Mary Griffin-Porter and Eirlys Mackenzie met at a social group for parents of severely disabled children

FULL-TIME carers are unable to escape “poverty traps” due to “unfair” restrictions on income, campaigners from Islington have warned.

Eirlys Mackenzie, who lives near Upper Street, and Islington-born Mary Griffin-Porter have launched a petition calling on the government to reform the carer’s allowance rules.

Under current legislation, which has existed since 1992, full-time carers (those who spend more than 35 hours a week caring for someone) are entitled to a weekly carer’s allowance of £86.45. Any income on top of their allowance is capped at £204 weekly, and if they earn just £1 over, the entire carer’s allowance is revoked.

Ms Mackenzie and Ms Griffin-Porter, both full-time carers for their adult sons with severe disabilities, met more than 40 years ago at a social group for new parents of disabled children, and have maintained a lifelong friendship, as have their sons Gethin and Daniel.

Both now in their forties, Gethin and Daniel attend daycare centres for 35 hours a week, paid for by the council. Outside of this, they are cared for full time by their parents.

“It’s a bloody hard job, being a carer. And it’s also a very, very lonely job. We just want some recognition and appreciation.” Ms Mackenzie told the Tribune.

“It’s completely constant, because throughout the night I have to monitor Gethin in his sleep to make sure everything is OK – I haven’t really had a proper night’s sleep since he was born.”

She is now campaigning alongside Ms Griffin-Porter to change the laws around carer’s allowance, reversing the cap on extra income that they say is hugely inhibiting the livelihood of full-time carers.

Ms Griffin-Porter said: “My carer’s allowance is £86.45 a week. When you consider that I have to care for Daniel for 138 hours a week, that works out at just 63 pence an hour.

Daniel and Gethin

“Let’s say I get a part-time job for the hours that Daniel isn’t at home, and earn £205 in a week, my entire carer’s allowance goes. It makes me so mad, so irate. It’s just so unfair.

“Because the amount of money I can get is capped, and I don’t have enough spare time in the week to work full-time, it’s basically impossible for us to get out of the poverty trap.

“Because of this system I can never save any money. I can’t go on nice holidays. I haven’t been able to put any money into a pension fund. We just can’t do the same things that everyone else can.”

To complicate the matter further, when full-time carers reach state pension age they areno longer entitled to the carer’s allowance due to “overlapping benefits” rules.

Ms Mackenzie, who is one year away from state pension age, said that she is anxious about the forthcoming change to her allowance, which she says will leave her with even less money each week.

She said: “We have been discussing for years and years how unfair all of this is, but now that state pension age is looming, we decided to do something about it.

“I have absolutely nothing in my pension fund, because I haven’t been able to work or save money for the majority of my life. So I’ll get state pension, but then my allowance will be taken away and I’ll have even less money. But the caring never stops.

“I feel so frustrated because I just don’t feel we get recognised as carers. Just let us earn the money!”

They are hoping that the petition, open till October 24, can raise the 10,000 signatures needed before parliament will respond to it; with 100,000 signatures the issue will be considered for parliamentary debate.

Above all, they hope to increase public and political awareness and begin a conversation on the difficulties of being a full-time carer and navigating the current systems in place.

This week (8-14 June) is National Carers Week, and Ms Mackenzie said she is hoping to gather support and recognition from politicians and MPs in Islington. She has previously engaged and campaigned on local issues with council leader Cllr Una O’Halloran, and hopes to enlist her support once more.

• The petition can be found here: https://petition.parliament.uk/petitions/765364