In anticipation of a general election before the end of the year, we are delighted to announce our new advocacy priorities that will shape our advocacy work for the foreseeable future.
The new priorities were identified following an in-depth consultation with our members and service-users earlier this year and following the successful completion of several longstanding advocacy campaigns in recent years.
These successes have included the introduction of a new Free Travel scheme for those medically unfit to drive for at least one year; the introduction of deferred Leaving Cert examinations for those who experience medical emergencies during their exams; and the establishment of an inquiry investigating the historical licensing and prescribing of sodium valproate (Epilim) which we campaigned for alongside our colleagues in OACS Ireland.
Our new advocacy priorities will be:
- Enhancing Epilepsy Services & Infrastructure
Ensuring that people with epilepsy have timely and improved access to diagnostics, treatments and specialist services. - Expanding the Chronic Disease Management Programme
Advocating for the inclusion of epilepsy on this HSE programme which aims to improve the care and quality of life of patients with specific chronic diseases through primary care (GP) interventions. Currently, the programme covers type 2 diabetes, asthma, COPD and cardiovascular disease. - A National Strategy to Reduce SUDEP & Epilepsy-related Deaths
Establishing a national approach with agreed targeted actions to reduce numbers of people who die from SUDEP and other epilepsy-related deaths in Ireland. - Seizure-safe Schools
Taking a proactive approach to managing epilepsy and supporting children with epilepsy in the classroom by ensuring that all teachers are trained in seizure first aid and epilepsy awareness, and by developing opportunities for students to learn more about epilepsy.
Epilepsy Ireland fully understands that there are many more challenges and issues facing the epilepsy community than just these four. However, recent experience has shown that focusing on a smaller number of key asks helps to ensure that they remain in public focus for elected representatives, policy developers and relevant Departments. We are confident that by working on these four key issues in the weeks, months and years ahead that we can achieve more positive policy successes for people with epilepsy and their families which will ultimately bring us closer to our overall vision of a society where no person’s life is limited by epilepsy.
In addition, all our new campaigns align fully with the World Health Organization’s Intersectoral Global Action Plan on Epilepsy and other Neurological Conditions 2022 – 2031 (IGAP). Ireland has committed to implement IGAP and meet the targets outlined in the Plan to improve the lives of people with epilepsy and other neurological conditions. Taken together, addressing our four priorities would go a long way towards meeting our national obligations under IGAP. Unfortunately, in the two years since IGAP was adopted by WHO, there has been very little progress made in Ireland.
You can read more about these new campaigns and the WHO’s Intersectoral Global Action Plan by visiting the ‘Advocacy’ section of our website.
As with previous campaigns, progressing these new priorities will not be possible without the support of the wider epilepsy community to raise the issues with local Oireachtas representatives and amplify the need for action. We hope we can continue to depend on your support for these new campaigns and with a General Election imminent, we will soon be sharing how you can help use your voice to support these new campaigns with your local candidates. Please stay tuned to our website and social media channels for more on this.
In the meantime, if you need any information or support on your or your loved one’s journey with epilepsy, please do not hesitate to contact your local Community Resource Officer. You can find their details by visiting the ‘Our Services’ section of our website.