Sudden death in epilepsy

[foxcroft]

How important do you think it is to know about sudden death in epilepsy? Whose responsibility should it be to give information, and are there guidelines for medical staff on what should be said?

[Epilepsy Action]

Hi Foxcroft

Epilepsy Action believes that it is very important for people with epilepsy and their families to be aware of the risks associated with epilepsy, including SUDEP. If you don't know about it, you don't know how to try to reduce the risk of it happening. There is some information about SUDEP on our website epilepsy.org.uk:

The following information is from the patient summary of NICE guideline CG137: http://tinyurl.com/p3pz4j4

"Your healthcare professional should offer you information about epilepsy in a format that you find useful. They should make sure you have relevant information when you need it ... Every time you see your healthcare professional they should make time to check that you have all the information you need. They should use a checklist to make sure they cover everything you need to talk about." This list includes SUDEP.

To our understanding, the healthcare professional could be your epilepsy specialist, specialist nurse, GP, or other healthcare professional responsible for your care.

You might like to contact SUDEP Action sudep.org for more information.

Hope this answers your question

Kathy

[Dr Hannah Cock]

Hi Foxcroft,
Good question - as you've seen there is clear guidance on this, and it is something that should be discussed. The trickier question is how and when - and this can be hard to judge. My own practice is to mention it at the time of making the diagnosis, or whenever I first see a patient. This is most commonly in the context of reassuring patients that it is overall rare (you are as likely to die as a pedestrian in a road accident, and the risks from e.g. smoking or obesity are much higher), that if the seizures can be completely controlled the risk is absolutely minimal. I would also rather they heard it from me, individualised to their particular situation, than found out from another source which might then damage their trust in me. Obviously there are some cases where the risks are higher, and then a balance needs to be struck between doing what you can to minimize the risks as far as possible, whilst recognizing that lots of things in life are a risk and it is important not to let fear of SUDEP become too dominating. Others argue that telling patients or carers/parents causes undue anxiety, but research doesn't back this up, and in general my experience is people are often relieved as it was something they had anyway thought about but were afraid to ask.

Anyway - that's my view.
Hannah

[Jelly Syrup]

Hi I was never told about SUDEP but read about it on Epilepsy Action, I have had Epilepsy for 28 years since I was 16. My eldest daughter passed away from SUDEP on 5th of November 2007. Hazel was 17 years old. My consultant claimed he never knew I had a child with Epilepsy even though she had just moved to the adult consultant & was under his colleague! Felt very let down

[Karen Osland]

Hi Foxcroft,
I whole heartedly support what has been said and agree with Hannah that the information is best given by the professionals who are treating and who understand best about the individual condition. People with epilepsy need to be fully informed if they are to make the right lifestyle choices to reduce their risk of SUDEP.

Although there is much improved awareness around risk in epilepsy, the need for individualised communication about SUDEP is essential. Communication about risk opens up the opportunity for the patient to share their thoughts and fears and provides opportunity for them to make informed decisions on medicines adherence and self-management.

SUDEP Action is leading a call for ‘Openness’ and this has been supported by organisations and professionals worldwide. Openness about SUDEP is about information being given routinely as part of general epilepsy information. Information given in a positive way early on at or following diagnosis can help people understand whether they are at any risk and what measures they can take to reduce and manage this. People prefer information and discussion with their doctors and nurses.

The medical team is also best placed to make a decision to withhold or delay informing someone of their risk where there is good reason to believe that information about SUDEP is likely to cause a person real harm.

Hope this is helpful too
Karen

[Dr Hannah Cock]

dear Jelly Syrup,
My condolences for your loss, and I'm sorry to hear you felt let down. Lets hope the openness campaign and guidelines continue to improve the experience of families and people living with epilepsy.
Kind regards
Hannah

[Jelly Syrup]

Thank you for your support Dr Hannah take care from Jelly Syrup

[Karen Osland]

Dear Jelly Syrup,

Losing someone you love suddenly and unexpectedly is very hard. I guess you know only too well the
pain doesn't go away, but in time it becomes a little easier to manage and many people learn to wear
a mask for the sake of others.

You may have already been in touch with SUDEP Action support line, but please know that you can
access further support at any time. If you feel the need to talk, please ring 01235 772852.

Karen

[Jelly Syrup]

Thank you Karen for your support, it has become a little easier, we have had a lot of support from family, friends & even my daughters friends! Take care from Jelly Syrup