Young Persons Activity Group
A story by Epilepsy Scotland
We provided fun weekly activities for 11-21 year old children and young people with Epilepsy and additional support needs and 2 residential weekend breaks. Allowing carers additional support so that they could have a break.
What Young Persons Activity Group did
Young Persons Activity Group offered weekly activities for 11-21 year olds with epilepsy. Carers accessed regular respite. Young Persons Activity Group involved 4-hour weekly sessions on Fridays, 6-hour Friday sessions during holidays, monthly 6-hour sessions on Saturdays, and 2 residential weekends (Fri-Sun) annually. Activities began and finished at our office in Edinburgh.
The first residential weekend took place at adventure centre PGL Dalguise. Following this we consulted with the young people about whether to return to Dalguise. We listened to the majority and returned to Dalguise for the 2nd residential trip.
Primarily beneficiaries were identified through referrals from the Clinical Psychologist, Epilepsy Doctors, Nurses and Psychologists at Royal Hospital for Sick Children. Carers were also able to self-refer themselves and their child. Our Youth Worker attended Teenage Seizure Clinics to inform families about the service. Other referrals were from social work and third sector organisations.
As a result of referrals from a Clinical Psychologist, Epilepsy Scotland and the psychologist carried out joint working in the form of creating workshops for parents and carers who have a child with epilepsy.
While their child attended Young Persons Activity Group, parents and carers accessed regular respite. How they spent their time was unique to each carer, but many used the time to relax at home, spend time with friends/ partners, as well as other children.
The Youth Worker got to know the support needs of each young person and their family. Adaptions were sometimes made to group sessions where necessary. Staff got training on mental health, epilepsy and transition planning.
Better Breaks Priorities which were addressed, sports and active leisure, Independence and complex needs. Residential weekends were very successful. It provided young people with valuable time away from home, and parents/carers accessed 48 hours of respite. The project was delivered as intended. A delay in starting the project was due to staff training needs and slow uptake.
Due to oversubscription for the residential weekend the Youth Worker had to assess everyone’s personal circumstances and decide who was most in need.
What Epilepsy Scotland has learned
Project planning and budgeting, before the initial planning stage, we knew there was a gap in respite services for cares of young people with epilepsy. Parents were seeking regular and substantial respite, as well as activities that their children would enjoy.
We did not advertise the project before it was confirmed that we had funding in place, so as to avoid letting families down had we been unsuccessful. Therefore, it took us time to acquire the service-user numbers we required to begin the project. This has come to our attention as an issue which could occur again, and we will review our processes for future pilot projects, including developing a bank of contacts that we can contact once we are aware of new projects in the pipeline.
Developing new short breaks activities, whilst advertising for this project we had a number of families and professionals who asked if there was a similar service for a younger age group. We have discovered a gap in services for 8-11 year olds with epilepsy, which means their carers and families are missing out on crucial respite. We are currently looking at how this can be delivered and funded sustainably in the near future.
Finding other sources of funding, so as not to become reliant on the Better Breaks funding to support to sustain this project, we turned to Global’s Make Some Noise Fund, where we applied for two years’ worth of project costs towards the Young Persons Activity Group. Although we came close, we were unsuccessful in the end.
Weekly social events will have been attended by young people with epilepsy, who will report that they enjoyed activities, feel happy with their experience and feel more confident than they did before attending the project. Young people will tell us they feel less isolated.
17 young people with epilepsy have attended the Young Persons Activity Group, 8 x 6-hour sessions were delivered on Saturdays, 20 x 4-hour sessions and 6 x 6-hour sessions were delivered on Fridays. 2 x residential weekends were delivered, all activity choices were reviewed with young people. They were consulted on what activities they would like to try. At the start of the group all young people who filled in questionnaire stated that the wanted to make new friends, at the end of the group it was recorded that everyone had met new people, made new friends and had tried something they had not done before Results show there had been an increase in ‘feeling good about myself’ and in confidence levels. Some feedback, “I made good friends” “Best part was activities and making friends” “We have a laugh and I get to be a butterfly” “Doing activities I liked, seeing friends and having a laugh.”
15-year-old Katie has multiple seizure types and complex epilepsy which medication has not been able to manage. She attends mainstream school, but seizure activity and additional support needs means she is on a reduced timetable and therefore spends an increased time at home or at the base within school. She does not attend any other activities outside of school and spends almost all her time with her mum. Katie does not socialise with others her own age apart from siblings. When she came to the group she had a very pessimistic view of what she could do. Often thinking of her epilepsy stopped her from taking part in certain activities. However. when Katie joined the group, she told staff that “It’s good to meet others and I want to come back.” Whilst at the group Katie has experienced activities that she had never tried before like tubing, roller skating and being away from home for a whole weekend. Whilst at the residential weekend she did archery, tree climbing, abseiling and zip lining. These are all activities that she would not have been able to take part in at home and does not have access to anywhere else. She has gained confidence at trying new things and even though she initially feels she cannot try something, it she has tried and completed many activities.
Parents and carers will tell us they are coping better with their caring role as a result of receiving regular respite.
Carers received regular respite for a meaningful amount of time, continued communication was maintained with carers throughout the project, parents and carers who responded to the questionnaire reported improvements in wellbeing in 50% of the wellbeing indicators. All carers benefited from increased time away from their caring role since the project began. Parents verbally said “It really helps for me to have time for myself.”
