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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

Hi, my name is Andrew Payne. In October 2019, my late wife Janice was in the palliative stage of her cancer when she was a victim of a dispensing error. This was caused in large part by an intransigent pharmacist who refused me an emergency supply of medication for my wife a few days previously. Failures by the pharmacy branch and Janice's GP meant she had to endure the side effects of ingesting the medication of a patient with the same surname as her. She will have suffered pain, discomfort and harm. This much has been admitted by the private pharmacy company involved. I would like to share the series of events leading to my wife's death and after, and the actors involved and the questions that need to be answered. The pharmacy As much as the pharmacy involved said "we take this kind of circumstance very seriously", the truth is that they worked very hard to see the case closed. The pharmacy did not mention to me the failures of their staff to observe the Duty of Candour. They did not direct me to the industry regulator. Instead, I was advised that this case was being reviewed by their ‘customer complaint process’ and I was sent a ‘customer charter’. Their process gave the pharmacy a 20-day cushion for them to thoroughly investigate the error and in this time they batted away my questions and queries. Their own internal investigation found nothing untoward apart from the terrible human error of a lady behind the counter who served me as the pharmacist refused (against company and industry guidelines) to come out herself to see if my request for the emergency medication had merit or not. I made a complaint to the General Pharmaceutical Council (GPhC) and they found sufficient evidence to open an investigation. A pharmacy executive was unhappy about this and made efforts to assure the GPhC that this was a simple case of human error despite knowing that this was in fact more than a simple case of human error. The pharmacy executive went on to convince the GPhC investigators that they did not need to question the pharmacy staff that they had identified to take statements from, and, instead, this ‘non-involved’ executive became the single witness representing everyone. The insurers I was witness to the harmful influence of insurers, who indemnify healthcare professionals causing them to question their actions in an error circumstance. When the pharmacy company introduced me to their indemnity insurer, I conducted an internet search and found a piece of advice to their pharmacist members on the National Pharmacy Association website on how to react in a dispensing error circumstance. In my opinion this advice was written by a legal executive and I suggest it is an invitation to their members to breach their professional duties to their patient. When I discovered this, I advised the pharmacy company that their branch team had followed this advice almost to the letter. This triggered unseemly actions by both the pharmacy and the insurer. I had many exchanges with them in which I invited them to remove this terrible advice from their website, but was told this is typical advice, and of course it is, but this comes in the form of ‘deny liability’ and represents a threat to all NHS patients. The National Pharmacy Association did eventually removed this when the Chief Pharmaceutical Officer for England at the time became involved. I was unable to convince the GPhC that their investigation was corrupted and, therefore, invalidated. The regulator The GPhC took 18 months to take statements from the pharmacy executive and myself, consider the factors and make their decision. I called their investigation ‘a parody’. I was beside myself with astonishment and despair to see that they did not include the breaches in the Duty of Candour in their investigation. I received an unsigned letter from the ‘outsourced’ solicitor company investigators. I was advised that they had found the pharmacy company to have acted positively to the error and that there were no grounds for further action. I wrote a strong letter of discontent, in which I reminded the CEO of the regulator that he was a signatory to the joint statement on the Duty of Candour in 2014. To his credit, he commissioned an outsourced review of the handling of the case. Unfortunately for the cause of finding the truth, learning lessons and doing the right thing, this review was poor. There were aspects of the review that the CEO did not agree with and he ordered that the case should be reviewed again. Seven months of ‘investigations' later, it came to the same conclusions as the first investigation, albeit with a more wordy outcome letter. Janice and I, as the ‘public being protected’ by this regulator, had been failed on a monumental scale. Putting patients in harm's way I have looked behind these fine words and promises to protect the public to find a different set of interests being placed before the public. I have seen the betrayal, not just of the GPhC but also of other regulators. I have seen the flaws in the authority tasked with overseeing these healthcare regulators and I have seen the depth of failure. I was forced by the GPhC to use the Freedom of Information Act to learn otherwise undisclosed details of my case. I found this Act a crucial mechanism as I was able to ask questions