1. Avoidable Epilepsy Related Deaths Fiona McDonald Communications Manager

2. Identifying the problem The untold story Prevention of deaths

3. SUDEP occurs in people with active epilepsy including those reporting only one seizure in the previous year The excess death rate in epilepsy is 10 times that found in asthma SUDEP– Sudden Unexpected Death in Epilepsy is a syndrome where a person with epilepsy dies suddenly and no other cause of death is revealed Adults with epilepsy have a sudden death rate 24 times higher than the background population

4. 3 people die from epilepsy each day in the UK At least 1 death could have been avoided

5. SUDEP- An Untold Story SUDEP; Cause of Death 55% 42% of people were found in bed 25% no prior event noted 13% sign of seizure during night 64.9% had a previous diagnosis of epilepsy 37% of the deaths occurred between 1-10 years of diagnosis 5 deaths took place within the first year

6. Progress has been made with the development of NICE Guidelines on the Epilepsies (2004) and epilepsy is now included in the GP Contract. SUDEP FACTS The most significant risk factor for SUDEP is the occurrence of seizures involving a lack of consciousness. The better seizures are controlled, the more the risk is minimised.

7. The number of reported deaths from epilepsy rose from; 1071 in 2007 1105 in 2008 BUT….

8. Prevention of deaths Post death access for the bereaved to specialist information and support A care plan and case management for people with epilepsy who are not known to be seizure-free Communication of risk and ways to reduce risk A national standard of investigation into epilepsy deaths and monitoring of deaths

9. Improving standards- Case management 42% OF DEATHS WERE POTENTIALLY AVOIDABLE. A lack of management plans and poor record keeping. 41% with no record of monitoring in two years before death. A lack of re-referral. Significant problems of access to and quality of care. Epilepsy management frequently did not meet national criteria. There were deficiencies in communication between clinical staff and with patients and families both in life and after death. In 99% of deaths there was no recorded discussion of risk. The NICE National Sentinel Audit of Epilepsy Related Death 2002

10. Communication of Risk Nice guidelines- seizure freedom 99% of deaths- no recorded discussion of risk. Divergence of opinion and practice

11. Discussing SUDEP with patients Consultant neurologists* Specialist nurses* With all4.7%6% With majority25.6%50% With very few61.2%37% With none7.5%3% (learning disability) * Morton, Richardson, Duncan, J Neurol Neurosurgery Psychiatry 2006; 77; 199-202 *Lewis, Higgins, Goodwin, British Journal of Neuoscience Nursing Jan 2008 Vol 4 No 1, 30

12. ESNA Study 71% mentioned SUDEP when discussing general risks 49% reported some anxiety 62% reported improved adherence to treatment 59% reported avoidance of risk factors None felt that the patient should not be told Informing patients about sudden death in epilepsy: A survey of specialist nurses British Journal of Neuroscience Nursing January 2008 Vol 4 No 1

13. Overview on SUDEP prevention work to date The causal mechanisms are not fully understood The case for prevention has focused on identification of risk factors that are amenable to intervention. The literature supports seizures as the main risk factor NICE Guidelines in 2004 support good practice in seizure management and include communication of risk of SUDEP with patients and carers

14. What do people with epilepsy want? ‘The majority of parents wanted to know about SUDEP and its associated risks. Whenever possible, SUDEP information should be given by the physician accompanied by an information leaflet’. Parental and physician beliefs regarding the provision and content of written sudden unexpected death in epilepsy (SUDEP) information Epilepsia 1-6, 2010

15. Research NICE Guidelines and the Scottish Public Health Ombudsman recommend further research on communication of risk of SUDEP. EB Research Initiative Political agenda

16. A National Standard for Investigation High level of post-mortem investigation into epilepsy- related deaths 13% of epilepsy-related deaths were adequately investigated and reported. Coroners Act 2009 No national monitoring of epilepsy deaths Other investigatory bodies continue to highlight the issues identified in the NICE Audit in 2002: Increased profile to avoidable deaths in the future.

17. Post-Death Service for the Bereaved ‘Where families and/or carers have been affected by SUDEP, healthcare professionals should contact families and/or carers to offer their condolences, invite them to discuss the death, and offer referral to bereavement counselling and a SUDEP support group’.

18. Preventing avoidable deaths LIVES ARE BEING LOST NEEDLESSLY MONEY IS BEING WASTED. Implementation of these areas would be cost-effective requiring resources dedicated to coordination, training and information. Ensure that appropriate and timely information is provided to people with epilepsy about the risks associated with the condition. Identify training needs for those who are responsible for people with epilepsy and their carers. Ensure that people who have been bereaved through epilepsy are signposted to a support service immediately following the death where they can access specialised information.