Press updates

Some of SUDEP Action Day’s press
releases, blogs and news updates.

2019

UK epilepsy safety tool released in Australia in time for global awareness day

On 23 October, SUDEP Action Day, Epilepsy Action Australia welcome the launch of the SUDEP & Seizure Safety Checklist to health professionals in Australia.

In collaboration with SUDEP Action, this launch will see this Checklist be the first free clinical tool available across Australia, to support health professionals discuss and monitor risk factors with their epilepsy patients.

With epilepsy affecting approximately 250,000 Australians, Epilepsy Action Australia and SUDEP Action have been working in partnership since 2017, to help improve the knowledge and awareness of mortality risks in patients, as well as those professionals that treat them. First by sharing essential epilepsy risk information, and now with the SUDEP & Seizure Safety Checklist.

SUDEP Action has always welcomed collaborations with organisations in the UK and across the globe, to support increasing awareness of epilepsy risks and mortality. However, this is the first formal collaboration in Australasia to join forces to tackle these issues using existing resources and knowledge.

SUDEP Action CEO, Jane Hanna OBE added that, “We are thrilled to be showing how this UK and Australian partnership, now in its third year, has brought value to the SUDEP and Seizure Safety Checklist and to the people who use it. It’s through this strong shared motivation to work together, we will hopefully avoid many sudden, and preventable deaths.”

This is echoed by Dr Rohit Shankar MBE, the Clinical lead for the Checklist who commented “The Checklist has had unconditional support by the research, clinical and patient communities, and most of all, the bereaved families seeking to make a difference. The Checklist stands testimony to how structured person-centred holistic communication can be a powerful intervention, to prevent the dreadful outcome of death due to epilepsy, and is a vanguard tool in our fight against epilepsy mortality.

The SUDEP & Seizure Safety Checklist was originally developed in Cornwall (UK) as a collaboration between SUDEP Action and Cornwall Partnership NHS Foundation Trust in 2015, and is supported by leading experts.

As well as supporting improved communication and management of epilepsy risks alongside general wellbeing, the Checklist also provides the latest research on epilepsy risks to clinicians, boosting their own professional education. Research findings have already shown that these discussions are potentially lifesaving.

Epilepsy Action Australia is the largest provider of services to people living with epilepsy. CEO Carol Ireland, commented, “The award-winning SUDEP & Seizure Safety Checklist is a tool for clinicians to support conversations on epilepsy risks and SUDEP, helping to monitor their patient’s overall wellbeing and changes in risk factors. We are also encouraging patients to alert their clinicians about the Checklist, as going through it can provide them with more knowledge around seizure risk management and hopefully some peace of mind. This is such a positive progression.”

The Checklist has already won numerous awards and is used by over 750 UK clinicians. Most recently, at the British Medical Journal (BMJ) Awards 2019 receiving high commendations from the judging panel, on not only the Checklist, but also the patient-facing safety app, EpSMon, as being “both original and ground-breaking and will have a major impact in improving care for patients and their families.”

 

For further information about the SUDEP & Seizure Safety Checklist: www.sudep.org/checklist (UK) and www.epilepsy.org.au/sudep-checklist (Aus)

For information on epilepsy risks and how to reduce them visit: www.sudep.org or www.epilepsy.org.au

                

EAA collaboration logo

 

#5forEpilepsySafety by Faye (author of the blog Epilepsy, Motherhood & Me)

This year the message for SUDEP Action Day is a simple one. Take 5. Whether that be five minutes to educate yourself about SUDEP, five minutes to share information online, five minutes to contact your MP, or 5 minutes to make the decision to fundraise, campaign or raise awareness. It’s not much to ask at all when you realise that by taking five you may just save someone’s life.

Here is my input to #5forEpilepsySafety.

I am writing this blog and will ensure I share at least five posts on social media for SUDEP Action Day, hopefully educating and spreading a little awareness.

On a personal note I am going to sit down and look at my own epilepsy and work out if there is room for improvement in my care. It is so easy when you have lived with epilepsy for a long time to forget to take stock of it all (especially when it is fairly well controlled) Am I getting enough sleep? Can I reduce my stress levels in any way? This campaign is not only about sharing awareness but also about looking inwards and ensuring you are doing everything you can to minimise your own risk of SUDEP.

