Glasgow Youth Work

Outcome

25 young people (YP) with epilepsy will achieve activity-related goals. 25 YP with epilepsy will have fun taking part in an activity. 25 YP will develop friendships.

Results

19x YP with epilepsy achieved their goals by the end of the year.
14x YP with epilepsy regularly attended the group and had fun taking part in an activity: "Makes me happier to see my young person happy, thriving, and being a teenager."
14x YP with epilepsy regularly attended the youth group and developed friendships. 80% made friends and 60% keep in touch with friends outside the group: "Yes, they keep in touch with some when they are not at the group."
57% of the group attended the residentials.
84% of young people reported that at end of the residential, their confidence was improved:
"The Glasgow trips have been a great source of fun...Residentials are also a great way to promote independence."
"This has been a lifeline to friendship, support and fun. When all other friends deserted her, the youth group and workers make her feel part of a friendship group and for that I am extremely grateful."

Case study

Lucy has been attending the youth group since November 2020, and at the time, was taking frequent tonic-clonic seizures as well as myoclonic and absence seizures daily. Lucy faced bullying at school for both her weight and seizures, making attending school miserable. Loneliness and anxiety were a daily battle.
However, when attending sessions at Epilepsy Scotland, Lucy is a fireball of joy and finds comfort in “being around people who understand what epilepsy is like” She is a comedian and looks out for all members of the group, filling the room with empathy and care whenever she attends… this made the news of her being unable to attend our weekend residential really upsetting for other members who have built up a friendship and connection with Lucy.
Lucy stays just outside of Glasgow at home with her mum, dad and siblings but the family are currently struggling with the cost-of-living crisis with her mum saying; “Honestly, we just don’t have the money for fuel to get her there and back”. Lucy’s dad was also in and out of hospital: “he hasn’t been able to work much just now, and we have been struggling with less money coming in.”
From regular one-to-one meetings online with Lucy, we knew she was desperate to attend the residential and really struggling with the pressure of school exams as well as being filled with worry about her dad. To help ease some stress, the Youth Worker arranged transport costs to be covered for Lucy and ensured she was safely taken home again after the weekend residential.
Lucy tried canoeing, archery, fencing and challenged her fear of getting on a giant swing, which led to her climbing trees and having a go at the zipline. She did all this despite not feeling confident before she went away and potential seizure activity getting in the way. When she returned to fill out a post-residential survey, she was one of the 84% of the group who were bursting with confidence.
Lucy’s mum was happy she was in safe hands with the Youth Work team, who know how to respond to her seizures as well as being surrounded by young people that wouldn’t judge or make fun of her, making her comfortable enough to give everything a go!
Lucy’s mum was incredibly grateful that the Youth Work team were able to support them throughout a challenging period in their household and find solutions for Lucy to attend her first break away from home. This meant that for three days, Lucy’s mum had one less mouth to worry about feeding and was able to take on some extra shifts at her work. Keeping all our sessions and activities free including covering costs of transport is vital for people like Lucy and her family to easily access the youth group.

Outcome

45 carers of YP with epilepsy will report improved self-care and life balance.

Results

163 hours of youth group meetings were held and we had two residential trips giving 2x 54 hours of respite to carers. 2 carers returned to study at Uni after a break, another carer took up driving lessons and others did leisure or hobby activities, went on weekend breaks and some households managed to visit family members in hospital. 100% of parents or carers said Epilepsy Scotland helped them as a family a lot. 100% of parents or carers said Epilepsy Scotland made them feel more positive about their current situation.

"I'm glad I found the Epilepsy Scotland team to help us through our journey and always at the other end of the phone if ever we have any worries."
"Epilepsy Scotland changed our lives, it probably saved them too, or at least saved our mental health."
"Makes us feel more confident as a family."
“The difference it makes our lives is huge, all for the better. I don’t know how we could’ve functioned without them as a family or individually."

Case study

Finn is 14 and is a young person who attends our sessions regularly and has uncontrolled epilepsy, cerebral palsy, and autism. Finn’s Mum was reluctant and fearful to allow Finn to attend group trips without her being nearby. Finn struggled to engage in youth services elsewhere as rarely any staff were trained in delivering emergency medication in the event of a seizure.
Recently, the youth group took a trip to Edinburgh to meet with youth group members from further afield for some snow tubing. Our Youth Worker met with Finn’s Mum to explore how both she and Finn were feeling about the trip.
Despite Mum’s fear of letting Finn take part in an activity so far away and so physical, Finn was desperate to go on his own to meet up with new friends. Finn’s Mum mentioned she was sleeping terribly, and the Youth Worker decided to offer several one-to-one support meetings and calls with the family.
Finn’s Mum began to feel reassured and confident that he was in safe hands as she noticed Finn’s seizure activity had calmed down and she allowed him to attend the trip. The Youth Worker kept her updated throughout the journey and activity and when dropped off afterwards, Finn said to Mum “It was the best day ever!”
At this point, Finn’s Mum stated she “clearly had nothing to worry about” and was happy for him to go on more trips away, so she could attend a few yoga classes that were starting up nearby. She was incredibly grateful for the encouragement that both her and Finn received from the Youth Work team and the wider resources that Epilepsy Scotland offers.

