Rebecca Jones, 38, was working as a paralegal when she had her second seizure and plunged forward into the filing cabinet.

She was having a grand mal seizure – now known as a tonic-clonic seizure – in front of her colleagues, and cut her head badly. “there was blood everywhere,” she says. “They didn’t want me to come back to work.”

Unfortunately Rebecca, who is from Glasgow, was unable to challenge this as she’d recently changed her job to get better hours, not long after having a baby daughter.

That was in 2015. She had thought perhaps her first seizure, at home, was a one-off. But she kept having them. Doctors believe epilepsy may have been triggered by an auto immune disease Rebecca also suffers from.

At the same time as she discovered she is one of 55,000 Scots with epilepsy, she also found herself without a job for the first time since she was 15.

Her husband works, but leaflets she was given by the NHS pointed out that she should be entitled to benefits. Wading through application booklets, she couldn’t see why she wouldn’t be entitled to claim. “I seemed to meet all the criteria,” she remembers.

But six weeks after submitting the forms she was called to an assessment meeting with a nurse working for the Department for Work and Pensions (DWP).

At this meeting she was asked whether she could make a meal, dress and wash herself unaided, whether she was incontinent, whether she could plan a journey.

“I had to say that I could do all of them but not when I have a seizure and not for about a week afterwards until I get over it,” she said. "The DWP questions can't be applied properly to people with epilepsy."

You need 8-11 points on the DWPs scale to qualify for a Personal Independence Payment (PIP). After a further wait, Rebecca got a letter back. The nurse had given her zero points and a ‘decision maker’ had judged she was not entitled to support.

She isn't the only one. According to DWP figures, 66 per cent of new claims for PIP from people with epilepsy are rejected.

Many people who used to get the old benefit Disability Living Allowance (DLA) fail to qualify when transferred to PIP. But the rejection rate doubles if you have epilepsy, from 27 per cent to 54 per cent.

The figures were sought by Epilepsy Scotland which is launching a new campaign today to push for changes in the way PIP claims are assessed. In a briefing for MPs, the charity says the rejection rate is one of the highest for any health condition and claims the "startling" figures reveal clearly how the system is disproportionately affecting those affected by epilepsy and causing them real hardship. It also says a high rate of success by applicants on appeal overturning the original decisions suggests the initial decision-making is "poor and arbitrary".

Lesslie Young, Chief Executive of Epilepsy Scotland, says there is a significant lack of understanding about how epilepsy impacts every aspect of life. "It is so much more than just seizures. We are shocked to see the high refusal rate after being reassessed from Disability Living Allowance (DLA) to PIP. Over half of claimants are losing out on support they used to receive to enable them to live an independent life," she said.

Of those who appeal, 77 per cent get the original decision overturned. Ms Young says this is a clear sign change is needed.

"The fact that so many people are awarded their benefit on appeal strongly suggests there is a serious problem with how PIP is currently assessed."

The '50 per cent rule' which means people need to be affected by their disability more than half the time to qualify for support, in particular, discriminates against those with epilepsy, she says.

"There needs to be a greater understanding of the wider impacts. It can cause severe memory loss, fatigue, anxiety and depression."

Rebecca has now had her decision overturned on appeal after producing evidence of epilepsy's impact on her life.

"It takes me at least a week to recover from a seizure," she says. "I fall to the floor and every muscle in my body is stretched and pulled. I always bite my tongue.

"Afterwards I can't think properly. I have brain fog. It isn't safe to shower without another person present and I can't take a bath. I know of a girl who had a seizure while running a bath and she drowned in a few inches of water. I might forget to take my medication, communication is difficult and I'm inclined to say inappropriate things.

"A lot of people find they pee themselves during seizures, and this makes you reluctant to go out - it is one of the most embarrassing things that can happen to you in public.

"There is no way I can read or understand written instructions. For me all this lasts for a week after a seizure."

The biggest thing for her, she says, is that she is unable to look after her four year old daughter Chloe unaided. "One of my biggest fears was that I would have a seizure when alone with her and cause injury to myself or to her."

Epilepsy Scotland is hopeful the situation will improve when the Scottish Government takes control of social security payments for disabled people. But Social Security Secretary Shirley-Anne Somerville this week announced that this will not now happen by the end of this parliament as it had suggested, leaving disability benefits controlled by the DWP until 2024.

"We are currently consulting with the Scottish Government about the new devolved system and we are positive that this problem will improve. However, people with epilepsy still have years left under the DWP system," says Frances Brown, welfare rights officer with Epilepsy Scotland.

She says it isn't just that decision makers are not even applying their own rules correctly and many appeals are won on the basis that assessors have not followed the law.

"In my experiences assessors don't apply the law or their own guidance and regulations properly.

"They home in on seizures. But they don't take account of the after- effects of seizures."

The DWP also seems to give weight only to Tonic/Clonic seizures, she says, ignoring the common but less dramatic absence siezures - brief episodes lasting only a few seconds.

Assessors have been known to refer to absence seizures as 'altered consciuosness'.

"They are not, it is a loss of consciousness. These can also be very disruptive and some people have them several times a day or a week." Even those whose seizures are well controlled by medication can still suffer from problems such as anxiety or depression related to their condition, she adds.

She says the DWP will often contact claimants who appeal to say they are being offered the highest rate of mobility allowance. But accepting this offer starts the process again and a new appeal must be lodged.

"This is also wrong. If you are entitled to mobility allowance that shouldn't be 'offered' to you as an alternative to going to appeal. If you meet the criteria, the decision should just be made, you should get it."

Ms Brown worries about those who don't get PIP at the first attempt and don't appeal, particularly those who lack any support or advocacy from groups like Epilepsy Scotland.

Those who do appeal successfully find that the process is so drawn out that by thee time they do confirm an award, it is time for a further assessment to take place again

For some, the stress attached to not being believed, and being denied money that some desperately need, is problematic in itself, given that stress is one of the factors which can bring on some people's seizures.

Like Rebecca, 43 year old Gordon had to give up his work - he was a youth worker and also worked in a community bank - after an epilepsy diagnosis. "I was also forced to give up football coaching as I had two tonic clonic seizures in front of the boys. My life has been turned totally upside down and my mental health has also been affected," he says.

If it was not for Epilepsy Scotland I would not be here today as I had contemplated and attempted suicide as a result of the changes in my life. None of this was taken into account at the assessments I attended, which in turn increased stress levels, seizures and made things worse for me."

Epilepsy Scotland's campaign has already been backed by Labour and SNP MPs, several of whom say unfair PIP decisions are a big part of their caseload.

Brendan O’Hara MP, SNP spokesperson for Inclusive Society, said: "This system needs to be reformed to accurately reflect the daily challenges those with a hidden condition have to battle."

Perhaps surprisingly the campaign also has the backing of Scottish Conservative MSP Jeremy Balfour, who said; "It is very hard for people with epilepsy to get PIP under the current system because of the 50% rule. This needs to be looked at when new regulations are produced."

A spokeswoman for the DWP said: A DWP spokesperson said some claimants had been on DLA for years without being reassessed. She added: “PIP takes a much wider look at the way an individual’s health condition or disability impacts them on a daily basis and decisions are made using all the available evidence. Under PIP, 27% of those with epilepsy get the highest possible level of support compared to 6% under DLA.

“In November 2017 we updated our guidance which will increase entitlement for a number of claimants, particularly those with conditions such as epilepsy. We have now begun an administrative exercise to identify existing claimants who may be affected and may be entitled to more support under PIP.”