Children and young people with eating disorders are failing to be treated within target clinical timeframes in every region of England, CYP Now analysis of NHS data has revealed. The delays have been fuelled by an increase in demand for services during the pandemic, with the NHS treating a record number of young people for eating disorders last year. However, the Royal College of Psychiatrists (RCPsych) predicted the rise in 2020 and say the government should have done more to tackle it.
Record referrals
“It's simply not acceptable that waiting times have increased when we are seeing record levels of referrals for children and young people,” says Dr Agnes Ayton, chair of the RCPsych's eating disorder faculty.
The consequences of the delays are serious, adds Dr Ayton. “We know that delays cause patients to become even more unwell, with potentially life-threatening consequences.”
Dr Bryony Bamford, a consultant at the London Centre, agrees.
“When considering the impact of a long-term eating disorder on a person's future, delaying necessary and effective treatment due to inadequate funding is not only a failure, it is also unethical,” she adds.
The access and waiting time standard for children and young people with an eating disorder states that patients up to the age of 19 should receive treatment approved by the National Institute for Health and Care Excellence (Nice) within one week from referral or assessment in clinically urgent cases, and within four weeks in routine cases.
Yet, in the three years between the third quarter of 2019/20 and the same quarter of 2022/23, there was a surge in the proportion of patients starting treatment outside of target timeframes, from around 15 per cent to more than 30 per cent in routine cases alone.
While recent data suggests there has been improvement in some areas of England, the proportion of urgent cases “still waiting” to start treatment outside of target timeframes was 90 per cent in quarter three of 2022/23, up from 59 per cent in the same period of 2019/20 (represented by light blue, grey and red segments in above graphic).
This is concerning, says Dr Bamford. “For younger people who are still in a key stage of development both physically and emotionally, leaving an eating disorder untreated can mean that there are serious longer-term effects that could otherwise have been avoided.”
These effects include inhibited development and growth, and more embedded thought patterns that are harder to break. As well as causing detrimental outcomes for patients over time, says the RCPsych, delaying treatment also costs the NHS more in the long-run.
The proportion of young people “starting treatment” at 12 weeks or more from the date of referral also reached record highs in the last quarter – in 2019/20 only 1.5 per cent of patients presenting with urgent cases started treatment at 12 weeks or later from referral or assessment, but this has hovered at around five per cent in the two most recent quarters.
For routine cases, the percentage of children waiting 12 weeks or more has significantly reduced (falling below pre-pandemic levels). However, targets are still being breached – the proportion waiting more than four weeks is 50 per cent, up from 30 per cent in quarter one of 2019/20.
The scale of the problem has led experts to express concern. “I feel worried by what this means for the future of a huge number of current and future eating disorder sufferers,” says Dr Bamford.
In addition to the impact on young people's health, Chris Hood, chief executive of South Yorkshire Eating Disorder Association, says delays can create “a lack of optimism and thoughts that the sufferer is not worthy of help”. In February 2023, the organisation received 75 referrals, a record number for the service (see box).
Pandemic pressures
Across both urgent and routine cases the number of patients still waiting to start treatment at 12 or more weeks from referral has risen from 51 in quarter one 2019/20 to 288 in quarter three in 2022/23, (albeit down from a high of 670 in the intervening period).
The reasons for this are complex, says Hood. While demand was rising during the pandemic, staffing pressures meant that providers faced difficult choices about what cases to prioritise.
“Lots of services had to make decisions to stop picking up routine cases, they had to focus all clinical activity on urgent cases,” Hood explains.
However, he agrees the blame can't entirely be placed on Covid-19. “It's a trend that we could see before the pandemic,” he says.
Despite this, data analysis by the RCPsych shows services in England have seen referrals for specialist services for children and young people rose 51 per cent (both routine and urgent) in the past three years.
Hidden cases
Moreover, Hood fears that the published statistics represent only the tip of the iceberg. “There's a widely-held understanding that the vast majority of people don't receive help until they get very unwell anyway,” he says.
This is thought to be exacerbated by the NHS's skewed focus on certain disorders. According to Hood, statistics are unlikely to reflect less well recognised conditions, such as binge-eating disorder. London-based Bamford agrees and explains that many services are only funded to treat certain disorders, such as anorexia and bulimia.
