Glasgow Youth Work
A story by Epilepsy Scotland
Glasgow Youth Work improves the health and wellbeing of young people with epilepsy and their carers. It offers a safe engaging space for young people to meet others with epilepsy whilst carers receive respite. We offer free access to creative, fun, and challenging activities and residentials away.
What Glasgow Youth Work did
Epilepsy can disrupt the wellbeing of family households and can generate a lot of traumatic stress and anxiety. We know this through calls to our helpline and connections to the local community through information events, social media networks and clients from our Welfare Rights Service. We also know this from other community groups the youth service connects with and support.
We offered additional social support and temporary relief from the physical and emotional demands of caring roles during the fluctuating challenges Covid-19 created for everyone. And we offered a weekly social place for young people to meet others who were going through similar experiences encouraging peer support and friend networks to grow.
Glasgow Youth Service gave time and space for carers to have a break from home-schooling, gave breathing space during working-life challenges, enabled more time to focus on healing from injuries/illness and everyone was able to explore ways to improve their wellbeing. Relationships were improved in households and families were able to live fuller lives despite Covid-19 restrictions.
Young people from ages 8-20 made new friends and supported one another throughout a very challenging period at school and at home. One of the many highlights were the growth of social circles across Scotland for our young participants when they met up with other young people with epilepsy from different areas of the country. This increased confidence and independence, enabling them to navigate new experiences in a fun and positive way.
We did this through developing resources and partnerships, delivering a range of activities online and in-person, such as games, cooking, arts and crafts, film nights and music workshops. We also visited sports and leisure venues, had an online residential, made plans for in-person residentials to take place when safe to do so, enabled volunteering and explored employment opportunities. These ran alongside health and wellbeing workshops about epilepsy and managing stress. Everyone explored ways to independently improve their own wellbeing and carers were welcomed to get involved in activities at home and in-person at the centre.
What Epilepsy Scotland has learned
It would be no exaggeration to describe this past year has been another challenging time for the team as well as the families we support. However, it has also been a massive learning curve and the challenges of Covid-19 have provided an impetus to develop and tailor the service for the benefit of every single young person we work with and give carers different forms of respite. For example, a break from home-schooling and home-work support, breathing space during working-life challenges, and space to recover from injuries or illness.
We quickly noticed that group attendance was generally higher for our on-line groups than our in-person groups. For some this was as simple as cost of transport, social anxiety, or the inevitable tiredness that epilepsy can cause. For this group, the on-line offer was ideal as they could attend a peer group, take part in activities but there is no need to negotiate public transport or face the anxiety of walking through the door for the first time.
However, for some young people the on-line groups are not a preferred option, e.g. for those who have a condition which makes extended screen time difficult to cope with. We learned that having the option to safely meet in-person outdoors was hugely important alongside online activities. New developments such as ‘Walk & Talk’ sessions worked very well. The youth worker met in-person to encourage young people to get out of house, take part in physical activity and get more one-one time with youth worker in local parks/nature settings. This has been very valuable to some members of the group who have been struggling with anxiety during the easing of the lockdowns.
Online delivery enabled Glasgow and Edinburgh youth groups to meet and work together in ways they hadn’t before. With no geographical restrictions imposed we ran many of the on-line groups with both the Edinburgh and Glasgow groups. This was developed during times when staff members were off sick with Covid-19 or were looking after family members with Covid-19. We had to manage continuity of the service, respite for carers and manage expectations of our young participants who really looked forward to their weekly social space.
We are delighted to say that this was a great development and lots of new friendships formed, and commonalities explored. New friendships grew further in person at their trip to Edinburgh Zoo in September 2021. The Glasgow youth group then hosted a drumming workshop led by SambaYaBamba in 2022. This was very memorable indeed and the groups also had a go at making some outdoor snacks and toasted some marshmallows which someone had brought along.
Other new elements developed were the ‘Weekly Wellbeing Hour’ (wellbeing packs were sent out) which was delivered for an hour a week during school holidays. This helped young people learn ways to self-manage their epilepsy and looked at ways to improve their brain health. It offered a calm space for therapeutic activities to take place such as mindfulness, breathing and relaxing techniques, colouring, crafting, reading etc. Packs included colour therapy booklets, stress balls, yoga/stretching facilitator taught, home-made facemask making and other self-care items to help with bedtime routines and good sleep practise. Both young person and their carer benefitted as they could choose to do these together or the carer could get on with something else during this hour.
