A Scottish sheriff has this week said that people with epilepsy should be told about the risk of Sudden Unexpected Death in Epilepsy (SUDEP).
The judge, Sheriff Alastair Duff, conducted a fatal accident inquiry into the deaths of two young women in Scotland. Erin Casey, 19, died in 2006 and Christina Ilia, 15, died in 2009. Both died from SUDEP. Neither had been advised of the risk of SUDEP by their doctor. The Sheriff concluded their deaths might have been avoided had they been informed of the risks and taken precautions to minimise these risks.
In his report, the judge made a series of recommendations. These include that the majority of people with epilepsy should be told about SUDEP when first diagnosed. Any decision not to do this should be noted on medical records.
It is well known among epilepsy charities that information about SUDEP is not always passed from doctor to patient. It is vital that people with epilepsy and their families are made aware of the factors that can increase the risk of SUDEP and how to manage them. There are steps people with epilepsy can take to help to lower the risk of SUDEP. These include always taking anti-epileptic drugs as prescribed and avoiding situations which may trigger seizures such as lack of sleep or stress.
Epilepsy Action welcomes the recommendations made in this report. We hope that they are adopted in Scotland and that similar steps are taken across the rest of the UK to help prevent people with epilepsy dying unnecessarily.
Anyone concerned about epilepsy and SUDEP can call the Epilepsy Helpline on Freephone 0808 800 5050 or read our information on SUDEP.
Comments: read the 6 comments or add yours
Comments
I have just read this link on Epilepsy Action and thank you for highlighting SUDEP. My brother aged 42 sadly passed away this April due to SUDEP. After his death, I spoke to his Neurologist as he had an appointment to see him, he was very shocked when I turned up to tell him that my brother had died. We spoke about his death and this is when he told us about SUDEP. Up until then myself and my family knew nothing about SUDEP. My mother is devastated and can't believe that no one had ever mentioned that this could happen. He has had epilepsy since the age of 5 (petit mal) and up until his death he had tonic clonic seizures twice a month. The doctors admitted that his epilepsy was never really controllable. He had serious memory problems associated with his fits and found it difficult to remember lots of things including to remember to take his tablets! Another problem for him was that he lived alone so when he had his last fatal fit know one was with him. Now I know how important it is for everyone with Epilepsy to have all the facts. SUDEP is rare and just because someone suffers with Epilepsy doesn't mean that this will happen to them, but will allow people to lower the risk of it happening to themselves or loved ones.
my sons consultent was very truthful and explained to my son in no uncertain terms what could be the outcome if he did not take his medication and though it seemed blunt at the time im so very glad that we knew the facts !!!
Thank you Mark for posting information about the Fatal Accident Inquiry into the deaths of Erin and Christina.
The outcome of the inquiry is of significance nationally and internationally and will be a lever for change not only in Scotland, but across the UK and beyond.
If anyone reading this has been bereaved by epilepsy and needs information and support please contact the Epilepsy Bereaved support line on 01235 772 852.
support@eb-team.org.uk
www.sudep.org
I have read the comments about the fatal accidents where SUDEP has been the stated cause of death and wish to convey my sympathies to the families involved. As I have just completed writing a book about the various aspects of epilepsy, SUDEP included and my research had indicated that SUDEP occurs during sleep I would like to know if the people who died were driving at the time of their seizures.
Would you mind giving me further information regarding those accidents? If that is too upsetting for you please disregard my request.
Kind regards
Betty Magoffin
Toowoomba, Queensland, Australia
My son died of SUDEP in 2010. We were given no information regarding Epilepsy whatsoever, never mind SUDEP. We were handed a box of tablets and that was our lot. We have complained to the hospital concerned, this was rejected and we have now taken the matter further. Hopefully, the outcome of this inquiry will be taken into consideration in my son's case. I have deliberately not given my name, as I do not wish to prejudice the ongoing action taken against the hospital in question. I find it unbelievable that these doctors think they can play god with their patients and their lives. I find it unbearable to find out that my son might have been saved by decent information, a few changes to our family life and possibly a few hundred pounds to purchase an alarm. Life may be cheap to these so called experts but my son's life to me was precious and irreplacable and I am sure that the parents of Erin and Christina feel exactly the same. Their behaviour throughout this whole ordeal is to be admired, and whilst it cannot return our children to them or my son to me, hopefully the sherrifs findings will become more than just a suggestion as to how to proceed for doctors and hospitals, and become standard procedure.
My brother also died from SUDEP last year aged 28, he had been suffering from epilepsy since early childhood and had been taking grand mal seizures about once a month. Neither my brother or our family were aware of SUDEP, when my brother was originally diagnosed with epilepsy as a child my Mum was told that epilepsy couldn't kill you. We can't help wondering that if we would have been warned this could happen his death could have been avoided. I can't understand what reason there would be for not sharing this information with patients and their families.