One Step Project
A story by Epilepsy Scotland
The One Step Project provided support for young people with epilepsy in and around Edinburgh in the form of 1:1 meetings, groups, outings and residential trips. The support to the young person provided respite for parents and carers, many people with epilepsy are heavily reliant on carers and family.
What One Step Project did
A new role was created for this project enabling Epilepsy Scotland to employ a Coordinator for the year and a Support Worker was employed for the
residential trip. Individuals received multiple types of support, the young person received 1:1 meetings with the One Step Coordinator which enabled the individual to talk about their life as a whole and not just their epilepsy. Tools like the Life Wheel were used in these discussions to gain an insight into what the main concerns in the young persons life was, and to reflect on to create goals. This provided an individualised programme to increase independence, confidence and other skills. The 1:1 sessions happened at the office or a location that was easier for the family like a local café or at school.
We introduced a number of young people to other services and we supported them to get there initially until they were comfortable to attend on their own.
We ran a monthly group workshop for all the young people on the project to come together and socialise. The main aim of this was for the young people to have fun and enjoy time spent together. Some of the issues covered were about the benefits of sleep, memory and epilepsy. Workshops took place at our office. For some young people where socialising was an issue we had outing around Edinburgh.
We had two residential trips at PGL Dalguise over the year to provide a full weekend of respite for parents/ carers and to give an opportunity for young people with epilepsy to take part in activities that they would otherwise struggle to access, and to socialise with others their age.
Parents received respite once a month for the group sessions, once a week/fortnight for 1:1 sessions and a full weekend whilst their child was on the residential trip. The respite enabled parents/carers to have time to themselves, with their partners and special time with their other children. A lot of parents used this time to relax in the house whilst others used it to exercise or go out for a meal.
We held group nights and workshops that enabled everyone to get together to socialise and this often involved playing pool, sharing food and listening to music. Within these groups we ran workshops about a number of subjects that people had brought up in the 1:1 meetings, including a ‘Memory workshop’, ‘Sleep strategies’ and ‘My Future vision board’ among others. All workshops were designed specifically for the young people attending to make it interesting, fun and engaging for them. We used games and activities within each workshop to involve everyone.
We held two residential weekends over the year for the young people. This provided parents/carers with a full weekend of respite and gave young people with time to bond with others and take part in many activities. The activities involved challenged them, but they were able to take part in things that they had not previously done and thought they could not do because of their epilepsy. Afterwards many of the young people said they were proud of themselves and felt more confident.
Sandie is a teenager who has autism as well as epilepsy. Our Coordinator worked 1:1 with her using tools to identify Sandie’s interests and how she felt about different aspects of her life. She highlighted that friendships were difficult, and as a result she did not trust most of her fellow pupils at school and did not see people outside of school. The Coordinator introduced her to another young person in the group and arranged outings specifically for the two of them, including trips to Edinburgh Dungeons and bowling. Sandie also attended the group sessions and went to the residential activity weekend.
Whilst at the weekend away she took part in a sensory trail, zip wire, raft building and a high ropes challenge amongst other activities. The sensory trail and raft building were the most challenging because she needed to work within a team but she took part in both of them and completed them. Sandie excelled when playing basketball, she was aware of her team mates, passed to them, scored baskets and smiled throughout.
Sandie’s mother said that the One Step Project “has helped to develop my daughter’s communication skills, social awareness, social motivation and responsibility”. During the 1:1 support sessions Sandie verbalised her wishes more clearly and specified which activities she enjoyed, reflecting on what was involved in the activities that she took part in and which ones were most rewarding. Friendships continue to be a struggle to initiate due to her co-diagnosis of autism, but it is clear that Sandie becomes more confident and interacts well when in a group and taking part in an activity.
She said “My daughter really looks forward to coming along to the group, especially the one to one support provided by Kirstyn (the Coordinator) which has had an amazing impact on my daughter. It has helped to develop my daughter’s interaction with her peer group.” Using the Warwick-Edinburgh Mental Wellbeing Scale at the start and end of the project, Sandie stated that the following has improved: interest in other people, energy, confidence, feeling loved, being interested in new things and feeling cheerful. Sandie’s mum stated that when she received respite she went to the gym, had a swim and relaxed at night with her husband. Specifically when Sandie was away for the residential weekend, Mum said “My husband and I booked a restaurant and spent time by ourselves, enjoying some adult time.”
She reported that the One Step support has been “beneficial not only in supporting my daughter’s social interaction but having the project to talk to staff that are very knowledgeable and aware of my daughter’s conditions has been outstanding.” The One Step Project provided Sandie with the opportunity to take part in a number of activities which were devised with consideration both of her interests and her multiple needs. She stated that “One Step helped me try lots of activities”. In turn this gave her mum and step dad respite with the security that we had the knowledge to support Sandie’s needs with epilepsy and autism.
During the project we worked at equipping the young person to become more independent which involved a lot of support to self-travel. Ensuring the young person was less dependent on a parent to transport them enabled parents to have more respite hours. Having the Better Break priority to 'Provide support at key transition stages, particularly as children become young adults, where short breaks can help to build their self-confidence and their skills for independence' has driven our support to help young people to develop their skills to be able to do things on their own.
