Why has the NHS given up helping older women who have anorexia?
‘It’s not living. It’s existing… I want to get better but I just can’t do it’: Angela is 51 and has anorexia. Why has the NHS given up helping the rising number of women like her?
For most people, grabbing a sandwich at a railway station is a regular non-event: you’re hungry, you eat.
But when Angela Whiteford unwrapped her Marks & Spencer sandwich while perched outside the station cafe last month, she felt triumphant. At the age of 51, it was the first time she’d eaten in public in more than 15 years. She says: ‘Meals out are usually a no-go. I hate the feeling of a big meal sitting in my stomach. As soon as I come home, I just have to get rid of it.’
The mother-of-two suffers from anorexia, the eating disorder with the highest mortality rate of any mental illness: it kills one in ten victims.
What began as a diet to lose her post-pregnancy weight in 1994 quickly spiralled into a life-threatening illness. Now, 25 years on, it has destroyed more than half of her life.
Angela Whiteford (above), a mother-of-two from South London, suffers from anorexia – the eating disorder with the highest mortality rate of any mental illness: it kills one in ten victims
‘Every day is like groundhog day – it’s the same. I don’t eat much during the day, maybe an apple, then at 9pm I’ll have a cheese and tomato sandwich for dinner and maybe a yogurt or two. It’s not living, it’s existing,’ says Angela, who wears a dress size four to six.
We often hear of inspirational stories of eating disorder recovery, frequently involving teenagers. But for older women, like Angela, the story is not as hopeful.
The heartbreaking reality is they will most likely be stuck with this illness for the rest of their lives.
The South Londoner is one of a growing number of older eating-disorder patients falling through the cracks in the system, struggling into their 60s and 70s with little hope of recovery.
Last week the Royal College of Psychiatrists reported ‘appalling NHS failings’ in the treatment of older patients with eating disorders – anorexia, bulimia and binge eating disorder. Some were found to be waiting three years for mental health support.
What began as a diet to lose her post-pregnancy weight in 1994 quickly spiralled into a life-threatening illness. Now, 25 years on, it has destroyed more than half of Angela’s life. (She is pictured aged 18 – before she developed anorexia)
For many, interventions depend on extreme weight loss, meaning they have to get worse before being given the chance to get better.
Angela says: ‘I wish that all those years ago my GP had spotted the signs, or that I had better treatment earlier on,’ she says. ‘Now it’s so ingrained, as much as I want recovery, I just can’t do it.’
In two decades of NHS treatment, Angela has received just six hour-long sessions of therapy for her mental illness. Treatment has instead centred on in-hospital feeding programmes. Yet research suggests lack of sufficient psychological treatment halves the chance of long-term recovery.
NHS figures seen exclusively by The Mail on Sunday show one in five patients hospitalised for eating disorders in 2018 were aged over 40.
Since 2012, the number of inpatients aged over 40 has doubled to almost 4,000, a much bigger increase than in those under 18.
One 2017 study estimated that about three per cent of Britons aged between 40 and 50 will experience an eating disorder. They will be mostly women.
Leading mental health experts have called for an injection of NHS funding to provide specific support for these patients with severe and enduring illness.
In two decades of NHS treatment, Angela has received just six hour-long sessions of therapy for her mental illness. Treatment has instead centred on in-hospital feeding programmes. Yet research suggests lack of sufficient psychological treatment halves the chance of long-term recovery
Professor Janet Treasure, psychiatrist and director of the eating disorders unit at South London and Maudsley Mental Health Trust, says: ‘We desperately need more resources and options for this group of patients. All other areas of psychiatry are well prepared for dealing with long-term illness, apart from eating disorders. It is too easy to fall through the cracks.’
I know the plight of these patients better than most. Almost five years have passed since I was hospitalised for anorexia, aged 24. Luckily, I had strong family support and a specialist psychological team to get me back to health in just under a year. But a handful of my fellow patients were not so lucky.
Well into their 50s and 60s, many had battled our shared disease for decades, having fallen ill at a time when few effective treatments were available. They trudged on, flying under the radar of health professionals until an inevitable relapse landed them back in hospital. Without the hope of a different way of life, they gave up trying – as did the doctors employed to care for them.