of the regulators. I have used the Act to ask the same questions to NHS Trusts and I have compared the results to see how much safer the public are when they are being cared for by the NHS. That is to say, if an error occurs and this happens within a facility operated by the NHS, are there are better systems in place. I am very fearful to see community services operating from NHS facilities. I see this as exposing patients to harm. I am committed to seeing changes introduced that will see the public made as safe as it is possible to be. Difficult questions asked I finish this story with the difficult questions I have asked. All of these queries resulting from one case. Why is it possible for two healthcare professionals working in the same NHS facility to be regulated differently when it comes to the Duty of Candour? For example, a nurse working in the NHS facility will be regulated by the Nurses and Midwives Council (NMC) and thus governed by the professional Duty of Candour. If a nurse breaches the Duty of Candour they will be investigated by the NMC and the Care Quality Commission (CQC) will be responsible for investigating the NHS facility as the organisation is responsible for its staff to adhere to the Duty of Candour. However, community pharmacies operating within the NHS facility are not regulated in the same way. The GPhC (and other regulators) are not mandated to ask whether the pharmacist under investigation was supported or trained by their employers. Why are there better systems in place for patients when their NHS services are provided by the NHS rather than by a private company? In the NHS the employers have a marked responsibility to ensure that their staff are updated, informed and observe their professional duties. This is because the CQC are policing a statutory duty and a breach in this duty is a breach in law. Why aren’t private companies providing NHS services, such as pharmacies, required to meet NHS standards? Why aren’t private companies regulated for the part of their business which provides NHS services to NHS patients? Why aren’t standard operational procedures standardised across the private companies providing NHS services to NHS patients? When ‘something goes wrong’ with an NHS patient receiving an NHS service from the private sector, why is it the NHS picks up the costs of ‘harm done’? Why are insurers allowed to undermine the integrity of professionals in the conduct of their duties? It is inevitable that when an error has occurred, a professional's thoughts turn to the possible impact on their future, and so it is not surprising that a call to an insurer is made before following employer standard operating procedures and professional guides. In our case, the GP failed to alert the coroner of the dispensing error and only did so following a call to his indemnity insurer. Why are unregistered professionals working in healthcare exempt from sanction? Why are regulators allowed to make false claims of ensuring public safety? Janice Payne needs to be the last NHS patient failed by needless neglect. We need to act now in the name of public safety. Further reading on the hub: How to make a complaint How do I make a complaint: Sources of help and advice

This conference focuses on improving safety for hospice patients. The conference will highlight best practice in improving safety in hospices, highlight new developments such as the implications of the new Patient Safety Incident Response Framework (PSIRF), and the new CQC Inspection Framework, and will focus on key clinical safety areas such as falls prevention, medication safety, reduction and management of pressure ulcers, nutrition and hydration, improving the response and investigation of incidents, preparing for onsite inspections and developing a compassionate culture in hospices. For further information and to book your place visit https://www.healthcareconferencesuk.co.uk/virtual-online-courses/patient-safety-hospices or email [email protected] hub members receive a 20% discount. Email [email protected] for discount code. Follow on Twitter @HCUK_Clare #PSHospices

In 2014 Seth Goodburn died from pancreatic cancer 33 short and heart-breaking days after his diagnosis. Seth wanted to die at home but sadly he died in an acute hospital because the system, processes and procedures constrained the ability of healthcare staff to deliver person and family centred care. For the last 10 years Lesley Goodburn has worked to share Seth's Story to raise awareness of the signs and symptoms of pancreatic cancer, highlight the need for good psychosocial care and to improve end of life care. In the 10th anniversary year of Seth's death Lesley and colleagues provide an update on each of those areas and to launch a new educational resource which are letters that Lesley wrote to the staff involved in Seth's care six months after Seth died. These letters will give you the opportunity to reflect on your role in a patient and families journey through palliative and end of life care and you will be invited to reflect and write a letter back to Lesley and Seth Learning outcomes for participants: Understanding Pancreatic Cancer: Gain a comprehensive understanding of pancreatic cancer, its signs and symptoms, and the patient’s journey from diagnosis to end of life. This includes learning from Seth’s story and the experiences of other patients like Claire and