Ignoring the Alarms follow-up: Too many avoidable deaths from eating disorders Contents

Conclusions and recommendations

Training of doctors and other medical professionals

1.We conclude that there is a serious lack of training for doctors about eating disorders and the treatment of eating disorder patients, as evidenced, for example, by GPs relying on BMI as a sole indicator of whether people can access treatment for eating disorders, contrary to published guidance. This is particularly important because preventing patients from receiving treatment for eating disorders by reference to single measures such as BMI prevents the access to early treatment which can help prevent a patient from becoming seriously ill. While the number of hours spent in training does not on its own determine the competence of clinicians, two hours of training on such a complicated topic is insufficient. (Paragraph 16)

2.The steps taken by the General Medical Council (GMC) in support of the PHSO’s recommendation are welcome. While we acknowledge the limits of the GMC’s powers, the GMC has a strong influencing role to play, which would recognise the urgency of taking this work forward. We look forward to receiving a summary from the General Medical Council of the responses they have received from medical schools about the way eating disorders are taught. We recommend the GMC acts on this information and uses the responses received from medical schools to identify examples where education has not been effective, to share best practice where it is identified and overall use its influence to ensure that medical schools improve outcomes in relation to eating disorders. We recommend that the GMC undertakes to write again to medical schools after one year to find out what changes to medical student training have been implemented. (Paragraph 28)

3.We recognise that for eating disorder training to improve postgraduate training is also critical. We agree with witnesses who identified the need for greater cross-college working to ensure eating disorders are included in relevant curricula and support the Academy of Medical Royal Colleges’ work in coordinating a discussion between relevant specialties and colleges on sharing resources. We note that participants in the informal seminar highlighted the importance of training for General Practitioners in this context. We recommend that the Academy should also coordinate the necessary actions arising from this work and report on how the learning from these discussions are implemented. (Paragraph 29)

4.There must be wider take up of the Management of Really Sick Patients with Anorexia Nervosa (MARSIPAN) guidelines. They are a vital tool to promote active communication and consultation between psychiatric services, including eating disorder and liaison psychiatry, and medical services and includes for quick reference an all-age checklist for use by clinicians. These guidelines are lifesaving for people who have anorexia nervosa. We recommend that Health Education England should work with NHS England to improve uptake of the MARSIPAN guidance by practitioners, particularly practitioners who are not specialists in eating disorders, and the Care Quality Commission should ensure that the MARSIPAN guidelines are being adopted at all levels in NHS England. (Paragraph 32)

The quality and availability of adult services, and the transition from child to adult services

5.We welcome the increased funding for mental health within the NHS long term plan but we recommend that NHS England set out how much of this funding will be specifically allocated to adult eating disorder services. but we recommend that NHS England set out how much of this funding will be specifically allocated to adult eating disorder services (Paragraph 45)

6.We support NHS England’s plans to transfer investment from inpatient services to community care which has the potential to deliver greater value for money. Better community service provision is essential not only to help prevent people from becoming so ill that they need hospitalisation but also to support people who are discharged from hospital, to avoid relapsing and therefore requiring further hospitalisation. Although we accordingly welcome greater funding for community services, NHS England must also ensure that there is adequate inpatient capacity. (Paragraph 46)

7.In our informal seminar with people who had lived experience of eating disorders, we were told there was potential for more involvement of family or carer support in adult eating disorder services. Though we recognise this is a complicated matter, such support can be extremely important for people with eating disorders. (Paragraph 47)

8.We welcome the steps that have already been taken and that the NHS is piloting the introduction of a four-week waiting time target for adult and older adult community mental health teams, which has the potential to improve the provision of services for patients. We hope this will be transformed from a pilot to an appropriately funded business as usual target. (Paragraph 49)

9.Although there are a number of welcome ambitions to improve quality and availability of adult eating disorder services, it is clear that there has not yet been delivery of substantive improvements in that provision. Accordingly we find it disturbing that the Government claims that the PHSO’s recommendation on achieving parity of adult eating disorder services with child and adolescent services has been implemented, when this it is clear that this is not the case. This work must be done and this should be championed by the PHSO Delivery Group. As part of its work under this PHSO recommendation, we recommend the NHS have particular regard to ensuring the needs of autistic patients are met. (Paragraph 50)

10.NHS England established an Adult Eating Disorder Expert Reference Group, chaired by Professor Tim Kendall and Jess Griffiths, an expert by experience, to help review the data and modelling for the NHS Long Term Plan. We Commend NHS England for establishing the Adult Eating Disorder Expert Reference Group to help review data and modelling for the NHS Long Term Plan but the Government must publish the Expert Reference Group’s report as soon as possible. If the Group’s report has not been published by the time the Government publishes its response to our report, the Government should provide a timeline for the publication of the Expert Reference’s Group’s report in that response. (Paragraph 53)

