Annual Report 2014 ShiningShining aa lightlight onon epilepsyepilepsy Contents Messages from the Chair & CEO 4 Epilepsy 5 Support and Information 6 Awareness & Advocacy 8 Training & Education 10 Our Vision Research 11 Epilepsy Ireland’s vision is to achieve a society where no Fundraising 12 person’s life is limited by epilepsy. Financial Information 2014 13 Our People 14 Mission Statement Epilepsy Ireland is committed to working for, and Our Locations 15 meeting the needs of everyone with epilepsy in Ireland and their families and carers. Our Objectives • To provide support, information and advice to people with epilepsy • To provide information and advice to health professionals in dealing with epilepsy • To improve public understanding of epilepsy (in order to eliminate fear and prejudice) through awareness campaigns and education programmes • To undertake, encourage and assist research into the causes of, cure for and management of epilepsy and into the social and psychological effects of the condition • To promote legislative and civil rights for people with epilepsy and to campaign to eliminate all discriminatory practices and policies affecting them • To provide support for people with epilepsy in the area of training and employment • To operate as a public forum and an advocate for the condition of epilepsy • To raise funds to support our work in an awareness- creating manner Governance Epilepsy Ireland is committed to achieving and maintaining the highest standards of governance. In November 2014, the organisation was audited for the PQASSO (Practical Quality Assurance System for Small Organisations) Quality Mark Level 1. This was attained in January 2015. PQASSO is the leading quality assurance system developed for the non-profit sector, enabling charities like Epilepsy Ireland to demonstrate standards of excellence in areas such as governance practices, financial and risk management, systems for measuring outcomes, paths to continuous improvement and more. 3 A message from Mark Dowdall Mike Glynn Chairman Chief Executive As Chairman of Epilepsy Ireland it is my pleasure to present this annual report which outlines the successes and challenges faced by the Association in 2014. The year was a landmark one for 2014 marked yet another challenging year for Epilepsy charities in Ireland, with increased public Ireland and for the service users we support. Epilepsy scrutiny on the sector and welcome Ireland strove to cope with increased demand for our developments such as the establishment services that coincided with on-going reductions in of the Charity Regulator. funding. The positive news is that not only did we continue At Epilepsy Ireland, we strive to ensure to support those that need us but we also increased our best practice in how we govern our organisation. Elected service provision. by our membership, our Board of Directors take their The main service development of the year was the launch responsibilities to those we support and represent, and of the STEPS Epilepsy Self-Management Programme, to our donors and supporters, most seriously. This is designed to help people with epilepsy manage their highlighted by our ongoing work towards adopting the condition and to gain skills to improve their quality of Governance Code and SORP (Statement of Recommended life. In 2014, the programme was rolled out in all of our Practice), the best-practice framework for charities in regions and initial feedback has been extremely positive. preparing annual accounts. At the year end, further developments such as STEPS for As 2014 came to a close, our three-year journey in Parents and an Epilepsy Ireland smartphone app were in achieving the PQASSO quality mark for charities was almost the pipeline. complete and we expect in 2015 to become one of the first Increasing epilepsy awareness was a priority in 2014 and Irish charities to achieve the prestigious standard. we were delighted that Ireland Rugby Head Coach Joe In order to best achieve our mission, we must ensure that Schmidt fronted Irish activities for European Epilepsy Day we are governed by a Board with expertise in and passion (EED) asking everyone to be a TEAM player when it comes for the cause of supporting people with epilepsy and I to seizure first aid. The campaign was hugely successful am delighted that we were able to welcome three such in bringing much-needed attention to epilepsy and was new members to our Board in 2014. Dr Christine Linehan recognised with a special commendation at the 2014 Irish is the Director of the UCD Centre for Disability Studies and Healthcare Awards. a Lecturer in the UCD School of Psychology. Derry Gray is Our advocacy agenda in 2014 was also a busy one. The a partner at BDO, the leading accountancy and business Epilepsy Monitoring Unit (EMU) in Beaumont Hospital advisory firm and an Executive Committee Member and was finally re-opened in February after 18 months of Elected Council Member of Dublin Chamber of Commerce. campaigning. Sadly, the