In 1995 Epilepsy Bereaved – now SUDEP Action – first received charitable status. The same year, an All-Party Parliamentary Group for epilepsy was formed by Leeds MP John Battle.
Jane Hanna was invited to make a joint presentation with Dr Stephen Brown on sudden death and epilepsy to MPs on November 29, 1995. Families associated with Epilepsy Bereaved were encouraged to write to their own MPs, citing their own personal stories and the appalling neglect surrounding the issue of epilepsy deaths. These same families also called upon their local MPs to support the All-Parliamentary Group, urging them to attend the November 29 meeting.
The outcome was that the All-Party Group arranged for a delegation from Epilepsy Bereaved to meet with a Minister before Christmas and for an Early Day Motion to go before Parliament. The motion was tabled on November 30 by John Battle, Sir Anthony Durrent, Mr Paddy Tipping and Mr William O’Brien and read:
That this house expresses its concern that up to 400 people may die in the United Kingdom each year from the phenomenon of sudden unexplained death in epilepsy and that research is being hampered in part by a failure of coroners and pathologists to accurately record causes of death of people with a history of epilepsy; calls upon the Government to make available resources for epilepsy research; and congratulates the voluntary organisation Epilepsy Bereaved on receiving charitable status and for its sterling work on behalf of families who suffer a bereavement due to sudden unexplained death in epilepsy.
The Early Day Motion was signed by 135 MPs.
This was huge progress, considering that in March 1995, John Bowis MP, Parliamentary Under-Secretary for Health, said: “I am not aware of any current research’, in response to a previously tabled question relating to research into epilepsy deaths.
By May 1995, Dr Reynolds, President of the International League Against Epilepsy, said: “With approximately 420,000 people diagnosed with epilepsy, it is the most common serious neurological condition. It is also the most neglected brain disorder in the world.”
