Emma Brown: My daughter's anorexia was a 'descent into hell'

Emma Brown battled anorexia for more than half her life, spending years in and out of hospital until she died from complications of the disorder at 27. Her father, Simon, describes the pain of watching his eldest child's struggle - and why he is working with those who handled her care.

At one point, Emma was stealing thousands of pounds from her father, spending the money in her favourite restaurants - Zizzi's, Eat and Yo! Sushi.

It was not about living a luxury lifestyle: driving her behaviour was a debilitating eating disorder that eventually cost Emma her life.

"I probably single-handedly funded the development of restaurants in Cambridge," said Simon Brown, half-jokingly. "She'd spend maybe £200 a day going from one to the other."

No longer able to bear the financial burden of Emma's persistent spending, they eventually made a decision few parents could imagine having to make: going to the police about their child.

"You've got a daughter who's a criminal and you've been the one that's reported her - there's a sense of betrayal in that," said 56-year-old Simon.

Emma was struggling. She had a type of anorexia known as binge-purge and was starving her body of much-needed nutrients. She battled the condition for 14 years and had "countless" admissions to hospital which, towards the end, developed into a weekly pattern.

"She would be admitted by ambulance to Addenbrooke's Hospital on a Friday night and go on to a ward where they'd pump her full of potassium," said Simon. "She'd start to feel a little bit better by the Sunday, she'd self-discharge on the Monday and then the same thing - repeat, repeat, repeat."

Emma had what her dad calls a "special" upbringing. Born in the Zimbabwean capital Harare in 1991, she could name all of the animals in the African bush aged 18 months. Simon said she was always a "force of nature" - very articulate from an early age - and has a vivid image of Emma as a one-year-old singing happy birthday to him in her chair.

She excelled at school when the family moved to the UK, to the point she was sometimes becoming bored because it was too easy for her. A keen skier, snowboarder and BMX biker, she was something of a "tomboy", who by the time she went to high school was being teased for her "puppy fat".

"That's when things really started to fall apart for her," said Simon."For somebody who was not fussy and actually quite interested in food, and had lived and travelled and experienced a range of food, to suddenly see her be very restrictive with what she ate sounded alarm bells.

"By the August she was diagnosed as anorexic."

Anorexia is an eating disorder and serious mental health condition. People with anorexia try to keep their weight as low as possible, which can make them very ill because they start to starve.

Signs and symptoms of anorexia in females include periods stopping or, in younger women and girls, not starting. Physical problems can occur, such as feeling lightheaded or dizzy, hair loss or dry skin.

Factors increasing the likelihood of anorexia include a family history of the illness or being criticised for your eating habits, body shape or weight.

There are two main sub-types - restricting and binge-purge - and there can be crossover between the two. In one seven-year study, more than half the women involved moved from restricting to binge-purge.

Source: NHS/Beat

Simon believes Emma's diagnosis at 13 could have been the start of her recovery. Instead, it was a "descent into hell".

"During this period the restriction on food got to the point where she wouldn't take any food at all and we were having to give her water through a Calpol pipette. She was too weak to walk upstairs so she would be lying on the sofa or we would carry her up to bed. This active, sporty, beautiful child descended to the point where she was an utter mess."

Emma was placed in a queue for a bed in a unit for treatment while Simon and her mother, Jay, cared for her at their home in Great Grandsen, Cambridgeshire. Simon said they pleaded for help, but were told there were always patients in a more desperate state than Emma.

In recent years the government has increased funding for community eating disorder services, so children and young people do not have to be in hospital to receive care. But back in 2004, Emma's family never received a home visit from a specialist. Instead, Simon said that they were given general advice - "none of which works because you're up against something far more complicated".

"It's almost indescribable how difficult that was. You've got two other kids that you're trying to look after, you've got jobs that you're trying to hold down and you've got a child who's every day getting closer to dying in front of your eyes."

It was not until she was "almost at the point of death" that in the December - four months after diagnosis - she was admitted to the Phoenix Centre in Fulbourn.

The signs seemed positive at first - Emma restored her weight to safe levels, was discharged from hospital and returned to school. But without community care, old habits returned and with them, the "recurring nightmare" - a cycle of illness, hospital admission, discharge, then decline.

