They have also revealed Nikki’s ‘desperate struggle’ to get treatment over the last six months, during which time she was discharged from hospital twice while severely unwell, on one occasion weighing just three and a half stone – the equivalent of a seven-year-old child.
The last time she was discharged, on Thursday April 8, she weighed less than five stone. Just 12 hours later, she was dead.
‘If she hadn’t have been discharged, I think she’d still be with us today,’ said one friend who has been closely involved with her medical case over a number of years.
‘There are questions that need to be answered. Nikki really wanted help – she was desperate to get better, she was even eating full meals in hospital.
‘But she never quite managed to get the consistent care she needed.’
Tragic Big Brother star Nikki Grahame was the victim of a series of NHS care failures that led to her ‘entirely avoidable’ death from anorexia, those closest to the 38-year-old have claimed
Fragile fame: Nikki with her mum Susan at a party soon after her stint in the Big Brother house
Experts say stories like Nikki’s are ‘not uncommon enough’. They speak of a ‘revolving door’ in which patients are discharged, often ‘too early’ and without adequate support, only to end up back in hospital, far sicker than when they started.
‘We know people are falling through the cracks,’ says Kerrie Jones, NHS eating disorder psychotherapist and chief executive officer of Orri – a private day treatment centre.
‘I see too many who go from having round-the-clock intensive care for six months to virtually nothing in a matter of weeks.
‘We call them revolving door patients – they don’t get consistent treatment in the community, which is crucial for long-term recovery.
‘Inevitably, they end up spiralling and land back in hospital again.’
Nikki, who stole the nation’s heart with her effervescent and girlish charm on the 2006 series of Big Brother, suffered bouts of anorexia – the deadliest eating disorder – from the age of nine.
Until recently, friends say, her condition was relatively stable. She was pursuing a new career in teaching and was taking courses in English and science.
But her illness returned during lockdown. In an interview last month, her mother Susan described the ‘terminal loneliness’ that consumed her daughter, who lived alone though friends speaking to this newspaper said it was ‘more complicated than that’.
Student Averil Hart, 19, who died in 2012
Whatever the cause, it resulted in a relapse last summer. Nikki was under the care of an NHS eating disorder service in Central London, part of the Central and North West London Foundation Trust ‘for several years’, according to a friend.
Appointments with psychiatrists and dieticians provided by the service were ‘irregular’. Around June, Nikki began to lose weight.
‘She’d struggled with erratic eating habits and excessive gym-going for years, but it was relatively well managed because she knew she had to stay well in order to keep working in the public eye,’ says a close friend.
‘But when lockdown hit and she spent more time alone, it gave her an opportunity to focus on her disordered habits, while also hiding it from others. I’d seen this behaviour in her before. It was seeded before lockdown, but the isolation spurred it on.’
She was around 5½st – at 5ft 1in, severely underweight – when she was admitted to the 14-bed Vincent Square Eating Disorder Service, where she stayed for a month.
Patients at extremely low weights are at high risk of organ failure, fatal infections and a condition called refeeding syndrome – where a sudden increase in calories causes an imbalance of fluids and salts, which can affect heart function.
This means they require constant monitoring.
At some point around July – it’s not yet clear exactly when – Nikki was discharged. Friends say she was still underweight at this point.
The last time Nikki (above in 2010) was discharged, on Thursday April 8, she weighed less than five stone. Just 12 hours later, she was dead
In a statement to this newspaper, the Central and North West London Foundation Trust said their ‘door remained always open’, but sources close to Nikki received few follow-up appointments.
She quickly deteriorated and by December her weight had once again plummeted.
Around this time, she suffered a fall – at very low weights, patients often suffer balance problems, loss of muscle control and sudden collapses – and received hospital treatment for a cracked pelvis and broken wrist.
Severe malnutrition caused by anorexia results in a depletion of nutrients needed to repair and grow healthy bone tissue, leaving sufferers vulnerable to the bone-thinning disease osteoporosis, and fractures and breakages.
A friend says Nikki saw several doctors for check-ups on her injuries over the following two months, but her critically low weight was never addressed.
By February, two close friends visited her London flat for the first time in six months and were shocked by her decline.
She weighed 3st 7lb. ‘We just thought, she’s going to die,’ said one. ‘She was on her own because of lockdown and there was no way of checking up on what she was or wasn’t eating.
But she was calling out for help, ringing around private doctors and local clinics to ask if they’d take her in. She really, really wanted to get better.
She just didn’t know how. On a few occasions we called ambulances to her flat in the hope that she’d be admitted to hospital and get into treatment that way.’
