Today I am introducing a Bill in the House of Commons, calling on the government to develop action plans in health and education for people with epilepsy and related conditions. This would lead to benefits for the many individuals with epilepsy whose lives are adversely affected by poor health or education provision.
Nearly half a million people in the UK have epilepsy – one in every 131 people – yet it remains a low-profile condition. There are several historical and contemporary figures now known to have experienced epilepsy or other types of seizure, including Dostoevsky, Byron and Neil Young.
While 50 per cent of people with epilepsy have their seizures successfully controlled by drugs, many of the other quarter of a million will struggle with stigma, unemployment and fear throughout their lives. Unfortunately the NHS by and large fails them. Britain has leading centres of excellence and leads the world in epilepsy research, but is lagging well behind in practice.
Figures from the Joint Epilepsy Council show that about three people a day die of epilepsy-related causes; one of these three deaths every day is avoidable with good treatment. That means there are 400 avoidable deaths per year. Young people aged 16-35 are at the greatest risk.
Improving health services involves widening access to tertiary care. Any costs of tertiary referral would soon be recovered by providing good quality treatment. The medical costs alone of misdiagnosis are estimated at over £22 million each year, and these mistakes can leave people unnecessarily taking strong drugs with severe side effects for the rest of their lives.
The entire cost of failing to treat people with epilepsy is estimated at £189 million a year: a waste that is unacceptable.
In 1978 the Warnock Report into special education called for better information for staff in schools, and acknowledgement of the impact of the condition on concentration and behaviour. This is still awaiting implementation. About half of all children with epilepsy are under-achieving in relation to their intellectual ability. We need to raise awareness among children, families and teachers, and introduce assessments to identify and support children as early as possible.
This Bill asks the government to implement these action plans. The minimal costs of bringing in these action plans will be superseded by the future savings in the improvements in the quality of living for the individuals and families affected.
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