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					                                                                 IMMEDIATE RELEASE
                                                                         26 June 2007

                  CALL FOR ACTION ON EPILEPSY SCANDAL
A catalogue of failures in the care and treatment of people with epilepsy has resulted in
around 400 avoidable deaths a year, and £189 million in wasted funds, according to a
report by the All Party Parliamentary Group (APPG) on Epilepsy published tomorrow
(June 27).


Wasted money, wasted lives, a hard-hitting report into the human and economic costs of
epilepsy in England, condemns continued government failure to meet the needs of people
living with the condition.


The report, supported by the Joint Epilepsy Council of the UK and Ireland (JEC), says
that people with epilepsy are being left behind by society and by a system that has
consistently failed them. Despite the development of effective treatments in recent
years, 69,000 people are living with unnecessary seizures, while 74,000 people are taking
drugs they do not need.


Baroness Gould of Potternewton, chair of the APPG, said: “The regularity of avoidable
deaths at nearly 400 each year is shocking. In addition, the numbers of people who
experience seizures unnecessarily and the numbers taking anti-epilepsy drugs for which
they have no need demands recognition as a national scandal.


“The waste of money in delivering inadequate service is almost as appalling as the
unnecessary deaths and damage to quality of life experienced by people with epilepsy”.


The APPG gathered evidence to provide a realistic picture of epilepsy services, which
also highlights issues caused by poor service provision. The written and oral evidence
received from patients and their families highlighted the challenges of life with the
condition and, in some cases, death.
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Karen Deacon, chair of the JEC, said: “During the course of our inquiry it has become
clear that even in this world of competing health interests the case for improving epilepsy
services is overwhelming.


“Government guidelines for major changes to the treatment of epilepsy do exist, but
without targets or powers, these are no more than wish-lists and of little use to patients
facing critical service failures.”


The APPG is calling on the government to accept responsibility for the shortfall in
services and to ensure that health care providers implement guidelines. It also urges the
government to address workforce shortages by increasing the numbers of doctors and
nurses with a special interest in epilepsy as a matter of urgency.


The APPG invites the Health Select Committee to drive progress by examining the
provision of health services for people with epilepsy in England and look to the
government to formally account for decades of under investment in this neglected
condition.


To read the report in full, please visit www.jointepilepsycouncil.org.uk/inquiry.asp .
This link goes live at 9am on Wednesday 27 June 2007, prior to the official launch of the
report in the House of Commons.


                                         ENDS
For further information and to access case studies, health professionals and voluntary
sector spokespeople who gave evidence as part of the inquiry, please contact Alison
Knight / Keeley Eastwood on 0113 2108870 / 0772 555 4985, email
press@epilepsy.org.uk / Sally Gomersall on 01636 682 888 / 0797 162 1866, email
sally.gomersall@ntlworld.com .


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NOTES TO EDITORS
  o The APPG received evidence from service users, clinicians and voluntary sector
     representatives on the state of epilepsy services in England. The Parliamentarians
     who received oral evidence in a series of witness sessions held earlier this year
     were Baroness Gould (Chair), Christine McCafferty MP, Nick Hurd MP and Evan
     Harris MP.
  o Statistics on epilepsy:
         -   Epilepsy is the most common serious neurological disease, affecting
             382,000 people in England, or one in every 131 people. An estimated five
             million people in England are affected by the social implications of epilepsy.
         -   Currently only around 50 per cent of people with epilepsy are seizure
             free. With the right treatment and care, this figure would rise to seventy
             per cent. In England this would mean that an additional 69,000 people
             could be seizure free (2 out of 5 people).
         -   Misdiagnosis rates currently stand between 20 – 31 per cent. Using a rate
             of 23 per cent this equates to as many as 74,000 people in England with a
             diagnosis of epilepsy and receiving medication who do not have the
             condition. Others have epilepsy but may go undiagnosed for years and
             may be treated for another condition.
         -   The cost of misdiagnosis in England is estimated to be around £134 million
             per annum (with a further £55 million per year possible savings from
             reduced payments of the Disability Living Allowance).
         -   Nine hundred and ninety people every year die of epilepsy related causes
             in England. Around 400 of the deaths per year are considered avoidable.
  o The Joint Epilepsy Council of the UK and Ireland (JEC) provides the secretariat to
     the APPG on epilepsy. JEC is an umbrella organisation of 21 epilepsy
     organisations, providing a representative voice for the benefit of people affected
     by epilepsy in the UK and Republic of Ireland.
  o More information on JEC can be found at http://www.jointepilepsycouncil.org.uk/

				
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