Nikki told friends she had been discharged by Central and North West London NHS Foundation Trust, so was ‘no longer on the books’ and so ineligible for treatment. The Trust told this newspaper they believed she’d ‘moved away’.
Nikki also told friends she had visited her GP to ask for an alternative eating disorder specialist clinic, but no referral was made.
It was at this point, in mid-March, that two of her closest friends started a crowdfunding charity campaign in an attempt to raise at least £25,000 for private treatment.
Nikki, who stole the nation’s heart with her effervescent and girlish charm on the 2006 series of Big Brother (above), suffered bouts of anorexia – the deadliest eating disorder – from the age of nine
Until recently, friends say, her condition was relatively stable. She was pursuing a new career in teaching and was taking courses in English and science. Pictured: Nikki with Pete Bennett
Many private clinics do not have the medical facilities to care for severely ill patients, so require them to reach a body mass index (BMI) score of at least 12 before admission.
BMI is a weight to height ratio used by doctors to see if patients are a healthy weight. Anything below 18.5 is considered underweight. Nikki’s BMI was nine at the time.
One private London clinic agreed to take her, so long as she could gain roughly a stone and a half before starting treatment on April 12, as otherwise the medical risk was considered too high.
At some point around March 15, Nikki travelled by taxi to her mother’s house, on the Dorset and Devon border. She told a friend she stopped at a pharmacy roughly ten miles from her mum’s where she suffered another serious fall, fracturing her lower spine.
An ambulance took her to Dorset County Hospital in Dorchester, where A&E doctors performed tests before transferring her to a short-stay acute ward, usually occupied by severely ill elderly patients.
Nikki was visibly underweight, and her doctors, suspecting that she was suffering from an eating disorder, called psychiatrists from the local mental health team to make an assessment.
It is not clear why she was not transferred to the Trust’s eating disorder specialist centre – but friends suggest it may have been due to a lack of available beds.
Then, on Thursday April 8, Nikki was discharged. It is not yet clear why, however she told a friend that her weight was 5st at that time.
‘I spoke to the duty doctor the day before she was discharged on the phone and pleaded with him not to let her leave – I said she’s not ready,’ said the friend.
‘Up until that day, she wanted to stay in hospital. They were so kind, she said it was better than the care she’d received at any anorexia unit. But as soon as the doctor said she was ready to leave, she started to believe she was well enough to go home and became excited about it.
‘I asked at least for more time so we could organise someone to be there to take care of her. But the next day they let her get in a taxi on her own and travel home.’
Pictured: Nikki at the National Television Awards at Royal Albert Hall in 2006
Nikki arrived back in London early that evening and made phone calls to friends to tell them she’d arrived safely. That night she died, reportedly in her sleep. A post-mortem is being carried out next week.
Shocking as this all may seem, it is not the first time such a combination of problems have had devastating consequences.
In 2012, 19-year-old anorexia sufferer Averil Hart from Suffolk died at Addenbrooke’s Hospital, Cambridge, after collapsing in her room on campus at the University of East Anglia.
Averil, who was first diagnosed with the illness aged 15, was first taken to the Norfolk and Norwich University Hospital, in a ‘severely malnourished’ state, but received no nutritional or psychiatric support during her four-day admission, before an urgent transfer to Addenbrooke’s.
At the inquest, factors identified as contributors to her death included doctors who knew ‘practically nothing’ about anorexia, ‘no follow-up’ from the local eating disorder team and failure to provide life-saving treatment, such as a feeding tube, while under the care of Norfolk and Norwich University Hospital.
In December 2016, 45-year-old Amanda Bowles, from Cambridge, was discharged by the Cambridge and Peterborough NHS Foundation Trust’s eating disorder service despite her ‘critically low’ body mass index – and less than a year later was found dead in her flat.
An inquest heard the mother-of-one had been struggling with severe anorexia for over a year but after her discharge was not monitored for six months, during which she ‘significantly deteriorated’ and ‘was at a high risk of death’.
More recently, in January 2018, Edinburgh University student Madeline Wallace, 19, died from sepsis – a common cause of death in anorexia patients.
Madeline, from Peterborough, had suffered with anorexia for two years and experienced ‘gaps’ in her treatment.
Having rapidly declined at the end of 2017, she began suffering symptoms related to severe malnourishment – which her GP described as ‘in the range of normal’.
Days later, an out-of-hours doctor made an urgent referral to hospital, but it was rejected due to a lack of beds. She died two days later.
According to a 2020 coroner’s report into the issue, these deaths are likely to be the tip of the iceberg, due to ‘significant under reporting’ when it comes to fatalities involving the eating disorders.
Coroner Sean Hornstead said that due to a lack of understanding among medical professionals, many patients were listed as having died from ‘natural causes’, when in fact an eating disorder was to blame.