EMU at Cork University Hospital Cathy Grieve chairs our Awareness sub-committee and has had still not been opened by the year’s end and we are had a very successful career in front line journalism and in continuing our efforts. A number of other advocacy issues business, while living with epilepsy for the past 12 years. arose during the year including policy work around the Margaret McCahill, a long-standing member of our Board availability of SNAs in epilepsy and safety issues concerning of Directors resigned in 2014 after 15 years on the Board. I the epilepsy drug sodium valproate. would like to thank her for the expertise she brought as a In research, we partnered with SUDEP Action, University pharmacist, her contributions to our work, our publications College Cork and the University of Sheffield to establish and in particular, her success as Chair of the Group on the Epilepsy Deaths Register for Ireland, while our research Driving and Epilepsy which brought about a change in funding scheme supported one new study in 2014, legislation. bringing the total research investment since 2009 to I would like to thank the members of our Finance and €780,000. Awareness sub-committees and Board of Directors for their I would like to thank all of our staff team for their dedication tireless work in 2014. I would especially like to thank my and support in meeting the challenges of recent times. fellow Officers for their ongoing support; Vincent Savino, Thanks are also due to our Board and sub-committees Vice-Chair, Claire Crehan-Dowdall, Hon. Secretary and who contribute their stewardship and support on a totally Michael McLoughlin, Hon. Treasurer. voluntary basis. Finally, I would like to thank our members I would like to conclude by thanking the people who use and everyone who supported Epilepsy Ireland in 2014, our services, all of our staff, our CEO, management and whether financially or by volunteering their time. We are volunteers for contributing to another year of growth and only able to do what we do with public support, and we are progress towards our goal of providing support for all indebted to all who support the cause of epilepsy. people with epilepsy. 4 What IS EPILEPSY? Epilepsy is a general term used for a group of disorders Epilepsy health services have historically been characterised by recurrent, unprovoked seizures. neglected in Ireland, a situation which is changing Seizures are episodes of abnormal electrical activity due to the ongoing work of the National Epilepsy in the brain that briefly alter a person’s consciousness, Clinical Care Programme. The programme aims movements or actions. How a seizure affects an to improve access to expert care in Ireland and to individual will depend on the area of the brain in improve the quality of that care. In recent years, it has which the seizure originates. Partial seizures initially been responsible for the introduction of a range of affect only one part of the brain and these can be standard operating procedures, pathways for seizure ‘simple’ (consciousness is not affected) or ‘complex’ management in the emergency department and has (consciousness is affected). If both hemispheres of secured 20 new Advanced Nurse Practitioner positions the brain are affected from the outset, these are dedicated to epilepsy care. called generalised seizures, and involve the loss of consciousness. About 1 in every 20 people will have a seizure at some time during their lives. Epilepsy is one of the most common neurological conditions. Worldwide, more than 50 million people live with epilepsy. In Ireland, 37,000 people over the age of five have epilepsy and there are an estimated 1,600- 2,900 new diagnoses each year. It can affect people of all ages, but is more prevalent in children, adolescents and the elderly. It is also more common in people with an intellectual disability. Common causes include head injuries, strokes, brain infections, birth defects and genetic conditions like tuberous sclerosis. Genetic mutations are also known to play a role in some cases. However, in about 60% of cases, no specific cause can be identified. Epilepsy is a treatable condition and the majority of people can become seizure-free thanks to medications or in some cases through surgical intervention. However, Epilepsy Ireland estimates that there are at least 10,000 people in Ireland living with uncontrolled seizures. For this group in particular, the consequences of an epilepsy diagnosis can be long-lasting and significant. It can affect the person’s education, employment, psychological & social functioning, self- esteem and independent living. People with epilepsy must also cope with the physical impact of seizures, the side-effects of medications, and for many, the social stigma that can be associated with it. In addition to the impact that epilepsy can have on the person with epilepsy, it can also cause serious psychological, social and economic consequences for their families and carers.