Postcode lottery
Data analysis confirms that all regions in England are failing to meet the government target for when children should be seen, but with high degrees of variation between local providers. Over the year starting in quarter three 2021/22, only 16 per cent of providers began treatment in urgent cases within target timeframes. The non-compliance rate for routine cases was even worse, with 91 per cent of providers failing to achieve targets (see graphics).
Almost a third of care providers in routine cases had compliance rates of 50 per cent or less. One of the worst performing trusts was Gloucester, which only saw seven per cent of urgent cases within target periods.
The result is a de facto postcode lottery. Regional breakdowns show that in the East of England, less than half of patients with urgent cases are seen within target timeframes, in sharp contrast to 89 per cent of cases in London. The picture is equally as variable in routine cases, with London the worst performing region for treatment in target times (55 per cent), and the North East and Yorkshire the highest at 76 per cent.
Patients on the cusp of being identified as urgent, but who are classified as routine, are thought to be particularly vulnerable to the effects of delays. “By the time they’re picked up as an urgent case, they’re already embedded in severely disordered thoughts and behaviours,” Hood says.
Though demand has reduced from pandemic peaks, the latest data shows that the total number of children waiting for treatment remains up by 224 per cent in urgent cases, and 125 per cent in routine cases from 2019/20 levels. Despite improvements, ongoing delays (exacerbated by the postcode lottery) mean government action is essential, say experts.
Funding to address staffing issues is high on the list of priority. Thomas Quinn, spokesperson for charity Beat, says the government must develop a strategy to address ongoing gaps in the NHS workforce which are contributing to delayed service provision.
In March, the RCPsych confirmed that workforce shortages are continuing to undermine service delivery. “At present, psychiatrists report high workloads and poor work-life balance, making older consultants more likely to retire early due to work-related stress,” it says.
The royal college also reports a 30 per cent increase in vacant or unfilled consultant posts in England, with child and adolescent psychiatry and eating disorder psychiatry showing the highest number of vacancies.
Action needed
Dr Lockhart agrees that urgent action is needed.
“The government must honour its commitment to publish a workforce plan and urgently take steps to ensure there is an adequate number of mental healthcare professionals to meet the rising demand,” she says.
“Specialist mental health services need ongoing investment to recruit and train clinicians. Without this many more young people could end up in crisis.”
In particular, the RCPsych has called on the government to increase medical school places to 15,000 by 2028/29, with priority for shortage specialties.
Beyond this, there needs to be more investment “downstream” in early intervention and prevention, says Hood.
Lockhart agrees. “Further action to expand early intervention services, such as the creation of youth hubs and strengthened mental health support in schools, would help ensure more young people can access help before becoming seriously unwell,” she explains.
The pandemic may be over, but its impact is ongoing for young people with eating disorders and the clinicians trying to support them.
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NHS eating disorders data from www.england.nhs.uk/statistics/statistical-work-areas/cyped-waiting-times/
PANDEMIC TRIGGERS RISE IN MORE COMPLEX CASES
Chris Hood, chief executive of South Yorkshire Eating Disorder Association says his service has seen an increase in case complexity over the course of the pandemic, with patients presenting with more entrenched eating disorders and additional mental health conditions. This reflects reports in medical journal The Lancet of an increased incidence of eating disorders with more severe symptoms and comorbidities since the start of the pandemic.
Although Hood says the increase in complexity is likely due to a range of factors, he explains that the impact of Covid has been key. While studies show that the pandemic worsened general mental health problems such as anxiety and depression, it is also thought to have exacerbated eating disorder symptoms specifically. Research published in the International Journal of Eating Disorders highlights this.
According to the journal, the disruption to daily routines and constraints on outdoor activities (due to lockdowns and restrictions) were a risk factor for enhanced weight concerns, which can increase eating disorder symptoms such as body checking. Researchers also reported that restrictions may have disrupted coping strategies by reducing access to social support systems – a further risk factor for worsening symptoms.
As a result, Hood has introduced additional training “to ensure staff have the skills and knowledge to respond appropriately” to patients who present with complex cases.
