Best Value, Better Care - Commissioning Epilepsy Services
This meeting was attended by the co-ordinator of Cavernoma Alliance UK on Tuesday 23rd February 2010 in London, and was chaired by Earl Howe of the All Party Parliamentary Group on Epilepsy.
Epilepsy, of which cavernoma is a cause, is a condition which claims the lives of 3 people in the UK every day. Potentially, with medication and correct diagnosis, 42% of deaths from epilepsy are avoidable.
The first speaker was Professor Ann Keen, Parliamentary Under Secretary of State for Health. Professor Keen has stated that "...a number of reports in recent years have covered epilepsy services.....They all highlighted the fact that services continue to fall far short of the standards that people with epilepsy have a right to expect - and I agree that services are still not good enough." This was the tone of her whole speech, that misdiagnosis of epilepsy costs more to the NHS than the initial cost of employing specialist nurses and consultants.
This introductory talk by the Minister was followed by Karen Deacon, Chair of the Joint Epilepsy Council. Karen Deacon's slides were powerful in that they demonstrated the harsh realities of those living with epilepsy. There are 456,000 people with epilepsy, 1 in 242 children and young people under 18, 29% of people with epilepsy are women of childbearing age and it is 25% more prevalent in most socially deprived areas.
Helen Doyle gave a passionate speech about her daughter, Katy, who died of Sudden Unexpected Death in Epilepsy (SUDEP) at the age of 24 in December 2008. Helen had been told, after a meeting with the consultant, to "go away and live your life". After a third seizure, the consultant made no change to her medication. And after a fourth seizure she was found dead in bed from SUDEP (see the link on our website). Helen and her son, Stewart, are set to walk the Great Wall of China in Katy's memory. Contribution details can be found at www.justgiving.com/helen-doyle0
Other speakers of the conference included John Duncan, Medical Director, National Society of Epilepsy and Professor at the National Hospital for Neurology and Neurosurgery, home of Mr Neil Kitchen, consultant neurosurgeon and senior medical advisor, Cavernoma Alliance UK. Professor Duncan confirmed the need for correct diagnosis and emphasised the importance of specialist epilepsy nurses.