'Cutting NHS targets could save epilepsy lives'

Director of Epilepsy Bereaved

Image caption,
New hopes for a 'Cinderella' service

For years NHS care has been driven by the need to meet an array of targets.

But in this week's Scrubbing Up Jane Hanna, director of the charity Epilepsy Bereaved, argues that removing such strictures could create a more level playing field for the rationing of health resources and save lives.

Like everyone working in the health services today I am well aware of the pressures on services and the ever-present fear of cuts.

For years there have been targets, targets and more targets - and that has meant some areas being neglected.

Patient safety first

But could there be a change in the wind? There could be new hope, and perhaps an opportunity for some of the more neglected conditions in healthcare.

Health secretary Andrew Lansley has acknowledged that national targets ignored some conditions. Now he promises a relaxation in the use of targets and that patient safety will be at the heart of the NHS.

A policy shift away from number-crunching to a focus on patient safety must surely be positive news for people with a life-threatening condition.

Take epilepsy. Epilepsy patients do not benefit from specific national targets because "only" half a million people have epilepsy and "only" 1,200 people die from epilepsy each year.

It is "only" the fifth leading cause of avoidable years of life lost in males and "only" the eighth in females.

Epilepsy-related deaths in the UK have remained static since 1993 reflecting a lack of focus by policy makers.

During the same period the total number of deaths from all preventable causes has been falling reflecting successful public health initiatives and research spending aimed at the top 10 causes of preventable death.

Numbers game

A NICE (National Institute for health and Clinical Excellence) audit of deaths in 2002 found that 40% of epilepsy-related deaths were potentially avoidable through better medical care and treatment - but in the numbers game we and other "smaller death" totals lose out.

Those with epilepsy are being denied the help they need.

About 69,000 people are estimated to be living with unnecessary seizures not only exposing them to risk, but limiting employment and every day opportunities.

Aiming to achieve seizure-freedom is not rocket-science. Drugs for epilepsy are relatively cheap and can offer seizure-control for 70% of patients.

The crux of the matter is being seen promptly by an epilepsy specialist who can diagnose and recommend the right medication.

Specialist nurses and specialist GPs can be a cost-effective part of the clinical team, especially where there are not enough consultants with expertise in epilepsy.

People with epilepsy want information and sign-posting to the voluntary sector. People who continue to have seizures need prompt re-referral for review of diagnosis and treatment options.

But dealing with epilepsy in the community has not benefited from risk management techniques used in other conditions such as asthma.

More cash to fund research to develop case management for people with epilepsy at risk of emergency care or premature death would be likely to reduce these risks and cut the costs of emergency admissions.

Since 2000 there has been progress, but mainly in the creation of patient expectations and clinical guidelines on the epilepsy.

The government produced an action plan on epilepsy. On the ground, however, access to resources was not dependent on legitimate patient expectation, but whether there were national targets enforced from the centre. People with epilepsy lost out.

This is not to say that there has been no improvement for people with epilepsy. There are pockets in the country where mainly due to the efforts of epilepsy champions and support from the voluntary sector services have moved forward.

If primary care practitioners are to be responsible for commissioning epilepsy services in the future they need to be well informed of the issues.

They need to move beyond the tick-box exercise for epilepsy in the GP contract and look seriously at the potential for achieving more positive outcomes for patients and a more cost-effective health service. People with epilepsy and those close to them must play a part in this process.

Around the BBC

Related Internet Links

The BBC is not responsible for the content of external sites.