Only one in four people with uncontrolled epilepsy sees a specialistBMJ 2013; 346 doi: http://dx.doi.org/10.1136/bmj.f559 (Published 25 January 2013) Cite this as: BMJ 2013;346:f559
Only a quarter of people in England with epilepsy and ongoing seizures are referred to an epilepsy specialist, a survey of nearly 1000 patients has found.1
In addition, less than a 10th (7%) of people who presented with a first seizure were referred to a specialist within two weeks, and just one in seven (14%) had a written care plan. This level of care falls short of draft quality standards for epilepsy from the National Institute for Health and Clinical Excellence, which recommend that all children and adults be seen by a specialist within two weeks of the first seizure, be given a written care plan, and be referred to a tertiary care specialist if seizures remain uncontrolled.2 3
The report, by the campaigning organisation Epilepsy Action and sponsored by the biopharmaceutical company UCB Pharma, surveyed 947 people in England with epilepsy and 158 clinical commissioning groups on epilepsy services.
Four fifths (79%) of the CCGs did not have written needs assessments for the health and social care needs of people with neurological conditions, and a half (53%) said that they did not intend to create one. Two thirds of CCGs did not intend to produce a needs assessment for people with epilepsy.
The Conservative MP Laura Sandys, who chairs the parliamentary all party group on epilepsy and who is vice president of Epilepsy Action, said, “This report reveals some extremely concerning gaps in provision that must be addressed. Epilepsy has been a Cinderella condition for too long, and we must use this report to get the change we need.” She was speaking at the report’s launch on 22 January at the House of Commons.
Simon Wigglesworth, deputy chief executive at Epilepsy Action, added, “Our concern is that some of the CCGs we surveyed don’t even intend to look at epilepsy, and without change these variations are set to continue. Our surveys were conducted early in the group’s existence, but now is the time for CCGs to act and recognise the needs of people with epilepsy.”
Epilepsy Action has called on CCGs and acute care NHS trusts to commission and provide services in line with forthcoming final NICE quality standards on managing epilepsy, expected by March. The charity has also recommended that the NHS Commissioning Board adequately plans tertiary epilepsy services. Its survey found that 77 patients had been referred to tertiary centres, 39 of whom reported that their seizures had improved.
Matthew Walker, professor of epilepsy at University College London, welcomed the report. He said, “People with epilepsy find themselves disadvantaged in so many aspects of life, and it is a travesty that there should be so many failings in a health service that does not seem to care. It is about time that the health service started addressing the needs of people with epilepsy, the majority of whom, according to this report, seem to receive a second rate service.”
An audit commissioned last year by the Royal College of Paediatrics and Child Health found that a fifth of UK children with epilepsy didn’t see a paediatrician with specialist training in childhood epilepsy, despite this being recommended by NICE guidelines.4
Cite this as: BMJ 2013;346:f559