Bradley. Delivering Person and Family-Centred Care: Understand the importance of delivering person and family-centred care, as highlighted by Seth’s experience. Learn about the healthcare systems, processes, and procedures that can either support or constrain the delivery of such care. Psychosocial Support for Patients and Carers: Learn about the need for good psychosocial care for pancreatic cancer patients and their carers. This includes understanding findings from the carer’s perspective at the end of life and the available support for patients and carers. End-of-Life Care: Gain insights into the best practices for end-of-life care, including effective communication about cancer and care in the last hours of life. Learn from the work on cancer conversations and understand how to support patients in their final days. Grief and Bereavement: Understand the process of grief and bereavement, including the impact of the Covid pandemic on bereavement. Learn about the UK bereavement commission and how to support individuals through their grief. These outcomes provide a holistic view of the patient’s journey, emphasising the importance of person-centred care, psychosocial support, and effective communication at the end of life. A reflective letter-writing exercise will further deepen the understanding and empathy of healthcare professionals towards their patients and their families. Register

The day will highlight best practice in improving safety in hospices, highlight new developments such as the implications of the new Patient Safety Incident Response Framework (PSIRF), and the new CQC Inspection Framework, and will focus on key clinical safety areas such as falls prevention, medication safety, reduction and management of pressure ulcers, nutrition and hydration, improving the response and investigation of incidents, preparing for onsite inspections and developing a compassionate culture in hospices. For further information and to book your place visit https://www.healthcareconferencesuk.co.uk/conferences-masterclasses/patient-safety-hospices or email [email protected] Follow on Twitter @HCUK_Clare #PSHospices hub members receive a 20% discount. Email [email protected]

This blog tells the story of a patient, a relation of Patient Safety Learning's Chief Digital Officer. It explains how the patient was failed by the system, seemingly a system designed to fail when its users need it most. Some of the issues described here are technology-based in nature, but the concepts are easy to grasp. A phrase that another person commented when hearing about this story was "when common sense and compassion are lost, there is no hope left for the NHS". I think we have now entered that territory (sadly). Do feel free to comment or add your own stories below.... The elderly lady who had previously been fiercely independent and dismissive of most offers of care support was declining quickly. It was a bank holiday weekend and her family were desperate for diagnostic support, and managed to track down a Consultant Geriatrician willing to see her on Sunday morning. The Geriatrician was very concerned and wrote an immediate email referring her to the local palliative care team. She confirmed to the anxious family members that this was now an 'end of life' situation and should be managed accordingly although the timescale was not entirely clear yet. In the hours after the Geriatrician left, the patient – let's call her Anne* – declined even more rapidly. The family had managed to get care support in for that night, but in the meantime were struggling to help Anne. They found the number for the local emergency palliative care team. Knowing that the Geriatrician had already made a referral, they were hopeful that help might be available quickly. The person who answered the phone asked for the patient's name, checked their computer system, and said that they couldn't find it. The family explained that the emailed referral had been made several hours earlier that day to the main palliative care team. The emergency responder explained that the two palliative care teams operated separately and had separate software systems too. The referral would not be processed until Tuesday, after the bank holiday had ended. The family asked whether the emergency palliative care call handler could send help anyway and this was rejected. The common sense and compassionate thing to do would have been to have sent help or asked for the Geriatrician's email address to confirm the referral and urgency. Neither of these were done. No help was sent. This story shows just how fragmented systems are in the NHS – two parts of the same locality's palliative care team not able to see each other's information. It also illustrates that while some clinical services may be 24/7, the administrative support that may be key to their use is 'office hours' and that no appropriate 'coping mechanism' to deal with this has been created. Lastly, it shows that the NHS is melting down in terms of how it responds to many aspects of care provision, especially urgent and emergency care. Common sense and compassion are disappearing. When they are gone, I see little hope in the NHS providing the acceptable levels of care that people need and are entitled to. *Not her real name. Related reading on the hub: Patients who experience harm provide stories, but who will really engage with their insights and opinions?

