Epilepsy Ireland have launched a new survey aimed at gaining a great understanding of the issues which are facing you, and where you think we should concentrate our resources in the days, weeks, months and years ahead to achieve positive policy changes for people with epilepsy.
In the last number of years, we have taken an approach of focusing in on a small number of key issues affecting the epilepsy community. Focusing on a number of key issues rather than stretching our resources allows us to further research the impact of a particular issue, devise a communications campaign around it, and to continually return to it until we see targeted action to address the matters which are affecting our community.
While this approach requires patience, we do know it bears fruit given the success our organisation – with the support of our members , supporters and volunteers – has had on addressing a number of key issues identified as priorities in our last Advocacy survey.
These include the expansion of the Free Travel Scheme, the introduction of deferred Leaving Cert examinations for students who may experience a seizure before or during their exam; and working alongside our colleagues in OACS Ireland, the securing of a Government commitment to establish an inquiry into the historical licensing and prescribing of Sodium Valproate. We have also been prominent members of other campaigns, such as the Neurological Alliance’s Patient Deserves Better campaign to recruit more neurological nurses, and have addressed other issues facing the epilepsy community such as successfully advocating for the CBD medication Epidyolex to be reimbursed under the medical card and long term illness scheme.
With the success we have had in recent years, we are now seeking to establish and build new Advocacy campaigns which, we hope, will bring about more positive policy changes for people with epilepsy and their family members.
With the above in mind, we would greatly appreciate if you could complete our new survey on our Advocacy priorities. The time it takes to complete the survey will depend on what you have to say and the pre-populated options that we have included have been included as these are issues we have heard about directly from people who approach our services.
With a Local and European election slated for this year – and speculation rife that we could potentially also have a General Election toward the end of the year – this survey is an important opportunity to have your voice heard as we seek to introduce new campaigns. Please do take a moment to complete the survey by clicking the button below.
Thank you in advance for providing your thoughts and insights to this important survey. As always, should you need any information or support regarding your or your loved one's epilepsy, please do not hesitate to contact your local Community Resource Officer. You can find their details by visiting the 'Our Local Service' section of our website.