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UK government's action plan for epilepsy needs great commitment
In a widely acclaimed BBC production, The Lost Prince, the short and
tragic life of Prince John, son of Britain's King George V and Queen
Mary, and his sudden death in the early 20th century emerged from the
shadows in which he had been hidden.1 He was
hidden because of his epilepsy and learning disorder, and by the
medical and social ignorance of his royal parents and advisers.
Prince John has shared this fate with millions of others of all
social classes and cultures before and since. In the 1920s, a few
years after the death of Prince John in a seizure, the young Graham
Greene received a diagnosis of epilepsy from a well known neurologist
from Harley Street.2 Initially his embarrassed
parents concealed the diagnosis from him. When Greene learned
of it he also concealed it for nearly 50 years until in his autobiography
he eloquently described the impact of the diagnosis, which had
led him to contemplate suicide. His greatest concerns were inheritance
and marriage. These two lives from the past highlight two continuing
anxieties for people with epilepsy and their families
stigma
and sudden unexplained death.
Epilepsy is a very common disorder, as old as any medical condition and almost uniformly distributed around the world. It affects all ages, races, and social classes, including royalty and government ministers. Throughout history its strange, obscure, intermittent, and dramatic nature has elicited fear, misunderstanding, and stigma. Recent studies show that little progress has been made in public attitudes, especially in developing countries where stigma contributes to the neglect of up to three quarters of patients who receive no diagnosis or modern treatment.3-5 Even in developed countries anxiety and fear remain the commonest emotion in patients and families.6 Fear of a seizure, injury, death, and embarrassment; of loss of employment, educational opportunities, or a driving licence; or of limited marital prospects and social horizons. Many perceive negative public attitudes as a greater burden than seizures.
So common are these problems that in 1997 the International League against Epilepsy, the International Bureau for Epilepsy, and the World Health Organization launched a global campaign to bring epilepsy "Out of the Shadows"; to encourage governments and departments of health to address the needs of people with epilepsy through improved diagnosis, treatment, services, and prevention; and to promote greater public education and acceptance. 5 7 Following regional public health conferences and declarations on epilepsy, including the European Declaration at the European Parliament in 2001, WHO raised the status of this campaign to the highest level and launched the second phase in Geneva in February 2001.7 The campaign now includes demonstration projects in Argentina, China, Senegal, and Zimbabwe, which will serve as models for other countries.
Already over 50 countries are participating in this campaign, but what is
happening in the United Kingdom? Hopes were considerably raised by
the chief medical officer in his annual report in December 2001.8
Under the title "Death in the Shadows," Sir Liam Donaldson
acknowledged that epilepsy had remained in the shadows for too long,
that despite five major government reports since 1953 advice had not
been implemented and services remained poor and patchy. He
highlighted in particular the deaths of approximately 1000 young
people in the United Kingdom every year. About half of these are
sudden and unexpected, especially in young male patients, like Prince
John. Risk factors include poorly controlled convulsions, multiple
changes of drug treatment, and poor compliancedeath
occurring unwitnessed often at night for obscure respiratory or
cardiac reasons. 9 10
The chief medical officer urged a genuine commitment and breakthrough
to raise standards of care, and he indicated that within three months
of the completion of the national clinical audit of epilepsy related
death an action plan should be in place to reduce the number of
preventable deaths.
The National Institute for Clinical Excellence and the government published
the audit on 21 May 2002 during epilepsy week. 10
11 They found that of the 1000 young deaths each
year 42% are potentially preventable. Management of the epilepsy was
poor in a fifth of the adults and almost half the children. A third
had never seen an appropriate specialist. Nearly nine months after
this report was welcomed by the government the action plananticipated
by the chief medical officer within three monthshas
still not materialised. The epilepsy community is fearful, and the
signs are ominous that when it does appear there will be no
breakthrough and it will go the way of the five previous government
reportsthat is, provide
encouragement, advice, recommendations, and no extra resources.12
The government should at the very least provide the resources
to target, monitor, and reduce the number of preventable deaths.
Perhaps the shocking story of Prince John will help to change attitudes. His
is the latest name to be added to the list of deceased icons of the
epilepsy movement, which include Julius Caesar, Fyodor Dostoyevsky,
and Vincent Van Gogh. Graham Greene perhaps represents those 20% of
people with epilepsy who, when eventually referred to one of the few
existing tertiary specialist centres, are found not to have the
disorder. But where are the living celebrities with epilepsy, who are
inhibited by public ignorance and social penalties from coming out of
the shadows?
Edward Reynolds
Institute of Epileptology, King's College, Denmark Hill Campus, London SE5
9PJ (reynolds@buckles.u-net.com)
Footnotes
Competing interests: EHR was the president of the ILAE and chairman of the global campaign against epilepsy.
| 1. | McClure I. The lost prince. BMJ 2003; 326: 229 |
| 2. | Reynolds EH. The impact of epilepsy on Graham Greene. Epilepsia 2001; 42: 1091-1093[CrossRef][ISI][Medline]. |
| 3. | Aziz H, Akhtar SW, Hasan KZ. Epilepsy in Pakistan: stigma and psychosocial problems. A population-based epidemiological study. Epilepsia 1997; 38: 1069-1073[ISI][Medline]. |
| 4. | Fong CG, Hung A. Public awareness, attitude and understanding of epilepsy in Hong Kong Special Administrative Region, China. Epilepsia 2002; 43: 311-316[CrossRef][ISI][Medline] |
| 5. | Reynolds EH. ILAE/IBE/WHO global campaign "out of the shadows": global and regional developments. Epilepsia 2001; 42: 1094-1100[CrossRef][ISI][Medline]. |
| 6. | Fisher RS. Epilepsy from the patient's perspective: review of results of a community based survey. Epilepsy Behav 2000; 1: s9-s14. |
| 7. | Reynolds EH. Epilepsy in the world: Launch of the second phase of the ILAE/IBE/WHO global campaign against epilepsy. Epilepsia 2002; 43: s6. |
| 8. | Donaldson L. Epilepsydeath
in the shadows. In: Chief Medical Officer, Department of Health., ed.
Annual Report 2001. London: DoH, 2001.
|
| 9. | Langan Y. Sudden expected death in epilepsy (SUDEP): risk factors and case control studies. Seizure 2000; 9: 179-183[CrossRef][ISI][Medline]. |
| 10. | Pedley TA, Hauser WA. Sudden death in epilepsy: A wake up call for management. Lancet 2002; 359: 1790-1791[CrossRef][ISI][Medline]. |
| 11. | Pedley TA, Hauser WA. Sudden death in epilepsy: a wake-up call for management. Lancet; published online 21 May 2002. http://image.thelancet.com/extras/02cmt85web.pdf |
| 12. | Epilepsyla
belle indifférence? Lancet 1987; 1: 422-424[Medline].
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