Cost of living with epilepsy

Employment

Only 42% of working-age people with epilepsy are currently in employment. This is among the lowest employment rates for disabled people in the UK. Research by the Trade Union Congress (TUC) has also highlighted that people with epilepsy in work are paid on average 11.8% less than non-disabled workers.

This means that not only are people with epilepsy less likely to have a paid job, but when they do, they earn less than their non-disabled peers.

Welfare

Many people with epilepsy have struggled to successfully apply for Personal Independence Payments (PIP). The current PIP assessment process is not working for people with epilepsy. The process does not properly assess the impact epilepsy has on an individual’s daily life.

The assessment is not able to capture and reflect the nature of epilepsy. Too many people with epilepsy are not successful in their initial assessment for PIP and have to go through the appeals system to get the support they should be entitled to.

And while people on Universal Credit received an extra £20 per week during the pandemic, people on disability benefits such as PIP received no such help. This is despite research showing that extra costs faced by disabled people add up to £583 a month on average.

What are we doing?

In order to make sure that people with epilepsy aren’t disadvantaged by the cost-of-living crisis we are calling on the government to make the following improvements:

Employment

• Introduce mandatory disability employment and pay gap reporting for employers, including reporting on the employment gap for specific impairment groups
• Introduce a duty on employers to produce targeted action plans identifying the steps they will take to address any gaps identified, including ensuring disabled workers with invisible impairments feel confident in completing workplace equality monitoring
• Ensure there is more focused employment support for people with hidden and fluctuating conditions and better support for people with epilepsy from Jobcentre Plus Disability Employment Advisers. This should include ensuring that job coaches with training and understanding of epilepsy, and the employment barriers they face, are available to people with the condition
• Reform the current Access to Work system to ensure that people with epilepsy get the support they need to find and stay in a job
• Access to Work support should also be made available during the job search to help people find work, and ensure that support is in place for the start of employment

Welfare

• Update disability benefits and Carer’s Allowance to rise in line with inflation
• Increase the length of PIP awards to avoid frequent re-assessments. The Department for Work and Pensions (DWP) should also look to use information provided during previous assessments, which would allow assessors to make a paper-based decision, without the need for repeat assessments
• People with epilepsy should be assessed by someone who has a proven understanding of the condition
• Reform the activities and descriptors in the PIP assessment and Universal Credit Work Capability Assessment to properly capture the impact of living with a fluctuating and invisible condition like epilepsy
• End the use of informal observations as part of the assessment process

Cost of living

• Provide targeted support to help disabled people with the rising cost of living
• Ensure better access to the Warm Home Discount Scheme which currently excludes around 210,000 people on disability benefits from applying. Currently Disability Living Allowance, Personal Independence Payments and Attendance Allowance claimants will no longer benefit
• Introduce social tariffs for disabled people so they pay no more than a supplier’s cheapest plan

Get involved

We are looking for MPs to support our work to ensure that these recommendations are implemented. We would like people to raise this issue with their MP.

You can download the letter below and edit it to explain your own experiences with PIP and send it to your MP. We are also asking people who are happy to, to visit their MPs advice surgery and talk to them directly about these issues. You can find out who your local MP is here, and find out when they hold advice surgeries on their websites.