‘Insufficient’ action in response to anorexic women’s death - bereaved dad
Health chiefs are failing to get to grips with a “wave” of people suffering from an eating disorder, according to a bereaved dad.
Simon Brown was reacting to responses following the inquest of Averil Hart, a 19-year-old who died from anorexia in 2012.
A coroner later concluded that her death “could have been avoided and... was contributed to by neglect”.
Sean Horstead also carried out inquests into four other women who died from eating disorders while under the care of Cambridgeshire and Peterborough NHS Foundation Trust, including Simon’s daughter Emma, who was found dead at the age of 27 after an agonising 15 year battle with the mental illness.
In his report, written after the five inquests, the assistant coroner for Cambridgeshire wrote to Health Secretary Matt Hancock outlining concerns including: inadequate training of doctors and other medical professionals, a lack of commissioned provision to monitor patients and a lack of “robust and reliable data regarding the prevalence of eating disorders”.
He said he was “concerned that there may also be a significant under-reporting of the extent to which eating disorders have caused or contributed to deaths” and that the outlined problems could be “significantly exacerbated” by the Covid pandemic.
Mr Horstead has now received written responses from five senior officials with responsibility for healthcare provision and training across the country, including the NHS and government.
The responses all highlighted efforts which have been made in the subsequent nine years to improve the system for eating disorders, including enhanced training and new pilot schemes which are about to get off the ground (see factfile below).
But Mr Brown remains unconvinced that significant progress has been made and is fearful that a sharp rise in eating disorder referrals during the pandemic could overwhelm an “underprepared” system.
He told the Peterborough Telegraph: “It’s a little step forward in the right direction, and there are clearly signs of a broader and better understanding of the issue. But at a very high level I don’t think the responses yet reflect the horror of the illness.
“The responses are to re-state what they are doing, not to genuinely think ‘bloody hell, we should have realised just how painful, just how much suffering, death and destruction of potential this illness is causing’.
“If we stopped to think of that we’d be having a different conversation.”
Mr Brown is a trustee at Peterborough charity Personalised Eating Disorder Support (PEDS) and is part of an NHS steering group led by the Cambridgeshire and Peterborough NHS Foundation Trust which is piloting a new approach to tackling eating disorders in the East of England.
He believes the new pathway, which is set to launch in October, will be “a lot better” but that funding is unlikely to follow to roll it out nationally.
Mr Brown added: “The system can’t cope.
“If they’d acted eight years ago and we’d reformed the eating disorder service by now, if we’d attracted and trained and equipped people, and got effective working with the third sector so we can reach people sooner and treat people before they become ill, then absolutely (we could cope). But we haven’t done any of that.
“So the wave which is hitting us now is hitting a service which is being reformed but is massively underprepared.
“It needs systemic change, rather than a little bit of money and a bit more training.”
Mr Brown praised the recognition from the health chiefs of how prevalent the illness is, as well as support for new pilot projects - including one with 18-25 year-olds - and the promise of greater collaboration with charities.
But he believes the progress made since Averil’s death is “nothing like what is needed” and that there needs to be funded research into eating disorders.
He added: “People suffer all their lives from this illness - it doesn’t go away. But if you get hold of it you can recover from it. It is treatable.
“It is a mental and biological illness. It is unique in that regard.
“It affects millions of people and kills a significant number of them. And it’s not just the people who are dying, it’s the families who are destroyed, it’s the years and years of suffering.
“The system at the moment can’t cope with that because we don’t know how to treat people who are in recovery. We leave them until they become unwell again. And being unwell with an eating disorder service is torture.”
The responses to the inquest can be read in full at: https://www.judiciary.uk/publications/averil-hart/.
To contact PEDS, visit: https://www.pedsupport.co.uk/.
Responses to the Averil Hart inquest
Academy of Medical Royal Colleges:
The academy sets standards for how doctors are trained and monitored.
It said it had received some funding to create shared curriculum content, but that “eating disorders and anorexia nervosa are high on the longlist of topics we wish to tackle as capacity and resource permits”.
Health Education England:
HEE is a public body responsible for promoting high quality education and training for healthcare workers in England.
It said its National Mental Health Programme has undertaken a project to map out the current provision of eating disorder training nationally.
Education programmes are being commissioned to upskill the existing workforce who are working with children and adults in psychological therapies and eating disorder treatments, and in March HEE commissioned the development of a national curriculum on anorexia nervosa treatment for adults.
It has also commissioned eating disorder charity BEAT to develop a programme for all nursing staff and has produced E-learning on eating disorders which is designed to ensure that all medical students and foundation doctors are trained to understand, identify and respond appropriately when faced with a patient with a possible eating disorder.
General Medical Council:
The GMC sets the outcomes for graduates of UK medical schools and approves the curricula for postgraduate training of doctors.
It said that graduating medical students from 2024/25 will need to pass an assessment on eating disorders.
All graduates then enter the two-year Foundation Programme where they have to show skills including recognising eating disorders, referring to specialist services and formulating recovery plans.
The GMC noted, though, that: “The provision of education and training on eating disorders is evidentially inconsistent and sometimes insufficient to prepare all doctors to recognise and manage or refer patients with ED.”
It also highlighted evidence of a “continuing shortage of eating disorder specialists across the country”.
NHS England and NHS Improvement
The NHS said local care systems are required to start work to transform their community eating disorder pathways by 2023/24.
Regional adult eating disorder clinical leads have also been appointed across England, while 18 areas across the country have embedded the First Episode Rapid Early intervention for Eating Disorders (FREED) programme to support early intervention services for young people aged 16 to 25 with an eating disorder.
The FREED model means people coming forward could be contacted within 48 hours and could begin treatment within two weeks.
In addition, eight areas are testing new models for community eating disorder support, while funding has also been made available for trusts in the region to access training for medical staff in managing patients who present at A&E or require admission to a medical ward for self-harm or an eating disorder.
Cambridgeshire and Peterborough now offers specialist eating disorder training to all primary care clinicians in GP practices and outside of primary care.
Department of Health and Social Care:
Nadine Dorries, minister for patient safety, suicide prevention and mental health, said an extra £2.3 billion a year is being invested in mental health services from 2022/23, with a focus on a more integrated service between primary and secondary care, as well as new funding for 2,000 more children and young people to access eating disorder services.
She added that a four week waiting time for adult community mental health services, including eating disorder services, is being piloted, but that: “We fully agree that there needs to be improved information about the prevalence of eating disorders.”
The minister also revealed that during the first nine months of 2020/21 - during the Covid pandemic - 7,555 children and young people started treatment for an eating disorder, compared with 5,831 in the first nine months of 2019/20.