Hope you’ll enjoy this mix of epilepsy-related news and comment.
We’ll try to keep you right up-to-date with the latest medication and treatment ideas, along with our thoughts on some of the bigger issues. When we get the latest news on Electricity – the book, the sequel and the film – we’ll post it here too.
Just one thing – if you have a comment or a question, or some thoughts of your own, please let us know. We’d love to hear from you…
A major Swedish study has shown that the greatest cause of premature deaths in people with autism and learning disability is epilepsy. The largest cause of death in people with autism who do not have an intellectual disability was taking their own life. All our courses include strategies to minimise premature deaths in people with epilepsy. Read Aiden’s story, where the positive impact of our training has improved his life.
» Read more about: Premature deaths in people with autism »
We will be supporting the charity’s campaign for a National Audit of Epilepsy Deaths. 39% of epilepsy deaths may be preventable. All you need to do is pop your postcode in the link to join the campaign for avoidable deaths and complete the form. This will generate a letter to you MP asking them to contact the Minister for Health.
» Read more about: Join Epilepsy Society’s campaign to reduce avoidable death from epilepsy »
During National Epilepsy Week 17th- 24th May 2015 we will be supporting Epilepsy Society by engaging with our MP and asking him to Speak up for Epilepsy.
We have also joined Twitter so please follow us.
» Read more about: Follow us on Twitter to help raise awareness »
Let’s imagine the scenario: you’re the registered manager of a care home for vulnerable adults. Your staff are all well trained, and understand how to deal with epilepsy skilfully and with dignity. But one day, tragically, somebody with epilepsy in your care home dies unexpectedly…
You had an up-to-date care plan in place. What more could you have done?
This isn’t meant to scare you. It’s simply meant to get us all thinking more about Sudden Unexpected Death in Epilepsy.
» Read more about: Can you do anything to prevent Sudden Unexpected Death in Epilepsy (SUDEP)? »
Buccal midazolam training is one of our most popular courses. So if you’re thinking of getting some buccal midazolam training for your or your team, this blog is a good place to start…
As anyone who has cared for, lived, or worked with someone who has epilepsy knows, seizures are scary. The longer the seizure lasts, the more damage it can do – and the less likely it will be to respond to medical intervention.
» Read more about: Buccal Midazolam Training »
If you google ‘marijuana and epilepsy’ or ‘cannabis and epilepsy’ you’ll get a pretty wide spread of opinions on the question of whether or not marijuana is actually effective at treating the symptoms of epilepsy.
So what – and who – should you believe?
We’re not going to weigh in with an opinion here, but we are going to give you a little taste of popular opinion. At the time of writing this is a particularly hot topic in America.
» Read more about: Is marijuana really good for epilepsy? »
I’m often asked “why do staff need to do epilepsy awareness training?” And of course the short answer is: it’s a CQC requirement for care providers. But as an epilepsy awareness trainer, I can give you a different answer; I can tell you why the people in your care want care staff to have epilepsy awareness training…
How do I know?
I had epilepsy.
I was diagnosed at fifteen months old and had uncontrolled seizures well into my adult life.
» Read more about: Why Do Epilepsy Awareness Training? »
Second chance to see BBC Newsnight’s moving story and the amazing work of the Epilepsy Surgery Team at the National Hospital for Neurology & Neurosurgery.
Link to the Article
» Read more about: BBC Article on the Epilepsy Surgery Team »
Electricity – The film
The author Ray Robinson contacted me over ten years ago. He was planning to write a fictional book where the main character had epilepsy. Ray asked me if I would like to share my experiences of living with epilepsy as part of his research for the book.
I duly sent him my story of living with temporal lobe epilepsy, complete with the highs and lows.
» Read more about: Electricity – The film »