11.A lack of precise information on the prevalence of eating disorders is shocking, given the claims that up to 1.25m people are suffering from eating disorders and the fact that eating disorders have the highest mortality rate of mental illnesses. This vagueness limits the ability of NHS commissioners to gauge what services need to be provided and encourages them to devote resources to better recorded diseases and conditions. We welcome the inclusion of SCOFF (the eating disorder screening tool) in the 2019 Health Survey England to improve this information about the prevalence of eating disorders but recommend as a matter for urgent action that NHS England commissions a national population-based study to accurately assess the number of people who have eating disorders. It is essential such research does not simply look at the numbers of people who have been diagnosed with eating disorders, the evidence we have heard suggests that eating disorders are under-reported and are inherently secretive conditions. (Paragraph 57)

Coordination of services

12.We welcome the inclusion of coordination in the new NICE quality standard on eating disorders but further work is necessary to embed those standards. We recommend that the PHSO Delivery Group, as part of its work, commission an audit of the extent of implementation of the NICE guidelines. This could be completed over the next few months (before we report again on this topic - see paragraph 84 below). (Paragraph 62)

User training to address gaps in provision of eating disorder specialists

13.All junior doctors should complete a four-month psychiatry placement and we welcome the Minister’s support for this proposal. Such placements should include exposure to eating disorders. We recommend Health Education England take this recommendation forward and assess whether it is possible to ensure each such placement includes exposure to patients with eating disorders. (Paragraph 68)

14.We welcome the efforts of Health Education England to develop competency within the wider workforce in relation to eating disorders. People with eating disorders can present in a variety of circumstances and through a number of different pathways, therefore improving the wider workforce’s knowledge of eating disorders can significantly improve the early detection and provision of support for people with eating disorders. This work should specifically consider the provision of training to nurses and nurse practitioners. Health Education England should take steps to facilitate the delivery of such training by people who have lived experience of eating disorders. In circumstances where that is not viable, solutions such as online training should be pursued. (Paragraph 69)

Improving investigation and learning, in particular from serious incident investigations

15.Investigations into, and NHS learning from, serious incidents is essential to helping ensure that the circumstances leading to avoidable deaths do not reoccur. It is heartening to hear from the Care Quality Commission that some trusts are establishing more robust practices for investigating and learning from deaths but such change must be made throughout the whole of the NHS. Cultural change is essential to achieve this. We believe the Care Quality Commission’s inspections provide one way for the NHS to determine the progress it is making in culture change; namely the shift from a closed and defensive blame culture to one of openness, willingness to hear and tell the truth, and to learning from mistakes to avoid future harm to patients. It is essential that the NHS moves from a culture which falls into short-term reputation management to one which facilitates open learning and longer-term improvements to service provision. The NHS should further consider how it can assess the progress it is making in changing the culture surrounding investigations and learning. Such cultural change must be regarded as a high priority. (Paragraph 78)

16.We welcome the initial work of Healthcare Safety Investigation Branch (HSIB) in investigating the causes of clinical incidents without attributing blame and in order to disseminate learning for the future and the seven-point “framework for professionalising safety investigations in the NHS. We call on the Government to introduce the Health Service Safety Investigations Bill as soon as possible in order to provide HSIB with statutory powers and independence, and to enable it to provide a statutory ‘safe space’ for clinicians and patients and their families to speak freely, like other safety investigation bodies. (Paragraph 79)

Final conclusions and recommendations

17.Welcome steps are being made in response to the PHSO’s report, but sufficient progress has not yet been made in response to the PHSO’s report. We agree with Dr Kendall’s assessment that the PHSO Delivery Group needs to continue to meet. It is essential that there is a delivery body that has responsibility for ensuring these recommendations are taken forward. We recommend that the PHSO Delivery Group not be disbanded until it can report with confidence that all the recommendations have been implemented. (Paragraph 81)

18.We are encouraged by the Minister’s and the Department of Health and Social Care’s interest in this subject. They can play a critical leadership role in providing impetus to ensure timely progress is made on the PHSO’s recommendations. A number of steps have been set out in the evidence we have received but we do not think there is enough urgency. Such urgency must reflect the fact that lives will continue to be lost under the status quo. There must accordingly be a clear picture of what actions will be delivered under each recommendation, what funding will be assigned to delivering those actions and by what timeframe those actions will be complete. In its response to this report the Government should produce a timeline against each of the PHSO’s recommendations; what steps have been taken, what further steps will be taken under each recommendation and what funding will be allocated. These actions should have clear responsible owners and deadlines for completion. (Paragraph 83)

19.Once proceedings in court are finished, we plan to consider the PHSO’s investigation of Averil Hart’s case in greater depth. At that time, we will return to the PHSO’s wider recommendations to assess what progress has been made. (Paragraph 84)

Published: 18 June 2019