Ormesby St Michael student with cystic fibrosis has PIP car taken away as he can use sat nav

CF sufferer Ryan Hughes with the car he is soon to lose following a PIP assessment. Photo: Liz Coates (Image: Archant)

Ryan Hughes suffers from a severe form of cystic fibrosis (CF), Britain's most common inherited disease, and needs his vehicle for college.

With complex therapy and medication needs he is almost totally reliant on his mum Gina for support and is frequently exhausted and prone to crippling chest infections.

His condition means he is severely restricted and struggles with day-to-day tasks.

Since being awarded the higher level of benefit at the age of ten, he thought for life, under the old Disability Living Allowance (DLA), his condition has worsened.

CF sufferer Ryan Hughes with the car he is soon to lose following a PIP assessment. Photo: Liz Coates (Image: Archant)

Nevertheless following an assessment under the Personal Independence Payments (PIP) system he came out four points short of the 12 he needed to retain the vehicle.

Having appealed the original decision he is considering taking it to tribunal.

The part time IT student said being able to use a sat nav was one of the things that had gone against him.

In papers setting out the decision he was told: 'At the assessment you said you are able to use a sat nav or your mobile phone to plan a journey that is unfamiliar to you. When you are well enough you are able to drive yourself to college.

'You sometimes go out to meet friends and you sometimes drive to see a friend in a nearby town or you may go to a fast food restaurant with friends.

'You also stated you drove to the dentist the day before the assessment.'

The fact that he did not use a walking aid was also raised although often he cannot walk at all and freqently needs his mum's supportive arm.

His mother Gina Hughes, 48, said the system was totally unfair to people who really needed help, adding: 'It just seems so wrong, cruel really.'

She said it was absurd that the fact he was able to make use of the car when he was well seemed to be a factor in the refusal.

Ryan, who is registered disabled and has a blue badge, has had three cars under the scheme.

He paid an extra £800 for the Mercedes A class model.

Without a car he would struggle to get to college and to hospital appointments, robbing him of what little independence he has, his mother said, adding: 'It has been known for one of us to carry him because he is so weak.'

A spokesman for the Department of Work and Pensions (DWP) said: 'Decisions for PIP are made following consideration of all the information provided by the claimant, including supporting evidence from their GP or medical specialist.

'Anyone that disagrees with a decision can ask us to look at it again, and if they're still unhappy with it they can appeal to an independent tribunal.'

He added that claimants no longer eligible for Motability can benefit from a £175m package which normally includes a £2,000 cash lump sum, the right to buy their car and nearly two months to return it.

A written ministerial statement last week outlined changes giving extra support to people who find they are no longer entitled to motability vehicle.

It included an option for people to retain their car for up to six months if they are awaiting the results of an appeal.

What are PIPs?

Personal Independence Payments (PIPs) were introduced in 2013 to replace Disability Living Allowance (DLA) for new claimants ages 16 to 64.

PIP is not a means-tested benefit and isn't affected by earnings, other income or savings.

PIP has two parts: a daily living component for people who need help to take part in everyday life, and a mobility component for people who find it hard to get around.

Each component has two levels: standard or enhanced and is assessed under 12 activities, 10 for daily living and two for mobility.

For both components you need eight points for the standard rate and 12 points for the enhanced rate.

PIP awards can be for up to two years or a longer period, such as five or 10 years.

In exceptional cases, where an applicant's needs are unlikely to change, awards can be ongoing.

Controversy

Muscular Dystrophy UK says 900 cars are being taken away every week, as more people are rejected for PIP.

More than 50,000 disabled people are said to have had specially adapted cars and other vehicles taken away as they move over to the new disability benefit, according to the charity that runs the scheme.

Figures from the Motability charity show 51,000 people have been taken off the scheme after a reassessment for PIPs since it launched in 2013 – 45pc of all cases.