A UK Government-funded report into epilepsy
deaths has concluded that 39% of adult deaths
and 59% of deaths in children were potentially
avoidable and that shortcomings in care may
have been a contributing factor.
The National Sentinel Clinical Audit of
Epilepsy-Related Death, launched at the
start of National Epilepsy Week (19-25 May
2002) was managed and co-ordinated by the
voluntary charity Epilepsy
Bereaved with the participation of five
medical royal colleges. It set out to establish
whether there were inadequacies in the standard
of clinical care that contributed to epilepsy
deaths, whether some of these deaths were
avoidable and whether the quality of the investigation
of deaths, and contact with bereaved families,
was adequate. Follow
this link for a full copy of the report.
Professor David Fish, Consultant Neurologist
at the National Hospital, London, one of the
lead authors of the report, outlined the findings
of the report. He stated:
"The report found failures in the provision
of care all through the system. This included
problems of timely access to expert specialists
and a lack of structured and effective review
at primary and secondary care. It concluded
that poor epilepsy management resulted in
a substantial number of potentially avoidable
deaths."
Jane Hanna, Director of Epilepsy Bereaved
and the lay author and co-ordinator of the
report on behalf of the Joint
Epilepsy Council (JEC) said: "This
report is a call for action for the health
service. Five prior Government reports identified
inadequacies in epilepsy services, but they
have all gathered dust on departmental shelves.
"The four UK Chief Medical Officers said
'we will demonstrate that by taking action
now, lives may be saved.' We want to be sure
that this commitment from above, will make
real improvements at healthcare grassroots
if we are going to offer hope to the bereaved
families at the heart of this report."
The overall findings of the report showed
matters of urgent concern including:
Inadequate care in overall epilepsy
management (54% adults and 77% of children)
Inadequate drug management (20% adults
and 45% children)
Lack of appropriate investigations (13%
adults and 32% children)
Little documented evidence that the
hazards of epilepsy (including risk of
death) had been discussed with people
with epilepsy who had died (31% hazards
and 1% risk of seizures could be fatal)
Little documented evidence of GP (7%)
or specialist (10%) contact with a bereaved
family to discuss the death. Two-thirds
of pathologists were not aware of a system
in place to inform relatives about post-mortem
results.
Epilepsy is the most common serious neurological
condition affecting more than 450,000 people
in the UK. Every year official figures report
about 1,000 people die in the UK as a result
of epilepsy. This is more than the combined
figures for cot deaths and AIDS. Studies
have estimated that 500 sudden and unexpected
deaths (SUDEP) occur in otherwise healthy
people and the greatest numbers are among
young people.
The report indicates that epilepsy-related
death, particularly SUDEP, is still underestimated
by healthcare professionals and this, to
quote from the report: "may reflect
the mistaken belief that epilepsy is a benign
condition. The risk of death associated
with epilepsy appeared rarely to have been
discussed with patients or their families."
In order to reduce mortality, therefore,
there is a need to strive towards optimum
seizure control as up to 70% of people with
epilepsy have the potential to be seizure-free.
The report concluded that any future plans
drawn up by the four Chief Medical Officers
for England, Wales, Scotland and Northern
Ireland would need to address:
Inadequate access to appropriate epilepsy
care
Lack of education of healthcare professionals
about the principles of epilepsy management
and the risks of epilepsy-related deaths
Poor communications with patients and
their families and other carers
Deficiencies in post-mortem investigations.
In a statement, the Chief Medical Officer
for England has stated that he intends to
produce an action plan within the next three
months to reduce the level of preventable
deaths from epilepsy, work on which has
already begun.
Epilepsy Research UK, PO Box 3004, LondonW4 4XT
Tel/Fax: (+44) (0) 20 8995 4781 • Registered Charity No. 1100394
Incorporating Epilepsy Research Foundation and Fund for Epilepsy
