Tracy Hailwood, 54, from Cheadle, is mourning the loss of her disabled daughter, Stacey, whom she was a full-time carer to – now, she says the DWP is telling her to get back to work
A grieving mum who spent three decades as a full time carer says she has been told to sign on and “just get a job” after her disabled daughter died. Tracy Hailwood, 54, from Cheadle, is facing homeless following the death of her daughter Stacey.
She had no qualifications when she gave birth to her daughter, who fell sick and was admitted to hospital with croup, just months after she was born. Sadly, during treatment she endured a cardiac arrest which left her brain damaged. From there, Stacey developed spastic quadriplegia, suffered epilepsy, and was blind as a result of the brain damage.
Tracy became a single mum at just 19 years old and spent 33 years caring for Stacey. With her life completely dedicated to giving her daughter the best care, Tracy had no choice but to rely on the DWP (Department for Work and Pensions).
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However, Stacey’s condition began to decline around five years ago and she tragically died in 2023. Tracy, exasperated, has tried to explain to the DWP that she has no qualifications and no work history, reports Manchester Evening News.
The DWP has responded to her dire circumstances saying it always provides the best possible support to those who need it. The DWP’s ‘best possible support’, it says, is ‘paying carer’s allowance for several weeks after someone’s caring role ends’.
The mother said: “It’s a slap in the face. I’m grieving for my child, but the DWP said there’s ‘nothing they can do, you just have to sign straight on and start looking for a job’. I’ve been a full-time carer for more than 33 years with my daughter, I haven’t got any work history and it’s made me feel like I’m going a bit crazy.
“I’m sitting in a house I’m having to sell because I can’t afford to live here. I’m angry, you do all that caring for years because it’s your child, but you’re also saving the NHS thousands of pounds by doing it. I can’t afford to do anything until the house is sold and I get the money from that. That means I’m going to be homeless for a while.”
Stacey was left brain damaged after her cardiac arrest and surgery, which left her family battling with challenges. The young family spent years going through the legal process and received a medical negligence settlement. “Over the years, she needed constant surgery. She ended up with a gastrostomy and a tracheostomy,” said Tracy.
“She had the capability of a three-month old baby. She was a perfectly healthy baby before that. I was only 19-years-old at the time, she was my first-born, it was a hard struggle coming to terms with everything and trying to cope the best I could. I basically had to start from scratch again and learn how to deal with her needs.”
Tracy finally received a letter from the hospital in 1998, a decade after her daughter suffered brain damage. The letter admitted her care was ‘inadequate’ and that the tragedy should never have happened. Tracy used some of the compensation money to buy a bungalow in Cheadle that better suited her daughter’s needs. The young mum was then also raising two other children, a son now aged 33, and another daughter now aged 30.
The family were supported with some carer’s allowance for Tracy, and Stacey’s personal independence payments (PIP) and employment and support allowance (ESA), says the mum-of-three. Tracy also says she was given just 30 hours a week of professional caring help.
“I wasn’t just Stacey’s mother and carer, I was her personal assistant,” explained Tracy. “I did all the gastrostomy and tracheostomy changes, I trained up support workers for the 30 hours a week from continuing care. The medical negligence money was in Stacey’s bank account and, when she became an adult, the bungalow went into her name. I made sure I kept on top of all the accounts.”
Speaking about her daughter’s death, she said: “I knew she could go at any time. I cared for her right to the end,” said Stacey’s devastated mum. Towards the end, Stacey was almost completely bed-ridden, she was constantly ill. I had to keep cancelling any respite for me because she was so unwell. It’s only now that I’ve started to come to terms with the fact she’s gone. It’s only now that I’m able to talk about her and smile about some things.”
But Stacey’s death marked the start of Tracy’s next battle, she says: “I thought I’d been through my struggles in life – fighting a court case, fighting to get my daughter education. It wasn’t until after she passed away that I knew what a fight was.”
Tracy’s carer’s allowance was stopped and she says she has been told by the DWP to ‘sign on and get a job’. She is now sustaining herself with some ESA, PIP, universal credit and jobseeker’s allowance, but says she is hamstrung by a life out of work caring for her child.
“I did everything for Stacey for 33 years so I have no work history,” she said. “But another problem with being told to just ‘get a job’ is that before she was born, I didn’t have any qualifications anyway. I was a single parent, I didn’t even have the back up of a partner. I eventually managed to put myself through college and got an NVQ, but even that was 2005 – that’s 20 years ago.
“How am I meant to get a job with no qualifications? And making matters worse, I have severe back problems, my hip has gone, all from carrying Stacey up and down the stairs when we lived in a house. I’m not able to leave the house unless it’s for hospital appointments, all my shopping is delivered.
“When a spouse passes away you get bereavement payments, with a child you don’t. It’s just ‘sign on, look for a job’.” Tracy says she now cannot afford the running costs and utility bills for her family home, and has been forced to sell. “The bungalow has been sold, I’m waiting for a completion date. I just can’t afford the running costs,” explained Tracy.
“I can’t afford to do anything until the house is sold and I get the money from that. That means I’m going to be homeless for a while. I’m going to have to stay with either my son or daughter, or my sister in Liverpool. I’ll just have to sofa surf for a bit which isn’t going to help my back. All I can do is wait for the process to go through.”
A DWP spokesperson said: “Our sincerest condolences are with Ms Hailwood. Our aim is always to provide the best possible support to those who need it, which is why we pay Carer’s Allowance for several weeks after someone’s caring role ends.”
But ‘several weeks’ of carer’s allowance means little to a mum who is reckoning with the death of her child, nursing a broken body from decades of caring, and trying to enter a workforce that doesn’t want her.
“My mental health has deteriorated so badly. I’ve thought about taking my own life,” said Tracy. “I really want to raise awareness for families going through the same thing right now because all your benefits really do just stop when the person you’re caring for dies.
“I just didn’t realise there was very little support for carers of disabled adult children once they pass away. You’re just abandoned really.”
The Mirror has contacted the DWP for comment.