Health CommitteeWritten evidence from the Joint Epilepsy Council (LTC 23)
The Joint Epilepsy Council (JEC)
JEC is an umbrella charity which provides the representative voice for people affected by epilepsy.
JEC works for a society where people with epilepsy receive the best possible care and support; represent the united voice of epilepsy in the UK and present evidence based views on the need to for improved epilepsy services and influence decision makers in the health, social and education arenas.
Epilepsy is a neurological condition which presents in as many as 50 different types. It is diagnosed when someone has recurrent seizures (also known to many people as fits). It is caused by excess electrical activity in the brain.
More than 600,000 people are known to have epilepsy in the UK. It is the most serious neurological condition and is a major long-term disability with similar numbers of people affected as insulin dependent diabetes.
The Management of Patients with Epilepsy
Almost one in 100 people have epilepsy. 600,000 are prescribed epilepsy medication. Over 1,000 people a year die from epilepsy—60% of child deaths and 40% of adult deaths from epilepsy are avoidable.
At least £268 million a year could be saved if the NHS were simply to stop misdiagnosing patients. If further steps were taken to improve the management of this long term condition then additional millions could be saved.
In recent years the Prime Minister, Department for Health Ministers and officials, All Party Parliamentary Groups, NICE, the Right Care Project, the National Specialised Commissioning Group and numerous other organisations and individuals have all accepted that the management of epilepsy as a long term condition in the UK has failed for many years and continues to do so.
It is therefore immensely frustrating that despite these acknowledgements and a superficial willingness to act, the NHS continues to provide a woefully inadequate service to the vast majority of patients with epilepsy in the UK. We very much hope that the Health Select Committee inquiry into the management of long term conditions will recommend some concrete actions to significantly improve the health care provision for those with epilepsy.
Response
JEC is pleased that the Select Committee wishes to consider the extent to which existing services will have the capacity to meet future demand but would like to highlight the fact that current demand is not being met and this must be addressed as a matter of urgency before contemplating the long term future.
75 people a day are diagnosed with epilepsy and the number is growing. Epilepsy mortality rates are rising and they compare unfavourably to many other European countries.
In the UK there are 1.6 deaths per 100,000 compared to 0.5 deaths in Spain, 0.7 in Italy and Portugal, 0.8 in Austria, 0.9 in Sweden and 1.0 in the Netherlands. Other countries such as Denmark, Finland, Belgium and France similarly have standardised death rates below that of the UK.
Interaction between Mental Health Conditions and Long Term Physical Health Conditions
20–30% of those with learning disabilities have epilepsy. Children with epilepsy often do not realise their full educational potential with 30,000 children estimated to be under achieving academically in relation to their intellectual capabilities.
Seizures result in missed lessons but they also cause short and long term memory problems and difficulties with concentrations and information retention. Similarly even for those children who take medication that controls their seizures, the side effects of such medication can affect memory and attention and lead to underachievement. This can only be overcome where there is an individual assessment, otherwise it is impossible to know how best to support a child with epilepsy.
It is striking that there is not a single reference to epilepsy in the department for Education’s “Special Educational Needs Code of Practice.” Epilepsy is not currently defined by the DfE as a condition that may give rise to Special Education Needs despite the fact it obviously does so.
The Extent to which Patients are being Offered Personalised Services
Put simply patients with epilepsy are not being offered personalised services.
NICE guidelines published in 2004 state that anyone with a suspected seizure should be referred to an epilepsy specialist within two weeks. 90% of trusts fail to do this. There is absolutely no punishment for trusts failing in this area and equally there is no real incentive for them to do so. These guidelines have been consistently disregarded by the vast majority of trusts for almost a decade. Therefore it does not seem unreasonable for a radical overhaul to take place.
A further demonstration of the woeful lack of personalisation in epilepsy care is demonstrated by the fact that only 14% of patients have a care plan despite this being classed as a key indicator of the National Service framework for long term conditions (2005) and a key element of the repeatedly ignored NICE guidelines (2004 & 2012).
Many trusts do not employ a single neurologist who specialises in epilepsy and more than half do not have a single epilepsy specialist nurse. It is therefore hardly surprising that a personalised service is not being offered to the hundreds of thousands of patients who have epilepsy.
A lack of personalisation also means that over £20 million per annum is wasted on misdiagnosis with a staggering 100,000+ people unnecessarily taking epilepsy medication.
50% of epilepsy sufferers make a full contribution to society because their condition is controlled. An additional 20% could join them in doing so with a more personalised service.
8 May 2013