This constructive commentary reflects on two recent related publications, the Healthcare Safety Investigation Branch (HSIB) report, Variations in the delivery of palliative care services to adults, and an article from Sarcoma UK, Family insights from Dermot’s experience of sarcoma care. Drawing from these publications, Richard, brother-in-law of Dermot, gives a family perspective, calling for a more open discussion around how we can improve palliative care and sarcoma services, and why we must listen and act upon family and patient experience and insight. Update (9 August 2023): how patient stories are used is the subject of a current 'discovery phase' project led by the NHS Learn from patient safety events (LFPSE) service. See comments below this blog for more information. I believe it needs urgent attention, given my experience below, by ‘innovative’ bodies like HSIB who are meant to be exemplars- much more needs doing involving patients and families at the heart. Please participate. When my brother-in-law Dermot died from sarcoma, an aggressive cancer, the family were shocked at how fast it progressed, and the difficulties palliative services had in making a difference to his suffering. We wanted learning to come from our experience so that others need not go through the same trauma. We had never wanted a media scare story and we were not ‘complaining’ about the valuable NHS and associated services, which we know are on their knees with numerous resourcing and organisational challenges. We referred Dermot’s experience to HSIB because we wanted an investigation to be carried out by this novel, innovative, expert body to learn lessons at a general service system level. HSIB concluded their findings from the investigation in a report, Variations in the delivery of palliative care services to adults, which we welcome and support. The report touches on a real part of Dermot’s story and does provide a damning indictment of how much palliative services need to improve to provide a key national care service for anyone to access, wherever they live. However, due to the narrow scope and the methodology it uses it misses, in our opinion, many key issues of Dermot’s experience, all despite hours of our work as a family reading the medical notes, drafting and feeding back our perspectives, many times, over the course of two and half years. Our voice, insights validated by some experts in the field, recollections of what really happened, witness testimony, questions and suggestions, were harder to get fully and authentically expressed in the report. The family were disconcerted and frustrated that there were some key events that were either omitted, misrepresented or post hoc rationalised by services so as to create a story that does not wholly reflect what happened and the effect it had on Dermot and the family. Moreover, what is missed is what the family believe needs to happen to prevent a repeat trauma for others. Because of the complexity of Dermot’s case, we do not believe the report findings if implemented would make a significant enough difference to others with equally complex journeys. Fortunately, during Dermot’s sarcoma journey, the family made contact with two charities that had a patient advocacy and advice focus from trained staff with clinical nurse specialist experience. One was a local cancer charity that really understood the local services available to us, and the other was Sarcoma UK that understood sarcoma. Both encouraged open feedback and discussion from patients about what has to be done better and, vitally, the sharing of this more widely. Sarcoma UK has published our account in the article, Family insights from Dermot’s experience of sarcoma care. It covers many additional issues that were not in scope for the HSIB report, but are closely related to it – for example, patients’ experiences of services from early in the care pathway, which significantly impact their whole experience, and also the quality of care received. These cannot be neatly compartmentalised and definitely played a role in Dermot’s suffering. The family has profound regrets that this fuller experience has not been fully investigated despite detailed work by the family and correspondence and discussions with some national experts. We really hope this account starts useful and fruitful discussions with its positive and constructive suggestions. Our main recommendations examine in a clear accessible way issues like the dynamic nature of the diagnostic and prognostic process; post-surgical symptom monitoring, and the nature of expert support that is needed to enable timely, appropriate interventions should the illness deteriorate; and, finally, what implications these types of aggressive unpredictable illnesses have for delivery of all post-surgical services, including palliative services. It is designed for service providers looking at cross-service communication, but also highlights issues patients may want to consider on their journey, particularly post-surgery. Since the publication of the report, we have had correspondence with an eminent palliative expert who has suggested that the role of hands-on-specialist palliative staff and sarcoma experts does require more clarity and attention, which is not highlighted in the HSIB report but alluded to in our experience. We want to contribute our suggestions and our insights to inform service reflection and change. The NHS needs defending and resourcing, but it also needs an open, patient-centred learning culture. There is literature on ‘work as done’ and ‘work as imagined’, which is used to analyse professional work in the safety learning field. Our contribution suggests more work has to be done on ‘work as experienced by patients and families’ and ‘work as requested and needed by patients and families ‘ and how these interrelate to the ‘service-centred’ perspective, which we believe overly governed the investigation process. Are patient-centred investigations so unacceptable to the system learning process? They may, after all, provide real challenge to system-controlled processes which led to harm. We are grateful for Sarcoma UK for facilitating the expression of an alternative viewpoint at the same time as the important HSIB report, and for HSIB for giving space for a family statement in the report.

