A mum has revealed the true toll of her ‘ovewhelming’ caring responsibilities and has called out the government for its ‘insulting’ Carers’ allowance
A mum has called the government’s Carers’ allowance an “insult” as she reveals the true toll of her “overwhelming” caring responsibilities.
Kate Crockford , 40, lives in Swanley, Kent, with husband George, 39, an audit manager, and their children Xander, 13, and Rowan, 10, who has the genetic condition tublinopathy.
The condition causes profound learning disabilities and complex needs including epilepsy, cerebral palsy, autism and global development delay. A wheelchair user, he is visually impaired and has challenging behaviour, while Xander is deaf and has autism, ADHD and anxiety.
Kate says: “The physical issues George and I have experienced from caring include sciatica, pulled muscles, twisted ankles, black eyes and broken glasses – from being kicked in the face – bites, kicks, pinches, slaps.
“In 2017, due to overwhelming caring responsibilities, I ignored having the flu, which then was compounded by fungal pneumonia. By the time I got to A&E, I was barely breathing and was in intensive care by that night, very close to death.
“Then, in 2021, due to a biological heart quirk, bacteria from a bite Rowan gave me travelled to my brain and I developed a brain abscess. In A&E they thought I had a brain tumour and I was rushed to London for an emergency craniotomy.
“It resulted in a stroke, which paralysed me down the left side entirely. I was in hospital for seven weeks. I had to learn to walk again. My husband was left with the boys for the whole summer.
“I now make a proper effort to keep my appointments. But my smear test is three years overdue and I haven’t been to the hairdresser since 2019! Caring for Rowan and Xander is a full-time role. The Government needs to stop targeting the vulnerable. Carers’ allowance is an insult.”
Unpaid carers are 50% more likely to live in poverty than the rest of the population, according to shocking new figures.
The charity Carers UK says unpaid carers save the government a staggering £184 billion a year, yet 1.2 million are in poverty – 400,000 of them in deep poverty – while Carers’ Allowance is the lowest benefit of its kind at £83.30 a week.
With approximately 12,000 people in the UK becoming unpaid carers every day, 43% of current or former unpaid carers have either developed a mental or physical health problem, or seen an existing condition worsen.
And 40% of our estimated 24.9 million current unpaid carers have cancelled their own medical appointment, because of their caring roles.
Speaking at the start of National Carers’ Week, which runs until June 15, Helen Walker, Chief Executive at Carers UK, tells The Mirror: “Many carers feel unrecognised and at a disadvantage – facing a greater risk of poverty, social isolation, poor mental and physical health.”
Highlighting the difficulties of working, while caring and urging the government to provide greater recognition and financial assistance for carers, she continues: “An estimated 600 people a day give up work to care.”
Andy McGowan, Policy and Practice Manager for Young Carers at the charity Carers Trust, says young carers, caring for 35 hours a week or more, are 86% less likely to obtain a degree and 46% less likely to enter employment than their peers.
He says: “It’s so vital to ensure they get academic, pastoral and financial support at university, so caring is not a barrier to them achieving their huge potential”.
Carers are being affected up and down the country by the lack of financial assistance. Children’s services worker Sherene Snowdon, 42, lives in Gloucestershire with husband Lee, 46, a former gas engineer and plumber; son Jake, 19 ,and daughter Paige, seven. She cares for Lee, who sustained a brain injury five years ago, and for Paige, who has SEN.
She says: “I became a carer overnight on 16 March 2020, when Lee sustained a brain injury after falling down some stairs. Seeing Lee on life support was absolutely terrifying. I was told to say my goodbyes. I was told he wouldn’t be able to walk or talk, but Lee has proved everyone wrong. Lee had been home for just three weeks when he had a stroke.
“It was very stressful. My hair was falling out, I was surviving on two hours’ sleep, juggling a teething baby, a young son and my husband’s needs. I was told nurses would come to our home, but we never saw them. I became the sole provider for my family. Things are very tough financially. I had to sell our two cars.
“There were times when I didn’t eat because I needed to prioritise food for my husband and kids. I’d look for the cheapest options – such as pot noodles that cost £1. I work full time because I have no choice, so don’t get carers’ allowance. And I only see my friends once a year. Caring has had a huge impact on my mental and physical health. Carers need realistic, practical support and help.”
Only child Rebecca Green , 23, from Liverpool, is a young carer for her mum Anne, 55, who has rheumatoid arthritis.