Outcome

45 carers of young people with epilepsy will have improved skills to manage their care relationship and better manage their cared-for person’s condition.

Results

47% of carers received direct support from the Youth Worker and the wider team and two households were referred to our Managing Difficult Epilepsy course delivered by our training department. 13% of carers were also referred for support from our Welfare Rights Service and access additional help throughout the cost-of-living crisis.
"Not only have they been there with advice, referrals to other health services (eg Weigh To Go to manage son’s weight loss after lockdown and medication, and support throughout lockdown) ...I have also been given training and information about how to deal with his terrifying seizures and this has greatly contributed to my peace of mind. Epilepsy Scotland truly make the world a better place for young people with epilepsy... I can’t thank them enough."

Case study

Lee is 18 and joined the youth group at the end of 2022. Lee had very few friends, is separated from his parents, and lives in one of the most deprived neighbourhoods in Glasgow. So far, Lee has had no success finding a medication that will control his seizures. He has frequent absence seizures and unpredictable tonic-clonic seizures which leaves him with painful injuries.
Lee is cared for by his gran, Isobel, who struggles with the physical and mental strength required to support Lee during seizures and finds it incredibly frightening to witness. Lee was forced to drop out of college due to the severity of the seizures and the lack of knowledge from staff on how to best support him. Lee’s Gran was overwhelmed with the unpredictable nature of the seizure activity and the thought of him being outside alone was incredibly worrying. With the lack of routine and opportunity to keep busy, Lee found the only option for fun was out in the streets of the scheme he lives in, where he was often misunderstood and bullied.
The Youth Work team were able to work closely with Lee and Isobel to identify where they were being let down by health care and support services. They helped identify potential seizure triggers and fill in gaps of seizure response knowledge to help both Gran and Lee feel more confident when seizure activity does occur.
To attend sessions, transport costs were covered for Lee which allows him to consistently engage in our weekly in-person youth group and one-to-one check-ins with our Youth Worker. Lee enjoys the sense of independence of getting a taxi and it took huge pressures off Gran’s shoulders. She’s happy knowing Lee is in a safe and supportive environment.
Epilepsy Scotland provided training to his social worker and 2 support workers who now also care for Lee from his doorstep to activities and home again, leaving Isobel with relaxed time to herself knowing that Lee is well looked after. The Youth Worker is supporting Lee with applying to college courses and other opportunities now that he has support workers trained and comfortable caring for him and responding to his seizures.
Lee was then signposted to a local arts service that provides free creative opportunities which he now attends regularly and has new friends to connect with. Gran enjoys time to herself several days throughout the week where Lee is off the streets and in a social club with a team around him confidently supporting him.
Lee will also soon be attending one of weekend residentials this year where, for the first time, he will be on a short break away from Glasgow and spend the whole weekend engaging in outdoor activities, have a supportive friend group around him and access three hot meals a day. Gran has time to get on with her hobbies and gets a chance to go to Bingo, having peace of mind knowing Lee is in safe hands.

Outcome

25 young people with epilepsy and their carers have increased knowledge and access to wellbeing practices to improve self-management of epilepsy, independence and improved seizure control.

Results

19x young people increased their knowledge about epilepsy and had access to wellbeing practices. 100% said support from Epilepsy Scotland make them feel more positive about their current situation, 50% said they feel a lot more positive.Over half said their wellbeing improved: "What I like about epilepsy Scotland is that nobody judges anybody. It helps boost your mood and helps me with my mental health too. I have found them very helpful in teaching me about my epilepsy and others too."
75% of carers said their wellbeing improved. 66% were feeling hopeful, 66% had better understanding of epilepsy and 83% benefited from talking to others about epilepsy: "it makes a very big impact on myself and daughter's life. Always there to listen and help you whenever you need them. Make us feel that we aren’t alone dealing with our struggles."

Case study

Finn is 14 and is a young person who attends our sessions regularly and has uncontrolled epilepsy, cerebral palsy, and autism. Finn’s Mum was reluctant and fearful to allow Finn to attend group trips without her being nearby. Finn struggled to engage in youth services elsewhere as rarely any staff were trained in delivering emergency medication in the event of a seizure.
Recently, the youth group took a trip to Edinburgh to meet with youth group members from further afield for some snow tubing. Our Youth Worker met with Finn’s Mum to explore how both she and Finn were feeling about the trip.
Despite Mum’s fear of letting Finn take part in an activity so far away and so physical, Finn was desperate to go on his own to meet up with new friends. Finn’s Mum mentioned she was sleeping terribly, and the Youth Worker decided to offer several one-to-one support meetings and calls with the family.
Finn’s Mum began to feel reassured and confident that he was in safe hands as she noticed Finn’s seizure activity had calmed down and she allowed him to attend the trip. The Youth Worker kept her updated throughout the journey and activity and when dropped off afterwards, Finn said to Mum “It was the best day ever!”
At this point, Finn’s Mum stated she “clearly had nothing to worry about” and was happy for him to go on more trips away, so she could attend a few yoga classes that were starting up nearby. She was incredibly grateful for the encouragement that both her and Finn received from the Youth Work team and the wider resources that Epilepsy Scotland offers.