Erin
Christina
The families of two young women who died from epilepsy have welcomed a report into their deaths which has been published today.
19 year old Erin Casey from Leven died in her sleep during her sixth week at St Andrews University in 2006. Christina Ilia was only two weeks away from her 16th birthday when she died in her sleep at her home in Forfar, in March 2009.
Both died from Sudden Unexpected Death in Epilepsy (SUDEP).
The Fatal Accident Inquiry, which commenced in November 2010, was conducted by Sheriff Alistair Duff in Dundee.
Sheriff Duff’s recommendations include;
1. The vast majority of patients with epilepsy, or their parents or carers where appropriate, should be advised of the risk of SUDEP on first diagnosis or if , in the particular circumstances of that patient, there are exceptional circumstances for delaying immediate provision of the information, then within a very short time thereafter. Advice about the risk of SUDEP should only be withheld if there is assessed to be, in the case of a particular patient, a risk of serious harm to the patient in providing the information or the patient has learning difficulties..
2. A decision not to inform a patient or his or her family about SUDEP should be recorded in the patients medical records
3. All NHS Boards should prioritise consideration of their arrangements for the care of epilepsy patients
4. Current arrangements for the provision of written information packs to newly diagnosed epilepsy patients and their families should be reviewed to ensure that they are adequate and meet the needs of patients.
5. Anti-Epileptic medication should be accompanied by clear and easily understood instructions
6. GP practices should consider a system to monitor the uptake of repeat prescriptions.
7. Those responsible for the issuance of guidelines on the care and management of epilepsy patients should consider the adequacy of existing guidelines in light of this inquiry
8. Tayside Police and other forces if appropriate should review their practice of describing the location of a sudden unexpected death as a “crime scene”
Sheriff Duff also highlighted that the inquiry will have ramifications for the training of medical professionals.
..
Erin, Christina and their families were never made aware of the risk of SUDEP.
Christina’s father Markos told the inquiry how they only learned about the term from the internet after their daughter’s death. No-one discussed the risks associated with night time seizures despite Christina having a seizure whilst she was in the initial stages of falling asleep.
Erin was informed that her epilepsy would be ‘a minor nuisance in her life’ only months before she died from the condition. Her father Graham said he only found out about SUDEP when he saw it written on his daughter’s death certificate.
Erin’s parents Janet and Graham Casey have issued the following statement;
“We welcome the outcome of the Fatal Accident Inquiry into the death of Erin with relief. The possibility of Erin being alive today has been established. We trust the Sheriff’s findings will help put an end to the dangerous practice of withholding information in the name of paternalism. People with Epilepsy need doctors, not father figures. We would like to express our gratitude to Sheriff Alistair Duff for listening to and understanding the issues and evidence presented to him during the inquiry.
We would like to dedicate this inquiry to Erin and Christina and to the thousands of people who have died in ignorance of SUDEP and of the precautions they or their families could have taken to reduce their risk of death.
Finally we would like to direct the inquiry to the health boards and doctors alike who have previously considered it appropriate to withhold potentially life saving information and to those who continue to do so. The NHS promotes mutual partnership and care, withholding information does not fit in with that ethos”.
Christina’s parents, Lynne Wheeler and Markos Ilia stated;
“For us the recommendations clarify what we have believed all the way through the process, that we should have been informed about SUDEP and that we were entitled to that information. We were parents of a child suffering from a medical condition who should have been provided with all the information relating that condition. This information was withheld from us for the reason of the ‘possible side effects’ of having that information.
Within the determination, and the specifics which relate to Christina’s case, there are areas for us as her parents which have left unanswered questions pertaining to our case and the information which was presented in court.
No-one wants to be in the situation we are in, being left with never knowing if we had been told about SUDEP and the existence of alarms that can be used by patients whilst sleeping might have alerted us to the event or been able to get emergency treatment for Christina which ultimately would mean she would still be with us- this is not any way for us to live or for anyone to live with. As a parent you want to know that you have done everything possible to protect your child”
Epilepsy Bereaved Director Jane Hanna OBE said;
“We are pleased with Sheriff Duff’s recommendations and his clear direction that ‘the vast majority of patients with epilepsy, or their parents or carers where appropriate, should be advised of the risk of SUDEP’.
The recommendations are in contrast to the practice of Tayside Health Board to provide information about SUDEP only to the parents / carers of newly diagnosed people with the condition. As a result of this discriminatory practice against existing patients with epilepsy, Christina’s parents were not given information about SUDEP.
This report has strengthened the findings of a previous Fatal Accident Inquiry in 2002, which determined that people with epilepsy should be told about SUDEP unless there was a good reason otherwise. We recognise that clinical discretion would apply where there are good reasons why an individual patient should not be informed. However, this did not apply in the case of Erin and Christina.
A review of research spanning 60 years shows that the risk of SUDEP could be significantly reduced. People with epilepsy should be treated like any other patients who are managing a condition on a day to day basis and who need information to make choices such as medication taking and life-style”.
Professor Stephen Brown,
“I welcome this determination. Although the Sheriff’s findings are part of the Scottish legal process, the scope of the inquiry and careful consideration of the evidence has relevance to the whole of the UK and beyond. I hope that these recommendations will be read and taken into account by health commissioners and practitioners involved in epilepsy care throughout the UK.”
Media Coverage
The following links will open up a new window
Channel 4 News 25th August 2011
;
If you have been bereaved by epilepsy and need information and support please contact our bereavement support line on 01235 772 852. support@eb-team.org.uk
If you have epilepsy and are concerned about the risk of SUDEP please visit our information pages on reducing the risk in epilepsy.or contact the following Epilepsy organisations;
Epilepsy Scotland Helpline 0808 800 2200 www.epilepsyscotland.org.uk
Epilepsy Society Helpline 01494 601 400. www.epilepsysociety.org.uk
