On eating disorders, it's time to stop talking and start acting
In the UK, many people are missing out on potentially life-saving treatment because of chronic underfunding and stereotypes about sufferers
Earlier this month, former ‘Big Brother’ contestant Nikki Grahame died shortly after being discharged from hospital, where she had spent three weeks being treated for anorexia.
Grahame left hospital on a Friday. She was due to enter an outpatient clinic to continue her treatment after the weekend. Within 24 hours, she was dead.
At 38, Grahame had suffered from anorexia for three decades. Given the devastating toll that anorexia can have on the body and mind, it is almost impossible that she could have made much meaningful progress during her brief stay. But as the Labour MP Olivia Blake recently noted in a letter to chancellor Rishi Sunak and health secretary Matt Hancock, demand for beds for eating disorder patients far outstripped capacity even before the pandemic. For adults especially, this has meant that they are often left to fend for themselves.
Eating disorders are among the only illnesses – mental or physical – which can see doctors wait until the last minute to offer treatment. Though they are regarded as conditions under the mental health umbrella when it comes to budgets and resources, eating disorders can manifest deadly physical symptoms. Yet they are often treated inexpertly at home, if at all.
A petition set up in February by Becki Copley, a campaigner who started a support group for eating disorder sufferers, is demanding more funding for care, more inpatient beds, and more training for medical professionals. Since Grahame’s death, signatures have quadrupled. There’s still a long way to go.
In 2019, 16% of UK adults screened positive for a possible eating disorder. According to the eating disorder charity BEAT, anorexia has the highest mortality rate of any psychiatric illness, yet NHS provision for eating disorders is woeful. While CAMHS, the mental health service for children and young people, requires that 95% of children and young people with eating disorders begin treatment within four weeks, there is no such requirement for adults.
Phrases like “asking for help is the hardest step” are often batted about online. But for eating disorder sufferers, that honesty can precede years of fighting for effective treatment. The likelihood that someone will receive any such treatment depends heavily on factors totally unrelated to the severity of their illness, such as where they live.
Between 2000 and 2018, the number of available beds for psychiatric care in the UK fell from 54,117 to 24,523. At the same time, demand for beds for people who suffer eating disorders has risen sharply, quadrupling between 2007 and 2017.
A 2017 report by BEAT, an eating disorders charity, found that the average gap between someone becoming unwell and receiving treatment was three and a half years, with the delay greatly reducing the likelihood of a positive outcome. Much of that time is due to the fact that it can take a long time for people to even realise they have a problem, and even longer to seek help. But when someone does make it to the doctor, they are still likely to be kept waiting.
Only 14% of people are referred within four weeks of their first GP visit, and 25% are referred to non-specialist services. Better training for GPs and other members of the community, such as school nurses and university support services, to help recognise the signs of a problem could help to cut down that delay in diagnosis. More early interventions, such as evidence-based therapies and outpatient treatment, would relieve the reliance on last-resort services, which often require people to wait to become ‘sick enough’ before admission.
Between 2000 and 2018, the number of available beds for psychiatric care in the UK fell from 54,117 to 24,523
As it stands, the likelihood of receiving treatment at all varies widely according to where you live. People often find themselves pushed further down the list, to make space for the most critical cases. At one eating disorder centre in Oxford, in any given week, 24 eating disorder patients are waiting for a bed in an inpatient unit. In Buckinghamshire last year, the waiting time after a referral for treatment was 25 months. Staff are similarly scattered: in 2018, there was a ninefold difference between the highest and lowest staff-to-patient ratios in wards nationwide. COVID-19 has reduced capacity further still, even as the pandemic exacerbates many people’s mental health problems.
According to Grahame’s mother, the stress of gyms closing and the “terminal loneliness” of lockdown amplified the effects of the illness that dominated her daughter’s life. Grahame’s experience has been echoed by many others, who worried about the availability of their ‘safe’ foods (those they feel they can consume with the least guilt or stress), or felt that buying food at all was ‘selfish’.
The near-constant public discussion of weight gain during lockdown also contributed to people’s anxiety.
Data published in February showed a 128% increase in the number of children and young people waiting for routine treatment for eating disorders compared with last year. But even those who eventually receive inpatient care may face dangerous inadequacies.
In 2020, the Guardian revealed that 12 eating disorder sufferers in seven years had died due to failings so severe that coroners in England and Wales “issued legal warnings to hospitals to try to prevent further deaths”. Cases included a 17-year-old girl “so underweight when she was admitted [...] that she was ‘too ill to survive',” a university student who died by suicide, “after being treated in a place where staff had no specialist knowledge of anorexia”, and a 21-year-old student who had to travel from Kent to west London due to a lack of beds, who died by suicide on home leave from the private facility run by Cygnet Health Care.
A university student died by suicide 'after being treated in a place where staff had no specialist knowledge of anorexia'
The article noted that the 12 deaths constituted only the most extreme cases where care fell short. The figure does not account for deaths described as the result of “high failings” or “avoidable tragedies”. Too often, these tragedies are a result of substandard treatment, in under-staffed NHS wards.
Shortages of funding to build and adequately staff NHS beds have also resulted in an over-reliance on private hospitals, which have been funded by the NHS to provide around half of all children and adolescents mental health beds in recent years. Pippa McManus was 15 when she killed herself five days after being discharged from the Priory hospital in Altrincham, Greater Manchester, following treatment for an eating disorder. The inquest found the hospital's care plan was “inadequate”.
At the time of Grahame’s death, a GoFundMe page set up to raise money for her for private specialist care, which costs about £25,000 per month, had raised over £69,000. But Grahame never made it there.
The mortality rate for anorexia increases with time, at an estimated 5.6% per decade, with the prognosis worsening after the first three years. Over time, it can cause the body to break down its own tissue – including that of muscles like the heart – interrupt normal hormone production, decrease white blood cells, starve the brain, experience seizures, and eat away bone marrow. But the less responsive a sufferer appears to be to treatment, the less likely they are to be offered any again. It’s a vicious cycle that too often ends in a jarring full stop, and little is being done to change it.
Myths and misconceptions
The NHS Long Term Plan, a scheme announced in 2019 that aims to make the NHS “fit for the future”, promised funding for children and young people's eating disorder services, but said nothing about adult provision. Most doctors receive less than two hours of training on eating disorders. This means that GPs looking for a diagnosis can sometimes fall back on stereotypes of waif-like teenage girls whose predominant symptom is severely low weight. But people of all sizes, ages and genders are affected by eating disorders, any of which can be incredibly dangerous.
Long-term bulimia sufferers, for instance, can wear down the oesophagus, causing it to rupture. The depletion of potassium through repeated vomiting can cause irregular heartbeat and death. Binge-eaters can suffer life-threatening stomach perforations, and insulin resistance that leads to diabetes. Higher-weight sufferers can develop sleep apnoea, which hinders breathing. One person can exhibit multiple conditions, and the more manifestations their eating disorder has – the above list is far from exhaustive – the greater the risk to their life. It is impossible to tell how severe that risk is just by looking at someone.
For the best chance of recovery, people need to receive treatment as soon as possible, without the early discharges or interruptions in care that increase the likelihood of relapse.
Without drastic change, many more tragedies like that of Grahame are inevitable. Community initiatives like Copley’s petition are battling for attention at the tail end of a pandemic that has seen empathy fatigue hit new highs. The petition urgently needs thousands more signatures (just as other campaigns need widespread support), if it is to have a hope of making a difference.
For help or advice on dealing with eating disorders, visit BEAT
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