Barbora Jones is a Fieldworker with Epilepsy Connections. Barbora recently traveled to Lisbon to assist EFNA in their work at the EAN Congress 2018. Here she describes her role as a Fieldworker and the work of her organisation:
Epilepsy Connections was formed in 2000 to provide information, advice and support to people of all ages affected by epilepsy. With a small team, the organisation provides a variety of services in Central Scotland for people living with epilepsy, their families, friends and unpaid carers; also aiming to raise awareness of the complexity and diversity of epilepsy needs. People can be referred through health professionals, social work, statutory and voluntary organisations, and people can contact us directly to access our help.
The organisation offers in-house counseling services, befriending, gardening projects, monthly social groups, training and volunteering opportunities. Alongside this Epilepsy Connections provides epilepsy awareness sessions at local schools, and regular events for children with epilepsy and their families, enabling them to meet others managing epilepsy and to try exciting leisure activities including tubing, tobogganing and indoor climbing. One such event is to provide a holiday break for families at an outdoor activities centre on the West coast of Scotland. Last year we have also launched a new project, Epilepsy Futures, a supported programme that equips adults with epilepsy with the skills to make a positive change in their lives. We are not a fundraising organisation and our funding comes from various sources including the National Health Board, Big Lottery Fund and individual donations.
My role as one of the epilepsy Fieldworkers is to be the first point of contact providing information and advice, identifying what matters to people and helping to find the best way to support their life with epilepsy. While some can manage their epilepsy without additional assistance following diagnosis, the people contacting us are normally at a crisis point and we often hear of a lack of information of their diagnosis and the impact they should expect to their lives. We often hear of isolation especially from young people recently diagnosed where fear of seizures in public stops them from socialising, as well as impeding their education and career. People often describe the devastating impact of an epilepsy diagnosis on their lives in terms of loss, losing independence, their driving licence entitlement or simply their motivation and confidence.
Alongside the information and advice service, a Fieldworker can be someone to talk to if people need a listening ear face to face or at the other end of the phone. An example of what Fieldwork can help with includes understanding and managing epilepsy and related risks at home, school, college, work and when participating in sports. We liaise with external agencies including health, statutory and voluntary organisations’ professionals about individual epilepsy needs to help achieve best positive outcome for the person. We would support them with issues like self-management, welfare rights, employment, housing issues and more.
We work with people of all ages, and our work could be to support a young person living with epilepsy in overcoming the social isolation which has come from the fear of having seizures, or supporting a child of parent with epilepsy to understand seizures and their epilepsy needs.
An example of the help we provide is the support we have given to a young mother of two children. Shortly after her epilepsy diagnosis in November 2016 she was experiencing severe isolation and fear of leaving her home due to the unpredictability and severity of her seizures. After initially visiting her in her home to help with her safety there we have maintained regular contact, offering advice on a wide range of epilepsy related issues which has meant that she is now more aware of seizures and triggers. Our support has helped her to balance and minimise safety risks posed by frequent seizures, and helps her to feel confident enough to engage with available services when she struggles and needs to talk to someone about her epilepsy.
Helping people is at the heart of Epilepsy Connections. Being able to help them to make positive changes within their lives is extremely rewarding and means that people with epilepsy, those who support them and wider society are more aware that epilepsy should not prevent anyone from living a fulfilling life.