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welfare reform

Many people with epilepsy receive benefits to support them to live an independent life.  As epilepsy is variable and unpredictable in its nature, it is very difficult for benefits claimants with epilepsy to answer questions about a 'typical day' when they are assessed.  Epilepsy is also a misunderstood condition that for many individuals is about more than having seizures. Memory issues, side effects of medication and anxiety often may all play a part in the overall impact of epilepsy. 


Major changes to the welfare system were introduced in the Welfare Reform Act 2012.  Historically, the main benefits claimed by people with disabilities and long term health conditions are incapacity benefits (for individuals that cannot work) and disability living allowance (to pay for care needs and/or support in getting around). Two new benefits have been introduced to replace incapacity benefit and disability living allowance:

  • Employment Support Allowance (ESA) was the first reform to be introduced, replacing incapacity benefits for new claimants from 2008.  Existing Incapacity Benefit claimants began to me moved across to ESA in 2010. This process will run until 2014. (Find out more about ESA.)
  • Personal Independence Payment (PIP) has been introduced from April 2013 in a staged roll out over five years to replace DLA for working aged people. (Find out more about PIP.)

Supporting people with epilepsy to understand and navigate the new system

We have received an increasing number of calls to our helpline from individuals who are anxious about the benefit changes, many of whom have had their benefits stopped and are facing appeals. In response our information team has developed new resources for people with epilepsy going through the benefits process.

We have also run information events for people with epilepsy to help them to navigate the changes.  These events are currently being evaluated and will inform Epilepsy Society's future plans for supporting people in relation to benefits.

Collecting evidence about the effectiveness of the Work Capability Assessment

Epilepsy Society has worked with Epilepsy Action to carry out a survey to find out about the experiences of people with epilepsy in relation to this benefit change.  We sent the survey findings to the Department for Work and Pensions.  We have subsequently met with the Department for Work and Pensions to discuss our suggestions for improving the work capability assessment.  You can read more about this in our blog.

Working with other disability and health charities to campaign to improve the benefits process

We are a member of the Disability Benefits Consortium (opens new window), a coalition of over 50 different charities working towards a fairer benefits system. 

The Disability Benefits Consortium has produced a report assessing how Atos and Capita (the two companies appointed by the Department for Work and Pensions to carry out the assessments for Personal Independence Payment) plan to deliver the new assessments. The report raises concerns about the stark differences between the two providers.

Please get involved by contacting your MP (opens new window) to highlight provision in your area.

Providing training materials about epilepsy for assessment providers

We have prepared an Insight Report outlining areas of daily life that might be affected by epilepsy and common misunderstandings about the condition.  The insight report will act as a reference document for Atos and Capita's medical assessors to use when assessing individuals with epilepsy.  We are continuing to lobby Atos and Capita to develop their training to take into account the particular considerations of epilepsy and other fluctuating conditions.