While I’ve consciously erased most of my psychiatric treatment from my memory, the faces of those women have stuck with me.
Why were they denied the crucial treatment that saved me?
Funding for teenagers, not for adults
The recommended treatment for eating disorders involves a three-pronged approach.
A psychiatrist carries out an initial assessment and prescribes anti-anxiety drugs, if necessary.
A specialist dietician devises a meal plan to help patients either gain or maintain weight, and between 20 and 40 sessions of talking therapy such as cognitive behavioural therapy are provided.
Patients who are underweight – with a body mass index below 18 – have regular medical checks, such as blood, heart and bone health tests.
Studies show that if patients access this treatment plan within the first three years of illness, they have about a 60 per cent chance of lasting recovery.
The most common eating disorder doesn’t affect your weight…
Eating disorders affect about 1.25 million Britons, the most recognisable being anorexia, bulimia and binge-eating disorder.
Anorexia is characterised by restrictive eating and obsessive thoughts about food and body weight, causing individuals to become underweight. But it accounts for just ten per cent of all eating disorders.
Bulimia, which involves both bingeing and ‘purging’ food using excessive exercise, self-induced vomiting or laxatives, affects 40 per cent of all eating disorder sufferers.
Often, those with bulimia maintain a healthy weight, meaning the illness often goes unnoticed. Most common is ‘Eating Disorder Not Otherwise Specified’, accounting for half of all eating disorders.
This includes conditions such as binge-eating disorder, night-eating syndrome and purging disorder.
Weight loss is not a given in any of these serious mental illnesses, yet the health implications – both physical and mental – can be profound.
Sufferers of bulimia and binge-eating disorder are at increased risk of sudden cardiac arrest, stroke, bone diseases, muscle spasms, kidney failure and reproductive issues.
After three years, this drops to 30 per cent. Of those who remain ill for a decade, just one in five will recover.
But this intensive plan has only developed over the past five to ten years. Many older adults received ineffective treatment, if any at all. ‘This group of patients gets neglected,’ says Prof Treasure. ‘Most didn’t access treatment when they first became ill, or it didn’t work, and it has left them with enduring illness.
‘The Government is focused on early intervention for young people because it thinks it will reduce overall costs. But treating this older group will reduce costs. It will avoid the repeated hospital admissions many end up needing.’
The Government’s latest financial boost to eating disorder services proves Prof Treasure’s point. In 2014, young people’s eating disorder services received £150 million extra funding. This paved the way for new psychological treatments, all highly effective for children and teenagers. No extra funding has been provided for adults.
Then, in 2016, the Government introduced waiting time targets for children and young people. All patients under 18 must now see an eating disorders specialist within a month of a GP referral. In urgent cases, this is reduced to a week.
No such targets exist for adults.
By the time they reach the top of the waiting list, neurological changes caused by long-term starvation mean their illness is far more difficult to treat.
‘We’re faced with a whole group of patients who are asking, “What about us?” ’ says Andrew Radford, chief executive of the UK’s biggest eating disorder charity, Beat.
‘Older adults call our helplines because they’ve been failed by the service. They need more challenging treatment and Government funding needs to account for that.’
The charity campaigned for adult eating disorder services to be addressed in the Government’s latest ten-year plan, unveiled in January. But it made no mention of the issue.
Long term, it’s very tough to kick
Anorexia is characterised by maintaining a low weight. The same is true for many of those with bulimia. But the effects of this long-term starvation on the brain can be catastrophic.
Studies of malnourished men conducted in the 1940s found that the longer participants were starved, the greater their obsession with maintaining a low body weight.
Only when the skeletal subjects were force-fed, and weight was regained, did their preoccupation with restriction subside. In other words, being very thin makes you want to eat less. Scientists believe this happens because starvation disrupts brain areas involved in appetite and eating, while super-charging those responsible for punishment and reward.
Brain imaging studies also show reduced activation in brain areas associated with memory, learning and emotions. This cascade of cognitive damage impacts the ability not only to gain weight, but also to fully engage in therapy.
