A catalogue of failures in the care and treatment of people with
epilepsy in England 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).
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 in England people are living with
unnecessary seizures, while 74,000 people are taking drugs they do not
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-epilepstic drugs for which
they have no need demands recognition as a national scandal.
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.
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.
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.
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.