11 grim things about being an unpaid carer no one talks about

Unpaid carers giving support

When I say ‘unpaid carer’, I’m talking about people who look after family members, children, friends, neighbours, or partners who are mentally or physically unwell, disabled, or have an addiction.

“In the UK in 2015, 6.5 million people provide unpaid care, 1.4 million people provide 50 or more hours of unpaid care a week , and 3 million people are combining caring with work.” These numbers rise annually.

  1. Unpaid carers save the UK £132 billion a year

… the cost of a second NHS.

In November 2015, a report by Carers UK and the University of Sheffield revealed that “the 6.8 million people who provide unpaid care for a disabled, seriously-ill or older loved one in the UK save the state £132 billion a year – close to the cost of a second NHS.”

The figure is based on how much ‘unpaid carers’ would earn if they were paid an actual wage, like ‘replacement’ carers provided by the government are. “The unit cost of replacement care in 2015 is £17.20/hour; increased from £17/hour in 2011 and £11.40/hour in 2001”. Sure, they help more than one person each day, but they’re legally employed and the pay matches that.

  • How much do unpaid carers receive?

Carers Allowance pays £66.15 a week (this rose to £67.25 in April 2020) to care for someone for a minimum of 35 hours a week. That’s £1.92 per hour, based on 35 hours. (Note that I wrote ‘receive’ and not ‘earn’? Read the next point for context…)

The government feels £264.60 a month + unemployment benefits is enough to live on, even though some are 24/7 carers.

Carers have to apply for benefits, or join their partner’s claim – which decreases their partner’s disability payment. Seriously. On the subject of benefits, couples don’t get twice as much as single claimants, which is why SO MANY people lie to the system and claim separately from different addresses, despite actually living together.

  • So the system relies on unpaid carers?

Yep. Heléna Herklots, Chief Executive of Carers UK, has warned: “If even a small percentage of people were unable to continue caring, the economic impact would be catastrophic. … If carers aren’t supported to care well for both themselves and their loved ones, the NHS and other public services would be forced to step in.”

  1. Unpaid carers are legally unemployed

Stay at home carers who look after family members, friends or partners are classed as ‘unpaid carers’ and they’re legally unemployed.

  1. People with carers lose money

Yeah, you read that right. People being cared for by unpaid carers actually LOSE money, receiving a lower benefit payment than they would if they had strangers coming to their home to be their care worker.

  1. It’s constant work

Carers act as a cook, a cleaner, a personal shopper, a taxi driver and a councillor.

State-appointed care workers can’t adapt to the schedule of each person. They can’t take them out at any hour or make sure they eat 3 meals a day. An unpaid carer can sit up with them when they’re having a mental breakdown at 3 a.m, ensure they.attend every doctor’s appointment, and wake up and go to bed at a reasonable time where possible. Some carers get up multiple times during the night, lift or support children or adults much heavier than them, and try to help someone experiencing significant pain, discomfort or mental health issues.

The help from care workers is a far cry from what an unpaid or live-in carer can provide, yet there’s no paid leave or the opportunity to have a replacement care worker so unpaid carers can spend a day focussing on themself or visit family or friends.

Research by National Accident Helpline in 2015 revealed that “34% of unpaid carers never get a break; a further 34% never have an evening or weekend off and only 6% of carers are able to take more than three weeks’ holiday.”

  1. Some carers are very young

The 2011 Census counted 166,363 young unpaid carers (5 to 17-years-old) in England alone. Students at school, college or university can’t just stop revising for exams or stop completing their course work, even if their parents need caring for. They often can’t make or keep friends, and miss social activities due to their commitment, leading to mental health issues and sometimes they’re bullied because of their lack of socialising.

  1. Carers forget about themselves

The National Accident Helpline research found that “44% [of the unpaid carers surveyed] feel stressed or anxious about their own health.” Caring for someone needing 24/7 attention means there’s little to no time for personal growth, hobbies and mental healing. Yeah, this is often the same for people working full time jobs, but at least they can relax after getting home. The NHS acknowledged that “Unpaid carers who provide high levels of care … are more than twice as likely to suffer from poor health compared to people without caring responsibilities”.

“8 out of 10 carers have felt lonely or isolated as a result of caring, with 55% of carers reporting they are not able to get out of the house much (rising to 64% for those caring for 50 or more hours a week). 61% don’t have time to participate in social activities, a situation exacerbated for the 45% not able to afford to participate in social activities. 54% of carers are struggling to pay household bills and 35% are cutting back on essentials like food and heating to make ends meet.” – The Tinder Foundation survey

  1. Some people look down on it

Some people believe collecting benefits makes for a luxurious lifestyle and that carers are just opportunists, claiming an easy paycheck. But £240 a month and basic unemployment support isn’t enough to live on.

  1. They can’t have a successful job and receive Carers Allowance

Fully employed state-provided carers can work as many jobs as they want, but an unpaid carer can’t earn a full wage and claim Carers Allowance. They’re required to earn “£128 or less a week after tax, National Insurance and expenses” to be eligible.

So if someone earns over £6,656 a year after their general expenses, they won’t get paid for spending 35+ hours helping someone else, who would otherwise require a state-provided care worker costing taxpayers hundreds a week. It’s bullshit, right?

Carers without a fixed income have to update their benefits journal weekly to report how much they’ve earned.

  1. Care homes shutting = more unpaid carers

The Carers UK report highlights that “the amount of home care provided by local authorities in the UK has fallen by 4.3% from 2011-2014, and recent estimates put the total funding gap between those needing care and shrinking local authority budgets at £700million a year.” This forces family members to give up successful and high paying jobs to care for their loved ones.

  1. Some carers help multiple people

Whether someone is a carer for 35 hours a week or it’s a 24/7 living, the payment remains the same. 77% of unpaid carers surveyed by the Tinder Foundation in 2015 “undertake more than 50 hours of caring a week”. And although many care for more than one person, there’s still only one payment. “There is an increasing prevalence of ‘sandwich carers’ (2.4 million in the UK) – those looking after young children at the same time as caring for older parents.”. – Carers UK

  1. Two real life stories

These stories from unpaid carers show the reality, which isn’t always bad, but isn’t easy either.

ID0667935: Caring for someone you love is a real privilege fraught with sorrow, laughter – at times – frustration, anger, and some self-pity, which is fought off relentlessly. For my wife and I as parents, it is a life sentence. We will be doing this until the day we die. The marriage is stretched to its very limits. There is no light at the end of the tunnel. Thank God though for my son and his wonderful sense of humour and strength.”

Onmybiketoo: My day is governed by the needs of my tetraplegic husband. I cannot even take a shower without keeping an ear open for him needing me to straighten his painful legs, or pick up something he has dropped. I have gotten used to eating cold food as his dinner comes first. The worst thing about being a carer is the loss of freedom to do simple things like meet up with friends, keep yourself fit, go to work, eat, sleep when you want.”

Want to make a difference? Sign the petition now – it takes less than two minutes.

Leave a Reply

Your email address will not be published. Required fields are marked *