Glasgow Youth Club
A story by Epilepsy Scotland
Epilepsy Scotland Glasgow Youth Project aimed to deliver the young club to support young people with epilepsy to take part in fun, challenging activities, make friends and enable them and their carers to access wellbeing services and meet others going through similar experiences.
What Glasgow Youth Club did
Epilepsy Scotland is now in regular contact with 19 young people who have received a mix of one-to-one and group support to help manage their condition, increase their confidence and gain access to a variety of social, leisure and educational opportunities.
We have been running weekly two-hour activity-based youth groups since August, including a three-day holiday programme during the February mid-term. Nine young people have been regularly attending and have been participating in a programme of social, educational and leisure activities.
In order to gain the trust and build the confidence of the young person to attend the group, often a significant amount of one-to-one meeting needs to take place with young people. These also give young people the required support for them to achieve personal goals such as attending health or vocational appointments. These meetings have happened with the aforementioned nine young people and an additional ten.
While the young people have been attending the groups and one-to-one meetings, 36 parents and carers have had respite knowing their child is in a safe space. In addition, through developing the relationship with Epilepsy Scotland the carer has been linked into the support and information offered by the organisation. For instance, the information helpline or welfare rights service.
Due to the social distancing measures in response to Covid-19, there has been no face-to-face youth provision since mid- March 2019. However, the Youth Development Worker has been delivering both one-to-one and group work digitally by telephone. Including quizzes, group cookery sessions, a scavenger hunt (a race to find certain things in the home) and group discussion.
This has proven welcome respite for parents, some of whom are key workers.
What Epilepsy Scotland has learned
We have learned that starting a new youth work service in a new city takes time to build relationships both with families and referral agencies. In addition, our first youth development worker moved to a new post after five months and the second youth development worker had to reestablish relationships with the families she had been working with as well as establishing new ones. This has meant it has proved challenging to reach the targets set in our original application.
There is no ‘one size fits all’ group members want to access the service differently,. Some members enjoy coming along to a group and sharing their experiences, others are more comfortable with one-to-one with the youth development worker. For that same reason we have also learned that flexible communication is important and some members may not want face-to-face support at all, the youth development worker has made themselves available via the phone, text and online channels for people who are at different stages of accessing the service.
We’ve also learned not to ‘give up on people’ attending the group can be a big challenge for some and there are sometimes cancellations, the youth development worker has developed an ‘appropriately persistent’ approach to follow-up after cancellations and ensure young people know the service is here for them when they are ready.
The impact of Covid 19 meant from mid-March 2020 has also presented a huge learning opportunity to radically change our delivery methods. All face to face work whether individual or group based had to be delivered by phone or video conference with staff working from home from the 23rd March.
Although this represents a very small amount of the reporting period, we learned a lot quickly. Although far from perfect, these methods have proven invaluable as a means to sustaining connection and providing ongoing support through a challenging and confusing time for our participants.
How Epilepsy Scotland has benefitted from the funding
The funding from Better Breaks has allowed Epilepsy Scotland to finally realise its ambition of expanding its long running youth work service from Edinburgh to the Glasgow area. Although the project is not an exact replication, as that would be inappropriate, the year's funding has allowed us to develop the links with organisations, networks and families to lay the foundations for a vibrant busy youth work service for young people with epilepsy in the West of Scotland.
30 Young People with epilepsy achieve activity related goals set out in their individual action plans. 30 Young people with epilepsy make a friend. 40 Young people with epilepsy have fun taking part in an activity.
19 Young People with epilepsy achieve activity related goals set out in their individual action plans. 19 Young people with epilepsy make a friend. 19 Young people with epilepsy have fun taking part in an activity.
Rachel has been consistently engaging with our Youth Service and has been pivotal in developing the services we deliver. Rachel had her first seizure at her primary school prom in front of her classmates and teachers, causing crippling anxiety when it came to attending school and being in classrooms/busy lunch halls. Attending school became a real struggle for Rachel and she was feeling considerably isolated, with her original friend circle almost vanishing due to them not fully understanding her diagnosis of epilepsy. When first attending, Rachel was shy and struggled to have confidence in anything she was contributing to the group until a new member joined who was extremely anxious. She could relate to this anxiety and began to see the value in what she could bring to the group, making the new member feel relaxed and more comfortable by chatting to her and making sure the new member knew she wasn’t alone, discovering they shared similar experiences with their seizures. This friendship has become extremely close and continues to develop through the current impact of Covid-19 with both young people mailing through social channels and talking each other through any of their worries. Both young people, earlier in the year, attended trips that they “wouldn’t have ever tried” if Epilepsy Scotland hadn’t taken them and that they both felt confident doing knowing they had the support of each other.
