February 2010
Parliamentary Under-Secretary of State for Health Ann Keen used part of her address at a major event on epilepsy on 23rd February to highlight avoidable deaths from epilepsy and the support needs of the bereaved.
In what she called a ‘startling figure’ Professor Keen spoke of her shock at the 1,000 deaths a year from epilepsy in the UK and that 42% of such deaths were potentially avoidable.
Around 200 people gathered in London at the Best Value Better Care- Commissioning Epilepsy Services event which was organised by the Joint Epilepsy Council, UCB Pharma and the Long Term Conditions Delivery Support Team. The event was over-subscribed; such was the level of interest in it.
Delegates heard a broad range of speakers outline the need to improve service provision for people with epilepsy in England.
-456,000 people in the UK have epilepsy which represents one of the most common neurological conditions.
-69,000 people are living with unnecessary seizures
-Due to misdiagnosis, 74,000 people are taking anti-epileptic drugs they do not need.
The role of Epilepsy Specialist Nurses was highlighted; many Primary Care Trusts (PCT’s) in England do not have an epilepsy specialist nurse, some who do employ an ESN often pressure them to cover general duties rather than leaving them to concentrate on their more specialised role. In a typical PCT the case load for an ESN is 250 but many have double this.
EB Chairman John Lipetz said, “It is reassuring to see a Minister of State recognising SUDEP and the support needs of bereaved families….. Events such as this show how important it is to get Strategic Health Authorities and PCT’s to work together across adult and paediatric services”.
Epilepsy Bereaved Briefing to Commissioners of Epilepsy Services
