Our wider observations and recommendations
Sadly, the failures in Averil’s care and treatment, and her family’s subsequent experience of fighting to get answers about what had happened are not unique. We have seen in our casework, and in our discussions with system leaders and experts, the same problems of poor transitions and coordination and a lack of awareness replicated. All of which contribute to an area of care that is at risk of failing its patients. In the words of one eating disorder specialist we spoke to: ‘it is a miracle we don’t have more tragedies’.
Awareness
Eating disorders affect over 725,000 people in the UK.2 Yet training for most doctors on this complex and serious mental illness is limited to just a few hours amongst many years of training. Our experience of investigating Averil’s death shows this is not enough. GPs, often the first port of call for people with eating disorders who seek help, should be equipped with enough knowledge of the illness to know what steps to take next, including when and where to refer a patient to another service.
Medical professionals in acute settings also need to understand the nature of anorexia nervosa and the behaviours that sufferers may display. As a result of the failure of staff at the Norwich Acute Trust to recognise that Averil needed urgent attention when she was admitted, she was allowed to walk around the ward and her food intake was unknown; common ‘sabotaging’ behaviours that people with anorexia nervosa can use. Likewise, understanding whether a patient as the mental capacity to make a decision to refuse treatment is critical in cases like those highlighted in this report.
The failure of staff in both Averil’s and Miss E’s case to recognise the nature of their illness and seek appropriate advice about treatment could have been easily remedied with some additional training and awareness of the relevant guidance.3
Recommendation
The General Medical Council (GMC) should conduct a review of training for all junior doctors on eating disorders.
The Faculty of Eating Disorders at the Royal College of Psychiatrists is currently conducting a survey of medical schools and colleges to better understand the paucity of training on eating disorders. We would encourage the GMC to use the findings of this research to inform their review.
Transition
As Averil’s case shows, moving between services is a particularly challenging time for people with eating disorders. These transitions between services in different geographical locations, or from child and adolescent eating disorder services to adult ones, are recognised as high-risk, with students moving to university being identified as particularly vulnerable.4
Child and adolescent eating disorder services have received specific focus in recent years with increased Government funding to drive improvements and guidance on establishing and maintaining community eating disorder services for children and young people.
However, for good quality transitions to be the norm, there needs to be dual focus on the quality and availability of adult eating disorder services, particularly given how frequently these conditions continue into adulthood. There also needs to be greater availability of good quality adult eating disorder services, which are currently subject to significant geographical variation meaning access to specialist support can be hugely divergent.
Without these changes, adult eating disorder services will remain a Cinderella service and the experiences of the people in this report will be replicated, with similarly tragic consequences.
Recommendation
The Department of Health and NHS England should review the existing quality and availability of adult eating disorder services to achieve parity with child and adolescent services.
In addition to CQUINs5 and new NICE guidance on eating disorders, NHS England and the Department of Health should consider the possibility of developing benchmarking guidance for adult eating disorder services and appropriate measures of success for this. Any guidance should take account of any funding earmarked within the Five Year Forward View for Mental Health for adult eating disorder services and the availability of resources locally so that standards are achievable.
Coordination
NICE’s guidance on eating disorders specifically identifies that particular care should be taken to ensure services are well coordinated when more than one service is involved, yet there are wide variations in how eating disorder care is coordinated. As all the cases in this report show, poor coordination is a starkly common issue. A detailed care plan that all providers involved in a patient’s care pathway understand, and that comprehensively assesses an individual’s needs and considers risks is an essential part of ensuring care is properly managed. Without this, and in the absence of frequent and clear communication between providers and the engagement of appropriate multidisciplinary expertise, there can be tragic consequences.
Another challenge in achieving good coordination of care for people with eating disorders is the scarcity of specialists who can provide the type of care people like Averil need. This often means one or two professionals have responsibility for patients with eating disorders across a large geographical area, or that people are unable to access support where they live. In Averil’s case, this meant that the only person available to act as her care coordinator was someone with no experience of looking after people with anorexia nervosa. In Miss B’s case, the Eating Disorder Service had not been properly commissioned, meaning that staffing levels were too low and clinical supervision and multidisciplinary input was not available. These situations cause us significant concern.
Recommendations
NICE should consider including coordination as an element of their new Quality Standard for Eating Disorders. Health Education England should review how its current education and training can address the gaps in provision of eating disorder specialists we have identified. If necessary it should consider how the existing workforce can be further trained and used more innovatively to improve capacity. Health Education England should also look at how future workforce planning might support the increased provision of specialists in this field.
Investigations and learning
Before bringing his case to us, Mr Hart had been in correspondence with six different organisations over the course of more than a year and a half. None of those organisations had worked together to conduct either a coordinated investigation into why Averil died, or to provide a coordinated response to the family. This is something we see time and again in the cases we investigate; rather than organisations working together to understand what happened and why, and to learn and improve, the burden instead falls to families. This process serves to exhaust all parties and undermines peoples’ trust that the NHS is capable of preventing others from suffering the same experiences.
Commissioners are key to ensuring effective coordination takes place when care spans multiple organisations but system leaders also have a crucial role to play in providing the necessary oversight so that these complex investigations can be carried out successfully.
We welcome the programme of work being rolled out by the Department of Health in response to the Care Quality Commission’s Learning, Candour and Accountability: A Review of the way NHS Trusts review and investigate deaths of patients in England. We also look forward to seeing the contribution that the Healthcare Safety Investigation Branch (HSIB) makes to driving up standards in local investigations. However, these developments should not be seen as a panacea. In all these new initiatives and approaches, system leaders including NHS England and NHS Improvement must make sure provider organisations are supported to respond in a coordinated, open and transparent way when things go wrong.
Specific focus by HSIB and Health Education England in developing standards on approaches to conducting multi-organisational investigations and the development of single investigation reports drawing together collective lessons across care pathways would help greatly here.
Recommendation
Both NHS Improvement and NHS England have a leadership role to play in supporting local NHS providers and CCGs to conduct and learn from serious incident investigations, including those that are complex and cross organisational boundaries. NHSE and NHSI should use the forthcoming Serious Incident Framework review to clarify their respective oversight roles in relation to serious incident investigations. They should also set out what their role would be in circumstances like the Harts', where local bodies are failing to work together to establish what has happened and why, so that lessons can be learnt.
2 https://www.b-eat.co.uk/about-eating-disorders/types-of-eating-disorder
3 NICE guidelines and MARSIPAN guide
4 Eating Disorders: recognition and treatment; draft NICE guidelines; December 2016
5 Commissioning for Quality and Innovation payments framework