Recent research has found that that the number of children being treated with epilepsy has fallen dramatically in the last decade.
Published in the Archives of Disease in Childhood, the research suggests that the estimated annual rate of incidence for epilepsy among children dropped between four and nine per cent, during 2001-2008.
Diagnosing epilepsy accurately can be difficult, since a number of medical conditions can cause symptoms that are similar to the condition, leading to high rates of misdiagnosis.
The researchers believe that NICE's guideline on epilepsies, originally published in 2004 and containing recommendations on diagnosis, has helped reduce the number of children recorded in primary care falsely diagnosed with the condition.
Study author Wilhelmine Meerhaus, from University College London, says: “The results of this study are encouraging, as they show that correct and accurate diagnoses are contributing to a drop in the number of reported cases.
"NICE guidance has most certainly contributed to the change in thinking, and the move towards a more rigorous approach to diagnosis.
Continuing rates of misdiagnosis
Yet while trends from the research suggest improvement, many argue that more can be done to improve the treatment of the condition, especially as rates of misdiagnosis remain high.
Around 40 per cent of children without epilepsy are still being referred to tertiary epilepsy clinics.Furthermore, between five and 30 per cent of adults and children with epilepsy, a figure that could include up to 124,500 people, have been diagnosed with epilepsy though they do not have it.
It is important that a child with epilepsy receives a correct diagnosis, and in good time, as this can help them access appropriate medication and specialist services to help meet their diverse needs.
But it is equally important that misdiagnosis is avoided, as this can have wide-ranging effects on a child, such as providing unnecessary medication or services that could restrict their lifestyles.
'Unacceptable' variation in standards of care
Charities also argue that the quality of services provided for both adults and children with epilepsy in the UK needs to be addressed, with a new report from Epilepsy Action highlighting inconsistencies in care.
The report found that more than a third of both children and adults with epilepsy were not offered an epilepsy review in the last 12 months, only half of people with epilepsy reported seeing a specialist nurse, and nearly three-quarters still having seizures had never been referred to a specialist tertiary epilepsy centre.
Simon Wigglesworth, Deputy Chief Executive at Epilepsy Action, says: "The report shows that epilepsy services are unequal and in some places are nowhere near the standards set out in NICE clinical guidelines.
"We know that good epilepsy services do exist, but it's clear from our report that there is a vast variation in services across the country."
He continues: “This isn't good enough and means that the 495,000 people with epilepsy in England are not receiving a consistently good standard of care."
Quality standards can help improve diagnosis and treatment
This month, NICE has produced quality standards on epilepsies in children and young people, and adults, and a guide for commissioners.
The new products provide greater help for healthcare professionals to make timely and accurate diagnoses, and ensure they are providing the best standard of care.
Professor Gillian Leng, Deputy Chief Executive and Director of Health and Social Care at NICE, says: "The nature of epilepsy means that it can be difficult to diagnose accurately. Therefore, a key part of these new quality standards is focused on improving this, and ensuring that diagnosis and treatment are confirmed and reviewed as necessary.
“I am sure these quality standards will be useful aids to all those involved in the care and treatment of this serious neurological condition."
The quality standard for children and young people contains nine statements, such as that children and young people with a suspected seizure are seen by a specialist in the diagnosis and management of the epilepsies within 2 weeks of presentation.
NICE says the rationale for this statement is to tackle the high rates of misdiagnosis. It adds that it is crucial that for specialists to be involved early in diagnosing epilepsy, and to take great care in establishing the correct diagnosis.
A further statement specifies that children and young people with epilepsy should have an agreed and comprehensive written care plan.
A care plan is an important tool in ensuring that all aspects of a person's life that could be affected by their epilepsy syndrome, and the treatment they are receiving, are considered and addressed.
The standard includes a statement that children and young people with epilepsy are seen by an epilepsy specialist nurse who they can contact between specialist reviews.
The rationale for this is evidence that epilepsy specialist nurses improve clinically important outcomes such as knowledge, anxiety and depression for people with epilepsy in secondary and tertiary care.
An additional statement covers the number of children and young people who meet the criteria for referral to a tertiary care specialist who are seen within 4 weeks of referral.
NICE says that timely and appropriate access to tertiary services remains variable across the country, and that they are vital in tackling diagnostic uncertainty.
For example, they can offer specialised advice on drugs, surgery, and epilepsy combined with other complicated medical conditions or psychological problems.
Mr Wigglesworth comments that Epilepsy Action is "really pleased that quality standards for epilepsy have been produced".
"If the new standards are implemented consistently and effectively, care for people with epilepsy will be vastly improved," he adds.
The new quality standard for epilepsies in adults also includes nine statements, such as that patients with epilepsy are seen by a specialist nurse who they can contact between scheduled reviews, and that those having initial investigations for epilepsy undergo the tests within 4 weeks of them being requested.
The guide for commissioners, also published this month, gives help and advice on the commissioning of services for the diagnosis and management of the epilepsies in adults, children and young people.