Royal College of Psychiatrists guidance states anorexia patients with a BMI below 15 should be considered for hospitalisation. Ideally, this should be in an eating disorder specialist unit, where doctors can perform weekly blood tests, heart scans and muscle strength tests as well as twice-weekly weigh-ins.
Facilities are advised to make a full mental health assessment of patients and, as a last resort, detain them under the Mental Health Act – often referred to as ‘being sectioned’ – and treat them, if necessary, against their will.
This is done because distressed patients may refuse food, despite being a critically low weight, pull out feeding tubes or self-harm.
Patients should also be counselled by mental health support workers and dieticians, to help them cope with the anxiety they feel after eating. But a national shortage of beds means many end up in inappropriate facilities.
Andrew Radford, CEO of the UK’s eating-disorder charity Beat, said Covid has worsened the situation. ‘Social distancing measures means there’s even fewer specialist beds available,’ he said.
Pictured: Nikki during an appearance on Lorraine in November 2018
‘Adult patients might find themselves in a general hospital ward, having been admitted as a medical emergency.
‘But often doctors aren’t totally sure what the right thing to do is, or are unaware of the unique challenges of working with someone in the throes of anorexia.’
Recent NHS data shows only roughly half of all adult eating disorder patients in need of hospitalisation are treated on specialist units. Roughly a tenth were in general medical wards, often those specialising in gastroenterology.
A 2017 Royal College of Psychiatrists report raised concerns about very ill eating disorder patients doing ‘very badly’ and ‘occasionally dying’, after being treated on non-specialist units.
The problem was said to be ‘sufficiently common to give rise to serious concern.’
And then there’s the problem of what happens when patients leave hospital. All too often, they are left unmonitored, soon becoming desperately ill.
After hospital discharge, Royal College of Psychiatrists’ guidance states that patients should transition to either intensive day care or community-based care, where they receive regular appointments with dieticians, psychiatrists and mental health nurses for at least six months – depending on their recovery.
But this gold-standard approach is becoming less and less common, say experts.
‘The classic case we see is someone gets out of hospital and the care almost immediately drops off,’ says Mr Radford. ‘The problem doesn’t resolve, and the longer it goes on, the tougher it is to treat them, as behaviours become ingrained. So they just end up in and out of treatment – it’s infuriating.’
Recent NHS data shows some adults are waiting more than three years for an appointment with a local eating disorder specialist, such as psychiatrist or mental health nurse.
One 32-year-old woman told this newspaper about how she was left for six months without follow-up care immediately after hospital discharge, as well as receiving no psychological support while in treatment.
Another told of being discharged from hospital and told by doctors, ‘you know what you need to do – just gain weight’, despite being a BMI of 15 – just above medically dangerous.
So what’s the solution? More funding, for resources and specialist staff would, of course, help.
‘Early intervention for young people has long been the priority [for funding] because this is where you see the most success in terms of recovery,’ says Professor Janet Treasure, consultant psychiatrist and one of the UK’s leading eating disorder experts.
Over the past six years, children and adolescent eating disorder services have received an extra £50 million per year.
Adults, on the other hand, have not. The Government has pledged £1 billion in funding for adult mental health services this year, but it is not yet clear exactly how much will be ring-fenced for eating disorders.
Mr Radford says: ‘They needed an extra £50 million for children and only one in six eating disorder patients are children.
‘So it’s going to take a hell of a lot of investment to solve the problem.’
Many experts say that a complete overhaul of the hospital discharge process is also needed.
‘All too often people fall through the cracks because there’s no one point of contact they can go to when they come out of hospital,’ Mr Radford says.
‘At the very least, we’re calling for a consistent staff member who will check up on patients regularly, not a clinician, necessarily, just someone who can see them and identify warning signs.’
Prof Treasure and her research team at King’s College London are trialling one innovative idea – training family members, community leaders and former sufferers to advocate on behalf of patients after discharge.
‘Eating disorder patients often don’t think they’re worthy of help, so won’t reach out for it unless they’re pushed. This way, we’re not relying on them to help themselves,’ she says.
Nikki Grahame’s friends are also calling for change. When originally approached, they were reluctant to speak publicly about her death. But after some thought, they agreed.
‘If there’s one thing I know, it’s that Nikki would want us to be shouting from the rooftops about what happened to her,’ says one friend.
‘All she ever wanted was to stop it from happening to others.’
A spokesman for Dorset County Hospital NHS Foundation Trust said: ‘A full internal investigation into the circumstances of Miss Grahame’s death is currently under way. All information and findings will be shared confidentially with Miss Grahame’s family.’