Our Youth Ambassadors formed in 2021. It’s an autonomous group which builds on the strengths and direct experiences of our young people. It consists of 10 older members from both the Glasgow and Edinburgh youth groups who are working together to raise the voice of young people with epilepsy in Scotland. They were eager to combine their interests and talents to focus on supporting others with epilepsy, raise awareness and develop campaigns in relation to epilepsy. They also made new friends from across the globe when they met a youth group from Malawi called Epilepsy Warriors.
Other learnings were the move to on-line delivery this year meant we updated our knowledge on internet safety and updating our policies accordingly. It has also meant adjusting the way we respond to seizures and setting up an on-line seizure protocol if a young person has a seizure within the on-line group.
In conclusion, our youth work is never more needed. Much has been documented in the media about the impact of the pandemic on young people’s mental health and we are in general agreement. Our young people experienced isolation, instability, worry, bereavement, and loss. We quickly realised that in the face of changing restrictions, school closures, exam, and assessment stress and so-on, the most important thing we could offer was a safe, social space where young people with epilepsy had some routine, could take part in wellbeing activities, discuss their concerns with their friends and carers receive emotional and practical support, be more informed and have more opportunities to various forms of respite.
How Epilepsy Scotland has benefitted from the funding
Support from Better Breaks has enabled the Youth Work to innovate and be flexible to the needs of our young people and their carers throughout this ongoing pandemic. It’s supported members of staff to be able to deliver the work confidently knowing that the fund appreciates the complexity of adapting and delivering throughout this challenging time. The Better Breaks programme is important to the Youth Service and enabled us to secure further funding something we are hugely grateful for. It also helped inspire the Youth Worker with the development of creative ways she evaluates the Youth Service making it a fun activity for young people to get involved with.
30 young people with epilepsy will achieve activity-related goals set out in their individual action plans. 30 young people will develop friendships. 30 young people with epilepsy will have fun taking part in an activity.
There are now 14 young people who are regular members of the group and we welcomed six new members during the grant period. We feel that Covid-19 has affected our target of working with more participants and expect to gradually reach the target at a much slower pace than originally set. Due to ongoing limited schools/hospital outreach with Covid-19 precautions, spreading word about the service has been more challenging. But retention rate remains consistent and those who do engage, do so very well. Out of the 14 core participants of the group all have achieved goals in their personal development plans. All participants have developed friendships, and all had fun taking part in activities. Activities were a mix of online delivery mixed with the group meetings at the centre, local outdoor activities/outings around the city, wellbeing activities were sent via post, we visited Edinburgh Zoo, met the Edinburgh youth group and welcomed them to our centre for a drumming workshop.
Case Study - Declan Declan is 20 years old. He has uncontrolled tonic-clonic and focal seizures and joined the Glasgow youth group a few weeks into the global pandemic. His mum called our helpline as she was worried how withdrawn and low Declan’s mood had become. Declan’s twin brother Peter also attends the youth group alongside his brother. Peter's epilepsy responded to medication and has been seizure-free for 3 years however he likes to bring his brother to the youth group and joins in activities. His brother recently achieved his driving licence which created tensions in their relationship at home. We set up several online meetings with Declan, but they were repeatedly cancelled. “He is not engaging with anyone just now. I will see what I can do but not hopeful” - Declan’s mum We chatted with his mum, listened to her worries, and sent out activity packs filled with various materials. Inside the bespoke packages were arts/craft materials, a range of wellbeing focused activities, cooking/baking recipes and a personal letter just for Declan. Declan appreciated the care the Youth Service team put into the packages sent to his home. He thanked the Youth Worker (YW) by text, and she was able to work more closely with him and invited him to his first one-one Zoom meeting. Declan was able to hear more about our youth group and he had space to ask all sorts of questions about his epilepsy. This helped him understand how his brother's epilepsy was different to his own and having someone to talk to outside of his family helped calm tensions between the brothers at home. Declan became more vocal and happily worked alongside the YW on his personal development plan. He shared his goal was to be more independent and was interested in how the youth group could help achieve his goal and get a part time job. Declan joined the youth group meetings online and it was during visits to sports, leisure, and cultural venues around Glasgow that he made significant progress and developed a new friendship. This friendship played an important part in Declan’s life, and he spent time outside of the youth group meeting up with his new friend and they supported each other throughout Covid-19. Declan showed signs his confidence and self-esteem were improving and attended the youth group each week and he started openly chatting about applying for work experience his new friend. His new friend was very encouraging and challenged Declan to try something different this year and dress up for the Halloween party as a zombie cheerleader! “So happy he is enjoying your meetings and coming out of himself. We all really appreciate your hard work and tenancies” - Declan’s Mum. During his time with us, Declan has been supported to apply for a 6-week barista training programme with FARE Scotland that focused on developing social skills and knowledge needed for his first job. He was successful in his application and the staff at FARE had several sessions with our youth worker to find out how best to support Declan's epilepsy throughout his time in their care. Attending this programme was the first taster that Declan had of feeling like an everyday job was achievable. Since completing the course, Declan has been more confident and resilient and applied to lots of jobs and attended several interviews. Most recently he was interviewed, and it was confirmed he had a space for a Princes Trust College 12-week life skills college course which he is due to start shortly. He’s over the moon about this, so is his brother and parents.
