The UK’s Health Ombudsman has warned that people with eating disorders are being repeatedly failed by the system and radical changes need to be made to prevent further tragedies.
Little progress has been made in the six years since the publication of a report by the Parliamentary and Health Service Ombudsman (PHSO) which highlighted serious failings in eating disorder services.
Lives continue to be lost because of the lack of parity between child and adult services and poor coordination between those involved in treating patients.
There are also still issues with the training of medical professionals. This is fundamental to improving awareness among clinicians so they can identify and treat eating disorders.
Ombudsman Rob Behrens said:
“We raised concerns six years ago in our Ignoring the Alarms report, so it’s extremely disappointing to see the same issues are still occurring. Small steps in improvements have been taken but progress has been slow. We need to see a much bigger shift in the way eating disorder services are delivered.
“Eating disorders are enormously complex, and those on the frontline treating people have a tremendously difficult job to do. This not helped by a lack of any sense of urgency to address the scale of the problem. Clinicians need better support to do their job of protecting patients.”
Some progress has been made, such as scaling up early intervention services to support children and young people. The General Medical Council has also begun work to identify and address gaps around eating disorders in medical curricula.
But there are still unacceptable recurrent issues within the service that can lead to poor care for patients and their families, and avoidable deaths.
Since the beginning of April 2019, the Ombudsman has received 234 complaints relating to eating disorder services.
Avoidable death of a 35-year-old teacher
We recently upheld a case about the death of a 35-year-old college teacher who believed her food was being tampered with and refused to eat.
The woman had been sectioned and cared for by Cheshire and Wirral Partnership NHS Foundation Trust (CWP) and Wirral University Teaching Hospital NHS Foundation Trust (WUTH), in the six weeks before she died. She was still under the care of WUTH at the time of her death in February 2014.
In the first three weeks of being cared for, her weight and Body Mass Index dropped significantly.
She suffered multiple organ failure, and the cause of death was recorded as severe malnutrition and delusional disorder.
The Ombudsman’s investigation found a series of significant failings by both Trusts and concluded that had things been done differently, she may have survived.
We found that the woman’s food and drink intake was not adequately monitored. Staff did not act quickly enough when it became clear she needed to be transferred to a specialist hospital for nasogastric feeding (food via a tube into the stomach).
Other serious failings included staff not responding to abnormal kidney and liver function tests and low blood sugar results quickly enough. Nor did they take appropriate action when a blood test suggested a possible paracetamol overdose.
Both Trusts were asked to write to the woman’s father to acknowledge their failings and apologise. They were also asked to create action plans to show how they would stop this happening again.
The Ombudsman also recommended that CWP pay the woman’s father £2,500 and WUTH pay him £5,000 in recognition of the distress caused. Both Trusts have complied with these actions.
Describing the impact this has had on his family, the woman’s father said:
“It’s been absolutely devastating. Her death has ripped the family apart. My son has been left without his sister and still struggles with the fact she’s not here.
“We feel completely let down. We could see what was happening, we could see she was starving, but no one would listen to us. It felt like there was no urgency and too much complacency.
“When they finally did feed her via a tube, she could no longer lift herself up on her elbows or hold her head up on her own. It was already too late.
“Trusting the doctors was the biggest mistake we made. If we could see she was starving, why couldn’t they? My daughter starved to death in their care after just six weeks.
“I’m determined to take the Ombudsman’s investigation report as far as I can to try and make changes.”
Rob Behrens added:
“The death of this young woman is incredibly sad. Not knowing whether she might have survived can only have added further to her family’s distress.
“It is heart-breaking to see repeated mistakes and tragedies like this happening again and again. We need to see a complete culture change within the NHS, where there is a willingness to learn from mistakes.
“The Government also needs to fulfil its promise to treat eating disorders as a key priority so we can see meaningful change in this area and make sure patients receive the quality of care they deserve.”
Tom Quinn, Director of External Affairs at the UK's eating disorder charity Beat, said:
“The Government must act immediately to address this national crisis. Eating disorders are complex mental illnesses which require safe, compassionate and quality care. It’s appalling that vulnerable patients are not getting the treatment that they desperately need.
“The alarms have been sounding for years but NHS staff are still not being given appropriate resources. We need a fully funded long-term plan to invest in eating disorder services, ensuring that services can recruit and retain staff.
"While there has been some progress in improving training for health professionals, we need to see this expanded further. The Government must also ensure that all funding for eating disorder services reaches the frontline by holding local NHS leaders to account.”
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