Some of our supporters and MPs at the meeting
Epilepsy Bereaved presented the National Statement on SUDEP to the All Party Parliamentary Group on Epilepsy on July 5th. The Statement was the outcome of a Westminster reception event held earlier in the year and attracting support from some 80 MPs.
The Statement was signed by clinical and research leaders including the President of the International League against Epilepsy (UK branch) and President of ILAE GPs with a specialist Interest Group.
Our aim is to ensure politicians and health professionals from across the UK have access to evidence-based information epilepsy mortality and that a risk reduction strategy supported by research is the most helpful strategy to address mortality at this time.
Statement summary;
- There are over 3 seizure-related deaths in the UK each day, mostly in young otherwise healthy people and accounting for some 70,096 ‘lost years’ between 2006 and 2008.
- Reported deaths from epilepsy have risen at a time when mortality has fallen for other conditions. Yet up to 42% of these deaths are potentially avoidable.
- Epilepsy mortality is amenable because many of the risk factors can be affected by relatively simple intervention e.g GPs being supported to flag up patients at risk and step-up care.
- Research is critical and includes the need to properly understand the factors explaining the increase in reporting of deaths in people with epilepsy and monitor the national statistics on epilepsy deaths.
- Families affected by sudden unexpected death in epilepsy should be offered access to specialist bereavement services.
If you have not contacted you MP, Assembly Member or Member of the Scottish Parliament and would like to do so, please contact Fiona McDonald 01554 778450 / 0798 558 7554 fiona@eb-team.org.uk
Epilepsy Bereaved National Statement on SUDEP (pdf opens up a new window)
