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In December 2022, Harry Vass died after experiencing Acute Behavioural Disturbance (ABD) and a complex disturbance in normal physiology. Harry’s death was found to be avoidable as carers were not fully aware of this condition associated with acute psychosis. In this blog, Harry’s mother Julie tells us more about Harry and the years that proceeded his death, during which he suffered with anxiety, addiction and psychosis. Julie describes the barriers they faced in getting the right support and care for Harry before he died and highlights the need for healthcare staff to have a greater awareness of ABD and the associated risks of a medical emergency. You can also read a second blog by Julie, where she explains more about Acute Behavioural Disturbance and the changes she believes are needed to make sure patients like Harry are cared for appropriately. Harry Harry was born in Bristol in 1998, a second child with an older sister, to working parents. He had a good childhood attending a local school and did well with good educational achievements. He was a happy boy, had friends and hobbies with football and music being his greatest loves. He had a great sense of humour and when Harry was around, we laughed a lot, often until our sides split! There had been clear symptoms of ADHD earlier in his childhood, but they were manageable. A change of school and friendship groups at 16 years old brought his struggles to a head. Ultimately this led to a formal diagnosis of ADHD and access to supporting medication, both of which helped us all (including Harry) to understand him better and manage his day-to-day anxieties. When addiction entered his life In the sixth form, Harry was introduced to cannabis smoking, and we often reflect that addiction started here for him. He still managed to get good exam results and went on to become a chef. He worked at a local pub, running the kitchen for over 2 years before Covid brought furloughing into play. Harry was at home throughout the Covid period, and it was during this time that cocaine was introduced into his life. We now know that ADHD and cocaine are a “match” and Harry suffered with addiction, which resulted in him leaving his job in December 2021. He became extremely ill for two months, suffering from psychosis. He was prescribed medication, and the mental health crisis team oversaw his treatment at home on a daily basis during that period. As this illness was linked to his addiction, Harry decided to go to rehab, with good results. He had a good period over the spring and summer of 2022 - he went to the gym, played sport, got a job working in the kitchen of a local care home and began to make plans for the future. He wanted to travel America, and he was starting to make career plans. Struggling to access the right support That Autumn, Harry became depressed, he disengaged with the world, took time off sick and occasionally took cocaine and other illicit drugs to self-medicate with the hope of improving his mood. He was given antidepressant medication which had little effect. He engaged with mental health teams but was not able to see a psychiatrist at that time, which he felt was important. He was convinced that his problems were not all about ADHD and anxiety. A psychiatric assessment was scheduled for January 2023, which would end up being the month after Harry died. I remember several frustrations at the time that felt like barriers to Harry getting the care he needed: The ADHD team would not see Harry when he was taking illicit drugs, so he had a long period without their support. The Mental Health Crisis team would not see Harry when he was taking drugs even when feeling suicidal as they felt his symptoms were induced by illicit drugs. We attended the Emergency Department twice in December 2022 with drug related problems, but there was no link to agencies offering help with the reduction of illicit drug taking. Harry was discharged home without support. Access to a clinical psychiatric review seemed very restricted and it was “only to be kind “that Harry did receive an appointment to see a psychiatrist, an appointment that was to be a month after his death. Signs of psychosis Over the Christmas period of 2022, Harry began showing signs of psychosis, he had taken cocaine on Christmas Eve and on Christmas Day. We recognised the same symptoms from the year before. He was hyper anxious and extremely agitated; he believed that people were after him and would kill him. He felt unsafe at home and left the house around 3.40am on 26th December, despite our endeavours to keep him there. We called the Police as we were so concerned for his safety and felt he should be detained. Unfortunately, they returned him home thinking that he might settle and feel safe in his home environment. Once home they lost their powers to detain him. We spent the day trying to get him to sleep as he had not slept for a while, and we had learnt from previous experience how this could resolve the psychosis. This was not possible and by 3pm Harry was deteriorating. The Emergency Department We took him to the Emergency Department at our local Hospital. Harry was seen quickly and triaged as a high-risk mental health patient. In a quiet single room, he had physical observations taken, ECGs and blood taken. He was assessed by two mental health liaison nurses who felt that he had drug induced psychosis. They were very caring in their approach and planned to discharge Harry with medication to induce sleep. The department was very busy at the time. At about 9pm Harry went to the toilet, and on return told us he had taken cocaine. After this, his condition escalated considerably, and he was moved to the main department where he could be better observed. He was given Lorazepam twice. Despite this, he remained extremely agitated, frightened and active, although he had short periods where he was calmer and even appeared lucid. He was sweating profusely and began to look physically unwell. Transferred to a mental health unit Because of the agreed diagnosis of psychosis and the level of agitation, the medical staff felt that Harry was not safe to be cared for in the department and posed a threat to others. The police were called to use the Mental Act section 136 to detain Harry at the secure Mental health unit on the Hospital campus. It was explained to us that Harry would be safe there and fully assessed by a psychiatrist in the morning. The policeman asked the medical team if Harry might have “ABD”. We didn’t know what this was but we heard the discussion, and their response, “no, this is psychosis “. Harry was taken by two policemen to the mental health unit at 10.45pm. We returned home thankful that Harry was safe and would receive proper care and an assessment of his mental health. The day Harry died The telephone woke us at 05.45am the following morning, 27th December. The nurse from the mental health unit informed us that Harry had not settled until about 3am, had then began to vomit and become ill. They had called an ambulance, but Harry continued to deteriorate. Another call for an