Because she was constantly in and out of school, the gifted artist and runner, who might have had Olympic potential, could not live up to her A-star predictions. Emma was never well enough to sit an exam and left school without any qualifications, then struggled to hold down a job, mostly working in hotels or restaurants.

Emma's anorexia was further complicated by a diagnosis of a personality disorder at 18, which led to an admission to a mental health unit. Simon said it went some way to explaining his daughter's tendency to take risks, steal, "show off" and even the more violent acts, like throwing knives at her family.

By then an adult, Emma went through a period of sleeping rough before moving to a flat in Cambourne. In between were numerous hospital admissions - some short, the longest nearly two years in a unit in Surrey. When she was at home in the final years of her life she relied heavily on the two three-hour home visits a week from support workers.

Though her illness could be hugely debilitating, even at the low points her personality still made a lasting impression on others.

"One woman commented quite recently on Facebook about what an incredible person Emma had been to her [in a unit], how she taught her, how she'd helped her," said Simon. "She would get very involved in the other patients because that's what she was like. They loved her."

In early 2018, her emergency admissions to hospital increased, culminating one day in June, when doctors told Simon his daughter would not make it through the night.

"I spent the whole night with Emma, holding her hand and talking to her. At one point she said to me, 'Daddy, I don't want to die'. I said to her 'but you are dying and the only way to stop dying is to take on the nutrition the doctors have been telling you to for some time and even then it might not happen'."

"That was on the Friday night into the Saturday morning - and she recovered. We're there on the Monday morning when the doctors are coming back, all expecting her to have passed away over the weekend, absolutely flabbergasted she's sat up drinking one of [her nutrition shakes] saying ,'hey, how was your weekend?'.

"But even after that she couldn't actually do it and sustain that recovery."

Two months later she was found dead on her bathroom floor by her mum, aged 27. She had suffered pulmonary failure and a cardiac arrest, associated with the anorexia. The impact on the family has been wide-ranging, but none of them has used it as an excuse to "fail in life", said Simon - quite the opposite.

Simon and Jay, who split up in 2013, have excelled in their careers. Emma's sister Eden got a first-class degree in psychology "inspired by trying to understand her sister", while her brother, Jordan, who gave police evidence against Emma and took refuge at a neighbour's house when she was at her worst, is now a talented surfer, sailor and rock climber in his final year of university.

"We could have just given up on careers or hopes in life at any point because we had the excuse of Emma and what we went through," said Simon. "But we didn't and I think actually by using it as a drive to be better, we've each learned from this and got stronger from it."

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After 14 years of turmoil, one might expect Simon to feel anger to those involved in her care. But he has none. On the contrary, he is grateful for every person involved in Emma's care and even invited doctors to her funeral.

"I don't know where they [the professionals] find the drive, the skill, to keep going back," he said. "You're not that well supported, you're under-staffed, under-budgeted, the patients hate you, the parents blame you, there's not enough money and actually we don't yet really know how to treat these people anyway.

"Why would anybody do that? Who am I to find blame in the people that have devoted their professional lives to trying to help people like Emma?"

Regardless, Emma's death is set to be examined by a coroner next year along with four other cases, including that of 19-year-old Averil Hart.

Simon is already working with the Cambridgeshire and Peterborough NHS Foundation Trust (CPFT) and wants to see professional training for families - "people like myself who have the time, motive and opportunity to do something with these sufferers where the waiting list for doctors is too long" - to help support their loves ones through the illness and recovery.

He also wants to see engagement with schools to prevent triggers of the illness, such as bullying, and feels funding needs to be increased or shifted away from just those in hospital beds.

A report commissioned by NHS England in 2015 found the availability of community eating-disorder services improved patient outcomes and cost-effectiveness. In Cambridgeshire, the trust provides community eating disorder services and specialist in-patient services for children and adults.

Simon suspects millions were spent on his daughter's treatment "most of it when she was in crisis and almost nothing when she was in recovery".

"That's what we've got to change."

Addenbrooke's, which is run by the Cambridge University Hospitals NHS Foundation Trust, said it would be "inappropriate to comment at this time". A spokesman for CPFT added: "We are committed to the development of eating-disorder services and would like to thank Simon for the helpful and constructive feedback he has given to help us, and other trusts, about improving services for people with anorexia."

If you are affected by any of the issues in this story, you can talk in confidence to eating disorders charity Beat by calling its adult helpline on 0808 801 0677 or youth helpline on 0808 801 0711.