Libby Rose: Telford mother's heartbreaking tale of daughter's battle with bulimia
A year ago, Telford 16-year-old Libby Rose died after a long struggle with bulimia. Today her mother, Rosemary Westwood-Rose, has shared the heart-breaking story of how eating disorders destroyed her daughter’s life.
“It’s no one’s fault,” wrote Libby. “I love you so much.”
She sealed the letter within the cover of a chair in her bedroom, along with diaries chronicling her battle with bulimia.
It was the last letter in the collection. Days later, in the same room in that semi-detached house in Admaston, the 16-year-old died.
An A-grade student, Libby had the eating disorder for two years. It had torn her and her family’s lives apart.
Libby’s mum Rosemary has told her story in part to raise awareness of eating disorders, in particular bulimia, a near invisible but potentially lethal illness.
Early intervention, she says, is the key to combatting these diseases in young people. But she also wants a full public inquest, to see whether her daughter’s death could have been prevented.
Rosemary believes the case echoes that of Averil Hart, 19, from Suffolk, who died in December 2012 after her anorexia worsened while she was at university.
A report by the Parliamentary and Health Service Ombudsman found her death could have been prevented and an inquest is planned.
Rosemary, a nurse, wants an inquest for Libby to help prevent others going through the same thing.
“Libby was funny, she had a huge amount of empathy for other people. But she liked to challenge things,” said Rosemary from her front room where a sculpture of Libby and a cast of her hands sit on the fireplace.
She had initially found it difficult to make friends after joining Charlton School in Wellington from The Old Hall prep school aged 11, and often had her head in a book.
She eventually found a group of like-minded friends. But at age 14 things started to change. She became very self aware and felt she was larger than many of her friends.
She began self-loathing, and wanted to go on a diet.
“I thought I had this super clever child, that she’ll do the diet and feel a whole lot better about herself,” said Rosemary.
“I have always struggled with my weight and I thought she’d be like me, she’d gain and she’d lose and try diets like me. I didn’t know she would develop an eating disorder.
“I just saw my clever, smart, astute 14-year-old. Had I known then what I know now I would have stopped it then and taken a lot more control back.”
Libby finished the diet, but unbeknown to Rosemary she had moved on to a “clean eating” diet.
She was eating what appeared to be healthy meals. She lost more weight which Rosemary attributed to her losing “puppy fat”.
But people started to comment about Libby’s weight loss over the summer and Rosemary took her to a GP.
“She didn’t look ill, and because I saw her every day I didn’t notice it,” she said.
“She wasn’t wearing big baggy clothes, she wasn’t covering up and she was eating. I thought everyone was making a fuss and that I knew her better. But because enough people had mentioned it we took her to the doctor, and this was when she first entered the system.
“She had to take her top off and lie on the couch to have the ECG electrodes connected. It was at that stage I looked and I was really shocked. She didn’t look emaciated, but she was thin and I thought, ‘my God, how have I not noticed this?’.
“It was like someone had lifted the blinkers. I fell apart right there in the surgery. She admitted she had anorexia, but said she was going to stop.
“We came out and had a cry and she said ‘mummy, I’m going to stop this’ and asked for a Domino’s pizza for tea.”
Rosemary knew little about eating disorders at this point, but that night was, she later learned, the start of Libby’s battle with bulimia.
“I didn’t realise the huge impact of her having that pizza that night. It seems incredibly stupid now, but at the time I just didn’t know,” she said.
“I would start to find lots of food packets, but I still didn’t know about bulimia. I’d find the packets, clear them out and I would talk to Libby about sensible eating and not pigging out. Sometimes I got cross. But I just did not know what was happening.
“I’m a nurse, but I didn’t see any obvious signs of poor health.”
Libby’s personality change
On her return to school to begin Year 9 after the summer she got a lot of attention, with fellow pupils complimenting her on her slim appearance.
She had a boyfriend and seemed happy.
“She became a voracious shopper for clothes,” said Rosemary. “I know now she was always looking for something to help fight the battle. She couldn’t read any more because she couldn’t focus, and this was her keeping busy.
“She started buying so much food, I didn’t know. It would be eaten, vomited and then hidden. But the evidence became more and more obvious.”
