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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)

In this joint blog, Patient Safety Learning and Sling the Mesh highlight several issues with the specialist mesh centres set up by the NHS to provide treatment and surgery for women who have been harmed by mesh. We identify key patient safety issues and look at what needs to be done to ensure women receive timely, compassionate and appropriate treatment for complications they face as a result of mesh implants. Surgical mesh is a medical device implanted to support organs in various procedures. Thousands of women in the UK had mesh surgically implanted to treat pelvic organ prolapse and stress urinary incontinence, until its use was suspended due to safety concerns in 2018.[1] Surgical mesh has been linked to a wide range of serious health issues including chronic pain, incontinence, painful sex, recurrent infections, loss of mobility and autoimmune diseases. Prior to the suspension, women injured by mesh had been raising concerns about the safety of the procedure for years and campaigning for change through patient groups including Sling the Mesh. In 2020, the Independent Medicines and Medical Devices Safety (IMDDS) Review’s report, ‘First Do No Harm’, highlighted the lack of research evidence about safety aspects of pelvic mesh, the failure of the health system to listen to women injured by mesh and a lack of awareness among healthcare professionals about mesh complications.[2] One of the key recommendations of the report was that the Government should establish specialist mesh centres to offer comprehensive treatment, care and advice, including removal surgery, to women harmed by pelvic mesh implants. In response, the NHS has now established ten specialist mesh centres across the UK—nine in England and one in Scotland.[3] However, these specialist centres are beset with problems, preventing women harmed by mesh from receiving desperately needed treatment. Specialist mesh centres - what are the patient safety issues? 1. Long waiting lists The mesh specialist centres have unacceptably long waiting lists, with many women being told they won’t have an initial consultation for at least a year. Kath Sansom, founder of Sling the Mesh, said, “So many women on our Sling the Mesh Facebook page are reporting really long waiting lists to be seen for a first consultation—they feel hopeless about ever getting appropriate support and treatment for their complications.” 2. Lack of awareness among healthcare professionals Many healthcare professionals are simply not aware that mesh specialist centres exist. This is leading to women being told that nothing can be done for them, and that they are “too complicated” to deal with.[4] Addressing MPs in a Westminster Hall debate in February 2022, Alec Shelbrooke MP, co-chair of the Surgical Mesh All-Party Parliamentary Group, stated that “GPs are unaware of mesh complication centres and the referral process.”[5] 3. Surgical training inconsistencies In a previous blog, Patient Safety Learning and Sling the Mesh outlined concerns around inconsistencies in training for surgeons performing mesh removal which is undermining women’s confidence in the specialist centres.[6] One woman also told us, “[a surgeon] did offer to remove the mesh, but I just didn’t feel confident in his care as he had only done 15 mesh removals before, and not on a regular basis.”[7] 4. Centres being run by surgeons who implanted mesh Many women are reluctant to be treated by surgeons who spent years inserting the devices that have caused them so much suffering. Many members of the Sling the Mesh Facebook group have reported that surgeons who originally implanted their mesh did not take their concerns seriously. However, when women requested a second opinion, the mesh was often found to be causing obvious, visible damage, including slicing through nerves, the bladder and the vaginal wall, causing infections and pulling organs out of position. This breakdown in trust between surgeons and their patients undermines women’s confidence in the centres set up to treat their complications. 5. Lack of understanding about autoimmune complications A large number of women with surgical mesh implants report developing symptoms of autoimmune conditions such as lupus and Sjögren's syndrome following the surgery. In addition, around 50% of members on the Sling the Mesh Facebook group report suffering from fibromyalgia symptoms—although fibromyalgia isn’t currently officially recognised as a autoimmune condition, emerging studies are beginning to recognise a connection.[8] There have been small studies into the link between mesh and autoimmunity,[9] but much more research is needed to understand the issue and ensure women with these symptoms can receive appropriate treatment. Many women report that when they tell healthcare professionals about their symptoms, the link between mesh and autoimmune conditions is not acknowledged and little support is offered. This lack of understanding is present in specialties that deal with autoimmune conditions, such as rheumatology and immunology, as well as mesh specialist centres. Autoimmune conditions can have a major impact on health and quality of life, and this is another area where women feel that the specialist mesh centres are failing to deal with the devastating effects of surgical mesh. 6. Lack of appropriate after-care There is no guarantee for women who receive mesh removal surgery that it will improve their symptoms, and many feel that mesh centres are not offering enough post-operative support. Kath Sansom told The BMJ, “There is either very little or no aftercare, leaving some women having to go to their local [emergency department] with dangerous issues like pelvic blood clots or sepsis.”[5] How will specialist mesh centres overcome these issues? The Government and NHS leadership must recognise these issues and find ways to address both the shortage of provision and the lack of trust many women have in specialist centres. This will certainly involve bigger investments in training for surgeons, awareness raising amongst healthcare professionals and measures to address the damaged relationship between women and the healthcare system. There also needs to be consistent, joined up logging of women’s outcomes following removals. This would establish a trusted database that highlights which surgeons and centres are performing well, and who needs additional training. Another way to offer more timely care is to look beyond the NHS and give women more choice in where they have removal surgery and who assesses their case. The Scottish Government announced in July 2022 that NHS patients in Scotland would be eligible for funding to travel to a clinic in Missouri, USA for transvaginal mesh removal surgery.[10] The Scottish Government also has an existing deal with a Spire Healthcare facility in Bristol that allows Scottish women to access mesh removal surgery. The message from Scottish Health and Social Care Secretary Humza Yousaf MSP to women seeking removal surgery was that “we won’t put up any unnecessary barriers in your way.”[10] However, this option is not yet available in other parts of the UK, and some women have expressed concerns about travelling on a long haul flight after major, complex surgery. There are also worries about how aftercare would work if there were complications from a surgery performed outside of the UK. Establishing specialist mesh centres was only the first step in addressing the issues women face in getting the support they need. It is vital that the Government and NHS increase their efforts to ensure all women have fast and equitable access to mesh removal surgery. References 1 Devlin H. Government halts vaginal mesh surgery in NHS hospitals. The Guardian, 9 July 2018 2 First Do No Harm. The report of the Independent Medicines and Medical Devices Safety Review. Independent Medicines and Medical Devices Safety Review, 8 July 2020 3 Vaginal Mesh Complications. The British Association of Urological Surgeons website, last accessed 3 August 2022 4 Community post: Doctors shocking comments to women harmed by mesh. Patient Safety Learning , 22 June 2022 5 Wise, J. Specialist surgical mesh centres are not working, MPs are told. BMJ, 4 February 2022 6 Mesh Complications Training Pathway: Patient experiences must be recognised. Patient Safety Learning & Sling the Mesh, 17 February 2022 7 “There’s no problem with the mesh”: A personal account of the struggle to get vaginal mesh removal surgery. Patient Safety Learning, 1 May 2022 8 New study shows Fibromyalgia likely the result of autoimmune problems. Kings College London website, last accessed 1 September 2022 9 Cohen Tervaert, J. Autoinflammatory/autoimmunity syndrome induced by adjuvants in patients after a polypropylene mesh implantation. Best Practice & Research Clinical Rheumatology. 2018:32:4;511-520. 10 Dewar, C. Mesh patients to be able to travel to US for removal surgery. STV News, 12 July 2022 Related reading Doctors’ shocking comments reveal institutional misogyny towards women harmed by pelvic mesh - a Patient Safety Learning blog “There’s no problem with the mesh”: A personal account of the struggle to get vaginal mesh removal surgery ‘Mesh removal surgery is a postcode lottery’ - patients harmed by surgical mesh need accessible, consistent treatment

In this blog, Lotty Tizzard, Patient Safety Learning’s Content and Engagement Manager, looks at the safety issues faced by people with diabetes in hospital settings. Reflecting on feedback from Twitter users with diabetes, she looks at why so many people with diabetes fear having to stay in hospital, and asks what the NHS and its staff can do to make it a safer, less stressful environment. For people with diabetes (PWD), hospitals can feel like unsafe places. As a result, many are afraid of having to access emergency care or stay in hospital as an inpatient. This is partly because PWD are experts at self-management, with intricate knowledge of their own bodies. I have personal experience of this, having had type 1 diabetes myself for nearly two decades. As PWD, although we can't always predict how our diabetes will behave, our decisions on how to react to every situation become instinctive. When control is taken from our hands it feels terrifying; how could anyone else make a safe decision on our behalf? It feels like handing your baby over to a stranger! Harm in hospital - a reality for people with diabetes Sadly, all too often these fears are based in reality. When appropriately trained, healthcare professionals can make safe medication decisions for PWD, but research reveals a shockingly high prevalence of harm due to diabetes-related medication and treatment errors.[2] A recent blog on the hub looked at safety concerns raised by the Healthcare Safety Investigation Branch (HSIB) about insulin administration errors in hospitals. In HSIB’s reference case, the husband of the patient in question (who was in hospital for reasons other than diabetes) had raised concerns about the potential for a dosing error on two separate occasions, but he had not been listened to by staff. As a result, the patient was given five times her prescribed dose of insulin, in what could have been a fatal incident. These concerns go back years, with various organisations including Diabetes UK highlighting the need for action to make hospitals safer for people with diabetes.[1] The Getting It Right First Time (GIRFT) report on Diabetes published in November 2020 outlined some serious patient safety issues, including the fact that many hospitals have no effective system to identify patients with diabetes and have not trained ward staff in the safe use of insulin.[2] It also highlighted inconsistent timings and content of hospital food as an issue for PWD. According to GIRFT, the risk of developing diabetic ketoacidosis (DKA)—a life-threatening complication of type 1 diabetes—is between 40-60 times higher in hospital than the background incidence rate of the type 1 population. Most people with diabetes who have stayed in hospital will have their own tale to tell about issues with the care they received. My own experience bears out this concern that many healthcare professionals simply don’t know enough about the condition to look after people with diabetes safely and respectfully. Six years ago I had a planned caesarean section and my diabetes team warned me, “Whatever happens, don’t let them take your insulin pump. They’ll try, but you keep hold of it!” As diabetes specialists, they knew that as long as I was able to, I was the best person to administer my insulin and monitor my blood sugar levels. Type 1 diabetes is a balancing act, and being put unnecessarily on a sliding scale (a glucose and insulin drip often given to PWD when they are in hospital) can damage the equilibrium we work so hard to achieve, and can cause many issues. Of course, sometimes your medical situation may mean that the best course of action is being put on a sliding scale or someone else taking over your diabetes control. But there is a tendency for doctors to see it as the safe option, when it can be unnecessary and less safe than letting an inpatient look after their own insulin needs. Unfortunately, my diabetes team was right—as soon as the anaesthetist saw my pump he was insistent he should take it from me, and I had to be incredibly assertive to be allowed to keep it on. In the end, I did keep it connected and managed excellent control throughout my three days in hospital. Despite the excellent care I received from many other healthcare professionals, the incident left me feeling on edge and like I couldn’t fully trust the staff. What people with diabetes fear most about staying in hospital It’s wrong that the very setting supposedly designed to bring us back to health is a place that seems unsafe to many people with diabetes. Wanting to better understand the issues, I recently asked the diabetes online community on Twitter why going to hospital was scary—and their responses were concerning. I received Tweets from people in different countries, demonstrating that the problem is not confined to the NHS—people from around the world all told similar stories and raised similar concerns to people in the UK. Here are some of the issues they raised: Lack of healthcare professional knowledge about diabetes A number of people reported nurses not understanding the difference between type 1 and type 2 diabetes, with sometimes dangerous consequences. There were numerous reports of people with type 1 diabetes being denied insulin. One person said they had been denied insulin because they were over 50 and it was assumed they “must have type 2.” Another person described how an A&E consultant did not realise they needed insulin all the time, and refused to administer any more once they were out of DKA. This resulted in them going back into DKA and needing further treatment which could have been avoided with the right knowledge. Many PWD talked about the fact that healthcare professionals in inpatient settings did not know about how insulin pumps and continuous glucose monitors (CGM) worked. Some had never seen them before. With these devices becoming more and more common in the UK, it seems important that all healthcare professionals are trained to understand what they are, and the basics of how they work. No one would expect an intricate knowledge of how they work, but being able to recognise them, knowing where to look for more information and seeking to facilitate their use in inpatient settings would be a good start. Treating hypoglycaemia (low blood sugar) in hospital was also described by many as being very difficult. One person said, “I told them on a few occasions I felt ‘low’. Finally Lucozade got wheeled out but it was almost an inconvenience.” Having diabetes technology and equipment taken away Many PWD reported a fear of devices amongst medical professionals, describing how their monitors and pumps were taken and “locked away.” In one particularly worrying account, someone described being sedated when they protested against having their pump taken away. Many people described intense fear and the feeling of having all power taken away from them as a patient when their devices were removed. Healthcare professionals not listening to or trusting people with diabetes Most people were understanding that healthcare professionals can’t be expected to know everything about diabetes. However, the most commonly expressed frustration was about not being listened to when sharing information about their diabetes. This is the issue that was raised in the HSIB investigation. There was a perception expressed by people who responded that some healthcare professionals are “arrogant” and assume their knowledge is superior to that of their patient. Some people reported receiving sarcastic and disparaging remarks from healthcare professionals, which heightened their sense of being unsafe. One person said, “It’s dead hard to have to fight your corner while feeling so unwell.” Another person who had type 1 for many years reported being ‘diagnosed with type 1’ while in hospital, despite repeatedly telling staff she already had the condition. Lack of systems to support safety There were several reports of insulin drips running out and people being left without any insulin for hours. The reason often given for this was that no doctor was available to sign off the prescription. People also reported a lack of checks in places, for example, in nurse administration of insulin via a sliding scale. One person said, “The nurse left the glucose drip on but turned off the insulin. It terrifies me to think how bad this could have been.” One person reported a fellow patient having to fetch a nurse from the nurses station because no one was responding to their call button when they needed hypo treatment. This kind of scenario is doubtless linked to NHS staffing shortages that are currently causing many safety issues for staff and patients. Alongside these horror stories, I did come across examples of good practice which left PWD feeling confident that the care they were receiving was safe. One Twitter user described being able to keep her pump and continuous glucose monitor on during brain surgery, and was told by the medical team looking after her, “You are the expert on your condition, you advise us.” Another said, “In recent years [I have] been really impressed with how all staff just leave me to my own devices.” Another said that, “most HCP listened to me as T1 myself and welcomed my input.” However, most of these positive experiences were qualified with a ‘but’ followed by a story of a negative or dangerous experience of emergency or inpatient care. You can read more of the comments I received from PWD in this community thread on the hub. Improving safety: policy, training and staff attitudes This lack of consistency across services is a major problem—we can never plan where or when we will need hospital treatment, so it is important that issues are addressed across all trusts and settings. The GIRFT report highlights this issue, recognising that “there is still a large degree of variation in the quality and availability of targeted inpatient services, and in the frequency of hospital-acquired harm resulting from poor diabetes care.”[2] The National Diabetes Inpatient Audit (NaDIA) has been carried out across 81% hospitals over the past few years and is a useful tool in providing data to help specialities and trusts identify and overcome diabetes-related safety issues. For example, its 2021 report highlighted an increased prevalence of DKA among patients in surgical specialties and recommended “the establishment of processes to ensure that insulin is not stopped in people with type 1 diabetes.”[3] The information provided by NaDIA and the GIRFT recommendations are good steps forward, but whether services will have the resources and capacity to take action, is another question. People with diabetes tend to be great educators on the condition they live with, and some reported using their hospital stay as an opportunity to educate healthcare professionals looking after them about diabetes. But it shouldn’t be down to them. Diabetes is a complex condition that requires attention to detail and accurate knowledge to manage safely. Not everyone can be an expert, but helping staff identify when to ask for help from someone who is—and having the humility to do it—should be a priority. The GIRFT report observed that having an increased presence of diabetes specialists in inpatient settings can hugely reduce the number of diabetes medication errors. It recommends the presence of a seven-day multidisciplinary diabetes inpatient team in every hospital to ensure appropriate planning and support for patients with diabetes, whatever they are in hospital for.[2] Perhaps most importantly, hospital staff need to be trained to ask people with diabetes about their management and have a degree of trust in their judgement. Only then will PWD feel confident about going to hospital, whether in an emergency or for elective treatment—shared decision making shouldn’t stop at the hospital door. References 1 Making hospitals safe for people with diabetes. Diabetes UK, 2017 2 Rayman G, Kar, P. Diabetes GIRFT Programme National Specialty Report. NHS England & NHS Improvement. November 2020 3 National Diabetes Inpatient Audit (NaDIA) Harms 2020, England. Healthcare Quality Improvement Partnership. 2021

In this blog Patient Safety Learning considers the safety concerns highlighted by a recent report by the Healthcare Safety Investigation Branch (HSIB) into the administration of high-strength insulin from pen devices in hospitals. This blog argues that without specific and targeted recommendations to improve patient safety in this area, patients will continue to remain at risk from similar incidents. A new investigation report has been published by HSIB with the aim of helping to improve patient safety in relation to administering high-strength insulin from a pen device to patients with diabetes in a hospital setting.[1] The investigation focuses on the case of Kathleen who has type 2 diabetes and was using a high-strength insulin administered from an insulin pen device to manage her condition. The insulin in her pen device was Humulin R U-500 insulin, which is five times the strength of most insulins. On being admitted to hospital (for a reason unrelated to her diabetes) a nurse administered her insulin as measured by an insulin syringe, rather than the pen device. However, the syringe was intended for use with standard strength insulin and as a result Kathleen was given five times the dose of insulin that she had been prescribed. She received two overdoses of insulin in this way and on both occasions becoming hypoglycaemic (a condition where a person’s blood glucose level becomes too low, which can be dangerous if not treated quickly) and requiring medical treatment. Findings of the investigation Key findings from this investigation included: Variation among trusts in their use of high-strength insulin and the number of patients on these medications. Staff not always being familiar with the different range of high-strength insulins and associated pen devices, with significant variation in training and competency with respect of administering insulin. National safeguards were found to be inadequate to support the safe use of high-strength insulin by healthcare professionals. Inconsistent numbers of diabetes specialist nurses employed across trusts to supporting upskilling staff in relation to diabetes management. A “wholly preventable” incident? The patient safety incident described in this investigation is classed by NHS England and NHS Improvement as a Never Event. These are defined as: “Serious Incidents that are wholly preventable because guidance or safety recommendations that provide strong systemic protective barriers are available at a national level and should have been implemented by all healthcare providers”.[2] A National Patient Safety Alert in 2016 highlighted the risks associated with this specific type of incident and actions required by NHS organisations.[3] This included ensuring staff are made aware of the risks of extracting insulin from pen devices and that they have appropriate training to use these devices. However, in a report published last year, citing the specific case from this investigation, HSIB stated that in their view the barriers to prevent this type of incident “were neither strong nor systemic”.[4] They suggested that this event did not fit the definition of being “wholly preventable” and should be removed from the Never Event list, with new work needed to develop systemic safety barriers to prevent this reoccurring. In response, NHS England and NHS Improvement noted they reviewed the list of Never Events on an ongoing basis and would welcome any suggestions for implementing stronger safety barriers but made no specific commitments for action regarding this insulin safety incident. The findings of this investigation indicate that the barriers that are supposed to be in place tp ensure that this type of incident is “wholly preventable” may not be present amongst all healthcare providers. Patient Safety Learning is concerned that this reference case is unlikely to be a one-off and that there remains a significant risk of avoidable harm from this incident occurring again elsewhere in the NHS. Patient and family engagement Patient engagement is key to improving patient safety. In our report, A Blueprint for Action, we identify this as one of the six foundations of safer care.