As 2019 draws to a close, it allows for a period of reflection on the work of our organisation over the past 12 months. We are immensely proud to have been a continuous pillar of support to people with epilepsy and their families over the year and we look forward to continuing our work in 2020.
On a daily basis, through the work of our network of dedicated Community Resource Officers, we meet with people from across the country at various stages of their epilepsy journey.
We are right there with people with epilepsy & their families from the point of diagnosis onwards to provide advice and support and to educate communities around the country about the condition. We want everyone to know that epilepsy should not be seen as barrier to anything that a person wants to achieve.
Every person within our organisation is dedicated to these goals, and to other goals like training programmes for healthcare workers, investing in Irish epilepsy research and representing the interests of the epilepsy community at political and policy levels.
Providing this service is not without its challenges. As an organisation, we know that there is a lot more to do. We want to focus on expanding our services and there is no shortage of ideas (from our members, our staff and our board) about how we can better meet the needs of people with epilepsy and their families.
As a HSE-funded Section 39 organisation, we provide an important community service which the state depends on but unfortunately, this is not reflected in the funding that is provided. More and more of our efforts are being spent on our fundraising activities in order to protect existing services, and to improve and develop them where we can.
We depend on the support of the public and our volunteers to partake in fundraising activities on our behalf. We are fortunate to have an incredibly dedicated network of volunteers and supporters across the country and to each and every one of you, I would like to express our sincere gratitude for all your effort and work in 2019. We know you will be right there with us once again in 2020.
Training For Success (TFS) is perhaps the service that best embodies our mantra that life does not have to be limited by epilepsy. As the year draws to a close, I want to thank a stalwart of the Epilepsy Ireland team for the last 20 years who helped shape this important training programme and who has played a huge role in improving the lives of hundreds of people with epilepsy. Honor Broderick was the TFS course manager at IT Sligo and she recently began her well-deserved retirement. She will be sorely missed from our team but Training for Success will continue to make an impact in the lives of people with epilepsy in the future.
So what about 2020? We’re very excited to be embarking on a new project with epilepsy medical teams to work closely with their newly diagnosed patients on epilepsy education and self-management in the community. To do this, we will be increasing the number of support service hours we provide. We also hope to develop new resources to improve epilepsy consultations at GP level. Having hit the €1m milestone in 2019, we plan to invest in even more new research next year. We hope to train close to 2,000 health care workers in epilepsy & administering emergency medications and of course we look forward to continuing to support individuals and families in all corners of the country.
Another thing we can expect in 2020 is a General Election. This will represent a significant opportunity for people with epilepsy and their families to mobilise and raise the issues they experience on a daily basis with their local and prospective TDs. We will be doing our own body of work to ensure that our representatives are aware of epilepsy, its challenges and the issues that are important to the 40,000 people living with the condition. From access to medications and the need for better services, to free travel and reasonable accommodations for Leaving Cert students, there is a long list of issues that need to be resolved.
The road to achieving a society where no person’s life is limited by epilepsy is a long one, but we continue to make good progress and we are confident of making big strides throughout 2020.
Thank you again to everyone who has worked so hard for Epilepsy Ireland throughout 2019 and on the behalf of everyone at the organisation, I would like to wish our members, donors, volunteers and service users a very happy Christmas and best wishes for 2020.