By now Rosemary realised something wasn’t right, but says the GP was restricted because Libby’s BMI wasn’t low enough for urgent eating disorder treatment.
She was referred to child and adolescent mental health services (CAMHS) and placed on a lengthy waiting list. While she waited to be seen, things deteriorated.
When she did finally get seen by a team Libby failed to engage with them.
“At one point her case worker said ‘I don’t really know what to do’, and that is not enough,” says Rosemary, who felt isolated, with professionals unable to help either her or Libby.
“The eating disorder books were mostly about anorexia. But the same guidance doesn’t apply for someone with bulimia. How could I sit and say ‘Libby you need to eat’? Getting her to eat wasn’t the problem. That was the least of the problems. She ate non-stop, all the time.
“I couldn’t get any help, I didn’t know what to do. I locked all the doors and the windows once to try and keep her in, but she found a way out. I can’t think of a way I could have stopped her from binging and vomiting. By 16 she had her own bank account and I couldn’t stop that.
"She was also able to say to the doctor she didn’t want me involved any more.”
The sooner someone gets treatment for an eating disorder, the better their chances of recovery. Anyone worried about their own or someone else’s health can contact eating disorder charity Beat’s Helpline, 365 days a year, via phone on, email, anonymous one-to-one webchat or social media messaging here. Or call: Adult Helpline - 0808 801 0677; Studentline - 0808 801 0811; Youthline - 0808 801 0711.
Food became the cause of arguments, and the family even resorted to locking food in the garage where Libby couldn’t access it, at her own request at times.
“If you challenged anything to do with the eating disorder it was horrific. Life was hell. Living with it for the two years before she died was hell,” Rosemary said.
“Her BMI was still not low enough to fit the government guidelines for the GP to do anything. The doctor kept really close tabs on her. But Libby could manipulate it. If she was having bloods taken she would know what and when she would need to eat to skew things. She never did anything by halves. She had to be the best at this eating disorder that she could be.”
Libby would cook food after everyone in the house had gone to bed. Pizzas, cheesecake, chocolate cake, biscuits, chocolate and tubs of ice cream were all devoured.
“It got to the stage where I started to notice bottles of vomit in her bedroom," says Rosemary.
"What can you do when your GP can’t do any more, CAHMS are aware of it but they can’t do any more, I couldn’t get her referred anywhere. What could I do? All I could do was watch it and try and talk to her, try and solve it myself with no knowledge of how to stop it.
“One day I counted 27 bottle of vomit around her bedroom. Along her radiators, along her surfaces, some of them overflowing. All the professionals knew about this, I told everybody. They couldn’t do anything.”
Libby was taken to a private psychotherapist, but because she needed specific psychological input and they couldn’t give a timescale for how long that would take, the family could not get it covered through their medical insurance.
“She just ended up getting lost in the system,” she said. “Nothing happened for ages and during that time she just got worse and worse and worse. I was begging and pleading with everybody that we needed urgent help.
“Social services sent someone round, who it turned out was actually conducting a safeguarding assessment on me.
“I was furious, that wasn’t what I asked for. There was never any indication she was at risk from us. I was asking for help, and the only help they gave was to say ‘we’ve spoken to you, there is no safeguarding risk’. All I could do was watch my child binge and binge, and vomit and vomit.
“At one point I said ‘please if you’re going to do it can you just do it in your bedroom and not where it’s going to impact everyone else’. In hindsight I am absolutely ridden with guilt. I had no advice and nowhere to go.”
After going on holiday with her dad Ricky, who works for NATO in Brussels, and younger brother Alex to Miami, Libby came back looking grey and ill. Rosemary took Libby to the doctor. It was then that she entered hospital, then eating disorder clinic Newbridge House in Sutton Coldfield, from where she was discharged – Rosemary says it was too soon.
Five weeks later Libby died. The low potassium levels in her blood caused her heart to stop.
“The three days before she died were lovely,” says Rosemary. “Looking back at her letters she knew she was going to die and wanted to make everything right.”
Libby had got her GCSE results and had done extremely well. She wanted to celebrate.
“There was no evidence of purging. She wanted to go for food at the Apley Arms. I asked her how that was going to affect her and she said she’d be fine. The three of us had the best evening. We laughed and laughed. We sat in the car for about an hour, joking and laughing. It was the best night we’d had for years.”
