Epilepsy Bereaved organised a successful meeting in Parliament earlier this year
The MPs who attended agreed that just talking about epilepsy mortality is not enough and that we must do all that we can to prevent such deaths.
With this in mind the charity has produced a national sudep statement
Our aim is to have politicians and health professionals from across the UK to add their name to the national statement on SUDEP and help us to prevent unnecessary deaths from epilepsy.
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.
- Research is critical and includes the need to properly understand 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
Please note; The next meeting of the All Party Parliamentary Group on Epilepsy will focus on epilepsy mortality. 5th July, 4pm in Room M, Portcullis House. Please ask your MP to attend.
Epilepsy Bereaved National Statement on SUDEP (pdf opens up a new window)
