Nikki Grahame’s death exposed a fractured care system failing people with anorexia

Nikki Grahame was just shy of eight years old when her mother Susan noticed the first signs of an eating disorder. It had been a difficult time for the family; her parents were on the brink of divorce, her grandfather had been diagnosed with terminal cancer and their dog of 18 years had recently died. “I noticed Nikki had become quite solemn. She never smiled; she was never happy,” Susan tells Channel 4 in a new documentary Nikki Grahame: Who Is She? “At the age of eight, she had the entire weight of the world on her shoulders.” Shortly after, Grahame began refusing food, and mealtimes became a challenge. She was later diagnosed with anorexia nervosa, a serious mental health condition that she struggled with until her death on 9 April 2021, aged 38.

The documentary, named after one of many quotable lines Grahame delivered while retreating to the Big Brother diary room during the show’s seventh season, sees her friends and family describe her as one of a kind, special and loyal. On television she was a tornado of energy, blaringly honest and funny, all the while quietly struggling with a tormenting condition.

People who suffer from anorexia severely limit the food they eat, and many develop “rules” around what they feel they can and can’t consume, says eating disorder charity Beat. Mandy Saligari, an addiction therapist who worked with Grahame, describes this behaviour as a “defence against vulnerability”. She says in the documentary that, “fundamentally, anorexia is ‘I will control something that I can control because I feel out of control of something that really matters to me’.”

While anorexia nervosa is estimated to account for just eight per cent of all eating disorders, it has the highest mortality rate of any mental health condition in the UK today. Despite the seriousness of the disease, funding and treatment options in this area are severely lacking and those struggling with the condition can face barriers at almost every level of care. In part, this is perpetuated by a general lack of awareness about the condition and lingering stigma that wrongly prescribes physical attributes to a mental health illness.

As the condition can – in some cases, but not all – have stark physical effects on the body, this has led to harmful stereotypes surrounding the disorder. “There’s this perception that unless you’re really gaunt, you can’t have anorexia and that’s absolutely not the case,” Tom Quinn, director for external affairs at Beat tells The Independent. “But if you’re only looking for physical symptoms, it will often take a long time for those to manifest themselves,” he adds. “Yes there are physical consequences, but it is ultimately a mental illness and therefore you can see the behavioural signs a lot quicker.”

Under National Institute for Health and Care Excellence (NICE) guidelines, a person’s physical appearance is one of 14 factors GPs should look for when assessing an eating disorder. Other factors include social withdrawal, avoiding mealtimes, anxiety and depression. It also states that single measures such as BMI must not be used to determine whether to offer treatment. Yet experts say the chances of a patient’s needs being appropriately met by a doctor are somewhat of a “postcode lottery”.

Quinn says this weight-focused approach sends a harmful message that people need to make themselves physically worse in order to get treatment. This was the case for Emily-Beth Roscoe, 25, who first visited her doctor in 2011 after her mother noticed a change in her behaviour and weight. Roscoe had been struggling with panic attacks and anxiety but her GP refused to refer her for help, telling her that she was of healthy weight for an adolescent girl and her mental health was likely an effect of a change in hormones. “But in the mental state that I was in, all I heard was ‘well then, so I need to lose more weight’,” Roscoe says.

According to a 2018 study of medical schools across the UK, less than two hours are spent teaching eating disorders to students. This was reflected in a recent BEAT survey, which found that 58 per cent of people felt their GP did not understand their eating disorder. Many participants said their GP made “flippant” comments, one said they had been dismissed because they “didn’t look ill” and four were recommended to “go home and eat a Mars bar”.

Other people with experiences of anorexia share similar stories. Hope Virgo, 31, who was first hospitalised with anorexia as a teenager, recalls being turned away from her GP in 2016 after she relapsed. “I didn’t qualify for treatment because I didn’t hit the threshold for BMI even though mentally, I was in a really bad place. As soon as you get turned away from services, you feel like this fake anorexic. I felt so much shame and guilt that I had tried to access treatment, only to be told ‘You’re not thin enough and we can’t do anything for you’.”

Kim Marshall, 46, was similarly refused treatment from her GP. She says the experience further compounded her denial that she was sick and in need of help. “If an expert is telling me that there’s not a problem, then maybe that voice in my head of self-hatred and self-criticism was right all along. But then you end up doing the only thing you think you could do in order to be taken seriously and validated – you restrict even more, and the eating disorder becomes even more ingrained.”

There are also widespread misconceptions about who is most affected by eating disorders like anorexia. A 2019 survey by Beat found that 39 per cent of the public believe the illnesses are more common in white people, while 48 per cent of black and ethnic minority individuals said they would not feel comfortable seeking help from a health professional for an eating disorder. On average, people from ethnic minority backgrounds and men also wait longer to be referred for treatment, Quinn adds.

