posed questions on the talking wall e.g. “what was the most exciting thing you did this morning?”, “what’s the best thing about Ardentinny?” to prompt focused feedback on specific aspects of the break.
Staff and volunteers gathered informal feedback from families throughout the weekend, and the working group met in October for a formal feedback session.
Our Ethnic Minority Project Development Coordinator carried out a telephone evaluation with ethnic minority families to assess our response to cultural / religious needs and to allow those who don’t speak English as a first language to provide detailed feedback.
Photos taken during the break provide excellent evidence of impact.