'Sometimes I wake up and I can't move': Woman with chronic MS refused disability benefits by DWP

Aliie Harpham is one of 4,100 people with MS refused personal independent payment (PIP) last year – amounting to nearly a third of all sufferers who applied for the benefit, figures show

MS sufferer Aliie Harpham, 26, was refused disability benefit despite struggling daily with the long-term, incurable condition (Aliie Harpham)

“I woke up one day and couldn’t see anything,” recalls Aliie Harpham, who discovered she had multiple sclerosis (MS) last year. “I felt completely paralysed, like someone had just pressed the ‘off’ button on my body. I had to lie in bed for a week. I thought I was dying.”

Now aged 26, Aliie is getting used to living with the incurable condition. But life isn’t easy. She can’t feel anything with her left hand, which makes it difficult to do simple things like tipping food from a heavy saucepan. She gets excruciating nerve and bone pain on a daily basis. The only reason she doesn’t constantly fall over is because she wears a foot brace to steady her foot drop. Sometimes she wakes up with involuntary eye movement so severe that she can’t even walk to the toilet.

“Living with MS, there are all these little things that normal, healthy people don’t experience but that become a daily thing for us,” she tells The Independent.

“It’s now just second nature for me to carry heavier things in my right hand. I have to be really careful with little things like leaning on a hot radiator, because my left side is numb. If I have a bad night’s sleep, my balance is completely gone and I have really bad word-finding abilities. I catch every single cold or flu virus that goes round and I’m also really prone to urine infections.”

The worst thing of all, Aliie says, is the nystagmus, an eye condition that comes with having MS, which comes on about once a month and leaves her unable to move, as well as a painful thing called the “MS hug”, which she gets on an almost daily basis.

“The first time I had the ‘MS hug’ I genuinely thought I was having a heart attack. It’s this really shocking quick pain. I get it a lot more now than I did when I was first diagnosed. It can last for up to an hour. I get it at work a lot because it comes on when you’re tired.

“And then I can’t do anything when the nystagmus comes on. I wake up with it and have to stay in bed for two or three days, I can’t even walk to the toilet on my own. It feels like someone’s shaking you when you’re standing still. The way I have to deal with it is just lay there with my eyes closed and ride it out.”

Despite all this – which she manages to hold up her job as a student veterinary nurse – Aliie gets no disability benefit from the Government, after an assessor for the Department for Work and Pensions (DWP) decided she didn’t qualify for financial support.

The 26-year-old is one of 4,100 people with the condition who were refused personal independence payment (PIP) last year, amounting to nearly a third of all MS sufferers who applied for the benefit.

Figures obtained though Freedom of Information requests show 31 per cent of new claims from people with MS between April 2013 and April 2017 were found to be “disallowed”. A further 6 per cent (1,100) qualified for PIP initially but were then rejected after a reassessment – despite MS being a long-term progressive condition, for which there currently is no cure.

“It’s massively insulting you go through years of wondering what’s wrong with you, you finally get an answer, and then you’ve got someone who sits there for 20 minutes and decides you’re not disabled enough to receive any help,” Aliie says.

“I had been told the assessment would take an hour but mine lasted 15 minutes. I wasn’t asked any questions about how my disability affects me. When I Googled the set of questions afterwards, I found out they are the ones used to diagnose Alzheimer’s. I wasn’t asked to perform any physical tests.

“I’ve told myself the assessor had no idea what MS is or what it is to live with it, because the thought of someone having a full understanding of this condition and still behaving the way she did is too cold and painful to think about.

“Someone I’d never met before decided that although I have a life-long disability, I’m not ‘disabled enough’ to receive any help, even though I wear a fitted orthotic piece every day for my foot drop. I also have permanent sensory issues. They didn’t pick up any of my weakness of movement issues.”

Aliie says living with the additional costs that come with the condition on just her student wage is a struggle, and she only just manages to afford the journeys to medical appointments and routine medications she has to buy.

“I spend a lot of money on petrol to get to hospital appointments. I get sent all over the place in Dorset to different appointments, from Bournemouth to Dorchester. On a tight student wage it really bites into everything,” she says.

“And you have to buy a lot of extra stuff with MS. I have to buy a lot of over the counter medication. I spend a ridiculous amount of money on prescriptions.”

The MS Society, the charity that obtained the FOI figures, says that with 65 per cent of all PIP decisions that go to appeal being overturned at tribunal, the new data provides further evidence to suggest the PIP assessment system – which replaced disability living allowance (DLA) in 2013 – is “fundamentally flawed”.

Michelle Mitchell, chief executive of the charity, said: “It’s insulting that so many people who are diagnosed with a long-term, incurable condition are being told they don’t qualify for support. These latest figures show PIP isn’t just hurting those who’ve been moved across from the old system, but also new people who are trying to get support for the first time.

“PIP is meant to help manage the extra costs of living with a disability and assist people to be more independent. But it’s a tougher system than DLA, with much stricter rules. In too many cases, assessments fail to reflect the barriers people with MS face.”

The DWP announced new guidelines in November that will see certain claimants of PIP receiving higher benefit rates after a court found some disabled people were not being offered enough. But Ms Mitchell said this was not enough.

“Earlier this month we saw the Government rewrite some of the rules to comply with a legal ruling to make PIP fairer. But rather than tinkering around the edges, the Government needs to review the whole system to make sure it works more effectively for those it’s designed to support. Having MS is hard enough; it shouldn’t be made harder by a welfare system that doesn’t make sense,” she added.

Earlier this year, the charity highlighted at least £6m a year has been taken from people with MS since the introduction of PIP. The new figures also follow the revelation by Frank Field, chair of the Work and Pensions Committee, that more than 3,000 people have written to them in despair at the benefits system, with many driven to suicidal thoughts.

The MS Society is now urging the DWP to carry out an overall review of PIP to make sure assessments accurately reflect the reality of living with MS, which affects more than 100,000 people in the UK.

The charity wants to see changes including assessors with professional experience and adequate training of neurological and fluctuating conditions, an evaluation of how PIP takes hidden symptoms like pain and fatigue into account, and improvements in processes around providing medical evidence.

Aliie didn’t appeal the DWP’s refusal of her case after finding out the outcome of her assessment, saying she was too upset to try again straight away. But she will be reapplying for it once the appropriate time has past since her first application.

“First I was really upset, but now I’m just angry. Someone like me not getting it – I’m really going to struggle getting by, but some people out there really can’t live without this help. It’s made me feel awful for everyone out there,” she says.

“It’s enough being told that this is the rest of your life and it’s not going to get better. But then you have to fight tooth and nail to get any extra help.

“This condition comes with anxiety, it gives you depression. A lot of people with MS are too scared to go ask for help, they’re terrified because they hear how many people get turned down. I’m speaking to people every day who are home alone with no electricity because they’re just terrified to go there. It’s heartbreaking.

“My situation is the tip of the iceberg. I’m right at the beginning of this journey, but there are so many people who are in the thick of it at the moment and they’re still not getting any support.”

A DWP spokesperson said: “PIP assessments look at how people are affected by conditions such as multiple sclerosis over the majority of days in a year, rather than just assessing ability on a single day. Under PIP, 36 per cent more people with multiple sclerosis receive the highest rate of support than under the previous DLA system. Anyone who disagrees with a decision can appeal, and may submit additional evidence.”