With the General Election set to take place on February 8th Epilepsy Ireland is using the opportunity to further highlight matters important to people with epilepsy and their families with all election candidates.
We have selected six issues which are frequently highlighted by the people with epilepsy and their families we work with as being major factors in their day to day lives. These were also among the most common issues highlighted in our recent advocacy survey.
Living with epilepsy in Ireland today does not boil down to these concerns alone and there are many other relevant issues that we have not been able to include below. We encourage you as a person with epilepsy or a family member of a person with epilepsy to please use this General Election to discuss the issues that impact on you most closely with your local candidates as they call to your door.
You can download and print our General Election flyer for when they call. We have also prepared a draft email which you can edit to include other epilepsy issues important to you. We will also be sharing an image of our asks on our social media channels so feel free to tag your candidate to make them aware of these issues and ask for their support.
Our aim is to raise awareness of the impact of key epilepsy issues in advance of the 33rd Dáil being selected. We are also seeking a commitment from candidates that they will work with us to achieve progress on these and other matters of concern. We will record the list of candidates as they commit to supporting our asks. (See list here.)
The issues we will be raising with candidates are as follows:
1. The approval and filling of posts for specialist epilepsy healthcare professionals including consultant neurologists and epilepsy specialist nurses as identified in the HSE’s Model of Care for Epilepsy. An example of this would be that based on the latest census figures, there should be 35 adult epilepsy nurse specialists in the country. However as things currently stand, there are only 21 in place.
2. Access to new, proven medications and interventions that are available to people with epilepsy in other countries. For example - medications such as Epidyolex are now available in the US & UK and studies have supported its use in Lennox Gastaut Syndrome & Dravet syndrome. People in Ireland should be afforded the same access to new medications, interventions and technologies.
3. The development and implementation of a national strategy to reduce the number of preventable epilepsy-related deaths. Approximately 60 – 80 people die as a result of SUDEP in Ireland each year – we believe that many of these could be prevented through the development, resourcing and implementation of a national prevention strategy.
4. Automatic access to Free Travel for people with epilepsy who are prohibited from driving due to their epilepsy diagnosis. When a person holds a license and receives an epilepsy diagnosis, they generally lose their license until they are seizure free for at least a year. If the state takes away the license, they should provide free travel for the duration that person is off the road in order to allow them to maintain their employment and independence.
5. Amending the State Examinations Commission’s Reasonable Accommodations to ensure that students with epilepsy are provided with appropriate accommodations where required in State exams. Unfortunately for some young people with epilepsy who experience a seizure during state exams, oftentimes the only option for them is to re- sit the entire year. Provision should be made to allow students who experience a medical situation such as a debilitating seizure to sit an exam later in the summer and avoid this totally inappropriate delay to their education and career.
6. The full implementation of the Oireachtas Committee on Health recommendations on Sodium Valproate and foetal anti-convulsant syndrome (FACS) including the provision of supports for families affected by FACS. This issue, which affects up to 1,200 Irish families also requires further investigation by the State to provide answers to the families and to ensure that this situation is not repeated in the future.
We are also supporting the calls made in the Election manifestos of our colleagues in the Neurological Alliance of Ireland, The Wheel, Health Research Charities Ireland and the Disability Federation of Ireland.
As a Section 39 organisation, we provide community based support that is depended on by the state however state funding falls well below the actual cost of running our service. This is why we have a dedicated fundraising team and have initiatives such as Rose Week and Purple Day - so we can raise funds to provide our services. For this reason, we are also supporting measures that call for the better resourcing of Section 39 organisations, like ours, so we continue to provide our services to people with epilepsy and their families.
Thank you for your support and we would like to wish all candidates, their families and supporters every best wish for the remainder of their campaigns. We will work with all members of the 33rd Dáil in order to achieve a society where no person’s life is limited by epilepsy.