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Report reveals postcode lottery of care for children with epilepsy

Children who suffer from epilepsy face a “profoundly concerning” variability in the quality of care they receive, depending on where they live, according to a new report published today.

Epilepsy, which can have a devastating impact on educational attainment and badly disrupt the lives of sufferers, is the most common serious neurological condition diagnosed in the UK affecting one in 200 children or around 60,000 youngsters.

Charities called for urgent action after the first national audit of epilepsy services for young people found that barely half of families are offered the support of a qualified epilepsy nurse within a year of their child being diagnosed. The role is seen as vital in monitoring medication, advising schools that can be overly restrictive of children with the condition, and providing support to parents.

England offered the worst level of specialist nursing support, according to the survey of children’s NHS services conducted by the Royal College of Paediatrics and Child Health. Only 47 per cent of units offered the service – compared with 77 per cent in Wales, 73 per cent in Scotland and 100 per cent in Northern Ireland.

Half of children diagnosed with epilepsy do not achieve their full educational potential, said the report’s author, consultant paediatrician Dr Colin Dunkley.

“We’ve seen marked steps forward in epilepsy care for children in recent years. The majority of children are now being seen by paediatricians with expertise and many are getting detailed diagnoses and being prescribed the most appropriate medicines first time. But there are certain areas that need to be improved if we’re to give children and young peopl e the best possible medical treatment and ongoing care.”

The report also found that a third of children were not adequately assessed at first, while more than seven out of 10 did not receive an MRI scan necessary to detect underlying causes of the condition.

Nearly half of those suffering from the more serious types of epilepsy did not see a paediatric neurologist when required, it was found.

Epilepsy is often very hard to diagnose with GPs and hospital emergency departments often lacking experience in recognising symptoms which can often be mistaken for fainting or other conditions

Dr Peter Carter, chief executive of the Royal College of Nursing said advances in care had transformed the lives of children. “However, it is a matter of profound concern to us that this is not the case everywhere,” he said.

David Ford, chief executive of the charity Young Epilepsy, added: “More must be done, and quickly, if we are ever to make meaningful improvements to these young lives. The support received by young people with epilepsy just simply is not good enough. The effects of the condition can be devastating and should not be underestimated.”

Case study: ‘Suddenly she was having 20 fits a day’

There was nothing spectacular about my daughter’s first fit. In fact it took several weeks before we realised she was having them at all.

“There was no falling to the floor, frothing at the mouth or flailing of limbs, rather a brief rolling of the eyes and a vacant look. It was all over in a matter of seconds. We were on holiday in Norfolk when we eventually clocked that this was beyond normal weird five-year-old behaviour. From occasionally zoning out, suddenly she was having 20 in a single day. It was absolutely terrifying and we rushed her to hospital where she was diagnosed with childhood absence seizure.

“Because Lucy has speech and language delay she already had a paediatrician in York who we were able to phone the next morning. She arranged an EEG test for three weeks time in which electrical receptors are attached to the head to monitor the pattern of brain waves during an induced fit.

“The results came through a week later and we are now two weeks into a course of medication which should put an end to her fits. We have had excellent, prompt care. Our paediatrician offered us the services of a specialist epilepsy nurse and we are due to have an MRI scan. Having read the report I now realise we are among the lucky ones.