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BBC Scotland investigates epilepsy

Added: 29 November 2011, 11:29

Radio Scotland Investigation reveals rises in numbers of people with epilepsy in Scotland and across the UK

The number of people suffering from epilepsy is nearly forty per cent higher than previously thought, according to new figures revealed in BBC Radio Scotland’s The Investigation to be broadcast at 10.30am on Sunday 27 November.  

Research by the Joint Epilepsy Council of the UK and Ireland (JEC) has found more than 54,000 people are living with the condition in Scotland - an increase of 38% since 2005 when the number of people living with epilepsy in Scotland was 39,000.

Across the UK the research shows the number has risen by 32% from 456,000 in 2005 to 602,000 in 2011 and in England the number is up by 30% from 382,000 in 2005 to 496,000 over the same period. 

The Investigation also reports that experts believe that the lack of provision for people with epilepsy could lead to misdiagnosis and unnecessary medicines being prescribed. The new research from the JEC - a charity which works for the benefit of people affected by epilepsy - shows the cost of misdiagnosis of epilepsy in Scotland has gone up by £10 million in the last 6 years; from £13.7 million in 2005 to £24 million today. And the research shows that across the UK, misdiagnosis costs have risen by more than £100m from £160m to £268m in the same period. 

Sharon Wood, Chief Executive of the JEC says their research indicates there is a combination of reasons for the rise in the numbers of people with epilepsy in Scotland but it can be attributed mainly to improved record keeping through new GPs’ contracts and S.I.G.N - the Scottish Intercollegiate Guidelines Network that develops evidence based clinical practice guidelines for the National Health Service in Scotland .

She said: “I think record keeping has just been very, very bad. There is much better attention to recording now as a result of S.I.G.N. clinical guidelines. Also we have a greater ageing population and older people have unfortunately a higher incidence of epilepsy and of course we have a general population increase to take into account."

The Investigation examines concerns that these new numbers show that not enough provision has been allocated to the care and treatment of people with epilepsy. Sian Hughes,17, from Irvine, has epilepsy and she tells the programme more could be done to help people like her. 

She says: “I don’t think there’s enough provision for people with epilepsy. I think the NHS and government could be doing so much more. Where I live I feel like I’ve been totally brushed to the side – there’s not enough support services to access, apart from charitable organisations. It should be less of a taboo subject. People don’t know enough, more people should know about epilepsy especially as the numbers are rising.”

Campaigners say provision for the condition is poor and lags behind other common conditions such as asthma or diabetes. Lesslie Young, of Epilepsy Scotland says the care you get in Scotland depends on where you live.  

She says: “We have half the number of specialist nurses that we’d want to have, to cover the population. That’s not enough. Equally we have 15 specialists, across 5 health boards in the central belt.  We’d like to see one in every area.

“If the increase continues at the present rate we'll be looking at an epidemic of epilepsy. We need to focus on what we need now so we can meet the needs of that population.”  

Campaigners tell the programme cash saved through properly diagnosing epilepsy could be targeted to provide services for those who really need them in future. 

The Investigation used Freedom of information legislation to survey Health Boards in Scotland about their provision for people with epilepsy and discovered that some boards were unable to answer questions relating to cost and service provision.

Of the 11 health boards that responded, 9 didn't know what their annual spend was on epilepsy.  Only 2 know how many people with epilepsy lived in their health board area. Only 2 of the health boards said that they could confirm they were meeting the waiting time targets of 2 weeks for a referral to a neurologist after a first seizure. More than half did not monitor admittance to A&E with suspected epilepsy. And again more than half did not have a care protocol for their patients with epilepsy.  

Professor Martin Brodie, who is clinical and research director of the Epilepsy Unit at the Western Infirmary in Glasgow, says a shortfall in expertise can cost the NHS dear. He tells the programme: "Getting it wrong isn't cheap... putting in place a health care system which gives the best cost effective care you can is what we're talking about are you going to make a diagnosis if you don't know what it is?” 

The Minister for Public Health in the Scottish Government, Michael Matheson, accepts there may be gaps in provision but says there is a lot of good clinical practice out there too. He says: "The reality is that there will be gaps in the service at the present moment. But what we’re trying to do is make sure our boards are working in a more consistent way.  What I don’t accept is that we’re in a situation where people who may have epilepsy are just not receiving an adequate service full stop. I think there’ll be a lot of good clinical practice out there. 

“We’ve made further progress in the range of services available to support them across our health boards in Scotland.  But I do accept there is clearly more progress that needs to be made in this area and we’ve put in place a range of measures in order  to do that but it will take time to make sure that we do that effectively to make patients receive the type of care that they deserve and that they expect."

The Investigation - 10.30am, Sunday 27 November, BBC Radio Scotland