Dying single mother, 39, with motor neurone disease whose children have to dress her refused disability benefits Lorraine Cox says a benefits assessor recorded that she could hold a pencil when she was unable to

The hardest thing Lorraine Cox has ever had to do was sit down and tell her children she doesn’t know how long she has left to live.

It shook the worlds of her daughter Saorcha who is 10, and of her two sons, Ethan, 13, and Lewis, six.

Since she was diagnosed with terminal motor neurone disease (MND) last year, all the 39-year-old wants to do is make the most of her precious time left with them.

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But the Northern Irish woman says this is being overshadowed by her fight for disability benefits and worries over money.

The single mother says she can’t feed, dress or wash herself. Yet an assessor who came to visit her over her Personal Independent Payment (PIP) claim recorded that she could hold a pencil when she was unable to, Lorraine claims.

The report was full of complete inaccuracies. The assessor said I only had mild mobility problems Lorraine Cox

“The report was full of complete inaccuracies,” she told i. “I’ve completely lost my ability to grip anything in my left hand and I couldn’t hold that pencil.

“My children help me get washed and dressed and cook as I can’t chop food anymore. They cut up my food, lace my shoes, put on my jewelry and even help me out of the bath.

“But the assessor said I only had mild mobility problems. My arm has wasted away and is now skin and bones. I can’t get up the stairs most days.

“The benefits system is brutal and it’s disgusting what’s going on.”

Didn’t fit criteria

Lorraine first suspected something was wrong with her two years ago when she was learning to play guitar.

“I was finding it hard to press of the strings and this was really baffling me, I even went and bought a new guitar but this made no difference,” she said. “Then I thought I’d better get my hand checked out, but I thought it would just be carpal tunnel syndrome or a trapped nerve.”

But after her symptoms worsened and following a battery of tests, doctors delivered the devastating news that they suspected she had MND, which was officially confirmed in August.

MND is a progressive and terminal disease that attacks the motor neurones, or nerves, in the brain and spinal cord. Life expectancy is between two and five years from the onset.

Effects include pain, muscle weakness, muscle cramps and spasms, stiff joints, speech and communication problems, swallowing difficulties and breathing problems.

After a conversation with her neurologist in March, Lorraine decided to apply for PIP, a benefit that helps with the extra costs of a long-term health condition or disability. It is non-means tested and is not affected by earnings, other income or savings.

My illness is degenerative and is only going to get worse which they haven’t taken into account Lorraine Cox

However, she was left shocked when she was informed that after being assessed, by Capita on behalf of the Department of Communities, she didn’t fit the criteria and would get nothing.

“If you have a terminal condition you’re supposed to get PIP,” she said. “I was asked to walk in a straight line and I could then. But my illness is degenerative and is only going to get worse which they haven’t taken into account.”

‘I’ve paid my taxes’

I’m entitled to this money from a pot I’ve paid into Lorraine Cox

Lorraine, from Derrylin, County Fermanagh, challenged the decision and was later awarded a basic payment for daily living, but was refused the enhanced rate and the mobility component payment.

It means she gets £57.30 per week instead of the highest rate of £145.35 a week.

“I’m looking into getting my financial affairs in order such as my pension for my children and organising my funeral arrangements,” she said. “I should not have to be fighting for disability benefit.

“But I will continue to. I’ve worked hard all my life and paid my taxes and now I am terminally ill I’m entitled to this money from a pot I’ve paid into.”

Lorraine, who works in customer services for a transport company, says she could really do with the money because she has been forced to reduce her working hours from full time to 16 hours a week.

“I can enter data into the computer with just one hand but working full time I was coming home exhausted and spending all the rest of my time in bed,” she said. “I can’t sit around getting depressed. I have three children to think about. Work helps me keep going.”

Determined to fight

Lorraine hopes to inspire others struggling with the benefits system to fight.

“I’m quite a strong-willed woman and one reason I’m speaking out about this is to encourage others to fight for what their entitled to. No-one genuinely ill with MND, or MS or the like should be in this position.”

The Department for Communities said it was unable to comment on individual cases.

A spokesperson said: “If a person disagrees with the Department’s decision, they can ask for it to be reviewed and provide any additional information. There is then also the opportunity to appeal to an Independent Tribunal.

“More people are being awarded PIP at the highest rate of benefit than under Disability Living Allowance.”

A Capita spokesperson said: “All our assessors are healthcare professionals, equipped with the training, skills and knowledge to carry out assessments across Northern Ireland in a professional and empathetic manner, in line with DfC guidance.

“The PIP assessment gathers factual information about a person’s functional capability, and does not seek to reach a diagnosis, which the DfC reviews alongside all other medical evidence submitted. The Department, not Capita, makes the decision about an individual’s level and length of award.”

Lorraine is supporting Marie Curie’s campaign to make it quicker and easier for people living with a terminal illness to claim benefits. To sign the petition, click here.

Do you have a benefits story? Email claudia.tanner@inews.co.uk