Minister praises Epilepsy Bereaved during mortality debate
Paul Burstow MP, Minister of State for Care Services attended the debate. He paid tribute to the work of Epilepsy Bereaved and has agreed to meet with the charity to discuss the prevention of epilepsy deaths. The Minister said: “I particularly want to acknowledge the work of Epilepsy Bereaved, which since its foundation in 1995 has led cutting-edge work to establish major risk factors and ways to reduce risks and prevent deaths.
The charity provides very well-regarded bereavement support, which helps to break the isolation that people experience following SUDEP, or other seizure-related deaths. I acknowledge the organisation’s concerns that failings in care and the commissioning of services have led to many avoidable deaths from SUDEP”.
- There are over 1,000 epilepsy-related deaths each year in the UK. Research suggests that most of these are sudden and unexpected (SUDEP).
- 400 of 1000 deaths are year could potentially be avoided.
- Reported deaths in people with epilepsy have risen by 31% at a time when mortality from all other causes has fallen (16%)
- Epilepsy is in the top ten causes of deaths amenable to intervention for both men and women (calculated on the basis of lost years per 100,000 population)
- A recent Fatal Accident Inquiry into the deaths of two Scottish teenagers concluded that ‘the vast majority of patients with epilepsy, or their parents or carers where appropriate, should be advised of the risk of SUDEP’
- 14 deaths in pregnant women with epilepsy were investigated by the Confidential Enquiry of Maternal Deaths 2011.
- A register of deaths or other means of monitoring deaths is urgently needed.
- Bereaved families need access to support
Epilepsy Bereaved is the only organization in the UK, dedicated to the prevention of epilepsy mortality and supports people bereaved by such deaths.
Director Jane Hanna OBE was awarded an OBE in 2010 for her services to bereaved families said: “The challenge to prevent epilepsy-related deaths is a big one. We are grateful to Stephen for using this debate to highlight epilepsy mortality. A review of research spanning 60 years shows that the risk of Sudden Unexpected Death in Epilepsy (SUDEP) could be significantly reduced. Epilepsy mortality should be a priority area of amenable mortality and explicitly included in the NHS Outcomes Framework.
Around 42% of epilepsy deaths could potentially be avoided through better management of the condition. We need a cultural change in how we view epilepsy, services improved to make them safe, communication of risk with people with epilepsy and carers, and after care for families affected by sudden unexpected death in epilepsy.
Epilepsy Bereaved welcomes the mortality debate in parliament and the recognition by the Minister of the leadership of Epilepsy Bereaved in research, prevention and support for the bereaved. We look forward to meeting the Minister in due course.”.