60 carers of young people with epilepsy have an improved care/life balance.
30 carers of young people with epilepsy have an improved care/life balance.
Most of the carers of young people attending the group get time during the weekly sessions to not worry about their responsibilities as carers and know that should their young person have a seizure, they’re in a safe space for it. “Sam can’t attend the youth club that she used to go to because they just refuse to deal with the emergency medication if she has a seizure, so she’s not got that to go to anymore” Sam’s mum was able to have the space whilst Sam attending the group that she was being denied elsewhere because staff weren’t confident in how to bet support her daughter’s epilepsy and other additional support needs. During Epilepsy Scotland’s youth group sessions, Sam’s mum is able to be elsewhere and get on with tasks she sometimes can manage whilst caring for Sam. Though sometimes, she chooses to sit in the kitchen of Epilepsy Scotland’s building where she has a few hours to have a tea and head space to herself. She can also at this time receive information and support for her own wellbeing by chatting through stresses that she’s having with her daughter regarding epilepsy with members of our team and other parents. We have provided Sam’s mum with booklets on how to support young people that she has taken back to her daughter’s previous youth group to spread awareness on supporting young people with epilepsy.
60 carers of young people with epilepsy will have improved skills to manage their care relationship and better manage their cared-for persons condition.
30 carers of young people with epilepsy will have improved skills to manage their care relationship and better manage their cared-for persons condition.
Connor is 11 and has been living with epilepsy his whole life as well as currently being tested for autism and going through some major hormonal shifts that have made his behaviour extremely challenging for his mum, Tracy. It has been a massively confusing time for both Connor and his mum with other family stresses going on including Tracy being a full time carer for her dad and working night shift whilst trying to support Connor and his brother as a single parent. With Connor not having the mental understanding of an average 11-year old and little verbal communication, things can be frustrating for Connor. Attending the group is not the right thing for Connor at the moment. However Epilepsy Scotland have been able to support Tracy by providing information on epilepsy and supporting how this information can be made a little clearer for Connor on what his epilepsy is. The school Connor attends struggled to support needs, lowering the amount of hours he would spend in school meaning Tracy had even less respite. We have looked into their local area to see what other services Tracy and Connor would be able to access that would continue developing Connor’s understanding of what he’s facing as well as other routes of respite for Tracy.
30 young people with epilepsy and their carers have increased knowledge and access to wellbeing practices to improve self-management of epilepsy, independence and care relationships.
19 young people with epilepsy and their carers have increased knowledge and access to wellbeing practices to improve self-management of epilepsy, independence and care relationships.
The impact of of Covid-19 has had an impact on how we can deliver our work and our youth services have moved online/phone calls/texts etc. The pandemic has caused considerable anxiety for some of our young people. Epilepsy Scotland has been in regular contact with Leia, 14, who initially was encouraged to come along by her mum who recognised that her anxiety was having really negative effects on her social life and mental health. She was making good progress whilst attending our physical youth service and began bringing in her own activities suggestions for sessions and leading on some of the group conversations. When quarantine was put in place, she began to become very distant and after getting in touch with her mum, we discovered her anxiety was massively overwhelming her- she did not want to attend the online meetings or show her face on camera/take phone calls. This was also causing Leia’s mum a great deal of stress as she was working from home whilst trying to keep Leia occupied and encouraging her to stay active. Through text and using social media, we were able to provide her with information around Covid-19 to help her understanding of it beyond just what she was hearing on the news and give her information on how this would relate to her seizures, easing her nerves. This developed into being able to have phone calls with her mum in which Leia would take a turn of being on the phone, catching up and having contact outwith just her and her mum alone in the house. With the small steps of keeping daily contact, proving information/activities she could get up to and checking in on how she was doing we have built up Leia’s confidence on the phone. This was a massive achievement for Leia, her mum has said “it’s making a massive difference, I’m able to focus on my work without not feeling selfish for ignoring my daughter” We’re now continuing to work towards Leia meeting her youth worker through Zoom. We have been able to support her into focusing on developing skills that she can see a progression with, keeping her mind off things that cause her anxiety!