Published: 06:00, 13 February 2020
Hayley Smith, who battled the eating disorder for 15 years, weighed less than four stone at the time of her death, aged just 27.
A lack of nearby facilities led to her receiving treatment more than two hours away in Ipswich – before her family say she “came home to die” at Christmas.
Now, her mum and sister are raising awareness of the need for better care for long-term sufferers.
Hayley’s fight with anorexia nervosa began when she was just 12.
“It’s an illness that never gets picked up on straight away,” explained Hayley’s sister Jenny, 24. “It starts off as skipping meals, and then gets more serious.”
As a child, Hayley was sporty and academic – an A* student who received a black belt in karate at the age of 11.
But her mum, Ann, explained how her low body image meant she would look in the mirror and “not see what we were seeing”.
“She’d think she was huge,” added Jenny. “And that says something – it shows that it really is a mental illness.”
“It’s heartbreaking,” said her mum. “We tried to encourage her to get her life back. So much of her teenage years, she was in and out of hospitals.”
During her stays, Hayley’s bright, caring personality and indomitable spirit had a big impact on those around her, and she forged lasting friendships with other patients.
“She helped other people with their eating disorders - she had a beautiful heart,” said Jenny. “But she couldn’t help herself.”
In September 2019, Hayley was moved to The White House – an eating disorder rehabilitation centre based in Ipswich.
Ann, who does not drive, says travelling the 120 miles to see her was a struggle.
“Obviously then you get depressed because you feel like no one cares and it’s so far,” added Jenny.
“She was very low in Ipswich. Maybe she was giving up on herself. I think she knew her body was giving up.”
When Hayley returned home to Heath Close in Sturry just before Christmas, her condition had deteriorated.
“We hadn’t seen her in eight weeks and when I picked her up she could hardly walk,” recalls Jenny. “She had no hair left, she was very weak. I think she’d had enough. She used to sometimes say she couldn’t keep fighting any more.”
Deeply worried, they called an ambulance the following day, but Hayley perked up after being given glucose.
On Christmas Eve, her condition worsened.
“She was in bed all day, a bit delirious,” said her mum. “We managed to get some sugar in her but it didn’t do a lot. Her brother was trying to get her to eat something. She was very disorientated.”
Hayley was taken by ambulance to the QEQM hospital in Margate, but despite her extremely fragile state, was not seen by a doctor.
“The glucose kicked in, and because she didn’t want to be at the hospital, she didn’t see a doctor,” said Ann. “They did her blood pressure, and they said because she had capacity they couldn’t stop her from going.”
Sadly, by the next morning, Hayley’s condition was far worse.
“On Christmas Day, we walked in to wake her up and she wasn’t breathing,” recalls Jenny.
"Her feet and hands were giving up. She'd have had to have them amputated..."
Hayley was blue-lighted to the QEQM, but suffered two cardiac arrests in the ambulance, and was rushed to intensive care.
"The doctor said that if Hayley did survive, she’d have no quality of life," said Jenny. "She went without any oxygen and that created chance for brain damage.
"Her feet and hands were giving up. She’d have had to have them amputated. A lot of people have anorexia, but people need to be aware of the damage it will cause in the long-run. Her hands and feet were just going purple."
Hayley sadly died four days later, on December 29. An inquest opening last week was told she died as a result of hypoxic brain injury due to a cardiac arrest.
“She was a fighter,” said her mum. “She was battling with the illness so hard and for so long, but she doesn’t have to fight it now. She’s at peace.”
Hayley’s family says there is a serious lack of facilities in Kent for people battling chronic eating disorders, forcing long-term patients to receive treatment many miles away from home.
“Hayley was failed,” said Jenny. “Everyone says there’s not enough down here to help people and to help families. There’s just nothing, and Hayley was sadly let down.”
Her mum added: “It isn’t right that you should be sent far away from your families, because that’s who you need.”
Ann and Jenny plan to launch a petition calling for better local services, and also hope to raise greater awareness of eating disorders.
“There’s not enough known about it,” said Ann. “People would say, ‘Oh, you should just make her eat’ but it doesn’t work like that. “It isn’t something that you can do at home – you do need professional help.”
"With the right support, Hayley could have still been saved from this. It didn’t have to kill her..."
They advise anyone who believes they, or somebody they know, may have an eating disorder to speak out.
“Talk,” said Jenny. “Tell a friend. Just talk to somebody, before it’s too late.”
Katie Stewart, who first met Hayley at a support group a decade ago, says she was “an amazing, brave fighter”.
“She was so thoughtful and generous, wanting everybody else to be happy,” said Katie, who has overcome an eating disorder. “She would give the clothes off her back, but never believe she deserved it herself, sadly.
“She fought this for so long. There were periods where she felt like giving up but she kept battling.
“She really is evidence of how eating disorders rob someone of their life. At one point, she started a health and social care course, and started working in a fashion shop in Canterbury during one of her better periods.
“She had so many hopes and dreams, that it took from her. She wanted one day to have children, to have a relationship - but the illness would just creep back in again and rob her of it. It stole her life.”
As a survivor herself, Katie has first-hand experience of eating disorder services in Kent, and agrees that more should be done.
“I think she was let down by the services,” she said. “Kent is particularly bad as there is no in-patient unit at all.
“One of the big stumbling things for Hayley – and one thing most places advocate as an important part of care – is interaction with family.
“It’s needed to make the transition between hospital and home more successful. When you take that away and stick Hayley in somewhere like Ipswich, there is no possibility of doing half-days at home.”
Katie feels things could have turned out differently for Hayley, had better services been available nearby.
“Early intervention is important too – but you can’t take away the support that is needed for the people early intervention is already too late for,” she said.
“I don’t believe anorexia is a terminal illness. With the right support, Hayley could have still been saved from this. It didn’t have to kill her.”
A spokesman for NHS England responded, saying: “Patients with an eating disorder are treated in either community setting or as inpatient depending on their individual needs.
“Currently, adult patients from Kent who require inpatient services are treated in units based in South London. The NHS Long Term Plan outlines a new model of care being introduced in April next year, which will ensure that local organisations working collaboratively will provide eating disorder services more locally.”
A spokesman for East Kent Hospitals, which manages the QEQM, said: “We would like to offer our heartfelt condolences to Hayley’s family for her sad death.
“We are sorry to hear her family have concerns about her treatment and we would welcome the opportunity to discuss these with them.
“If people are able to make their own decisions about their care, we offer them the best advice. They are, however, free to leave the hospital if they choose to.”
Charity Beat estimates about 1.25 million people in the UK have an eating disorder.
Although many such conditions develop during adolescence, they have been known to affect children as young as six, as well as people in their 70s, while anorexia has the highest mortality rate of any psychiatric disorder.
Beat advises anybody who feels they may have an eating disorder to make an appointment with their GP.
The Beat Helpline is available on 0808 8010677 for support and information. Visit www. beateatingdisorders.org.uk.
More by this authorLydia Chantler-Hicks