When I saw the campaign this year it really got me thinking and I decided that I was going to do two things. As I said the first was awareness related. I was going to write this post and I am going to share lots of facts etc on social media. The other was a bit more personal, it made me sit and think. So often lately I share stuff in the blog and work on awareness, but I don’t always look at my own journey with epilepsy anymore.

One of the things SUDEP Action try and highlight all year round is to look at your own risk factors because seizure control is the biggest way to reduce your risk of SUDEP. It really hit home with me, maybe because of Noah? Maybe because of the fact I realised life is short. So today I am about being honest with you all and making sure you do the same with yourself.

Am I getting enough sleep? No.

Am I exercising as often as I could be? Again no (exercise has always helped me personally control my epilepsy).

Have I forgotten to take my meds? Yes. As a busy Mum I am so often running about after others that I will be honest and say there have been days I have forgotten.

As a teenager have you been out with mates/out for a drink and forgotten when you got home to take medication? We have all been there, but it’s important we don’t make a habit of it.

Have I had more alcohol on evenings than I think is sensible with my epilepsy? Yes.

So, for me, what started as a project to help SUDEP Action Day has actually turned in to me really looking at my own health. I appreciate this list doesn’t make me sound like the best role model for anyone with epilepsy but its about being honest and about real life, and that sometimes we all slip up, or don’t always take the best care of ourselves.

 

So what have I done about it?

I have set alarms to make sure I take medication, and rather than turning them off and carrying on with what I am doing I am making sure that I stop and do it when that alarm sounds. I have gotten back into swimming on a weekly basis, ensuring that I am physically healthy. It also means I sleep well as I am tired from swimming. Sleep deprivation has always been a big trigger for me, so this is so important. I am trying to get to bed at a decent time or making an effort to nap when I can if I am tired. I am not saying it is always possible but if I at least try then it’s better than no attempt at all. I am now making sure that if I know I am going out I try and take my medication before I go where possible, so I don’t forget late in the evening, and I am limiting my alcohol intake.

It took this campaign by SUDEP Action to make me think of myself and identify my seizure triggers and therefore what were my risk factors. I also did something I haven’t done for a very long time and discussed my medication with my epilepsy nurse. It ended in the agreement that we were not going to change anything, but it was good to sit and discuss options and why I was on the best combination for me right now. I also did something that I am terrible at doing and took on board some advice he gave me.

My own life is very stressful at the moment and he knows me well enough to know it means I go looking for an outlet, normally by doing something a bit crazy (like a marathon or 100KM trek) and he advised me very gently to not throw myself into anything new for a while and for once I have listened 🙂 I am currently 19 months seizure free and if I can help it I’d like it to stay that way.

 

WHAT IS SUDEP?

SUDEP is when a person with epilepsy dies suddenly and prematurely and no other reason for death is found.

SUDEP deaths are often unwitnessed with many of the deaths occurring overnight. There may be obvious signs a seizure has happened, though this isn’t always the case.

Epilepsy, like other long-term conditions such as Asthma or Diabetes comes with certain risks. If left unchecked these can become very serious and can cause some people to die prematurely; so knowing about them, and understanding how to reduce them where you can, is important. Unfortunately, a number of people with epilepsy do die each year. 21 people with epilepsy die each week in the UK alone (over 1000 per year), but this number is likely underestimated. Up to 50% of these deaths are due to Sudden Unexpected Death in Epilepsy (SUDEP).

 

But what can you do?

SUDEP Action have kindly provided some ideas of how you can get involved.

TALK

Get online, share information, share the key messages and posters. Use the hashtags #5forepilepsysafety and #SudepACtionDay2019, can we get it trending this year?

LEARN

  • Take a look at the www.sudepactionday.org. It is full of useful information and advice: understanding your condition is a powerful step to reducing risk.
  • Talk to your neurologists, doctors, or nurses about SUDEP and any steps you can take to reduce your risk.
  • Share the information with others, educate them about SUDEP.

CHECK YOUR RISKS

This was a big one for me, and one I think all of us with epilepsy should do on a regular basis.

But what can you do?

