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Epilepsy – it’s more than just seizures


12 September 2013

Epilepsy does not easily fit into tick-boxes. Christine Brock, Epilepsy Society Helpline manager  explains why the Work Capability Assessment is failing people with seizures and Sarah Vibert, head of policy, argues for a fairer, more focused system.

Christine Brock writes

The variable and unpredictable nature of epilepsy means it is very difficult to answer questions about how it impacts upon an individual’s day to day life.   For many individuals with epilepsy the answer is likely to be 'it depends...' or 'sometimes if...'

Epilepsy is also a misunderstood condition, even among health professionals, who may not realise there is more to epilepsy than having seizures.  Side effects of medication, nausea, anxiety, depression, memory problems, and isolation may all play a part in the overall impact of epilepsy. 

Individuals who have epilepsy may themselves struggle to explain the impact their condition has on them. Memory issues, as well some types of seizure causing  lack of consciousness , mean that individuals may be unable to fully describe how their epilepsy affects them.

Work Capability Assessment

The Work Capability Assessment (WCA) involves a largely tick-box form, which is more often than not followed by a face-to-face assessment where the claimant is required to tell a medical professional how their condition affects their day to day life. 

Given the nature of epilepsy, it is hardly surprising that 83 per cent  of people with epilepsy taking part in a recent survey about their experience of the WCA felt that it is an ineffective way of determining whether an individual is capable of work. The high number of appeals and significant rate of overturned decisions involving people with epilepsy adds further weight to the notion that WCA is not  always a reliable way of determining fitness for work.

Not only is the WCA not achieving its purpose as a discriminator of capability for work, it is actually causing some individual's conditions to worsen.  A quarter  of Epilepsy Society helpline callers this year said the stress of the WCA was increasing the frequency of their seizures.  A few individuals have told us the whole process is so daunting they have just not even bothered to apply, leading to financial hardship.  The frequency of benefit reviews mean that people tell us they are on a constant cycle of apply, wait, appeal, wait, re-apply, and so on.

Sarah Vibert writes

We are not  calling for the WCA to be scrapped. Indeed most people with epilepsy that we speak to are determined to work if they can and do not want to be on benefits.  They want a fair way to assess whether they are capable of work at a particular point in time. Epilepsy Society and Epilepsy Action  want to work with the Department for Work and Pensions and Atos, the provider of WCA, to help them to improve the process to ensure people with epilepsy get a fair assessment.  We have three main calls .

Firstly, given epilepsy is such a complex condition which often takes many years for even a specialist medical professional to diagnose, we would like to see mandatory collection of medical evidence for people with complex conditions such as epilepsy.  Time limits imposed on Atos for completing the assessment process should take account of the time it takes to collect all relevant evidence.  In this respect we also feel that claimants should be given every opportunity to feed in medical evidence right up to the point of a decision and clearer guidelines should be developed about the weighting that should be applied to medical evidence by decision makers.

Secondly, claimants should be given more information up front about what to expect from the WCA process.  In particular, improving understanding of what to include on the ESA 50 form would prevent unnecessary face to face assessments and allow longer face to face assessments where they are required.  Claimants should be told they have the right to take someone into the assessment with them (29 per cent of our survey respondents were not aware of this), and they should be given plenty of time to prepare.

Finally, assessors need to be better trained to look at the whole person and not make assumptions about how a condition might affect an individual.  Epilepsy is different for everyone and related (sometimes undiagnosed) conditions, such as depression, may be more relevant in assessing capability for work.  Assessors should give individuals plenty of time to talk (as happens in appeals) and allow recording of assessments (on any technology available) so that both assessors and claimants can clarify what was said. Several people have told us how the assessor incorrectly paraphrased what they had said in the assessment. 

But, most importantly assessors need to realise  individuals  are individuals  not tick boxes.