ambulance was made and before this arrived, Harry’s heart had stopped. They asked us to come as quickly as possible to the Emergency Department as Harry was being transferred back there with an ongoing resuscitation. We arrived there about 06.10am and the Consultant in charge of Harry explained to us that he was very seriously ill and that they were doing everything they could to reverse the drugs he had ‘on board’. We were allowed to be with him whilst the resuscitation was ongoing, but his blood gases were found to be ‘incompatible with life’ and he was pronounced dead at 06.36am. The information we were given at the time about why Harry had died seemed to be around drug overdose. My last words to Harry had been about his choices around drugs, and that we were not angry with him. I now regret this deeply as he didn’t die as a direct result of drugs. Reflecting back on that night, I remember we asked ourselves: Should the Police have taken him to the Emergency Department in the early hourly hours of 26th December instead of bringing him home? Should we have taken him earlier in the day? What was ABD and why was this raised by the policeman? The inquest We waited for 18 months for the Inquest to be held. It was an article 2 Inquest with a full Jury. It was painful to hear the detail leading up to, and at, Harry’s death from the professionals involved and to hear the expert witness opinion. We heard that no physical observations were undertaken in the Emergency Department after the first ones taken on arrival at approximately 5pm, discharge was at 10.45pm when he was taken to the mental health unit. He was restrained in different ways on a few occasions. He did have some short periods of being lucid and was able to apologise to staff for his presentation, they said he appeared kind with a nice sense of humour. At around 3.30am he appeared to settle on a mattress on the floor; they thought he was sleeping. He then began to vomit around 04.10am and at this point his temperature was 39.9c (hyperthermic) pulse in excess of 186 (very rapid) blood pressure unreadable and blood oxygen saturation was 80% (very low). No physical observations were taken on unit until Harry became unwell at around 04.15am. He had escalated in behaviour, was uncontainable in the room, was sweating profusely, hitting walls and himself, scratching at his skin and eyes, responding to unseen stimuli. Aside from not having taken physical observations on the mental health unit, we were disappointed to hear that the duty psychiatrist did not examine Harry other than view him through a glass window. When his heart stopped, this clinician was not skilled enough to insert the tube required to inflate the lungs during the resuscitation. This meant that a nurse had to take this action. Cause of death The expert witness was an experienced pathologist who was clear that Harry had died of ABD (Acute Behavioural Disturbance) - “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.” We heard that almost none of the professionals and staff that had cared for Harry in the Emergency Department knew of Acute Behavioural Disturbance. The one that had, thought he had seen it before, but Harry didn’t fit that picture. We also heard that Acute Behavioural Disturbance, and the associated risks of medical emergency, were not known by the mental health staff. Included in the conclusion of the jury: “Given the evidence regarding his treatment in the Mason Unit, it is probable that the failure to perform adequate observations, both physical and non-contact, contributed to Harry’s death as, by failing to prioritise the accurate monitoring of his physical condition and therefore identify it’s deterioration, an opportunity to transfer him promptly back into the Emergency Department was missed.” Included in the ‘Coroner’s Matters of Concern’: “Due to Harry’s level of agitation, he did not undergo the level of observations that would and should have happened either in the emergency department or once on the Mason Unit which may have assisted in assessing his physical health. It was clear that none of the mental health nursing staff were aware of ABD and the fact it is a medical emergency. The decision as to whether a person has ABD is important, Dr Delaney said that” this group are vulnerable to cardiac arrest”, that “deaths are multifactorial”, that “normally in the background a body is maintaining safe limits for e.g. pulse rate, blood pressure, temperature, but with acute disturbance in behaviour the body loses control of these safe parameters.” Life after the unthinkable I was terrified that I would lose the memory of Harry’s face so we gathered together all our photos of him. Silly really as his face, voice, smell and laughter are still with me clearly even now, nearly two years on. You’ll think we’re mad but each of us talk to him as though he is still here. We still lay four places at the table without thinking, we still go to pull over in the car to offer a lift home when we think we see him out. I don’t know how long that takes to go away. 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. Read Julie ’s second blog, where she explains more about Acute Behavioural Disturbance and the changes she believes are needed to make sure patients like Harry are cared for appropriately. 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 Acute Behavioural Disturbance: preventing future deaths (Julie's second blog) 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)

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)

The Child Health Clinical Outcome Review Programme has produced this review of the barriers and facilitators in transitioning children and young people with complex chronic health conditions into adult health services. Based on data on children and young people with one of 12 complex conditions identified from a sample period between 1st October 2019 and 31st March 2021, the report concludes that there is no clear pathway for the transition from healthcare services for children and young people to adult healthcare services. The report finds that the process of transition and subsequent transfer is often fragmented, both within and across specialties, and that adult services often sit only with primary care. It argues that developmentally appropriate healthcare should be everyone’s responsibility, with adequate resources needed to allow this to happen. The Inbetweeners also calls for services to: involve young people and parent/carers in transition planning and transition to adult services improve communication and coordination between all specialties be organised to enable young people to transfer to adult services effectively, and provide strong leadership at Board and specialty level at all stages of transition and transfer. The report’s recommendations highlight areas that are suitable for regular local clinical audit and quality improvement initiatives by those providing care to this group of patients. It suggests that the results of such work should be presented at quality or governance meetings, and action plans to improve care should be shared with executive boards.