Rebecca was in her second year at university when, in March 2023, Anne suddenly developed mobility problems. As her dad Phil died suddenly in 2017, she became Anne’s sole carer. Rebecca says: “It’s almost the parent-child relationship in reverse.
:Getting Mum a diagnosis was a lengthy process. It took a year to get medication, which she had an adverse reaction to. I was back and forth between university and Mum, constantly worried.
“I deferred two essays and the stress impacted my third year too. I didn’t graduate on time. It’s still up in the air if I’ll graduate this year.
“I think the Government needs to recognise the different forms caring can take and include more support and validation. As a carer, the freedom to choose gets taken away. I worry, will I have a job I want? Will I be able to move out and have kids? I don’t know.”
- Young carers needing support should visit www.carers.org to find support in your area.
Full-time carer Nikki Knight, 39, lives in the Forest of Dean, Gloucestershire, with husband Ollie, 41 a teacher, and their children Sophie, 12, and Toby, 7, who has ADHD and was diagnosed with acute lymphoblastic leukaemia in 2022. He is currently recovering from a bone marrow transplant in January.
Former social worker Nikki, who quit work in September 2023 to care for him, says: “I’ve been coming to terms with Toby’s diagnosis while navigating all the appointments, paperwork and healthcare plans.
“I live in fight or flight mode. From the moment I get up to the moment I go to sleep I’m on the go. I often fall asleep on the sofa – too tired to get to bed.
“I’ve delayed my follow up clinic and physio appointments after a fall, to fit in around his needs. My dental and eye check ups are overdue. Toby is clinically vulnerable. Only my husband and I are trained in central line care for him. We get Disability Living Allowance, but going from a two-income family to just one was a shock.”
Author and blogger Sarah Ziegel, 64, lives in Richmond, south west London, with husband Jonathan, 62, a government lawyer, and their four autistic children – twins Benjamin and Thomas, 26; Hector, 23 and Marcus, 16.
Since she began caring, she has had a breakdown and developed adrenal fatigue, causing low energy, insomnia and digestive problems. As a carer, you are just surviving to care for your loved ones. she said “Adrenal fatigue results from years of living on adrenaline.”
“I asked the GP for counselling but only got one session.” she said “It isn’t possible for me to work. The real issue for parent carers is that there is no one to take over and carers’ allowance is so low it is an insult.”
“My sons all live at home, but you can’t claim housing or living costs for a child over 18. New Zealand pays family carers – why can’t the UK?’
*Sarah is author of Marching to a Different Beat about her family’s autism journey.
Self-employed ADHD coach Ana Bonasera, 33, from Oxford, is married to Jordan Hands, 31, and has five children. Four have SEN, or are awaiting diagnosis. Nathaniel, 12, is awaiting an autism and ADHD assessment; twins Jude and Luca, 11, have autism and learning disabilities; Spencer, 7, is awaiting an autism and ADHD assessment Daughter Mila, two, does not have special needs.
Ana says: “Being a parent-carer has definitely impacted my mental and physical health. Once, I was so overwhelmed I ran out in the street in my nightdress with no shoes on, desperately calling my dad.
“It’s difficult asking for help – it took me seven attempts to call my doctor’s surgery, but they couldn’t help if I didn’t want medication. Soon afterwards, I had a breakdown. It was the worst state I’d ever been in.
“I realisedI needed to help myself before I could help my kids. I had some hypnotherapy, some coaching and did lots of research to work out what triggers me. It’s very hard juggling work with caring responsibilities.
I can’t work over the summer holidays, because of lack of provision for SEN children. Having a social life is almost impossible. My husband and I hardly ever go out. Now an ADHD coach, I want to make sure other carers don’t feel unworthy of help.”
Former mental health trainer Emma Amoscato, 43, from Bedfordshire, who has a daughter Amalia, 9, and son James, 12, was a carer for her husband Carl, who was diagnosed with kidney cancer in 2017 and died in September. She now cares for James, who has AuDHD.
Emma says: “‘Being a carer can be all consuming. My son is autistic. I home educate, as the school couldn’t meet his needs. This impacts my ability to work. I feel the ongoing stress of caring in my muscles and gut. It has affected my periods and my sleep.
“Carl had cancer for seven years. For the last 18 months, it was too hard for me to work. Carers’ allowance is minimal. The Government needs to respect carers and see us as contributing members of society.”
- Emma’s app wearesmileapp.com supports the mental health of carers and people managing long-term conditions.