50 carers of YP with epilepsy will have improved care/life balance
40 carers received respite, additional social support, joined in wellbeing activities, were helped with transport costs to get to the centre and household wellbeing improved. These carers are 24 Parents and 16 Siblings. “Thank you for the amazing work you are doing- a lifesaver for us and I’m not saying that lightly” "This is amazing and such a great help for us, im very very grateful to you especially and to everyone at Epilepsy Scotland and can’t think you enough for everything you do for my boy” (On being able to receive free transport to the group session’s venue weekly) “He’s home, safe and tucked up now. We really appreciate your support and help, it’s reassuring to know he was in safe hands” (On son having seizure whilst attending group) “Epilepsy Scotland has a massive positive impact in my childs well being. She is able to express her feelings and no longer struggles talking within her group. This gives me reassurance that she is happy and content."
Robyn and her mum Karen Robyn is 13 and has been a member of our youth service since the end of 2019. She has tonic-clonic seizures and focal seizures which are uncontrolled and spent most of her time being supported by her mum, Karen, as her dad works for weeks at a time away from home. When we first spoke with Karen, we heard about her struggle with the intensity of being the main carer for Robyn. Robyn attended school part time due to a mix of ASN including ADHD, balance/eyesight issues and poor anger management skills. At the times this meant Karen was being attacked/hurt by Robyn who found it hard to control her mood swings and frustrations. Both Mother and daughter were both were living in constant fear and had traumatic experiences with tonic-clonic seizures taking them by surprise and the recovery period worried Karen. Karen also worried about Robyn’s wellbeing and the fact Robyn didn’t want to socialise with other young people and knew this was due to previous experiences of bullying at school. Within the first few months of joining, Karen said: “She had lost her wee sparkle for months there and I couldn’t figure out what caused her to lose that amount of confidence but over the past few weeks, I can see it, it’s back. This group is making such a difference for her. I can see the sparkle in her again” Robyn has consistently attended weekly in-person groups/trips. She enjoyed experiencing activities that challenged her in a healthy way, such as cycling, walks, using public transport etc. She loved online cooking sessions, all things arts and crafts, games, and most of all socialising with youth group members from all over Scotland. Robyn now keeps in touch with several friends outside of these sessions! And she has become good friends with two Glasgow group members who she meets on a weekly basis in her own time and refers to as her “best friends”. These sessions and her new group of good friends were crucial for Robyn’s wellbeing and a relief for Karen as she routinely had several hours a week of respite from her caring role. Karen felt great pressures had been lifted and she was less anxious. She chatted with the Youth Service team who offered additional social support and she felt less isolated in her caring role. Robyn’s relationship with her mum reflected the improvement in her wellbeing and home-life became less fraught and more harmonious. Towards the end of Summer Robyn’s mood swings were up and down again and there was an increase in seizure activity. She shared with the Youth Worker that she was “really scared” about going to high school. She wanted to go but the change overwhelmed Robyn greatly and started bringing flashbacks of being bullied and she started being aggressive towards her mum again. The Youth Worker supported Robyn and her mum greatly during this time by attending ‘Team Around the Child’ meetings. She could see the difference it would make strengthening their support network, ensuring both felt supported during this stressful time. Robyn and the Youth Worker adapted the personal development plan and made it bespoke to this new challenge Robyn was facing. During a series of one-one meetings they explored coping strategies for stressful & overwhelming situations. Robyn now uses these in High School to calm herself down in scenarios that would otherwise lead to a meltdown and potentially trigger a seizure. Robyn is now doing very well and attends school full time. She has an active social life and has friends to do fun things with and who support her. And Karen has routinely well-needed time away from her caring responsibilities. She goes shopping and visits leisure venues around Glasgow and is planning a weekend away in Summer. Robyn is an active core member of the youth group and rarely misses any action. She confidently supports other members, is very kind and caring and has no problems sharing her experiences with epilepsy. She signed up for our residential weekend away in August and is looking forward to spending three days away from her family and experiencing new outdoor activities such as canoeing, abseiling and more!
50 carers of young people with epilepsy will have improved skills to manage their care relationship and better manage their cared-for persons condition.
Each household we supported received 158 hours of respite over the grant period. Carers also had access to our helpline, online information resources, managing epilepsy training, online events, and other services such as our Welfare Rights Service. All our services worked in a joined-up approach over the grant period and provided holistic support. The Youth Service used a person-centred approach and worked collaboratively with carers. This helped the team offer a more tailored approach throughout stressful periods carers were going through. We supported carers to develop knowledge about epilepsy enabling them to make more informed decisions. And we also know what carers are going through from direct lived experience of epilepsy ourselves, some members of staff are carers, have been carers of young people with epilepsy or have epilepsy themselves. This means we can respond quicky and appropriately to any challenges carers have.
Liam and his mum Lottie Liam’s mum contacted the Helpline during the first Covid-19 Global pandemic lockdowns. Liam is 19, had his first seizure in 2020 and has tonic-clonic seizures which can last over 3 minutes. This has been deeply traumatic for his mother Lottie, who is Liam’s only carer after his dad suddenly passed away. Liam and his mum live in Scotland alone and the rest of the family are based in Sweden. Being so far away from family has left Liam’s mum incredibly isolated. The youth worker (YW) noticed that she did not have a second emergency contact and noted she may need extra support herself. Liam is also non-verbal and has few close friendships at school. This meant Liam’s only activities out with school were locking himself in his room with video games on his phone. During the lockdowns, Liam’s mum feared her son would become more withdrawn and social isolation would worsen. She also feared that she could also lose her son. Through lots of one-one work, the YW was able to find a communication pathway of texting and when they met in person, she noticed that he had a creative side to him and had no problem expressing himself through drawing and writing on paper. This suited Liam as he could explore and learn through creative activities. He decided to use this method to express his goals for being part of the youth group and take part in fun activities. However, Liam felt nervous about joining in the youth group and meeting other young people, so the YW held one-one walks at his favourite local park where he enjoyed watching squirrels and birds. Lottie said this was the only interaction Liam was receiving beyond herself and the only time Liam had gone outside over the lockdowns and it made her happy to know that the YW was there for Liam. The YW noted that Liam would benefit from being introduced to other members of the group online but the only access to the internet was through his phone that he played computer games on. We applied to Connecting Scotland and we were able to provide Liam's household with a laptop and two years internet that gave him the option of attending online and learn about emails/updates for the group and a new method to contact his YW. Lottie was delighted with the bespoke support Liam was receiving and could see huge improvements in her son. She’s had no other support throughout Liam’s diagnosis and ongoing journey. Unfortunately, whilst responding to one of Liam’s seizures Lottie badly injured her knee and has since been walking with a cane. This made travelling far difficult for them both as Liam’s mum does not drive and can’t afford travel costs or taxis. We supported the family with covering the cost of transport to make the youth group as accessible as possible to Liam. “I would be struggling to get him here every week. That would be horrible to know that these opportunities were waiting here for him, and he would be missing out on so much. It’s incredibly helpful to have the transport support, thank you” - Lottie. Liam made significant steps with his confidence and socialising with other young people and routinely took part in weekly in-person sessions. He tried new sports like badminton and bowling, has taken on challenges in escape rooms, discovered theatre, seen more animals this time at a Zoo and most recently had a taster session of some Brazilian style street drumming with SambaYaBamba Youth Street Band! The involvement in various group activities enabled Liam to be comfortable communicating with others and build trusted relationships, something he had rarely experienced before. He learned how to socialise with other young people and instinctively knows how to support people around them who are also non-verbal. The laptop encouraged Liam to move away from the world of video games and allowed him to explore his creative side on a bigger device where using photo/video editing was much more accessible. Liam has since found a love for photography and has been signposted by his YW to a community engagement project with GMAC Film starting in May 2022 that will give Liam hands-on experience working with professionals in the film industry. The trip to the Zoo in September 2021 marked one-year seizure-free and was a very special day that marked great progress for Liam. His mum consistently thanked us for the huge difference it has made for them. Together with Liam, she learned digital skills and became more informed about managing epilepsy and not to panic, and use breathing techniques to help stay calm. She dedicated the time whilst Liam attends the sessions, to look after her own mental health and go for gentle walks to help strengthen her knee. Further support from the wellbeing team helped her not feel guilty that she isn’t always physically with her son, and she can relax and heal, knowing that Liam is in safe hands.
