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In December 2022, Harry Vass died after experiencing Acute Behavioural Disturbance (ABD) and a complex disturbance in normal physiology.     In her first blog, Harry’s mother Julie told us about Harry and the events that preceded his death, during which he suffered with anxiety, addiction and psychosis. She talked about the inquest and how they learned of gaps in Harry’s care, that led the coroner to deem it an avoidable death.  In this second blog, Julie explains more about Acute Behavioural Disturbance and the changes she believes are needed to make sure patients like Harry are cared for appropriately.  Right after Harry was pronounced dead, a paramedic presented us with his belongings in a plastic hospital bag and we were sent home. We were told to ring the hospital bereavement office the following morning. We did so to be told that they didn’t have anything to do with coroner cases, so we knew then that Harry had been referred to the coroner. Our inquest was an article 2 inquest as Harry had died whilst detained under section 136 of the Mental Health Act and his liberty had been taken away for his own, and others, safety. This allows for the scope of the inquest to be slightly wider in exploring the issues prior to, and the cause, of death. The jury concluded that Harry had died of: “…sudden death, most likely as a result of terminal cardiac arrhythmia on a background of psychosis and recent cocaine use leading to an acute disturbance in behaviour and complex disturbance in normal physiology.” Acute Behavioural Disturbance is not a condition in its own right, so the term cannot be used on the death certificate as a standalone cause of death. As the coroner felt that this death was avoidable, a Prevention of Future Deaths Report was written and later a response was received from the Royal College of Nursing. What is Acute Behavioural Disturbance? Acute behavioural disturbance is an umbrella term used to describe a presentation which can include abnormal physiology and/or behaviour. Acute Behavioural Disturbance has previously been called excited delirium, acute behavioural disorder, or agitated delirium. The below represent signs which may be present in Acute Behavioural Disturbance - one or more may be present. Agitation Constant physical activity Bizarre behaviour (incl. paranoia, hypervigilance) Fear, panic Unusual or unexpected strength Sustained non-compliance with police or ambulance staff Pain tolerance, impervious to pain Hot to touch, sweating Rapid breathing Tachycardia.[1] Although the term Acute Behavioural Disturbance has been used over a long period, it is still not consistently known, used or understood across different professional groups. Seven key areas for change Throughout the last two years we have become more aware of the gaps in Harry’s care and support in the lead up to his death. I believe focusing on the seven areas below would help to prevent future deaths. 1. Raising awareness and understanding Making sure that healthcare professionals working in emergency departments and mental health units (especially those caring for acutely ill patients) receive training and education in Acute Behavioural Disturbance. This must include nurses who are the professionals most likely to detect physical changes in a patient’s condition. 2. Consistent terminology Although much has been published since Harry’s death, there is procrastination over terminology used to describe this presentation. There should be collaboration on immediate actions needed, using agreed reference terms, for example; “physiological disarray with psychosis, particularly following the use of illicit drugs”. The simple addition of a few words to training policies and packages could be very powerful in saving lives. 3. Collaborative guidance The National Institute for Health and Care Excellence, the Royal College of Nursing, Royal college of Psychiatrists and Royal College of Emergency Medicine need to agree on the wording of appropriate policies to guide and educate professionals facing this presentation. It is essential to bring nurses to this forum as they have previously been excluded. 4. Post-mortem training The Royal College of Pathologists/ Forensic Pathologists could think about training and education for those undertaking post-mortems for these patients. Knowing what to look for and finding evidence is extremely difficult. In our case, we were told that Harry had previously damaged heart muscle caused by illicit drugs which was not the opinion of the expert witness. 5. Data collection and coding NHS England should have the coding reviewed/ adjusted. “Psychosis with physiological disarray with or without illicit drug use“ (or similar wording) should be available as a coding choice for clinicians and coders. This would allow for proper data capture for these presentations in the NHS. 6. Monitoring of prevention of future deaths reports I believe there should be an overarching body to monitor prevention of future deaths reports, and the responses to these. This body should support any learning and the required remedial actions within appropriate timeframes. It should hold organisations accountable for investment and implementation of remedial plans and ongoing measurement of agreed set outcomes. 