These perceptions can have devastating consequences. In October 2020, analysis of NHS data by The Guardian found that hospital admissions among ethnic minorities rose by 53 per cent from 1,115 admissions in 2017-18 to 1,702 admissions in 2019-20. Admissions among white people increased by under a third, from 13,340 in 2017-18 to 17,467 in 2019-20. Experts said the change suggested that ethnic minority patients are not receiving timely treatment, and were ending up in hospital as a result.

Rebecca Quinlan, 33, who is currently in recovery from anorexia and has spent time in three in-patient facilities, offers a stark example of how a failure to understand the real nature of anorexia can traumatise patients. In 2010, she was admitted to St George’s hospital in London for three weeks, as her condition was too critical to be treated by an eating disorder unit. Here, she says she was placed on total bed rest and wasn’t permitted to shower. After two weeks of begging, she says was eventually given a bucket of soap and water to wash herself with from her bed. Quinlan later requested her care records, which she says stated: “Rebecca keeps asking to have a shower but we have told her showers are rewards and privileges that you have to earn through good behaviour and compliance.” In response, a spokesperson for St George’s hospital told The Independent: “Patients admitted with severe anorexia nervosa are often put on total bed rest initially due to their extreme high risk of heart rhythm disturbance or dangerously low blood sugar and this is to protect them in their recovery.”

The myopic focus on weight when it comes to anorexia also underpins care in some eating disorder inpatient units, which can have a detrimental impact on a person’s progress. Quinlan says the staff at one unit described the treatment as a “weight-gaining programme”. She was monitored for three meals and three snacks a day and received one hour of therapy a week. The rest of the time she was left to her own devices. She spent most of this exercising in her bedroom. “They would just say, ‘Oh, that doesn’t matter. If she exercises more, we will just feed her more’,” she recalls. Quinlan says the institution’s fixation on her weight caused her to think about it even more. In turn, her anorexia grew stronger, and she readopted old unhealthy habits like hiding food. Despite her poor mental state, she was discharged after one year as she had reached a target weight. “The staff knew everything that I was doing, but it was a case of ‘well you are at the weight that you need to be, see you later’,” she says.

Experts believe this approach to treatment fails to see the “bigger picture”, and is in part to blame for low recovery and high relapse statistics. According to Beat, just 46 per cent of anorexia patients make a full recovery, while 33 per cent improve and 20 per cent remain chronically ill. Saligari estimates that by the time of Grahame’s 18^th birthday, she had been treated in 17 different eating disorder institutions. “Clinical services are just monitoring medical risk,” says Gemma Oaten, manager of SEED Eating Disorders Support Service. “They’re just focused on the physical. People aren’t getting the support that they need mentally, which is the whole key to helping somebody who’s got an eating disorder, so it’s just a perpetual vicious circle.”

Another factor making recovery so difficult is that people who remain in in-patient centres for prolonged periods become “institutionalised” and struggle when faced with the real world again. Carly Cunningham, who became a close friend of Grahame’s after the pair met at an inpatient unit as children, says in the documentary that some of her most famous outbursts on Big Brother were similar to her behaviour in treatment. “In an institution…you can react in really extreme ways because there is no normal to bounce against,” Saligari explains, adding that this left Grahame set up to remain a child. “Think about everything we all do between eight and 18, she was robbed of that.”

Suzanne Baker, a carer representative for the Faculty of Eating Disorders at the Royal College of Psychiatrists says the transition from in-patient care to rejoining the community is “too big a jump”. After leaving an in-patient facility, most people are assigned to a local day-patient service, which they visit once or twice a week to meet with a therapist and get weighed. Quinlan recalls returning to a world she didn’t recognise; her friends had completed university and moved on with their lives, while she had endless days filled with nothing. In a bid to find purpose, weight loss became her focus again and she soon relapsed. “There needs to be a whole integrative pathway of day-patient community care,” Baker says. “You need to step down from in-patient care to maybe a daily eating disorder service, where you can go and have your meals there, and you can have therapy and take part in group activities.”

SEED is urging healthcare services to adopt a more holistic approach to care which reflects each patient’s individual needs, and gives them opportunity to develop healthy ways of coping with their emotions. “The majority of positive comments we get at SEED, they say we saved their lives because we gave them time,” Oaten says. “We spoke to them as a human being and we listened to their needs. And there was no criteria,” she highlights. “There was no food diary, no looking at calories. We looked at them, and how they were feeling.”

Two weeks before her death, Grahame was admitted to Dorset County Hospital after collapsing in a nearby pharmacy. Her anorexia had intensified during lockdown and her physical health had severely deteriorated. In a voice recording on 7 April 2021, shared with Channel 4, Grahame said she wanted to get well. Her death, the devastating loss of someone brilliant and much-loved, highlights an inadequate care system that is failing anorexia patients. Grahame checked all of the boxes; she was a white woman, her BMI was critically low and she was open to receiving treatment. She bypassed the barriers that many people face to getting care, and she received treatment at more than a dozen institutions, and yet, she’s not here today.

Xural.com