And that’s not to mention the destructive effects on the body. Long-term, eating disorder patients are at risk of bone fractures and osteoporosis, gum disease, infertility, stroke, diabetes, sudden heart attack and early death.
Diagnosed with anorexia at age of 12, Ellen Maloney, now 36, has seen her fair share of haphazard treatment. She says: ‘I spent most of my adolescence in and out of psychiatric wards, being tube-fed and restrained with no psychological help. As soon as I turned 18, I wasn’t considered a child any more so I was discharged without support.’
The teenager, from Edinburgh, did ‘OK’ for a year, attending college part-time and passing a handful of GCSEs.
‘But by then I was institutionalised and had become stuck in my distorted food habits,’ she says.
She soon developed a diet pill addiction and stopped eating solid foods. Her weight plummeted to a dangerously low level, landing her back in a London hospital. ‘The consultant said as long as I could get my weight safe enough to keep me out of hospital, that was enough. That was as good as it was going to get. I felt completely given-up on.’
Three months later, having reached a BMI of just 15, she was discharged. It wasn’t until the age of 27, following another relapse, that she received a ‘proper’ course of psychotherapy. But by this point, Ellen was locked in her ‘rigid ways of thinking’.
She says: ‘The therapy couldn’t reverse two decades of illness.’
Recent intriguing research may explain Ellen’s self-destructive thought patterns. In 2015, psychiatrists from Columbia University performed brain scans on 21 anorexia patients and 21 healthy women as they made decisions about eating.
While the healthy women showed moderate activation in brain areas associated with reward – the ventral striatum – the anorexic women showed high level activation in an unusual area, the dorsal striatum.
This section of the brain is involved in habitual thoughts and behaviours, like biting your nails.
This suggests anorexics’ food decisions are automatic and based on past learning, as opposed to weighing up pros and cons or pleasure seeking. Study author Professor Timothy Walsh concluded that the longer the disorder rages on, the greater the dorsal striatum’s role in food decisions.
A sign of hope that doesn’t include weight gain
Angela and Ellen are now reluctant to engage in the intensive treatment offered to teenagers. Unsurprisingly, the focus on weight gain puts them off. So what must be done for these patients, if anything?
Prof Treasure has a possible solution, and it doesn’t necessarily involve gaining any weight. Her team is trialling a programme in a small group of older patients that focuses on practical improvements, not the number on the scales.
‘Empowering patients to reach practical goals shifts their focus towards connections with other people. Their habits become unstuck,’ says Prof Treasure.
During weekly sessions with a mental health nurse or psychologist, patients plan small, tangible goals designed to reintegrate them with social groups – a meal out with friends, for example. As a by-product, some do gain weight.
Prof Treasure says: ‘We have improved recovery rates and reduced hospital admissions.’ She adds: ‘Although initial outcomes of this approach are promising, the team will have to wait two to three years for a full set of results.’
Angela has been enrolled in the intervention for the past 18 months and is maintaining her current weight. Her psychologist, Caroline Norton, is thrilled with her progress. She says: ‘When I met Angela she was barely able to leave home. This year she’s been to her daughter-in-law’s hen party for the weekend and eaten out, too. It’s a huge achievement.’
Prioritising weight gain can be detrimental, says Norton.
‘Many refuse outright to gain weight. If all you’ve known for 40 years is anorexia, what’s left? They cling on to it because it’s the only life they know. We must improve quality of life as best we can. Maybe they want to go into town and have coffee, or go on holiday. We can help them do that.
‘But the NHS can’t plot these successes on a graph in the same way you can with weight gain, so they aren’t seen as valuable. How do you quantify a meal out or the first bus ride in 20 years? It’s much more difficult to prove success.’
I used to be convinced that the goal for every eating disorder patient should be full, lasting recovery. Weight gain and all. I was wrong. My case was typical and easily treatable. Sadly, the same cannot be said for thousands of others.
‘The fact is, a proportion of people will die from the illness. Even with the best help some people don’t get better,’ says Caroline.
Until science discovers a cure-for-all, the very least we can do is make life worth living. As Angela says: ‘I would have never imagined I’d be able to go away for the weekend and eat out. But Caroline believed I could. I had one of the best weekends of my life.’
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