By doing this we were thinking of the long term benefits to parents/carers. We worked at ensuring each young person became more independent during the project to give them the best chance of continuing to progress after they received the respite service. Promoting the child’s ability to take part in other activities and do things independently helps parents to gain more free time after the project.
When Bobby was first referred to us the Coordinator spoke to his mother, who wanted support because she was concerned about him. Bobby had left school and had tried college but didn’t complete it and she was frustrated because he was at home all day, she could see that he was depressed and she was worrying about him a lot. He spent a lot of time in the house and this was causing friction between him and his younger siblings. Through working 1:1 we discussed what was happening at home. On the Life Wheel he rated ‘home’ as 4/10 and through more exploring we found that he felt he didn’t have much purpose to his day.
Having a job became a significant topic and he created a goal to find employment. During one to one meetings he spoke about this a lot, but when at home he could not find the motivation to act upon it. We looked at how he could develop his skills, and he started peer mentoring with younger children within our group sessions. This gave him more confidence and he said he felt good because he was helping out. The Coordinator referred him to Into Work which is an organisation that helps people find job opportunities. She supported him to these meetings so that his parents did not have to.
Bobby has short term memory problems but she worked with him to build strategies to help with this. By escorting him, using maps and apps on his phone he was eventually able to attend the Into Work meetings on his own and develop greater independence. Bobby got a work placement at a primary school which the Coordinator initially supported him to attend, so that he could remember where the school and classes were and how to travel there. At a number of stages Bobby spoke of how good he felt that his life was moving forward.
His mother stated that “They (Epilepsy Scotland) have given him confidence to do a work placement and worked with him to find what he wants to do in the future. The project has taken him from a depressed young man to some someone who now has hope.” Having the respite has enabled Mum to “spend quality time with other kids, so this help has been invaluable”.
Respite support has changed Bobby’s life a lot since the first phone call with his mum expressing anxiety about her son’s future. His mum recently told us that: “The project has taken a depressed 19 year old with no direction and turned him around.” This has enabled Bobby’s parents to worry less about his mental health wellbeing and in turn has improved family functioning and quality of life.
While supporting children and their carers during the project, we provided epilepsy information to the young people themselves to support them in taking control of their condition instead of relying completely on their parents. We provided varying amounts of direct contact with parents/carers depending on how much support they wanted and the needs of their child. We also offered meetings with carers without their child present, to enable them to talk about themselves. We worked at linking in with other organisations and finding resources which often families do not know about or have the energy to research and we offered to speak to schools to provide more information about the individual’s needs.
We supported parents (and their children) during a number of school meetings or medical appointments to provide extra support in situations that can be daunting for families. This also meant we were able to reiterate what was discussed in simple terms at a later date. Throughout the support we were very aware to continue to offer different sources of help so that families could access support without the need to ask for it.
We supported a family who had recently moved to Edinburgh from a country in Europe. They were referred by an interpreter as they had no other access to support. The family spoke about feeling isolated, they reported that disabilities were something that was not openly discussed where they had previously lived, and was kept very separate from the wider community, so they did not have access to much support.
We provided 1:1 support to a 13 year old girl, Maria, whose mental health was very poor. We gave her space to talk about her concerns about having moved to a different country and the loss of friendships. We gave her information about epilepsy and supported her to take part in activities. After our 1:1 meetings the Coordinator spoke with Maria and her mum to provide information to both of them about epilepsy and stress management. Maria had reported that every week felt the same, that she would go to school, come back home and that weekends were just spent at home – “nothing fun”.
The One Step Project meant that she was able to have somebody to talk to and a group to attend while also providing her parents with respite and support. Maria appeared shy when she first came and did not contribute much in the group environment, but as time has passed she has gained huge progress in her language skills and in interacting with the rest of the group members. Her dad said “The one to one meetings were very helpful to start with our daughter and give her confidence in herself.” We attended a school meeting and provided support to Maria to voice her own opinions, and to be able to reassure her and her parents at a later date. We spoke to her guidance teacher about the impact epilepsy has had upon her learning and about her anxieties around it, while also giving him information booklets and strategies on how to support learning in young people with epilepsy.
Dad told us that: “For Maria you became a security and a person of trust. We can see the challenge from 2 years ago where Maria’s situation was and where we are today with the progress of her personality.” “Having the One Step support has been very helpful to bring back our family to a normal situation and give our daughter trust in herself.” Her parents said they enjoyed “normal life” while receiving the respite we provided.
What Epilepsy Scotland has learnedThe funding has enabled Epilepsy Scotland to further develop its services for young people with Epilepsy in Edinburgh and to work closely with individuals, looking at their whole life to support them and their families and giving a wider and more intensive service for the young person and carers’ needs. We have learned the importance of creating a service that not only provides a group session but has more 1:1 time with individuals as a lot of people have more complex issues that cannot be addressed in a single group sessions.
We have learned that teenagers with Epilepsy need intensive support to initiate socialising with other young people and that it is very important to them to have somewhere safe to attend without their family. They struggle to organise outings themselves and become isolated from their peers, and consequently need extra support to make and maintain friendships.
We have also learned that it is vital to talk with other professionals/support systems within a young person’s life as there may be underlying issues which are more complicated than initially reported. By having dialogue with these agencies and the family, we are able to provide a more linked up service and more appropriate support.