Ireland: looking ahead
[Part 4: Action; Glynn M]
Since the second Global Conversation in 2011, we in Epilepsy Ireland have been concentrating our efforts in the following areas:
Awareness – working to ensure that all people with epilepsy and their families know about the risk of SUDEP
Informing – endeavouring to make as many doctors as possible, who have patients with epilepsy, know about SUDEP
Influencing– encouraging these doctors to tell their patients about SUDEP
Research – supporting all research into causes and potential solutions for SUDEP
Epilepsy Ireland takes every opportunity to highlight epilepsy deaths, especially SUDEP, in Epilepsy News our quarterly Newsletter, on our website, on our Facebook and Twitter pages and in our e-zines sent to all on our database. This regularly results in members complaining that they are reading about the subject too much and a number of people cancel their membership each time an article appears. However, this has not persuaded us to in any way reduce our efforts although we do, of course, hope that someday this will no longer be necessary because either everybody knows about the dangers of SUDEP or, better still, a way to prevent it has been found. Unfortunately, neither of these scenarios look likely to happen in the immediate future. Research does tell us that more and more people are looking for information about SUDEP. Recently, Brigo et al (2014) found that over the ten year period from January 2004 to September 2013, Google searches using the term ‘SUDEP epilepsy’ have increased 5000%. The problem with this is that people with epilepsy or their families may be accessing inappropriate or incorrect information using the Internet. Somehow they need to be re-directed to organisations such as Epilepsy Ireland, or SUDEP Action, to ensure that they are properly informed.
We must raise awareness in the doctors and nurses involved in treatment and the general public. We must bring all the associated risks connected to living with epilepsy into the open, into the public domain and mind-set, in the same way as other illnesses and conditions. This is not the case at present. In Epilepsy Ireland’s experience, health professionals tend to need information on the following concerns:-
What is the incidence of epilepsy-related deaths?
What are the causes and risk factors?
Can epilepsy deaths be prevented?
The limited answers we can provide them with do not always provide the reassurance they would wish for and so the need for research to provide better answers to these concerns are urgent. Nevertheless, we believe that the information we can provide should be sufficient for these doctors and nurses to at least provide their epilepsy patients and their families with:
Clear evidence of what increases the risk of epilepsy-related death and the best approach to reducing those risks
Evidence to show what information about epilepsy-related deaths is most important and should be given to everyone with epilepsy and their families
More time during appointments to actually discuss the risks associated with epilepsy
Studies of neurologists' practices demonstrate that the majority rarely or never discuss SUDEP with their patients who have epilepsy, according to Donner & Bucchalter (2014). If these specialists will not talk about SUDEP, it is very difficult to expect GPs and hospital doctors to do so. Despite this, there has been increased awareness of SUDEP among patients with epilepsy, according to surveys performed in several countries. It is likely that many patients with epilepsy first hear about SUDEP on the Internet. Neurologists could use the fact that many of their patients have read about SUDEP on the Internet to ensure that patients have the most accurate information about their personal risk and know what measures can reduce this risk. For a doctor to simply ask what the patient or his/her family member has read about epilepsy may be an opening for a discussion about the risks of epilepsy and seizures, and about the ways to reduce those risks. For many people with epilepsy, especially those with well-controlled epilepsy, such a discussion could be an opportunity to reinforce their low risk for SUDEP and reduce the anxiety that comes from reading about SUDEP after searching for information following a diagnosis. There is a very welcome editorial and four excellent articles on SUDEP and when to talk about it in the current edition of Epilepsia. Epilepsia is the leading epilepsy publication and is the journal of the International League against Epilepsy. This is a very welcome development as most medics look to peer reviewed journals for guidance on specific conditions.
Epilepsy Ireland has been active in trying to stimulate research into SUDEP in Ireland through our annual research calls for new projects. However, the success of SUDEP Action’s new Epilepsy Deaths Register based in the UK, but operating on an International basis, has inspired us to work with SUDEP Action to create the Epilepsy Deaths Register for Ireland (EDRI) to focus our SUDEP research activities in this way. SUDEP Action and Epilepsy Ireland have worked together on SUDEP Awareness since the 1990’s and the EDRI partnership is a major landmark on this journey. Work between the two charities has been ongoing throughout the year and the EDRI will be launched before the end of 2014. The aim of the register is to work with researchers to help with the prevention of epilepsy deaths and in the understanding of SUDEP. The register will provide a place where bereaved families can register an epilepsy-related death. This information will be used for medical research, in the hope that it will one day help towards finding a cure and prevent more unnecessary loss of life. The task of setting up the EDRI has been greatly assisted by Professor Henry Smithson’s relocation to University College Cork.
Research teams all over the world, including Ireland, are slowly finding out more about SUDEP and other epilepsy-related deaths. Nevertheless, there is still much more work to be done. Every person who reports an epilepsy-related death will help the research. They will bring our knowledge one step closer to finding the answer to SUDEP and other epilepsy-related deaths.
The cost of setting up the EDRI has been greatly assisted by the ‘Tour de Gaggs’ fundraising of the Gallagher family, which is much appreciated by Epilepsy Ireland.
Chief Executive, Epilepsy Ireland
How to cite:
Glynn M. Ireland: looking ahead. In: Hanna J, Panelli R, Jeffs T, Chapman D, editors. Continuing the global conversation [online]. SUDEP Action, SUDEP Aware & Epilepsy Australia; 2014 [retrieved day/month/year]. Available from: www.sudepglobalconversation.com.