  • Use a seizure diary to help you keep an eye on your epilepsy: even if you are seizure free or your seizures are controlled, it can still help!
  • Make sure you have a yearly epilepsy review with your health professional to check for any changes
  • Check out the EpSMon app to help you keep an eye on your risks & how they may be changing (knowing about your risks means you can do something quickly if things change)
  • Check out any national epilepsy guidelines for information to help you know the care to expect

CAMPAIGN

Help SUDEP Action smash the stigma by talking openly and honestly about your epilepsy:

  • Tell those around you how they can support you day-to-day or help during a seizure, find our seizure first aid poster here
  • Write to your local MP – can they help you & SUDEP Action raise awareness?
  • Share the #5forEpilepsySafety campaign images and downloads – could you create a display somewhere?
  • Ask your local GP surgery, epilepsy clinic or epilepsy group to display leaflets on SUDEP and epilepsy risks

FUNDRAISE

Would you be able to take #5forEpilepsySafety and organise or be part of a fundraiser this year on SUDEP Action Day?

  • Get those running shoes on and take part in a sponsored race
  • Not afraid of heights? Why not take part in a sponsored bungee jump!
  • Prefer to find inspiration from GBBO? Get your bake on and hold a bake sale to raise funds

 

For me I am not in a position to take part in an event at the moment, but I have made the decision that the next five times I am out and go to buy a coffee I am going to match that amount and donate it to SUDEP Action. It is all part of #5forEpilepsySafety. Again, such a small thing but one if a few people do it will make a real difference.

I am so grateful for this year’s campaign because it has made me stop and reflect on my own health, and if everyone else does the same we will be well on our way to reducing the risks and hopefully reducing the number of deaths from SUDEP. If you have been affected by anything you have read or would like some more information or support please visit www.sudep.org or get in touch with the amazing SUDEP Action who will be more than happy to help.

—-

Faye is the author of the blog, Epilepsy, Motherhood & Me 

 

2018

Epilepsy Action Australia - Have you heard of SUDEP?

 

One year on from the 2017 announcement of their collaboration to share vital epilepsy risk information           across Australia, SUDEP Action and Epilepsy Action Australia (EAA) are continuing their positive work   together.

 With epilepsy affecting approximately 250,000 Australians, the partnership is keen to show the need for     further interventions, which would support risk communication and management between clinicians and     people living with epilepsy. Many people are unaware of the risks associated with epilepsy and the existence of Sudden Unexpected Death from Epilepsy (SUDEP) which is not often spoken about and this important ground work has the potential to improve epilepsy risk awareness and management, which has the potential to save lives.

Carol Ireland, Chief Executive Officer of Epilepsy Action Australia, says: “Our collaboration with SUDEP Action is fuelled by the clear demand in Australia from clinicians and people living with epilepsy for more support in managing their condition. It is great to work with SUDEP Action to meet this need and EAA are proud to support SUDEP Awareness Day.

We are committed to supporting increased research to find out the exact cause of the fatalities, which affects around 1 per 1000 people with epilepsy. An exact cause is unknown. Researchers are investigating a range of possibilities such as the effect of seizures on breathing and the heart. Risk varies from person to person so it is important for people to learn about their own epilepsy and work actively with their healthcare professionals to minimise the number of seizures.”

This year’s International SUDEP Action Day is on Tuesday 23 October. This day is dedicated to raising much-needed awareness of epilepsy risks and taking action against this silent but tragic consequence of epilepsy. It is also an opportunity to highlight the positive relationship and work already being done to tackle epilepsy-related deaths.

SUDEP Action CEO, Jane Hanna OBE said, “This is an exciting collaboration which is now in its second year. We know there is much that can be done now to reduce risks and look forward to working with Epilepsy Action Australia to achieve this across Australia.

SUDEP Action has always welcomed collaborations with organisations in the UK and across the globe, to support increasing awareness of epilepsy risks and mortality. However, this is the first formal collaboration in Australasia to join forces to tackle these issues using existing resources and knowledge.”

According to Epilepsy Action Australia CEO, Carol Ireland: “This SUDEP Action Day, I urge you to find out as much as you can about SUDEP by reading some of Epilepsy Action’s more detailed information here and then contact your doctor if you have any concerns about you or your family member’s medication and seizure control.

