People with epilepsy at risk from inadequate benefits system, charity says

The lives and safety of people with epilepsy are being put at risk by an inadequate and ineffective disability benefits system, campaigners have warned.

Epilepsy Action says the condition has the highest refusal rate for people claiming the personal independence payment (PIP) – 20% above the national average for all health conditions.

Some claimants have been left feeling suicidal after going through the PIP process, the charity’s chief executive, Philip Lee, added.

The Department for Work and Pensions (DWP) said PIP is better than the old system because it takes a wider look at a claimant’s condition.

But Mr Lee said PIP “is failing to recognise the complex needs of people with epilepsy”.

He added: “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.”

Figures show almost two thirds of people with epilepsy who previously received disability living allowance (DLA) had their award denied or downgraded following a reassessment for PIP.

Some 15,000 people with epilepsy as their primary condition have been assessed for the transfer from DLA to PIP between October 2013 and October 2016.

Of these, 2,300 people had their payments decreased and 7,300 people had their benefits withdrawn altogether, according to figures released to Parliament.

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.

Some 7,100 people with epilepsy transferring over from DLA to PIP requested a DWP review of their PIP claim, while 1,700 took it a step further and appealed to an independent tribunal.

Ministers say that all health professionals carrying out PIP assessments complete training on neurological conditions including epilepsy during their initial training, as well as practising several clinical scenarios involving epilepsy.

A DWP spokeswoman said: “We are committed to supporting people with disabilities and health conditions, which is why we introduced PIP to replace the outdated DLA system.

“PIP is a better benefit which takes a much wider look at the way an individual’s disability or health condition, such as epilepsy, impacts them on a daily basis.

“Under PIP 29% of claimants receive the highest rate of support compared to 15% under DLA.”

More than 2.4 million PIP decisions have been made, and of these 8% have been appealed and 3% have been overturned.

I had to beg for every penny despite epilepsy seizures, claimant says

Here, two people with epilepsy tell their story about going through the system.

A woman has said she was made to feel like she had to “beg for every penny and prove I am not a scrounger” just to claim PIP.

Louise Bolotin, 55, from Manchester, lost £307 a month overnight when she was reassessed as part of a transfer from Disability Living Allowance (DLA) to PIP.

A self-employed freelance journalist and proof-reader, Ms Bolotin has tonic-clonic and focal seizures.

Her focal seizures can come in clusters up to three times a week, leaving her dizzy and exhausted. “The seizures can happen at any time. I never know when I’m not going to be able to do stuff, I have no control,” she said.

She said the extra financial support she received under DLA helped her lead an independent life, paying for things like taxis and a cleaner when she is unable to walk or even get out of bed because of seizures.

“My medications leave me so tired that I am unable to clean for myself. If I could, I would,” she said.

She said the stress of knowing the PIP reassessment was coming up dramatically increased her seizures.

Ms Bolotin said the assessment process was “horrible”, and in February was devastated to learn she had been awarded just two points on her assessment and was no longer eligible to receive any money.

She said: “The assessment didn’t make any allowances for the risks I face in my day to day life.

“I could have a seizure at any time so every day is a constant and conscious risk assessment.

“The whole of the PIP system doesn’t take account of people with fluctuating conditions like epilepsy.

“It’s so frustrating to explain every aspect of your condition and how it affects your life, and then see the DWP be so dismissive.”

She started to appeal against the decision, but said the stress of the whole process caused her seizures to increase once again.

“On the last day I had to send my appeal in, I decided I was unable to,” Ms Bolotin said.

“I cried like a baby the whole day. It felt like the system had beaten me. I am going to have to re-apply for PIP in the future.

“The extra costs of my disability mean I cannot live for very long without the financial support, but I am not strong enough to cope with the process again.

“I feel I have been made to beg for every penny and prove I am not a scrounger just to get money I really need. The assessment process has to change.”

The PIP process is “one of the most harrowing, degrading, intrusive and disheartening experiences I have ever had”, a woman with epilepsy has said.

Sinead Webber was initially rejected for PIP after transferring over from DLA, scoring zero points on her assessment.

However, a tribunal hearing in November awarded the 26-year-old from Devon the enhanced rate for both elements of PIP.

“When I came out of the court room my mum said I made a noise she could only describe as howling,” Ms Webber said.

“I was so broken by everything I had to endure up to that point. It wasn’t just that day, I was tired and broken by fighting to justify my disability and limitations.

“I wanted to get justice for myself and also for everyone who has a neurological condition such as epilepsy – I had to fight for the sake of everyone.”

Ms Webber has drop attacks, which can last up to 15 minutes and leave her unable to speak for two hours.

They can also be extremely dangerous – she has fallen on a knife before and had a seizure while holding a pan of boiling water.

She said the money she received through DLA was life changing, adding: “The money helped me to pay for taxis as I was unable to catch public transport alone due to the risk of injury from my drop attack seizures.

“It paid for things to keep me safe at home, such as a kettle that didn’t require pouring so meant I didn’t burn myself.

“It also helped me with personal things such as new clothing after I had soiled or urinated on them during a seizure, as well as incontinence pads which I have spent a few years wearing.”

However, Ms Webber said these difficulties were not taken into account by her assessor for PIP.

“Despite all this information about how debilitating and dangerous my seizures are, my assessor, who said she used to be a junior nurse, told me it has zero impact on my life,” she said.

“I had to rearrange my assessment three times due to seizures and she didn’t seem to grasp the fact I would be having a better day during my assessment.

“I was also marked down for being articulate, which really upset me – essentially I needed to be incapable of speech for them to think I was disabled.”

Ms Webber’s neurologist has been “disgusted” and “dismayed” by her treatment, she said, adding: “The comprehensive information he provided about my disability was good enough three years ago, but now a junior nurse was more qualified after a one-hour appointment to determine how my disability affects every minute of my day to day life.

“My epilepsy nurse has been to many conferences all over the country and has commented about the stories of devastation and despair at the hands of the PIP system.

“This is a national issue and the concept of disability and incapacity need to be re-defined.

“As it currently stands, the PIP system is fundamentally flawed and it’s having a huge impact on the lives of people with epilepsy.”

A Department for Work and Pensions spokeswoman said: “We are committed to supporting people with disabilities and health conditions, which is why we introduced PIP to replace the outdated DLA system.

“PIP is a better benefit which takes a much wider look at the way an individual’s disability or health condition, such as epilepsy, impacts them on a daily basis.

“Under PIP 29% of claimants receive the highest rate of support compared to 15% under DLA.”

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