The next day Libby said she had a cold.
“I have beaten myself up so many times over that. I wish I had rushed her back in. But I didn’t. Before she had always told me how she was ill,” she said.
The next morning Libby said she felt better and was looking forward to going into town to get her provisional driving licence.
“Before I left the house I hugged her and told her I loved her,” said Rosemary.
Rosemary returned later, and Alex went into Libby’s bedroom to ask if she wanted to join him on a dog walk. He found his sister dead.
“She was gone, I knew she was gone as soon as I got there,” said Rosemary.
“There was no warning. Her heart just stopped. Here we are 18 months later. It could have happened yesterday. The reality is that this is it forever. She’s never coming back.”
Libby was discharged from care too early, says mum
When Libby was in Princess Royal Hospital in Telford, Rosemary pleaded for Libby to go into an eating disorder clinic, and got support for that idea. Libby was assessed by staff from Newbridge, a specialist eating disorder clinic in Birmingham, to be admitted.
The NHS beds were full, but the family’s medical insurance allowed her to enter privately.
“I thought this was my one opportunity to stop this,” said Rosemary.
“Libby said herself she would not be able to control it at home. This was until the clinic gave her the brochure which said she wouldn’t be allowed her phone. She didn’t want to go anymore.”
Libby had to be sectioned in order to get her to the clinic and on learning this she ran.
“She was found by Shawbirch. She ended up having to be pinned down by six people and blue lighted to the clinic,” said Rosemary. “Once she got there, I thought these are the experts.”
Rosemary believes Libby was released from Newbridge too soon.
“They deemed her as being able to make decisions for herself because she was 16. And yeah, everything in her life she had the capacity to make decisions about, except her eating disorder," said Rosemary
“They started talking about a discharge date and I started saying ‘you can’t, don’t discharge her’."
Twice in the few weeks after discharge Libby was admitted to hospital with low potassium levels.
“At the point I contacted Newbridge and CAHMS and told them I needed their help and that she was going to die,” said Rosemary.
There was a multidisciplinary team meeting between various health professionals, Libby and Rosemary. Rosemary insisted her daughter needed sectioning again.
But Rosemary says nothing was done. Three days later Libby died.
Newbridge House has issued this statement: “We want to express our sincere condolences to the family of Libby Rose. We support the principle of raising awareness of eating disorders to support early diagnosis and treatment of this complex, devastating mental illness.
“We are unable to comment on a patient’s care that may be subject to an investigation. Investigations by the Care Quality Commission and the Coroner’s Court have been completed and were concluded without actions required. Although we plan and prepare very carefully for discharge and have close links with community teams, schools and services, we do not manage the care of young people after they leave Newbridge House.”
Care givers respond
Clive Jones, Telford & Wrekin Council’s Director of Children’s and Adult Services, said: “This is a very tragic case and our sympathies are very much with Libby’s family.
“Eating disorders among young people are increasingly prevalent.
“We worked appropriately with partners of relevant health organisations, Libby and her family throughout the time that we were aware of Libby’s situation.”
Cathy Riley, managing director at Midlands Partnership NHS Foundation Trust, which took over from the South Staffordshire and Shropshire NHS Trust which ran CAMHS said: “I would like to express my deepest sympathy to the family of Elizabeth (Libby) Rose. Following Libby’s death a clinical review was ordered by the Trust, as would be the case with the unexpected death of any patient or service user who had been under the care of our services, and Libby’s family were given the opportunity to participate in this process. This review was completed and shared with Libby’s family earlier this year.”
Christine Morris, Executive Nurse & Deputy Chief Officer at Telford & Wrekin Clinical Commissioning Group said: “Telford and Wrekin Clinical Commissioning Group (the CCG) would first like to express our deepest sympathies to Libby’s family.
“The CCG is responsible for commissioning (buying) health services on behalf of the local population through NHS contracts. Our role is to ensure the quality and safety of these services is paramount.
“We take cases like this extremely seriously. The tragic events leading to Libby’s death have been reviewed as part of a multi-agency safeguarding panel. In addition, the CCG undertook a separate investigation, as for all unexpected child’s deaths, to ensure any learning and actions in response to recommendations can be taken."