If you would like to become involved in helping promoting awareness, the official SUDEP Action Day page has a wealth of ideas including changing your social media covers or publicly displaying some of the great information posters available to download.

SUDEP Action Day provides an opportunity for us to truly take action on openly discussing SUDEP, and also for us to take a moment to consider the families of those who have lost someone as a result of epilepsy.”

For further information and to hear the latest news and updates about this collaboration as it develops visit:

www.epilepsy.org.au

www.sudep.org

Danny Did Foundation - October 23rd Marks International Day of SUDEP Action

 


The Danny Did Foundation has joined epilepsy organizations in the United States, Europe, Australia and around the world to recognize October 23rd as a global awareness day for Sudden Unexpected Death in Epilepsy, or SUDEP. The goals are to advance awareness about SUDEP, to encourage people with epilepsy to learn about SUDEP and their individual risk, and to honor the lives lost to the most common form of death in epilepsy.

This international collaboration has grown strong since 2008, and now in 2018, there is a multi-faceted movement to understand and prevent SUDEP. Initiated by families and advocates who were desperate for answers, this movement now includes scientists, clinicians, medical examiners, non-profit organizations, and governmental agencies. This broad group of stakeholders has rallied to end sudden death in epilepsy by launching innovative research projects, awareness and educational campaigns, and bereavement support services.

Earlier this year, action in the U.S. featured a multiday event devoted to epilepsy mortality known as Partners Against Mortality in Epilepsy (PAME). The fourth PAME meeting took place June 14-16th in Alexandria, Virginia. Details about PAME are at http://pame.aesnet.org/.
UK-based nonprofit SUDEP Action – which created SUDEP Action Day – has participated in PAME meeting since 2012, enabling a deepening of the relationships across the pond and the opportunities to advocate together. The Epilepsy Foundation of America is among the nonprofits supporting SUDEP Action Day on October 23rd.

Tom Stanton, Executive Director of the Danny Did Foundation and Co-Chair of PAME said,
“This is the 5th time that we will celebrate SUDEP Action Day, which includes the opportunity to honour the special relationship with bereaved families in the UK and in the U.S and around the world. The SUDEP movement requires action and advocacy daily to bring us closer to prevention, but October 23rd is an especially powerful day when we can all share common messages and raise our voices together.
We lose thousands of people like Danny every year, and we urgently need funding and progress. We are grateful to SUDEP Action for taking the lead to engage all advocates around the world to take part.”

Jane Hanna OBE, CEO of SUDEP Action said, “It is great to have PAME’s support for this global initiative which is now in its fifth year. As it gathers momentum, it is so important that the international community rallies behind this cause; and to have such close relationships helps to drive this forward.”

About Danny Did Foundation
Founded by Chicago parents Mike and Mariann Stanton in 2010 after the sudden death of their four year-old son Danny, the Danny Did Foundation’s primary mission is to prevent deaths caused by seizures. The Foundation advances public awareness of epilepsy and Sudden Unexpected Death in
Epilepsy (SUDEP), strives to improve communication about SUDEP between medical professionals and families affected by seizures, and advocates for the mainstream acceptance and use of seizure detection and prediction devices that may assist in preventing seizure-related deaths.

Epilepsy affects 3.4 million people in the United States and 65 million people worldwide. One in 26 Americans will develop epilepsy during their lifetime. But what few people understand, including many people with the disorder, is that seizures can be fatal. More people die as a result of seizures than from fires and sudden infant death syndrome (SIDS) combined. The causes of death can vary and include drowning, other accidents and status epilepticus (prolonged seizures). In addition, thousands of deaths occur annually from SUDEP, a fact that is little known and too rarely addressed in public and in medical circles. The name of the Danny Did Foundation originates from the last line of Danny Stanton’s obituary,
written by his dad: “Please go and enjoy your life. Danny did.”

 

2017

23 October marks International Day of SUDEP Action

Epilepsy Organisations in the United States, Europe, Australia and around the world have joined to recognize October 23rd as a global awareness day for Sudden Unexpected Death in Epilepsy, or SUDEP. The goals for this day are to advance awareness about SUDEP, to encourage people with epilepsy to learn about SUDEP and their individual risk and to honor the lives lost to the most common form of death in epilepsy.

