Who should take care of children with epilepsy?
One important question in the current debate in the United Kingdom about the care of children with epilepsy is who should take the lead role: the neurologist, the general paediatrician, or the paediatrician who has a special interest in epilepsy? The diagnosis of epilepsy in children is often difficult. About 30% of cases are misdiagnosed. In a similar proportion of cases children receive inappropriate drugs. About 42% of all sudden unexpected deaths among young people with epilepsy are reported to be avoidable. This is attributed to the lack of specialists. Currently the United Kingdom has fewer than 75 child neurologists, all of whom are based in tertiary centres. In 2002 the British Paediatric Neurology Association recommended that neurologists should carry out all paediatric neurology work. This goal remains unachievable at present.
| 42% of all sudden unexpected deaths among young people with epilepsy are reported to be avoidable
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Epilepsy is common in children with special needs. General paediatricians in peripheral districts care for most children with epilepsy, and each paediatrician may be familiar with only a few patients. This is inappropriate. Recent cases of misdiagnosis ( BMJ 2002;324: 495-6
Good care of children with epilepsy begins with a detailed clinical history, taken from a parent or carer who has witnessed the child's seizures, and thorough clinical examination. Supportive measures would include video recordings of the events, expert electroencephalography interpretation, and access to tertiary neuroradiology and paediatric neurology services. The clinicians should have an adequate knowledge of all available epilepsy drugs and be familiar with non-epileptic paroxysmal syndromes. Nursing support and close liaison with the general practitioner and education and social services are necessary.
A paediatrician in each district should take lead responsibility for all children with long standing (more than two years) epilepsy, severe epilepsy, or epilepsy associated with special needs. This paediatrician should coordinate the multidisciplinary professional input for the best educational, social, and behavioural management of these children.
In my district paediatric epilepsy clinics were set up in 1998. A general paediatrician who has responsibility for the child development assessment centre runs them. Two clinics are held each month, one of which is held jointly with a consultant child psychiatrist. The paediatrician also does 12 joint clinic sessions a year with the visiting paediatric neurologist and does a quarterly epilepsy clinic for young adults (aged 16-24 years) with the neurology physician.
We have two part time paediatric epilepsy nurses. One also works as an epilepsy nurse in the tertiary paediatric epilepsy clinic; the other is a learning disabilities nurse with a diploma in epilepsy care. They attend clinics and arrange follow up consultations, either by telephone or a home visit. They visit the children's schools to train staff in epilepsy care and use of emergency drugs. They communicate with social services on behalf of parents and patients.
We liaise extensively with a paediatric neurophysiologist and a neuroradiologist in the tertiary centre. They report all of the electroencephalograms and most of the magnetic resonance images. The paediatric neurologist offers expert opinion in refractory cases and in cases where surgery, vagal stimulation, or a ketogenic diet is required. The published data are used to audit the clinics' procedures, and improvements are regularly made. Surveys have shown a high degree of satisfaction among parents.
Minimum training requirements have been proposed for consultants who are appointed to a formal role. However, existing consultants should also be assessed. If they are found deficient the British Paediatric Neurology Association should arrange further training and subsequent accreditation. All neurologists working in districts have formal work commitments in tertiary centres. A similar model for paediatricians would be ideal and would avoid professional isolation. Periodic audit of services in the districts by the association would be valuable. The Royal College of Paediatrics and Child Health and the Royal College of Nursing could set minimum standards for such a service to ensure that resources are adequate and that nurses across the country participate.