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impact report 2014 - policy

Our policy work and priorities are shaped by the views and experiences of people affected by epilepsy

62% of people who had drugs switched reported an adverse effect. £0 available for health related costs such as dental treatment...

With the continuing roll out of the new welfare benefits system, the reshaping of the National Health Service and a general election on the horizon, our policy team have been working hard to make the voice of people with epilepsy heard.

In 2014, in response to calls from our supporters, we have been working on ways to improve the benefits process, especially for people claiming Personal Independence Payment and Employment Support Allowance. As well as responding to various consultations we have actively sought meetings with the Department for Work and Pensions and the companies undertaking the assessments on their behalf. As a result we have been able to contribute to the training for benefits assessors, improve communications around the assessment process and influence improvements to the claims forms.

36% of people with epilepsy have been refused insurance.

On behalf of people with epilepsy we have been challenging guidance regarding the prescribing and naming of anti-epileptic drugs in order to ensure consistency of supply. In order to gather evidence we surveyed hundreds of people and produced a report for the Medicines and Healthcare Products Regulatory Agency who have now agreed to review the guidance.

1 in 6 people in the UK has a neurological condition.We’ve also been analysing the extra cost of living with epilepsy – as part of a wider consultation in partnership with the charity Scope. Our report has highlighted the financial inequalities of living with epilepsy.

As the leading medical epilepsy charity, improving health services is always high on our policy agenda. We work in partnership with organisations such as the Neurological Alliance and the Specialised Health Care Alliance and meet regularly with the National Clinical Director for Neurology. As a result epilepsy is being prioritised by the Strategic Clinical Networks and Public Health England’s Neurology Intelligence Network profiled epilepsy for its launch.