This international collaboration has grown strong since 2008, and now in 2017, there is a multi-faceted movement to understand and prevent SUDEP. Initiated by families and advocates who were desperate for answers, this movement now includes scientists, clinicians, medical examiners, non-profit organizations, and governmental agencies. This broad group of stakeholders has rallied to end sudden death in epilepsy by launching innovative research projects, awareness and educational campaigns, and bereavement support services.

Progress in the U.S. is supported by a multi-day event devoted to epilepsy mortality known as Partners Against Mortality in Epilepsy (PAME). The fourth PAME meeting will be held June 14-16, 2018 in Alexandria, Virginia. Details about PAME are at http://pame.aesnet.org/.

The Epilepsy Foundation of America and the Danny Did Foundation are among the nonprofits supporting SUDEP Action Day on October 23rd.  UK-based nonprofit SUDEP Action – which created SUDEP Action Day – has participated in PAME meeting since 2012, enabling a deepening of the relationships across the pond and the opportunities to advocate together.

 

Tom Stanton, Executive Director of the Danny Did Foundation and Co-Chair of PAME said,

“This is the fourth time that we will celebrate SUDEP Action Day, which includes the opportunity to honor the special relationship with bereaved families both in the UK and in the U.S. The SUDEP movement takes daily action to bring us closer to prevention, but October 23rd is an especially powerful day when we can all share common messages and raise our voices together. We are grateful to SUDEP Action for taking the lead to engage all advocates around the world to take part.”

 

Jane Hanna OBE, CEO of SUDEP Action said,

“The special relationship we have with PAME and with many of the U.S. organisations has meant that distance has not been a barrier. The opportunities to share and for the SUDEP movements in both countries to support each other means we can make faster progress together.  The SUDEP movement is a success story so far only because we have not let geography get in the way.”

 

Tom Stanton Co-Chair PAME 2018                     

Jane Hanna OBE, CEO SUDEP Action

SUDEP Action partner with Epilepsy Action Australia for global awareness campaign

epilepsy-action-australia

 SUDEP Action has established an exciting new collaboration with Epilepsy Action Australia in time for SUDEP Action Day 2017. This collaboration provides the most current information related to epilepsy-related death to families across Australia.

Epilepsy affects approximately 250,000 Australians, and yet very few people are aware that people with epilepsy are at risk of Sudden Unexpected Death from Epilepsy (SUDEP).

The first phase of this project has seen Epilepsy Action Australia adopt SUDEP Action’s new information pages on epilepsy risks, mortality and risk reduction. They will also be distributing specially adapted versions of our information leaflets to clinicians, families, and people with epilepsy across Australia; starting with SUDEP Explained for Health Professionals and Reducing Risks leaflets.

Carol Ireland, Chief Executive Officer of Epilepsy Action Australia, said she was “delighted to launch this powerful partnership that she hopes will lead to more research, awareness and more lives saved. Ensuring people have a reliable source of information is the first important step. Through combining our strengths, we hope to reach as many professionals and families as possible across Australia,” said Carol.

This year’s International SUDEP Action Day is on Monday, 23 October, and is dedicated to raising much-needed awareness of, and taking action against this silent but tragic consequence from epilepsy.

SUDEP Action CEO, Jane Hanna OBE said: “We are excited about the shared commitment that this partnership represents to tackling SUDEP and epilepsy deaths in Australia. Collaboration is the best way to tackle this and maximise value to the epilepsy community.

SUDEP Action has always welcomed collaborations with organisations in the UK and across the globe, to support increasing awareness of epilepsy risks and mortality. However, this is the first formal collaboration in Australasia to join forces to tackle these issues using existing resources and knowledge.

For further information and to hear the latest news about this exciting collaboration visit:

www.sudep.org

www.epilepsy.org.au

You can also see Epilepsy Action Australia’s new video about SUDEP, which they will be using to help them raise awareness across Australia here.

UK Press

Exposure and supporter activity was busy for the 2017 event.

Here are just a couple of examples:

Clydebank’s Titan Crane lit up for SUDEP Action Day 

BlogsEpilepsy, pregnancy, motherhood and me

Coverage of supporter SUDEP awareness walk