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.
Over the grant period there were: • 23 virtual Glasgow only sessions • 77 virtual Edinburgh & Glasgow sessions • 20 face-to-face sessions • 2 face-to-face Edinburgh & Glasgow youth group meet ups • 166 hours of 1:1 support with the Glasgow Youth Worker We carried out a survey with the young people to learn about their experience and support we offered throughout the pandemic as we were using more digital methods to help deliver continuity of project activities. Result are below: • 83% said the support had reduced their boredom • 56% felt less lonely • 56% felt less anxious in general • 85% said they felt less anxious about Covid-19 • 50% said the support had reduced any sad feelings they had had. • 78% said the support had improved their confidence or self-esteem. • 83% reported making at least one friend
Peter Peter is 20 years old and attended our youth group with his twin brother, Declan, who also suffers from epilepsy, since 2020. Peter has tonic-clonic epilepsy, but it’s well controlled with medication, and he can now drive. Declan has frequent tonic-clonic and focal seizures, and his epilepsy remains uncontrolled. This has meant Peter has felt a large sense of responsibility for caring for Declan and he’s been quite stressed trying to stay calm and supportive in his caring role. He knows what Declan is going through and will do anything for him, but when Declan’s seizure activity increases so do his mood swings which are sometimes very hard to cope with. This causes a lot of tension and stress for both boys, with one feeling the pressure of needing to know where/what is happening, and the other feeling smothered with no independence. Peter attended our youth group alongside his brother and felt safe to relax and enjoy fun activities too without the constant worry that he needed to have one eye on his brother wherever they go. All our staff are trained in seizure response and offered emotional and practical support that helped Peter in his caring role. Peter learned a lot about seizure management and the benefit of exercise and good quality sleep and shared what he learned with his parents. Peter enjoyed being a young person doing fun activities around the city and had to his advantage all our resources at his fingertips without needing to automatically take on the role of carer alone. Most of all, he's enjoyed seeing his brother's wellbeing improve and become more independent thanks to his new friend in the youth group and opportunities to help get his first job. “I would like to express our gratitude for your encouragement in getting our sons involved with the youth group in Epilepsy Scotland. Teenage years are difficult at best, but having twins with Epilepsy and then covid arriving, the boys became very isolated. Your persistence in encouraging the boys to move on to the on-line platform and arranging activities was a real help with removing the sense of isolation for them. I am sure that their mental health would have suffered if they had not been given the opportunity to meet their friends and share in all the fun.” -Peter’s Mum 2021 “Since covid restrictions have passed, they have enjoyed meeting for real…young people with Epilepsy find it difficult to be accepted by their peers, despite best intentions there are some risks involved if leaders do not understand their illness. That is why it is such a good group and now they are being given the opportunity to have a weekend away, to have fun outdoors, just as other young people do, will make such a difference to their confidence and wellbeing. Knowing that they are with trained youth workers with experience in Epilepsy will also put our mind at rest.” Peter’s Mum 2022
Additional project outcome
More young people and their carers will have digital access.
The Youth Worker identified two young people and their carers who were living in data poverty at home. She could see their wellbeing and quality of life would hugely benefit from a laptop and stable internet connection. We identified support that enabled young people and their carers more digital access through the Connecting Scotland programme and two households received laptops and two years internet connection. This enabled carers to access to more community services online, had stable access to all our support services without the expense of having to travel to the centre across the city, could keep in contact with family who lived far away and learn new digital skills they never thought was possible. Both young participants found the introduction to the group activities online was a great way to ease social anxiety and helped them attend regardless of the inevitable tiredness that came during the recovery period that followed a seizure. For them the on-line offer was ideal, they met their peer group online, took part in activities and there is no need to negotiate public transport or face the anxiety of walking through the door for the first time. When they met in-person for the first with their new friends it was a happy and positive experience. Learning new digital skills also introduced a new world of opportunities for our young people. For example, the new laptop awarded to Liam encouraged him to move away from the world of video games on his phone and allowed him to explore his creative side on a bigger device where using photo/video editing was much more accessible. Liam has since found a love for photography and has been signposted by his Youth Worker to a community engagement project with GMAC Film starting in May 2022. This will give Liam hands-on experience working with professionals in the film industry.