NICE won't ask GPs to make a referral

NICE won't ask GPs to make a referral

Everyone accepts that seeing a specialist is crucial for people with epileptic seizures – but NICE won’t ask GPs to make a referral.

Epilepsy Society (formerly The National Society for Epilepsy or 'NSE') is appalled that the National Institute for Health and Clinical Excellence (NICE) has not supported a move that could radically improve the health of people with epilepsy and save the NHS millions.

Graham Faulkner, the charity’s chief executive, is critical of NICE’s announcement that it will not be encouraging GPs to refer epilepsy patients to specialist ‘tertiary care’ centres through the Quality Outcomes Framework (QOF) scheme if their seizures cannot be controlled by local neurologists.

He said: “This contradicts NICE’s own clinical guidelines which emphasise throughout the importance of a referral to a specialist when people are struggling.
It also comes just weeks after the coalition government has announced it wants to put outcomes for people with health problems at the heart of the new NHS.

“Lack of specialist treatment of uncontrolled epileptic seizures comes at a great cost to people with epilepsy, who can sometimes go for decades without the appropriate treatment, with risk of death from seizures. It also comes at a great cost to the NHS in terms of ineffective treatment - the wrong drugs or wrong dose of drugs - extra GP and outpatient appointments, and more A&E visits, which often lead to inpatient care.”

A report by the All Party Parliamentary Group (APPG) for Epilepsy in 2006 said there were 69,000 people in England living with unnecessary seizures. The report made a specific recommendation to improve outcomes for people with epilepsy and save unnecessary NHS costs.

Not all neurologists are epilepsy specialists. There are very few specialist epilepsy consultants in England – it is estimated that there are only 30 or so. Many of these are based in tertiary care centres like the Epilepsy Society's Chalfont Centre in Bucks. The rest are sprinkled thinly across NHS hospitals. It is highly unlikely that most people visiting a neurologist at their local hospital are seeing someone who specialises in epilepsy. 

Misdiagnosis rates for epilepsy in England are shocking, standing at 20 to 31%, resulting in 74,000 people without the condition taking unnecessary anti-epileptic drugs. This comes at a great cost to their health – taking unnecessary drugs which may have significant side effects while their real underlying condition remains undiagnosed and untreated.

The medical cost alone of the unnecessary treatment of people who do not have epilepsy or have been diagnosed with the wrong kind of epilepsy in England is estimated to be around £22.68 million per year. When economic costs are included, such as people who could be in work but are not due to misdiagnosis or mistreatment, the estimated total cost of misdiagnosis in England could be as high as £134 million per year.

Graham said: “Tertiary centres really can make a difference. For example, one patient suffered severe epileptic seizures from childhood which had impacted on her whole life. Her local neurologists had been able to help reduce her seizures to some extent, but the side-effects of the drugs she was taking were serious. When she came here to the Epilepsy Society's tertiary care centre, we had the expertise and equipment to assess her in depth and change her drug regime.

“Now she is virtually seizure free and the side effects of her anti-epileptic drugs have been minimised. Other patients whose lives have been blighted by severe epilepsy have been transformed by brain surgery, assessment for which is only available in tertiary care. Everybody with uncontrolled seizures should be encouraged to have a tertiary referral.”

The NICE Clinical Guidelines Group set a standard within the NICE guidelines for epilepsy, which state that: “All individuals with epilepsy should have access via their specialist to a tertiary service when circumstances require.”

Despite this, the NICE Quality Outcomes Framework (QOF) group has decided not to adopt this recommendation which has been made by all the experts in epilepsy in England - including the NICE guidelines group, the APPG, neurological professors and epilepsy charities - saying there is not enough evidence that tertiary referral would make a difference to outcomes for people with epilepsy.

This is particularly important now that GPs are to have control of the budgets for making referrals.