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Leicester childhood epilepsy report issued

4 Feb 2003

The report into the treatment and misdiagnosis of children with epilepsy in Leicestershire has been issued, with the consultant involved being retrained in another specialty outside the county.

The report, into the work of consultant paediatrician Dr Andrew Holton, said that following the re-assessment of the cases of the 1,948 children involved, 618 of these (31.8 per cent) have had their diagnosis of epilepsy changed or re-categorised. Of these, 224 were incorrectly diagnosed with epilepsy and the remaining children have had the type of epilepsy they were diagnosed with changed.

Medical Director of the University Hospitals of Leicester NHS Trust, Dr Allan Cole, said:

"Although Dr Holton was not trained as a Paediatric Neurologist, he did have a lot of experience in dealing with paediatric epilepsy. A review of his practice by experts would be expected to reveal some discrepancies in diagnosis. How large those discrepancies might be is unknown because such a review has not been undertaken before. There is however, some evidence to show that the misdiagnosis rate of 31.8 per cent, in a consultant paediatrician with an interest in neurology, may not be unusual.”

The trust's Chief Executive, Peter Reading, has confirmed that Dr Holton would not be returning to work in Leicester, but would be re-training in another non-pediatric specialty, outside Leicestershire.

For Epilepsy Action, Chief Executive Philip Lee said:

"This review fully justifies the families' concerns about epilepsy services in Leicester. A misdiagnosis rate of 31.8 per cent is totally unacceptable but, sadly, it is not unusual. The problems faced by these families are symptomatic of a much wider problem. There are only 62 paediatric neurologists in the UK but over 62,000 children with epilepsy. Frankly, it just isn't good enough. There are a few excellent paediatric epilepsy clinics, but too many of our children are being let down, not just in Leicester, but all over the UK."

He added:

"I hope that the outcomes of this report and the distress of these families is taken seriously by the health service and the government. They still have an opportunity to address the poor level of epilepsy services in the upcoming Action Plan for epilepsy. I sincerely hope that this is the last generation of children whose childhoods are being lost to inadequate and
incorrect treatment."