‘You can’t afford to feel’: The woman who cares for her daughter, son and husband
By Bhvishya Patel, Money team
This week, we’ve been speaking to some of Britain’s struggling unpaid carers, hearing at times heart-breaking accounts of their physical, emotional and financial struggles.
In our final instalment in the series, a woman who cares for her daughter, son and husband says it is a “lonely job” and you often feel “looked down on” as she urges the government to “look at the bigger picture” when it came to help.
“I care for three people but I’m allowed to get Carer’s Allowance once. The allowance is deducted from my Universal Credit so in effect I do not get paid for caring at all.”
Suzanne Buckner, unpaid carer
Suzanne’s daughter Charlotte, or Lottie as her mother and father Mark call her, was three when she was diagnosed with a neuroblastoma, a rare cancer that affects children and develops in early nerve cells, in 2010.
Her gruelling treatment left her with a number of healthcare problems, including the development of three benign tumours in her liver, non-autoimmune type 1, type 2 and type 3 diabetes and asplenia.
Charlotte, now 17, is also deaf and has severe back problems due to discs growing into her vertebrae.
“My daughter was told by her oncologist in December they didn’t actually expect her to survive,” Suzanne, 56, says.
Suzanne is also a carer for her son, 23, who has multiple complex conditions and her husband, 62, who has mental health conditions.
“It’s an eclectic collection – one minute I’m a mental health nurse, then I’m dealing with behavioural problems and then it’s just classic nurse,” she says.
Suzanne receives universal credit of around £972 a month after her carer’s allowance is deducted.
She says the carer’s allowance earnings limit, set at £139 a week, means carers like her are “caught in this trap” where they can’t earn above the limit for fear of losing their benefit money.
“I care for three people but I’m allowed to get carer’s allowance once. The allowance is deducted from my universal credit so in effect I do not get paid for caring at all,” she says.
“It’s ridiculous because if I handed my family over to the state, can you imagine how much money it would cost?
“I sometimes think central government does not have the ability to calculate or look at the bigger picture.”
Recently, Suzanne got “quite poorly” and was told to go to A&E after she was unable to get an appointment with her GP.
“I thought ‘I can’t go to A&E I’ve got to look after my family’. I think that’s another area that’s not looked at – the health and wellbeing of carers. It’s a lonely job,” she says.
“Even though I was sick, I was making sure Lottie was having her injections and medicines. You can’t afford to feel.
“Emotionally it is hard because sometimes you can’t fix the problem. There isn’t a magic solution and you can’t make a phone call.
“It doesn’t matter to a degree how much money you’ve got, it isn’t going to go away. If someone is poorly, they are poorly.”
Suzanne used to run several companies, including an advertising agency, before becoming a carer for her family and now does telecoms regulation consultancy work when she can.
Holding down a 9-5 job is “not possible for most carers”.
“Lottie getting cancer taught me so much about life – do not plan,” she says.
“If she had to go to hospital today that means I have to change all the tutors she’s having and it can happen overnight.
“Having a child with cancer is even more of a lonely thing because it’s quite a rare thing. If she gets sick, life just turns upside down.”
After undergoing chemotherapy, Lottie was left with a low blood temperature and therefore keeping the house warm is important, Suzanne says, which increases heating costs.
The costs can go up further if Charlotte needs to go to hospital as this means trips “all over the country” to hospitals in Birmingham, the John Radcliffe Hospital in Oxford and Great Ormond Street Hospital in London, increasing fuel and food costs.
‘Less of a citizen’
Suzanne says there is “absolutely” a pressure on her finances and if it were not for the inheritance her mother left her, she “wouldn’t be living”.
“Both my husband’s parents are dead and my parents are dead. I don’t have siblings that live close by so I don’t have any support,” she says.
“I think the problem is, unless you’ve walked in somebody’s shoes, you really don’t understand.”
Suzanne says there are some things central and local government could do to help, such as giving personal budgets through direct payments, which would allow carers to choose the support and help they needed.
“Personally I feel you get looked down on. People think you’re only a carer, you get benefits, you’re less of a citizen – that really annoys me,” she says.
“I think the benefits system doesn’t work. I’m not suggesting that all carers in the UK should be paid a certain amount, but they should be paid equitably so that people don’t get to the point mentally where they say ‘I can’t do this anymore’.
“There need to be some serious, high-level debates and they need to involve carers in those debates.
“The government need to look at how much money they are wasting in the care system by doing the wrong things.”
Speaking of her daughter’s battles, Suzanne adds: ” I don’t know how she copes – I think she’s an inspiration.
“She has to be pulled and tugged by doctors and have test after test, and she tolerates it all. Sometimes when I’m watching her have these tests I think to myself ‘I don’t know how she does it'”.
Charity calls for review
Helen Walker, chief executive at Carers UK, says it is in the state’s interest to support unpaid carers because “if a carer goes down then the state has to look after two people”.
If you have to give up work to care, she says, “you are going to find yourself spiralling into poverty”.
“Carer’s allowance hasn’t had a fundamental review for years so we would like a review looking at who is eligible for it, how it works and an increase to the amount,” she adds.
“And also there needs to be an increase to the amount of hours you can work while caring.
“Social care is underfunded so it needs some real investment in order for unpaid carers to be able to care safely and well.
“What many carers will say is they need a break. It’s not that they don’t want to care, it’s that they are exhausted. They are at breaking point.”
A government spokesperson said: “Unpaid carers play a vital role in the lives of their family and friends, which is why from April we’re boosting carer’s allowance meaning carers receive an extra £1,500 a year compared to 2010.
“Those in low income households may also be eligible for additional financial support such as universal credit.”
You can read the previous parts of our series here: