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*Trigger warning: content related to suicide Rachel Gibbons is the Vice Chair of the Psychotherapy Faculty at the Royal College of Psychiatrists. In this opinion piece she draws on personal and professional experience to explore the complex relationship between patient safety and inpatient suicide. Rachel argues that fantasy-driven ideas of control and simplistic blame narratives do profound harm—both to clinicians and those bereaved. I'm a consultant psychiatrist whose professional trajectory was profoundly shaped by a harrowing experience early in my career. In 2009, during my first 18 months as a consultant, four of my patients died by suicide. The intense aftermath—serious incident inquiries, coroner's court appearances, and the emotional fallout—fundamentally changed who I was, both personally and professionally. Before this, I was someone different; afterward, thoughts about suicide dominated my consciousness. Since then, I've dedicated my professional life to deeply understanding suicide, it’s devastating impact on those bereaved, and the complex interactions involved in patient safety. Central to my work is the question of truth in patient safety—how to engage honestly and realistically with this complex subject. Too often, safety is driven by fantasies of control rather than by realistic expectations and honest acknowledgment of uncertainty. When our expectations are unrealistic, it harms clinicians and bereaved families alike. The profound trauma of inpatient suicide When suicide occurs within inpatient settings, its impact can be especially devastating. These tragedies unfold in two distinct scenarios: deaths occurring off the ward, and those taking place directly on the ward itself. Deaths on the ward can be especially traumatic—sometimes violent and occurring in the immediate presence of staff and other patients. I have personally been involved in such cases, witnessing first-hand the traumatic ripple effect across an entire organisation. The sudden, shocking nature of an inpatient death reverberates, intensifying every response, from the serious incident inquiry to appearances at the coroner’s court. Unfortunately, we don’t often give sufficient attention to the profound trauma staff and patients experience when exposed to inpatient suicide. If not effectively addressed, this trauma can linger unresolved for years, manifesting repeatedly in patterns of care—a phenomenon Freud described as "repetition compulsion". Unprocessed trauma can harm staff and affect the safety and wellbeing of future patients. The double-edged sword of patient safety investigations It’s essential that every inpatient death prompts a thorough patient safety investigation. However, the issue isn’t the investigation itself; it’s how easily the concept of patient safety can become distorted following a traumatic death. When a suicide occurs, intense emotions and destructive forces are unleashed within an organisation. This often results in attempts to create a simplistic causal narrative for the tragedy—a narrative that can never truly capture the complexity of suicide. In the aftermath of suicide, people’s ability to mentalise—to think clearly and compassionately—is severely compromised. The intense emotional turmoil often triggers a search for blame. As the deceased patient’s agency is often discounted, blame shifts rapidly towards clinicians. I've seen distressing examples where clinicians become scapegoats, absorbing an organisation’s collective anxiety and guilt. Organisations can behave almost like sentient beings, attempting self-preservation by shifting blame onto individual staff, often with devastating personal and professional consequences. Improving support for bereaved families The anxiety surrounding inpatient suicides can make it challenging for organisations to engage compassionately and openly with bereaved relatives. Defensive postures, though understandable given potential repercussions, ultimately harm those grieving. One proven way to mitigate confrontation and provide genuine support is appointing Family Liaison Officers. These dedicated individuals advocate for bereaved families, offering emotional support, clarity, and careful communication, thus alleviating confrontational dynamics. Supporting staff in caring for the bereaved Staff must not be left unsupported in their interactions with grieving families. Effective engagement with bereaved relatives requires thoughtful, organisational leadership and strategic planning. I've witnessed harmful situations where clinicians, driven by guilt, rush prematurely to communicate with bereaved families. Such impulsive actions, however well-intentioned, can cause unintended harm. Again, Family Liaison Officers are instrumental in mediating this delicate and emotionally charged communication, providing guidance and helping staff navigate difficult interactions more safely. Creating reflective spaces for staff Mental health work, particularly in inpatient environments, is intensely emotional and psychologically demanding. In the aftermath of a patient suicide, it becomes vital for organisations to provide reflective spaces—dedicated times and places where clinicians can safely process traumatic experiences. Without such spaces, unprocessed trauma can manifest as "acting out," leading to harmful patterns in care delivery and clinician burnout. Embedding regular reflective practice is essential, enabling staff to maintain their psychological wellbeing and enhancing patient safety through thoughtful, compassionate care. Final thoughts: seeking truth and compassion in patient safety Throughout my career, my core interest remains the truthful engagement with suicide and patient safety. We need honest, realistic frameworks that acknowledge limitations, complexity, and uncertainty. Fantasy-driven ideas of control and simplistic blame narratives do profound harm—both to clinicians and those bereaved. True safety comes from authentic, reflective practice, compassionate communication, and careful systemic support. Further reading on the hub: Rethinking suicide prevention: from prediction to understanding

These FAQs on the Duty of Candour were produced by the Patient Safety Management Network in collaboration with experts from the Care Quality Commission (CQC) and NHS Resolution, and address the most pressing concerns about Duty of Candour. Read more about how and why these FAQs were developed. These FAQs should be read in conjunction with the published CQC guidance Regulation 20: Duty of Candour and are accurate as of March 2025. Any updates to the CQC guidance beyond this date will not necessarily be reflected in these FAQs and the CQC guidance should be the primary source of guidance. You can download a pdf of the FAQs here: PSMN_Duty of Candour FAQs_040425.pdf The Professional Duty of Candour 1. What is the Professional Duty of Candour? The Professional Duty of Candour applies to individual healthcare professionals, requiring them to be honest with patients when something goes wrong with their care. This includes taking responsibility, apologising, explaining what happened and working to prevent future occurrences. It is enforced by professional regulatory bodies such as the General Medical Council (GMC) and the Nursing and Midwifery Council (NMC). The Statutory Duty of Candour – an outline 2. What is the Statutory Duty of Candour? The Statutory Duty of Candour applies to every health and social care provider that the Care Quality Commission (CQC) regulates. It is a legal obligation that requires registered providers and registered managers (known as ‘registered persons’) to act in an open and transparent way with people receiving care or treatment from them. 3. Who does the Statutory Duty of Candour apply to? The Statutory Duty of Candour applies to all health and social care providers regulated by CQC. This includes NHS and private healthcare organisations, care homes and other regulated services. 4. When must the Statutory Duty of Candour be applied? There are two parts of the Statutory Duty of Candour: The overarching duty to be open and transparent with people receiving care. This part applies at all times, in all cases. Notifiable Safety Incidents (NSI). Where an NSI has occurred, the regulation specifies exactly how the Duty of Candour must be applied. The Statutory Duty of Candour – What is a Notifiable Safety Incident (NSI)? 5. What is a NSI? A NSI is a specific term defined in the regulations and it should not be confused with other types of safety incidents or notifications. An NSI must meet all of three of the following criteria: It must have been unexpected or unintended It must have occurred during the provision of an activity regulated by CQC In the reasonable opinion of a healthcare professional, it already has, or might, result in death, or severe or moderate harm to the person receiving care. The levels of harm are defined differently depending on the type of provider, as set out in Table 1 below, but mean it is possible to trigger the harm threshold for NHS trust, but not for other service types, or vice versa. Table 1 6. What does the first criterion about unintended or unexpected mean? What does it mean in relation to known complications? The CQC guidance states: You should interpret "unexpected or unintended " in relation to an incident which arises in the course of the regulated activity, not to the outcome of the incident. By "regulated activity" we mean the care or treatment provided. By "outcome" we mean the harm that occurred or could have occurred. So, if the treatment or care provided went as intended, and as expected, an incident may not qualify as a Notifiable Safety Incident, even if harm occurred. This does not mean that known complications or side effects of treatment are always disqualified from being Notifiable Safety Incidents. In every case, the healthcare professionals involved must use their judgement to assess whether anything occurred during the provision of the care or treatment that was unexpected or unintended. Additionally, CQC guidance states that an NSI can still occur even if a patient consented to the procedure. Take these hypothetical scenarios, which illustrate the potential difference: Case A – A patient undergoes hip replacement surgery. A recognised complication is a venous thrombo-embolism (VTE) (blood clot). The consent process was followed and the risk was clearly explained. The patient received all appropriate chemical and mechanical prophylaxis and the surgery went as intended. However, the patient suffered a stroke. Case B – The circumstances are the same as Case A, however, this patient did not receive prescribed chemical prophylaxis. In Case A, although harm occurred, it occurred in relation to the outcome; that is, nothing unintended or unexpected happened in the care and treatment provided that contributed to that harm. In Case B, the same harm occurred but something unintended or unexpected happened in the care and treatment (prescribed prophylaxis was not given) that contributed to the harm. The provider would be required to act in an open and transparent way in both cases (the first part of the Statutory Duty of Candour), but Case B is also a Notifiable Safety Incident and therefore specific actions must be taken. 7. What does the second criterion about a regulated activity mean? Providers must register with CQC if they provide one or more of the Regulated Activities set out in Schedule 1 of the Health and Social Care Act 2008 (Regulated Activities) Regulations 2014. A description of each of the Regulated Activities is available in CQC’s Scope of Registration Guidance. 8. Is a patient receiving a regulated activity as soon as they call 999? Once the 999 call is transferred to the ambulance service then yes, this is captured under the Regulated Activity for Transport Services, Triage, and Medical Advice Provided Remotely. 9. Under criterion 3, what is considered ‘reasonable’ in determining harm levels? The ‘reasonableness’ is about whether, given the same information, another healthcare professional would come to the same conclusion. 10. Should ambulance services contact receiving hospitals to confirm the level of harm? It would not be reasonable to expect a service to routinely commission advice from an external healthcare provider in order to answer this question in every case (although there may some incidents where this is done). It is possible that a receiving provider may be of the opinion that something in the ambulance service’s care and treatment contributed to harm, in which case they should follow the CQC Guidance: NSI occurred in a different provider: “If you discover a notifiable safety incident that occurred in a different provider, you should inform the previous provider. You must also be open and transparent with the person receiving care about whatever you have discovered. But you do not need to carry out the specific procedures relating to notifiable safety incidents. The provider where the incident happened must carry out the notifiable safety incidents procedures.” 11. Are incidents that trigger professional Duty of Candour always NSIs? No. An incident must meet all three NSI criteria to qualify. Some incidents may require professional openness without meeting NSI thresholds. The Statutory Duty of Candour – What to do if an NSI occurs 12. What actions are required if an NSI has occurred? If a NSI has occurred, the provider must, as soon as reasonably practicable: Tell the relevant person (the service user who was harmed or someone acting lawfully on their behalf), in person, that an NSI has occurred. Apologise for what happened. Provide a true account of what happened, explaining what you know at that point. Explain to the relevant person what further enquiries or investigations you believe to be appropriate. Follow up by providing this information, and the apology, in writing, and provide an update on any enquiries. Keep a secure written record of all meetings and communications with the relevant person. Duty of Candour is complete once all the above steps have been followed. Any new information that comes to light at a later date may require further communication with the relevant person. If the relevant person cannot, or refuses to, be contacted, then you may not be able to carry out the actions outlined above, but you must keep a written record of all attempts to make contact. Throughout this process you must give reasonable support to the relevant person, both in relation to the incident itself and when communicating with them about the incident. This will vary with every situation but could include, for example: Environmental adjustments for someone who has a physical disability. An interpreter for someone who does not speak English well. Information in accessible formats. Signposting to mental health services. The support of an advocate. Drawing their attention to other sources of independent help and advice. 13. What does ‘as soon as reasonably practicable’ mean? Why are there no defined timescales? Providers are expected to act promptly as soon as an NSI has been discovered. No defined timescales are given as each NSI, and the circumstances of the relevant person who has been affected, will be different. For example, the relevant person may not be contactable for a period of time. 14. Does the apology for a NSI have to be given face-to-face? The legislation states that the apology must be given in person and the CQC guidance interprets this as face-to-face; so that should be the case where possible, if it best meets the needs of the service user. However, if face-to-face is not possible or not in the best interest of the service user, it may be given in person another way, such as by telephone or virtually. The key principle is ensuring openness and transparency. 15. Is an apology an admission of liability? No, an apology under the Duty of Candour is not an admission of legal liability. In many cases it is the lack of a timely apology that pushes people to take legal action. NHS Resolution’s ‘Saying Sorry’ leaflet confirms that apologising will not affect indemnity cover. 16. Can NHS Resolution’s 'Being Open' be used instead of Duty of Candour to simplify compliance? No. The statutory Duty of Candour has two parts: A general duty to be open and transparent at all times. A specific process that must be followed if an NSI occurs. Being Open aligns with part one but does not replace statutory obligations in relation to NSI. The Statutory Duty of Candour – Illustrative examples 17. Whose responsibility is it to enact Duty of Candour when ambulances are delayed because of waits in other providers, and there is no learning for the ambulance services to share? Duty of Candour is primarily about being open and transparent with service users, which may involve an element of sharing learning, but that is not the primary driver and therefore ‘not having any learning’ does not mean that the duty is not triggered. The specifics of the regulation still need to be carried out if it is an NSI. In this scenario, the requirement to tell the relevant person about the appropriate enquiries or investigations might, for example, include work being done across the system to reduce waits. 18. How does Duty of Candour apply to delays in diagnosis or treatment? In terms of the unexpected or unintended criterion, there is the need to consider whether the delay contributed to the harm experienced. If the delay did not affect the patient outcome, then it is unlikely to meet this criterion. 19. Should a follow-up letter be sent if a porter apologises for accidentally injuring a patient by catching their arm? A letter is only required if the incident is a NSI. It seems unlikely that the harm levels would be met in this scenario, but if they are (and the other criterion are also met) then it would be a NSI and all actions, including following up the face-to-face notification with a written letter, must be carried out. 20. Who is responsible for informing a patient’s family if an incorrect ambulance referral results in death? In this scenario, the receiving provider should inform the referring provider that they believe an NSI has occurred (see question 10). The referring provider can assess whether the incident is an NSI and it is they who should carry out the specifics of the regulation as required. The Statutory Duty of Candour – the role of CQC 21. How is the Statutory Duty of Candour enforced? The ultimate responsibility for ensuring the Statutory Duty of Candour is carried out rests with the registered provider or manager. Where CQC believe that it is not happening, they can use powers of enforcement, including action plan requests, warning notices, imposition of conditions and criminal prosecution. Any decisions will follow CQC’s Enforcement Policy and Decision Tree. Regulatory bodies such as the CQC in England, Healthcare Improvement Scotland, Healthcare Inspectorate Wales, and the Regulation and Quality Improvement Authority (RQIA) in Northern Ireland monitor compliance. The Statutory Duty of Candour – interactions with the Patient Safety Incident Response Framework (PSIRF) 22. If an incident is not a NSI, should the patient still be involved in the investigation? Yes. PSIRF promotes compassionate engagement. Patients should be given an informed choice about their level of involvement in a learning response, as set out in the ‘Engaging and involving patients, families and staff following a patient safety incident’ guidance. 23. How does Duty of Candour, PSIRF and compassionate engagement align? Duty of Candour ensures openness and transparency, requiring healthcare providers to inform, apologise, and support patients and families after a NSI. PSIRF shifts focus from blame to learning and improvement, ensuring proportionate responses to patient safety incidents rather than automatic investigations. Compassionate engagement is central to both, ensuring empathetic, meaningful involvement of patients, families and staff in the response process. Together, these principles promote trust, learning and system-wide safety improvements. The Statutory Duty of Candour – other issues 24. What has happened with the review into the Duty of Candour? Were the consultation figures low? A review into the statutory Duty of Candour was announced in the Government's response to the Hillsborough disaster report in December 2023. A call for evidence closed in May 2024, with the findings of the call for evidence published in November 2024. The published findings state there were 261 responses, which is a small response rate given its wide applicability. A final response to the review has not yet been published by the Department of Health and Social Care (DHSC). 25. Why is there little focus in the guidance on applying statutory Duty of Candour in mental health services? The statutory duty applies to any provider registered by CQC. While there is a mental health example in CQC’s guidance it is about a medication error that has occurred in a mental health setting. Once the situation regarding the DHSC review of the duty is clearer, CQC will look to strengthen the guidance and provide further examples for this sector. 26. Should there be a Duty of Candour towards staff? Any legislative changes to create a statutory Duty of Candour for staff would require action from the DHSC. However, CQC’s assessment framework emphasises: A culture where staff can raise concerns without fear. Workforce wellbeing, ensuring staff feel supported and valued. You can download a pdf of the FAQs here: PSMN_Duty of Candour FAQs_040425.pdf Last updated 4 April 2025.

The Patient Safety Management Network (PSMN) recently held two insightful and collaborative sessions focused on the Duty of Candour—the legal requirement for healthcare organisations to be open and transparent with those receiving care and treatment. The session brought together a diverse group of experts from the Care Quality Commission (CQC), NHS Resolution and the PSMN members to explore common challenges and seek clarity on key aspects of this essential duty. Through the joint effort between members of the PSMN and the invited experts a Frequently Asked Questions (FAQs) resource was produced that addresses the most pressing concerns about Duty of Candour. This collaborative approach ensured that the FAQ tool reflects the insights and expertise of those actively engaged in the regulation, implementation and oversight of candour practices. By pooling their knowledge, the team was able to provide clarity on a subject that often presents nuanced challenges to healthcare providers. Understanding the Duty of Candour The PSMN sessions delved into both the statutory and professional Duty of Candour, highlighting their distinct but complementary roles: Statutory Duty of Candour Regulated by the CQC, this duty comprises two key elements: Being open and transparent with patients at all times, regardless of whether an incident occurs. Responding to notifiable safety incidents (NSIs) by following a defined process. Professional Duty of Candour This duty, overseen by professional regulatory bodies, encourages individual healthcare professionals to act with honesty and openness when something goes wrong. Defining Notifiable Safety Incidents A NSI is defined by three criteria: The incident must be unintended or unexpected. It should occur during the provision of a regulated activity (14 regulated activities are listed by the CQC). In the reasonable opinion of a healthcare professional, the incident has resulted in, or might result in, death or severe or moderate harm. Defining and identifying NSIs remains a challenge, particularly because harm thresholds differ between healthcare bodies and other providers. Discussions also highlighted how understanding ’unintended or unexpected‘ is tied to the incident not the outcome, which adds another layer of complexity. CQC’s role in assessing Duty of Candour While the CQC does not investigate every NSI, it assesses compliance with the Duty of Candour by focusing on organisational culture. Ensuring that openness and transparency are embedded in day-to-day practices is key to meeting regulatory expectations. Guidance on saying sorry NHS Resolution provided valuable guidance on “saying sorry”, reinforcing that an apology is not an admission of liability but an essential step in acknowledging that something could have been done better. This simple but powerful act can build trust and contribute to a culture of transparency. A commitment to clarity and improvement These PSMN sessions underscored the importance of continuous learning and collaboration in addressing complex safety issues. By bringing together regulators, safety experts and healthcare professionals, the PSMN has taken a significant step toward ensuring that the Duty of Candour is consistently understood and applied across all healthcare settings. The creation of the FAQs page is not just a resource, it’s a testament to the power of collaboration in driving positive change and enhancing patient safety. “Openness and transparency are not just regulatory requirements—they are the foundations of a culture that puts patients first.” The Duty of Candour FAQs can be read here or downloaded from the attached pdf below. PSMN_Duty of Candour FAQs_24032025.pdf How to join the Patient Safety Management Network You can join by signing up to the hub today. When putting in your details, please tick Patient Safety Management Network in the ‘Join a private group’ section. If you are already a member of the hub, please email [email protected].

We hear time and time again on the hub about the lack of joined up care and communication within and across organisations. Patients and their families and carers not knowing who to contact to chase up a referral, having to travel miles for appointments, missing appointments because the letter didn’t arrive on time, or having to repeat the patient’s history and medications to every new healthcare professional they see because the notes haven’t been shared or clinicians "don’t have time to read them all". These issues are widespread and urgently need to be addressed if we are to prevent people falling through the gaps and suffering worse health outcomes. In this blog, Sue* shares her and her husband's experiences of trying to coordinate the healthcare system and highlights the challenges and frustrations they continuously face. Difficulties getting a diagnosis My husband Neil* has a very rare chronic condition that means unfortunately he is not managed in the area we live at as it’s a regional centre some miles away. We live in North Yorkshire, one of the largest geographical areas in the country, and we feed into various health economies. It took over 4 years and three different healthcare organisations before Neil got his diagnosis. Every time we see someone new we have to go through all of Neil’s medical history again, and then they often say that it’s not their area of expertise because they only deal directly with one area or speciality; they don't think of the patient as a whole. Whilst waiting to get the diagnosis, Neil had a heart attack so he was initially treated more locally to us but it was still over 40 miles away from where we live. When we called an ambulance for a second time he was taken to a different hospital from the first one he was treated in. So he was taken to two different geographical areas not even under the same trust. To add to this, Neil is also under lots of different specialities, i.e. rheumatology, general surgery, dermatology, respiratory and lipids. So he is being treated and has appointments in numerous places. Coordinating appointments and results With all these different specialties, even if they are within the same regional centre, none of the information is joined up or accessible, including blood results from the GP. We find that things are incorrect all the time and we spend a lot of time trying to coordinate Neil’s care and following up on test results, appointments, etc. Neil receives appointments in various ways—emails, phone calls, texts, letters, messages left on his answer phone. You might get a phone call followed by a letter, or you could get a message to say ignore the letter. You may miss a call but you don’t know which department to ring back because it usually comes up as an unknown number. Recently, Neil received a text message which said he was on a waiting list, but it didn’t say what it was for or what specialist department it was from. It said in the text that if you no longer wanted the appointment and wanted to cancel it, to follow a link, but we had no idea what the appointment was referring to or where it came from! As a patient you want to have some control over your health and be able to see all blood test results, scan results and letters from the hospitals. For example, it would be so much easier to look at Neil’s medications and patient letters if they were all in one place but you can't look at the medical records to see what's been said. The only way we can get it is waiting for the letter to be seen by the GP and then, eventually, added on to their system, but it's not always quick because again it's a different geographical area and systems that are disconnected. As a patient with a new disorder, you’re not familiar with the system. Neil was referred to other specialities from rheumatology. Unfortunately, the treatment plan. including tests or length of wait for appointments, isn’t shared directly with us. We rely on my note taking to ensure everything is completed and followed up. Often we end up going to an appointment without the tests Neil needs to have done due to the length of wait for the test, or the test being triaged and cancelled but this not communicated either to us or the referring doctor. The waiting for test results at the moment are long for some of these tests but if it was in your capacity to be able to seek or understand when you might possibly get them, you wouldn't then end up wasting an appointment. You would wait until you've had the results back or know when it might be. It could take us over two hours travelling time for a wasted appointment. We don’t want to waste our time and the time of others. Lack of communication Neil has radiotherapy coming up shortly and we've had no communications regarding it. I ended up making a phone call to inquire and was given a date. But we’ve still not received a phone call, no email, no letter or anything about it, even though they've got the date and time in their books. You can’t make plans, for example if you are trying to go away for the summer. If you’re waiting for a treatment, which on the NHS may take a while, you want to know when to expect the appointment. It’s a lot easier to manage your condition or diagnosis if you have the knowledge of when something's going to happen and you can manage your own expectations. Navigating the various healthcare apps To try and help with all of this we’ve been really keen to try and find a way to get all of Neil’s medical information, from many different organisations, together in one place and to rationalise appointments. We signed up to the NHS app which then put us on to System Online and then Neil was directed to AirMid UK. We've also found the Patients Know Best app which has been set up and says that you can access all your records but it seems to be only if an organisation has signed up to it. So we’ve got four apps to supposedly access the information but not one of them has all of Neil's information. We are actively looking for an online place which has all the information but none of it ties up. None of the apps give you the same information. We’ve asked our GP but he couldn’t help and hadn’t heard of some of the apps we’d found. A system that isn't working These are just a few examples of what we’re dealing with. I’m lucky as I have some medical knowledge so I know when we're missing something or waiting for something and I will chase up, but not everyone will have this knowledge. If it’s an older patient, or someone who hasn’t got family to support them, then they are on their own to navigate a very complex system. A system that isn't working. *The names in this blog have been changed to ensure anonymity. Are you a patient, relative or carer frustrated with navigating the healthcare system? Or is your GP practice or Trust doing something innovative to make it easier for patients? We would love to hear your stories. Please add to our community forum (you will need to register with the hub, it's free and easy to sign up) or email us at [email protected]. Related reading The challenges of navigating the healthcare system: David's story The challenges of navigating the healthcare system: Margaret's story Navigating the healthcare system as a university student: My personal experience Lost in the system? NHS referrals "I love the NHS, BUT..." Preventing needless harms caused by poor communication in the NHS (DEMOS, November 2023) Robust collaborative practice must become the bedrock of modern healthcare Robbie: A homeless patient’s struggles with the system Digital-only prescription requests: An elderly woman sent round the houses Lost in the system: the need for better admin Digital-only prescription requests: An elderly woman sent round the houses

In early 2022, following his wishes, my husband was discharged from hospital for end of life care at home to be provided by his family (his wife, three adult children and son-in-law) and nurses from our local hospice. We were completely unprepared for the challenges and disruption that lay ahead for us all.  Challenges during discharge The first challenge we encountered was receiving conflicting, confusing information from different staff members regarding my husband’s prognosis and future treatment and care. His consultant and their team were optimistic, speaking of further tests and a possible response to treatment in 3 weeks’ time. It was in that meeting, and on that basis, that we supported discharge and discussed arrangements. But the senior specialist nurse caring for him was alarmed by what we had been told. Immediately after the meeting they took us aside to tell us that, in their view, my husband had only days left to live. Although unsettled by this conflicting information, we preferred to believe in the more optimistic prognosis. On that understanding, we began to make preparations. At this point we knew: My husband would be taken home by ambulance the next day. A hospital bed and other equipment would be delivered to our home the next morning. We would receive a supply of medication on leaving the hospital. Hospice nurses would visit us twice a day to assist, starting the next day. Apart from needing a family member to wait at home in the morning to receive the bed, we thought we would be able to spend his last day in hospital quietly by his bedside. What actually happened couldn’t have been more disorderly or more disturbing. In practice, in addition to receiving the conflicting prognoses, this is what we experienced before discharge: My husband’s discharge was delayed by more than 48 hours, as hospital staff had great difficulty coordinating everything required for his move home. There were significant requirements we had not been told about, such as the need for an oxygen supply at home, which had to be located at a distance from a gas supply. The coordination difficulties meant that one of us waited alone at home for two full days, to receive the hospital bed and other equipment. This family member was therefore unable to be with my husband for an extended period at a critical time. On the second day of the delay, in direct contradiction of their advice the previous day, the ward sister advised us to take an immediate patient transport appointment even though it would mean going home before the hospital bed had arrived, and without any confirmation of when, or if, one would arrive. As the day went on, this nurse’s exhortations to leave without a bed in place at home were repeated and increasingly aggressive, and included the threat that there would, as a result, be no guarantee that hospice nurses could support us when we did eventually get home. We experienced this as bullying, coercive behaviour that greatly confused and disturbed us at a time when we most needed clarity, consistency and sensitivity. Delivery of the hospital bed was not straightforward. Access had not been checked beforehand, and when the bed arrived it was found that the layout of the house made it impossible to move it into a bedroom. With some difficulty, it was placed in the living room. The other equipment included an oxygen supply. This was not straightforward either. The bed had been placed near a gas fire. It had to be moved to a safe distance from the gas supply, which required taking furniture out of the room, difficult for the one family member at home handling this situation. Ward staff had contacted our local hospice on our behalf. We asked to have direct contact with the hospice ourselves so we could confirm arrangements. The ward sister (the one whose behaviour we had experienced as coercive) advised us not to contact them. We complied with this and so we left the hospital with no information about what the hospice nurses knew of my husband’s condition and no direct confirmation of their visits. This felt very insecure and contributed to our stress. We felt thrust into the unknown when we were at our most vulnerable by a system that didn’t want us. While we worked our way through all the problems, my husband’s condition was deteriorating, and he was suffering. He had a high temperature, great pain and nausea. But once the discharge decision was taken, nursing staff stopped taking his observations, stopped providing him with any medication to relieve symptoms and stopped washing him and providing meals. We had to insist that he be provided with some ongoing care and medication, and although he did receive the latter we had to overcome considerable resistance. These problems compounded one another and created chaotic, confusing circumstances. All family members at the hospital were spending their time running around, trying to get assistance and accurate information about what was happening and when from the various departments involved in the discharge of a patient in palliative care, all the while trying to be present for my husband and trying to ensure his comfort. We’d been very wrong indeed to have thought that we could spend the period before discharge gathered round his bedside, gently reminiscing. Challenges at home Once home, we faced further difficulties: There was a great deal to learn: how to operate the hospital bed; how to store and use the oxygen supply safely; how and when to administer the medication supply; how to turn my husband, and deal with incontinence; and how and when to try to feed him or give fluids. We all (including the hospice nurses) struggled to understand the medication which had been provided. We’d received 15 different drugs. They were to be administered according to widely varying schedules and had different means of administration (subcutaneous, injection, oral rinse, sublingual, oral). The explanations provided were delivered rapidly while we were standing in a congested corridor inches from my husband who was being removed by the ambulance staff, when he needed me and was calling to me. We had no opportunity to confirm our understanding of the different medications or to check the contents of the bag before we left the hospital. At home, we found several errors to the medication supply. There was a supply of chemotherapy medication that wasn’t prescribed. There was no supply of other medication that was prescribed. Most critically, we hadn’t received any pain relief medication in a form that we could administer, as my husband’s condition had deteriorated significantly during the delay to his discharge and he became unable to swallow. As a result, just a few hours before he died, at the advice of the hospice nurses who were waiting to receive a syringe driver for intravenous morphine administration, I was compelled to drive from pharmacy to pharmacy searching for pain relief medication that we could administer. I deeply regret that time away from my husband’s bedside. The hospice nurses arrived at our home a few hours after we did. We spent a significant period of time briefing them on their first visit. They needed details of my husband’s medical history, condition, and medication. This also took time away from his bedside. We found there were errors to the information recorded in the discharge summary we’d received on his departure from hospital. One was to his condition, which was assessed and recorded as ‘moderately frail’ (it had been erroneously auto-populated with admission data and should have been ‘terminally ill’). This information bewildered and misled us (causing some family members to delay visiting him, believing he was fitter than he was, for example) and created difficulties for the hospice nurses. They had prepared to assist someone ‘moderately frail’ and it took them time to adjust and get the necessary equipment and pain relief. Consequently my husband didn’t receive intravenous morphine until one hour before he died. As a result of these and many other issues, 34 hours after arriving home, my husband died having endured terrible pain and distress in chaotic and undignified conditions, which was devastating for his family to witness. Learning from experience If we had been aware of what we were undertaking, seeing how quickly my husband was deteriorating during the delay and understanding how little time we had left, we would have encouraged him to remain in hospital and explained to him why going home wasn’t a good idea. We wouldn’t have supported the decision to discharge him home. The delayed discharge and the short time that remained to us meant that all the problems we experienced were concentrated, and much harder to deal with as a result. This detracted from the very precious few hours that we had left together. Even the period immediately after his death was affected. We’d had no time to find out what happens once someone has died, and were devastated to learn, at 1 am, that we needed to identify undertakers as a matter of some urgency. Given the delay to my husband’s discharge and his deterioration, we should have asked for his suitability for discharge to be reassessed. As part of that reassessment, we should also have insisted on a review of his medication, particularly his pain relief medication. He left with a supply of medication that was based on an assessment of his condition made three days before his discharge. But even when everything goes smoothly and there are none of the problems described above, taking someone home for end of life care is still a major undertaking. The following could be useful for anyone preparing to do that. Key things needed to help families prepare to take someone home for end of life care 1. A handbook, providing: A checklist of what should happen and in what order, once the decision to discharge a patient has been made. Contact information for all hospital departments involved in discharging a patient for end of life care at home, including an indication of who’s responsible for what. The advice to find, if possible, a more distant relative, a friend or a neighbour willing to be at your home to receive the hospital bed and other items on your behalf. Instructions for use of all of the equipment provided, e.g. the hospital bed and the safe storage and use of the oxygen supply. Instructions for how to care for a bed bound patient in palliative care, e.g. how to turn them, wash them, deal with incontinence, how to feed them and provide liquids, and the best position for them to be in to facilitate breathing and their general comfort. Contact information and details of available support in the community, including, for example, pharmacy opening hours. A checklist of what items are needed to make the patient as comfortable as possible once home. Instructions for what needs to be done in the hours following death. 2. Contact with the hospice before discharge A meeting or phone call in which the patient’s medical history, condition and medication is shared. Information about what to expect e.g. visit frequency, timing and length; what the nurses will do/not do; how to manage in between visits and what support is available then, especially at night or otherwise out of hours. The hospice contact details, including emergency numbers. 3. A private meeting, in the hours prior to discharge, between the primary caregiver and a nurse familiar with the patient’s care and condition, enabling: A discussion of the patient’s ongoing care. An explanation of the discharge summary (and checking accuracy). A review of, and instructions for, the medication supply, including which medication should be prioritised in the event that not all can be administered. Confirmation that pain relief medication is provided in a form that can be administered as a patient in palliative care is likely to become unable to swallow. All of the above needs time. With time, the transition home is more likely to be successful. But if time is short, and particularly if problems arise, there can be concentrated chaos and confusion, likely to detract from the patient’s last hours and interfere with their care, as we found. For these reasons, in our experience, it isn’t viable or advisable to take a patient home from hospital for end of life care when they are deteriorating and it seems likely that only hours or days remain. If my husband had remained in hospital he would have received undisrupted care and medication (albeit in our case only with our insistence). All members of his family would have been able to be at his bedside throughout. He would have died in less pain, in more comfort and security, and with his dignity intact. And his family would have been much less traumatised by the experience. We live with enduring shame and sorrow for his suffering. What makes it worse is that much of it could have been avoided. Motivated by a desire to reduce the possibility of others suffering as we had done, in 2022 we submitted 20 complaints to the hospital concerned. Following a largely unsatisfactory response, we made a submission to the Parliamentary and Health Service Ombudsman. Our efforts over 16 months to bring about improvement are documented here. Related reading on the hub: HSIB: Variations in the delivery of palliative care services to adults Patients who experience harm provide stories, but who will really engage with their insights and opinions? Top picks: Eight resources about hospice and palliative care

Navigating health and social care systems can be confusing and frustrating for patients and carers. In this blog Emma Sheffield, Communications and Marketing Manager at the Patients Association, explains how their free helpline is helping support people.  The Patients Association is a UK-wide charity dedicated to amplifying patient voices and improving healthcare experiences. We provide support, guidance, and advocacy to help people navigate the complex world of health and social care. Our free helpline offers specialist information and guidance to anyone, across all four UK nations. Whether you’re struggling to understand your healthcare options, need help resolving a concern, or just want to share your experience, our team is here to listen and assist. While we are not medically trained and cannot offer clinical or legal advice, we can help you make sense of the system and connect you with the right resources. What can you contact us about? The healthcare system can be overwhelming, and it’s not always clear where to turn for help. Our helpline is here to support you with a wide range of concerns, including: Care navigation – understanding how to access the right healthcare services, from GP appointments to specialist referrals. Your healthcare rights – how to get a second opinion, changing your GP or dentist, or accessing your medical records. Making a complaint – guidance on raising concerns about NHS or social care experiences, including who to contact and how to escalate issues. Accessibility and patient safety – ensuring you receive the support you need, such as interpreters or disability accommodations, and knowing what to do when care falls short. How the helpline has helped patients Ramona*, a concerned relative, reached out to our helpline after her Deaf family member faced barriers at their GP surgery. Despite requesting a British Sign Language (BSL) interpreter well in advance, the patient arrived at their appointment to find no interpreter arranged. The situation left them struggling to communicate effectively, leading to frustration and a lack of clarity about their care. When Ramona later contacted the GP practice, she was told there was "no budget" for BSL interpreters. Feeling this was unfair, she contacted us to speak to someone about it. Our helpline team explained that GP surgeries have a responsibility to provide accessible communication support. We guided her to contact the local Integrated Care Board (ICB) for clarity on funding policies and directed her to the Equality Advice and Support Service (EASS) for further support in raising a formal complaint. With this information, Ramona felt empowered to challenge the decision and advocate for her relative’s rights. Another caller, Arman*, contacted us after facing difficulties in managing their ADHD treatment. Following discharge from a specialist clinic, their GP continued prescribing their medication, but when it became less effective, they were told that only a specialist could approve a change. This meant starting the referral process again, leading to long delays and uncertainty. Feeling stuck, Arman contacted our helpline for guidance. We suggested asking their GP to clarify why specialist input was needed and whether any alternative medications could be prescribed in the meantime. We also explored ways to speed up the referral process, including requesting a referral back to their previous clinic or finding another specialist with a shorter wait time. With these options in mind, Arman felt more confident in approaching their GP and taking control of their care. Call or email the helpline You can call our helpline on 0800 345 7115 (freephone) between Monday to Friday, 9:30am to 5pm. You can also send us an email at: [email protected]. Your voice matters Calling the helpline doesn’t just help you, with your permission, your experiences contribute to wider improvements in patient care. Our partnership with the Care Quality Commission (CQC) means that your feedback can help inform changes in healthcare services, ensuring others don’t face the same challenges. If you have concerns about your healthcare, need help understanding your rights, or just need guidance on where to turn next, our helpline is here for you. You don’t have to navigate the system alone, speak to one of our friendly team members and we can help you find the answers you need. * Names have been changed. Related reading Lost in the system? NHS referrals "I love the NHS, BUT..." Preventing needless harms caused by poor communication in the NHS (DEMOS, November 2023) Robust collaborative practice must become the bedrock of modern healthcare Robbie: A homeless patient’s struggles with the system Digital-only prescription requests: An elderly woman sent round the houses Lost in the system: the need for better admin Digital-only prescription requests: An elderly woman sent round the houses

This webinar focuses on using positive family engagement within the new PSIRF framework to transform the investigation experience of patients, families, and staff. The webinar will provide clear information on when and how to develop positive family engagement during investigations, in line with PSIRF. This webinar has been developed in line with the national NHS Patient Safety Standards introduced as part of the NHS Patient Safety Incident Response Framework (PSIRF) and the Engaging and involving patients, families and staff following a patient safety incident PSIRF supporting guidance. This webinar enables you to hear the first-hand experiences of staff and families in a powerful and engaging way. It gives you the opportunity to discuss and share your experiences and that of speakers and other delegates in a non-judgmental and positive learning environment. This webinar is for: Patient Safety Leads / Manager / Advisors Family Liaison Service Teams PSIRF Implementation Teams Governance Leads / Managers / Directors Clinical Leads in Safety & Quality Speakers: Ashley Windebank-Brooks, Dr Karen Lascelles, Julie Kerry, Rosi Reed, Joanne Canning, Derek Richford You will have the opportunity to achieve the following learning objectives: Understand the challenges and opportunities of engaging positively with families. Using PSIRF to develop an approach that recognises the importance of a collaborative investigative process that is thoughtful, compassionate, and supportive to families and staff. Appreciating the long-term adverse impact of poor engagement. Consider the family perspective after a patient safety incident, learning from the lived experiences of families to ‘walk a while in their shoes’, in relation to creation of actionable insights from these experiences which will influence your own future practice. Challenge yourself on your approach to the delivery of duty of candour and whether it meets the needs of families after a patient safety event. Increase your confidence in managing issues of information sharing and confidentiality. Developing approaches to how families can be supported to be part of a safety plan for patients. Focus on an investigative and engagement approach which avoids compounding harm. Recognising the positive impact even small expressions of kindness can make and determining what makes a meaningful apology. Develop an approach to report writing after a patient safety incident, which has the family at the centre. Register

This webinar focuses on using positive family engagement within the new PSIRF framework to transform the investigation experience of patients, families, and staff. We will provide clear information on when and how to develop positive family engagement during investigations, in line with PSIRF. The webinar has been developed in line with the national NHS Patient Safety Standards introduced as part of the NHS Patient Safety Incident Response Framework (PSIRF) and the Engaging and involving patients, families and staff following a patient safety incident PSIRF supporting guidance. This webinar enables you to hear the first-hand experiences of staff and families in a powerful and engaging way. It gives you the opportunity to discuss and share your experiences and that of speakers and other delegates in a non-judgmental and positive learning environment. This webinar is for: Patient Safety Leads / Manager / Advisors Family Liaison Service Teams PSIRF Implementation Teams Governance Leads / Managers / Directors Clinical Leads in Safety & Quality Speakers: Julie Kerry, Lucien Champion, Stephen Habgood and Sam Fairhurst You will have the opportunity to achieve the following learning objectives: Understand the challenges and opportunities of engaging positively with families. Using PSIRF to develop an approach that recognises the importance of a collaborative investigative process that is thoughtful, compassionate, and supportive to families and staff. Appreciating the long-term adverse impact of poor engagement. Consider the family perspective after a patient safety incident, learning from the lived experiences of families to ‘walk a while in their shoes’, in relation to creation of actionable insights from these experiences which will influence your own future practice. Challenge yourself on your approach to the delivery of duty of candour and whether it meets the needs of families after a patient safety event. Increase your confidence in managing issues of information sharing and confidentiality. Developing approaches to how families can be supported to be part of a safety plan for patients. This would also specifically include working well with families who have experienced loss through suicide. Focus on an investigative and engagement approach which avoids compounding harm. Recognising the positive impact even small expressions of kindness can make and determining what makes a meaningful apology. Develop an approach to report writing after a patient safety incident, which has the family at the centre. Register

This new Making Families Count webinar is designed specifically for NHS staff who are committed to engaging positively with patients and families after a serious patient safety incident. The programme seeks to create a unique learning experience for those in Family Liaison or Patient Engagement roles across the NHS. It focuses on learning from the lived experience of patients and families after serious patient safety incidents, contrasts the family liaison roles within the NHS and other sectors, and shares the learning from experts who have developed and run Family Liaison services in other parts of the NHS. The model of delivery enables delegates to interact with each other and with presenters, learning from each other and developing or expanding their peer support networks, which will be beneficial beyond the event itself. This webinar is for: Family Liaison Service Teams Patient Engagement Teams Directors of Nursing and Patient Services Staff involved in Serious Incident Investigations Staff involved in PSIRF implementation Speakers: Louise Pye, Karen Lascelles, Rosi Reed, Stephen Habgood, Len Hodkin, Kirk Wilson, Sue Massingham and Julie Kerry Learning outcomes: Contrasting the model of family liaison within the NHS and other sectors to create an understanding of alternate approaches, training, and service delivery. Develop a deeper understanding of the impact and long-term consequences for families of poor engagement during protracted incident investigations. Hearing the family’s perspective after an incident involving serious harm or death. Consider the crucial link between the NHS Trust and the family as they negotiate the difficult and complex NHS investigation process and related processes, e.g. inquests. Developing strong communication skills, being able to listen and empathise to build trust with families. Develop an approach to create an ethical relationship with the family by building trust, sharing information between families and the investigation lead, providing information about additional services available to families, and signposting to relevant support agencies. Consider the continuation of support, if needed, when the investigation closes. Consider your own peer support network and opportunities for expanding this further and use this webinar to reflect upon additional training and development needs and how these can be met. Register

This new webinar is a free introduction to the work of Making Families Count (MFC) and focuses on who we are, what we do and why we do it. Speakers include Julie Kerry, who co-founded MFC in 2014 and is now one of our directors, Len Hodkin, family member and director, and Rosi Reed, our development and training coordinator. MFC aims to offer training which supports healthcare professionals to better engage with parents and families. This introductory webinar illustrates what our training offers in terms of facilitating staff to have the necessary skills to work well with families, particularly around the PSIRF guidance. The aims of this webinar are: To offer an initial introduction to the work of Making Families Count. To improve your understanding of the importance of engaging well with families in the PSIRF context. To facilitate conversations about your team/organisation’s current practice. Speakers: Julie Kerry, Len Hodkin, and Rosi Reed This webinar is open to all healthcare professionals who are interested in knowing more about the work of Making Families Count and the training we offer. Register