Shrewsbury mother brands benefits system a ‘farce’ over daughter’s battles with epilepsy

Julie Harris says her daughter Daisy faces a daily struggle because of the effects of her illness and that the Personal Independence Payments system makes life even harder.

Her comments have been supported by the charity which is fighting the injustice.

Epilepsy Action is campaigning for a fairer system to ensure people with epilepsy are able to meet the extra costs of living with a hidden and unpredictable condition.

Daisy, 22, can have as many as 133 seizures in her sleep at night. They can be so violent she often injures herself falling out of bed. She can hold her breath while she is having a seizure, which Julie says is the scariest thing of all.

This means when Daisy wakes up she is exhausted, and so struggles with basic tasks. She also needs constant care and supervision.

Daisy used to claim Disability Living Allowance, but when the system changed to PIP, she was refused, making it harder to live a safer, more independent life.

Julie said: “The DLA money used to help towards things like insurance, hospital visits and travel. Her PIP money would help towards the same, including support with her studies and university accommodation, as we have to pay more for safe and good support."

Julie described the PIP reassessment process as a “farce” which doesn’t reflect the complex needs of living with a hidden disability like epilepsy.

She said: “The questions we were asked were ridiculous. Daisy was asked to walk from one side of the room to the other, and therefore she was considered to be fine. The assessment didn’t take into account that she mainly has nocturnal seizures and the impact these have on her the next day.

"The training is clearly inadequate and the questioning is so rigid, failing to take into account just how complex epilepsy is.

"Applying for PIP is a daunting process and it’s designed to discourage the very people who need help from applying. It’s been a tough journey for us, but we’re determined to fight it all the way to ensure Daisy gets the support she needs – and deserves.”

According to national charity Epilepsy Action, many people need PIP to help them carry out daily tasks safely. But figures show epilepsy has the highest refusal rate for people claiming – 20 per cent above the national average for all health conditions.

Figures show almost two thirds of people with epilepsy who previously received Disability Living Allowance had their award denied or downgraded following a reassessment for PIP. Epilepsy Action says the assessment process does not accurately capture the specific needs of people with epilepsy.

The charity also says assessors often show a lack of understanding and knowledge, which makes it harder for people to receive a fair and accurate assessment.

Epilepsy Action chief executive Philip Lee said: “The current system is failing to recognise the complex needs of people with epilepsy. PIP is supposed to be helping people with disabilities to live more independent lives and yet ironically they are being denied the very independence they deserve.

"We are hearing increasingly concerning stories from people who say their safety and day-to- day living are being negatively impacted. Their physical and mental health are also being affected. Some people have even told us they feel suicidal.

"The current system needs to change. If it doesn’t, it will continue to have more devastating effects on people with epilepsy.”