[5] We believe that patients should be engaged for safety at the point of care, if things go wrong, in improving services, advocating for changes and in holding the system to account. This investigation serves to underline the important role that a patient’s family members can play in highlighting patient safety issues. It was Kathleen’s husband who highlighted concerns with the Nurse Practitioner about her two hypoglycaemic events and querying the dosage she received. This intervention subsequently resulted in the awareness that she had been receiving the incorrect doses because the insulin had been administered by using a syringe rather than a pen device. This case raises concerns about how a patient’s family member’s expertise is used by healthcare professionals. The report states that Kathleen’s husband had initially told staff on the surgical ward about her medication, including that her insulin was five times stronger than standard insulin. However, we know from the investigation that despite providing this information, this wrong dosage was still given. The report notes that: “Kathleen’s family had concerns that the nurse administering Kathleen’s insulin in hospital might not be the staff member they had spoken with." Because of this, her Husband felt that "…it puts the responsibility on me' to ensure that Kathleen was given the correct dose.” Patients must be listened to, and their information, insights and concern must be taken seriously and responded to. In this case, Kathleen was prevented from coming to further harm by the timely action of her husband but unfortunately the opportunity to prevent the two overdoses not prevented. Importance of training The report highlights specific concerns about insulin safety training for staff, noting that at the Trust involved the national ‘Safe Use of Insulin’ e-learning programme had not been among the mandatory training requirements for staff (though it has now subsequently been included in this category). HSIB states that they were told by representatives from the NHS England and NHS Improvement National Diabetes Programme that training, appropriate to the person’s level of responsibility, should be provided to all healthcare staff involved with insulin. However, they also note that: “The investigation engaged with national leaders to consider how training and support for healthcare professionals could be enhanced to increase the knowledge around insulin use relative to each clinical role. The investigation was told that this would require support from a range of national stakeholders and would need to be co-ordinated by a central NHS body to ensure it was effective.” As a result of this, HSIB made the following Safety Observation: “It may be beneficial for insulin training to be competency based and specific to the healthcare practitioner’s role, in line with the ‘Diabetes: getting it right first time’ national specialty report.” However, there is no specific organisation who is identified as being responsible for the ownership and coordination of this task. Observations not recommendations HSIB Recommendations are directed at specific organisations who are asked to respond in 90 days of publication of the report. Their Safety Observations may or may not be directed at a specific organisation and require no formal response. This report makes no recommendations, but four observations. Patient Safety Learning is concerned that as these patient safety improvement points are only observations, with no specific organisation/s responsible for their delivery and assessment of effectiveness, these are unlikely to reduce the risk of a similar incident occurring in another trust. As noted in our recent report Mind the implementation gap, for HSIB Safety Observations there “appears to be no system to disseminate or act on these, beyond them being published towards the end of numerous patient safety reports”.[6] We believe that the impact of HSIB investigations on learning and improvement would be significantly strengthened with formal recommendations, which are then implemented in a timely and rigorous manner along with transparent performance monitoring and reporting. Considering the findings of this report, we think there may also be value in a specific assessment by NHS England and NHS Improvement of the rollout and implementation of training for healthcare professionals who dispense, prescribe and/or administer insulin (as recommended in the report Diabetes: getting it right first time.[7] References HSIB, Administering high-strength insulin from a pen device in hospital, 7 July 2022. NHS England and NHS Improvement, Never Events policy and framework, January 2018. NHS Improvement, Patient Safety Alert: Risk of severe harm and death due to withdrawing insulin from pen devices, 16 November 2016. HSIB, Never Events: analysis of HSIB’s national investigations, January 2021. Patient Safety Learning, The Patient-Safe Future: A Blueprint For Action, 2019. Patient Safety Learning, Mind the implementation gap: The persistence of avoidable harm in the NHS, 7 April 2022. Getting It Right First Time, Diabetes: GIRFT Programme National Specialty Report, November 2020. Related reading Improving safety for diabetic inpatients: 4 key steps (14 June 2021) Top picks: 5 key resources about diabetes (13 June 2021)