Martin’s mother Sarah worked full time and when not working had no free time from her caring role looking after Martin. She explained that it was very stressful juggling work and caring for Martin. She and her husband worried about Martin’s future. There had been issues around lack of friendships outside of school when Martin went from primary to high school and even though he was in third year he had lost a friendship group. Sarah hoped the Young Persons Activity Group would build friendships and increase confidence, “If he is happy then I will be”. Sarah used the time that Martin attended the residential trip to have a weekend away with her husband and reported “This was such a wonderful treat to spend quality time together.” From the start of the project to now Sarah reported that she had an increase in feeling relaxed and feeling optimistic about the future.
Parents and carers will have had some time away from their caring role and be able to describe what they did in the free time they had as a result of the project.
Carers had regular weekly respite with notice beforehand to make plans for themselves, most carers also took advantage of a full weekend of respite, which amounted to at least 48hrs (2 nights). Carers reported to have used this time in different ways including seeing friends, relaxing on their own, going out of the house, having a coffee, going away for the weekend, spending quality time with other children, visiting children in another city, seeing friends in other parts of the country, reading a book without worrying, watching a film.
Sophia is a 16-year-old girl who has epilepsy and a high level of anxiety issues, and previously did not usually manage to spend a full day or week at school. Her mother, Tess is her main carer as father works full time. Due to Sophia’s condition and mental health Tess is unable to work or have much time to herself. Whilst Sophia attended the group regularly and came to both residential weekends, Tess received consistent hours of respite that she planned around herself in regard to her own interests. Tess’ main aim for the free time was to cultivate friendships which she reported back that she had managed to do during time Sophia had been at the group. Whilst Sophia attended the weekend away Tess also managed to have a trip to North of Scotland. Tess said that she felt relaxed and felt more optimistic about the future after having received respite.
Parents and Carers will tell us that the project has supported them and during the term of the project they felt more able to sustain their caring role.
The project coordinator maintained contact with at least one parent/ carer by either meeting them face to face or speaking via telephone or email. Parents/ carers required different levels of support depending on what they needed. Parents were signposted to other services for either additional support for themselves or their child, or to access individual funding for their child. “This will provide Tom with his first ever away-from-home experience without a family member being present. He needs to spread his wings a bit just as much as we need to have a wee break from a 24/7 condition.” All carers received increased hours of respite that they said was valuable in helping them better care for and support their child.
The parent of one of our young attenders went through a separation from her partner within the past year. Through this extremely difficult period her son Ritchie attended the group regularly. We provided space for parent to discuss how she was feeling emotionally and how we could support the needs of her son through this time. Whilst it was an emotionally demanding time, the mother received regular respite time allowing her to have better wellbeing than otherwise would have had. Support was given to the family and the mother received time where she was able to focus on her own needs whilst knowing her son was being cared for and enjoying time away. She used this time to meet with friends, enjoy hobbies which improved her mental health and in turn was more able to care for her son.
Partner agencies will have promoted the project to participants. Young people will have had choice and participated in a wide range of activities which will have increased their confidence to further participate in activities outwith the group. Mainstream activities promoted inclusion.
The majority of activities took place outside and in the community, we accessed a wide range of venues and services, with some services we provided information beforehand so that all needs of our service-users were catered for. Young people had a say in what activities took place, group decision-making was part of every session. A range of activities were on offer to suit peoples interests but others scheduled that were challenging or that participants were unlikely to have done before, to widen their access and range of experiences. Young people tried activities for the first time and reported back that they either wanted to or had gone back with their families to do it again as it had given them the confidence. A couple of parents had said that they didn’t think their child would manage to do a certain activity but had taken part and completed it.
Tara has epilepsy and learning disabilities and goes to a special school. Apart from school she does not socialise much out of her home environment. She doesn’t attend any other clubs and her family does not have the means to access activities and events in the wider community. Her disabilities mean that she needs extra support in following instructions, understanding her surroundings and needs extra time to process. She has a love for art and singing but is also keen to take part in whatever her peers are doing. We had intentionally had the majority of our sessions outside of our office space so that we accessed services in the local and wider community. We used the local bus service to transport us city wide so the young people learned skills to travel as independently as possible. During group sessions Tara went to many different locations including the cinema, bowling, Hillend Ski Slope, trampoline arena, parks and Edinburgh Festival. These locations were able to make adaptions where needed and provided an opportunity for us to access their facilities whilst we were able to provide the specialist support. The public and leisure services had contact with people of different abilities increasing their awareness of different needs. Whilst attending our residential weekend the group abseiled from a tower. Tara said she wanted to do it but was anxious. A leader explained to her what she had to do and talked her through as another participant came down. When at the top of the tower Tara was upset as she doubted she could do it. Given the time and motivation from a staff member Tara managed to abseil down. It was a massive achievement not only that she got to the bottom but she had faced a fearful situation and overcame the obstacle of doubt.
We will produce an evaluation of the project and share this with parents, children, partner agencies, mainstream venues and other relevant organisations.
Due to feedback from parents/ carers, we did not hold an event as they told us they mainly required respite time. Instead, we spoke to individuals about their own roles of supporting a child with a disability and what had greatest value for them. We worked with a Clinical Psychologist at Royal Hospital for Sick Children to understand the mental health needs of young people and the pressure parents and carers find themselves under. The psychologist used Young Persons Activity Group as a referral route for families she worked with. Our Social worker within Epilepsy Scotland took part in joint working with the psychologist to create carer-focused seminars on certain subjects like ’Looking at the Teenage Brain’