7. Research and early intervention We need more research to fully understand those at risk of the presentation of Acute Behavioural Disturbance and why. Early warning signs would then be identified and recommendations made for care pathway interventions for better outcomes. What else can healthcare professionals do? Simply be aware of patients presenting with psychosis, particularly with a history of illicit drug use and previous mental health difficulties. Patients with extreme and prolonged agitation can become physically unwell leading to the medical emergency of cardiac arrhythmia and arrest. Take frequent basic physical observations to be alerted to any changes in physical condition. Healthcare professionals already have training and policies on dealing with a deteriorating patient should a change be detected. What else can Trusts do? Make sure relevant staff receive training, education and support in Acute Behavioural Disturbance. Patients taking illicit drugs who may have mental health issues already should be offered support at the earliest possible opportunity to avoid an escalating situation. Drug and alcohol liaison teams working in emergency departments is good practise and can offer clear pathways to support for these patients. Consider partnership working with wider public services to improve mental health support – Avon and Somerset Constabulary have made changes including working with the ambulance service. Trusts should be proactive in providing an appropriate environment for the care and safety of the patient, staff and other patients. An appropriate environment also avoids the potentially discriminatory actions of removing a patient from a busy emergency department because they are disruptive, without proper examination and care. There is a conflict of interest in offering a family a duty of candour when care doesn’t go to plan, and the need to protect the Trust from potential litigation. We found this so frustrating as it meant that what happened to Harry was not fully shared and understood until the inquest some 18 months after his death. I’m not sure how this could be addressed but it’s a wider issue for Trusts to consider. Our family would have felt far less stressed and emotionally exhausted if we had been told more of the facts and what had not gone to plan at an earlier point. Support and advice for other families Over the weeks and months leading up to the inquest there were periods of so much activity that I found it helpful to write a journal. Journal keeping allowed for thoughts to be put down on paper and “parked” but it has also proved to be good for checking back on dates and events. I would recommend keeping a journal to anyone in a similar position. On the good side, there were people and organisations that we were so grateful for and would highly recommend having their support and input. We would not have made it through this period without them. The Mental Health NHS Trust had a Family Liaison Officer who was able to field our questions, update us on issues such as the serious incident investigation and organise meetings with professionals at which she would support us. I don’t know if this is common practice, but we had clear benefit from this role. We found our way to INQUEST, a charitable organisation which supports families like us through the inquest process. We had our own case worker who was amazing at supporting us in both practical ways as well as giving us valuable information and guidance. We really felt we were not alone as she checked on us regularly. She assisted in the appointment of lawyers and a barrister for the inquest and was able to respond to our questions which were many given we had never been in this situation before. We still have contact now. Final thoughts Since Harry’s death there have been further deaths in hospitals with very similar stories to Harry’s. There is a general feeling that there has been an increase of cases. Use of cocaine and illicit drugs, increase of poor mental health in the population and a developing awareness of this presentation are possible associated factors. We have looked at other recent prevention of future deaths reports to find that Acute Behavioural Disturbance is mentioned fairly consistently. Our concern is that these reports are either not responded to, or are responded to inadequately and no effective action is taken. There is no body responsible for the oversight of these reports and to hold those organisations who can effect change to account. Our lives have changed for ever now. We try not to be angry as we know that no one intended for this to happen. We do want learning to be taken away from this unthinkable event in the hope that something similar will not happen to other families, this is so important to us. [1] Royal College of Emergency Medicine, October 2023. Acute Behavioural Disturbance in Emergency Departments (version 2). Share your insights Do you have insights to share around patient safety? Could your experiences help guide improvements? Or perhaps you're a healthcare professional making changes to reduce risk to patient safety? If you would like to contribute, please comment below (you'll need to sign up here first for free) or contact the editorial team at [email protected]. Related reading Harry’s story: Acute Behavioural Disturbance Prevention of future deaths report: Harry Vass (13 June 2024) Mental Health improvements and initiatives implemented in Avon & Somerset Constabulary Consensus on acute behavioural disturbance in the UK: a multidisciplinary modified Delphi study to determine what it is and how it should be managed (9 May 2023) INQUEST: Skills and support toolkit Acute behavioural disturbance: a physical emergency psychiatrists need to understand (14 October 2020)