Father's fears over new eating disorder guidelines prompted by tragic death of 19-year-old Suffolk girl
The father of a 19-year-old Suffolk girl who died from anorexia fears many more patients have died as a result of how eating disorders are still treated.
Reacting to new guidelines on the illness published today, Nic Hart – whose daughter Averil collapsed in her flat at the University of East Anglia (UEA) on December 7, 2012 and died just over a week later – said “the devil is in the detail”.
Most recommendations issued by the National Institute for Health and Care Excellence (NICE) this morning should have already been implemented, claims Mr Hart, who has fought for answers since Averil’s tragic death.
“It is our family’s concern that since Averil’s death in 2012, many more patients have died as a direct result of how eating disorders are still treated,” he said.
“[With these guidelines], the devil is in the detail.
“The problem we have with it is that a lot of them are already supposed to be in place.”
Issued this morning, the guidelines were drawn up following a scathing report into the handling of Averil’s illness, published in December 2017.
The investigation, called ‘Ignoring the alarms: How NHS eating disorder services are failing patients’, found every single NHS trust involved in her care failed her in some way.
Mr Hart, from Sudbury, added: “While these new standards highlight some of the failings in Averil’s care, what concerns us as a family is that the proper implementation of these standards and the means of monitoring of the quality of services – which require greater resources and an increase in the number of experienced clinicians – is still severely lacking.”
After collapsing on December 7, 2012, former Colchester Royal Grammar School pupil Averil was rushed to Norfolk and Norwich Hospital with a dangerously low temperature, blood sugar and blood pressure.
The academically gifted teenager spent three days there before medics realised the seriousness of her illness.
She was transferred to Addenbrooke’s Hospital in Cambridge on December 11 – and after a series of delays, Averil died on December 15 following a heart attack.
The 19-year-old also suffered severe brain damage from the low blood sugar.
In the new guidelines published this morning, NICE recommends:
• People with suspected eating disorders get early assessment and treatment, within four weeks for children or young people or a locally agreed timeframe for adults
• Patients have a discussion with a healthcare professional about their options for psychological treatment
• People with binge eating disorders participate in guided self-programme as first-line psychological treatment
• Children and young people with bulimia nervosa are offered focused family therapy for that specific illness
• People with eating disorders supported by more than one service have a clear care plan explaining how they will work together
• Those moving between services have their risks assessed.
The full recommendations can be accessed via the NICE website.
Mr Hart said although he and his family welcome a focus on early assessment and treatment, they are still concerned this will only occur at a ‘locally agreed timeframe’ for those over 18.
“Averil was legally considered an adult, yet – like many sufferers of anorexia – was still in an incredibly vulnerable situation by relocating to a different city to study at university,” he said.
Mr Hart added that the Justice4Averil campaign – set up by members of her family – supports the Beat eating disorder charity’s claim that patients face a ‘postcode lottery’ when it comes to quality of treatment on moving services.
“A poor risk assessment while moving to a new service can have a tremendously damaging impact on a patient’s chance of recovery,” he said.
However, PHSO Rob Behrens – who commissioned the report into Averil’s death – said he hopes the NICE guidance will ensure better coordination of care between organisations.
He added: “Our 2017 report highlighted cases where NHS services had failed patients with eating disorders, resulting in avoidable harm and even death.
“This guidance will help ensure better coordination of care between NHS organisations treating people with eating disorders and help prevent the same mistakes happening to others.”
All of the NHS organisations mentioned in the Ombudsman’s report about Averil responded to the findings last year.
A NICE spokesman said they would not be responding to Mr Hart’s comments, but added they are open to discussing concerns with the family.
A full inquest into Averil’s death is due to be held next year, her father believes, as a pre-inquest review was held earlier this month.