World Hospice and Palliative Care Day takes place on 12 October 2024.  Patient safety in hospice and palliative care involves ensuring that every patient is able to access the services, support and pain relief that they need when they reach the end of life. It is also vital that families and carers are given relevant and timely support and information by healthcare services during their loved one’s hospice or palliative care, and following their death. Patient Safety Learning has pulled together 12 useful resources shared on the hub about hospice and palliative care. They include reports into the current state of hospice and palliative care in the UK, families’ reflections on how end of life care can be improved and resources related to palliative care for people with learning disabilities. 1. A manifesto for palliative and end of life care The charities Sue Ryder, Marie Curie, Together for Short Lives, National Bereavement Alliance and Hospice UK have produced this joint manifesto that calls on all political parties and candidates to commit to policies that ensure everyone affected by dying, death and bereavement receives the best possible care and support, both now and in the future. 2. The Worldwide Hospice and Palliative Care Alliance The Worldwide Hospice and Palliative Care Alliance (WHPCA) is an international non-governmental organisation focusing exclusively on hospice and palliative care development worldwide. The WHPCA website hosts a wide variety of resources relating to hospice and palliative care including advocacy resources, standards and clinical guidelines and country reports. 3. Dying well at home: commissioning quality end-of-life care (King's Fund) This King’s Fund report explores what we know about commissioning end-of-life care, the inequalities experienced by particular groups, and how NHS and social care commissioners in England are measuring and assuring the quality of care people receive. 4. Seeking Excellence in End of Life Care UK (SEECare UK): a UK multi-centred service evaluation The Association of Palliative Medicine coordinated the first ever prospective evaluation of end of life care against set standards in 88 hospitals across the UK. It found that people dying in UK hospitals without specialist palliative care input frequently have “significant and poorly identified unmet needs” —93% of people assessed having demonstrable unmet need. 5. Interview with Dr Elena Mucci, Consultant Geriatrician at East Sussex Healthcare NHS Trust In this video interview, consultant geriatrician Dr Elena Mucci talks about patient safety in geriatrics and end of life care. She describes the importance of taking a whole-person approach to caring for older people, reviewing medications regularly, equipping patients to manage their own health, and engaging patients and their families in planning for end of life care at an early stage. 6. Palliative Care for People with Learning Disabilities Network (PCPLD Network) The Palliative Care for People with Learning Disabilities (PCPLD Network) is a charity created to ensure that patients with learning disabilities receive the coordinated support they need throughout their life. The PCPLD Network website has some interesting webinars on a range of different topics which have already taken place for you to watch as well as useful resources. 7. Sarcoma UK: Family insights from Dermot’s experience This article from Sarcoma UK was written by the family of Dermot, who was diagnosed aged 77 with myxofibrosarcoma in March 2020. They reflect on the issues Dermot faced in accessing effective palliative care and make recommendations linked to the recent publication of the Healthcare Safety Investigation (HSIB) report, Variations in the delivery of palliative care services to adults. 8. Mind the gaps: understanding and improving out-of-hours care for people with advanced illness and their informal carers For patients living at home with advanced illness, deterioration in health can happen at any time of the day or night. This research report funded by the charity Marie Curie looks at issues faced by people with advanced illness and their informal carers in accessing out-of-hours care. 9. "We were completely unprepared for the challenges and disruption that lay ahead" — A family share their experience of taking a loved one home for end of life care In this anonymous blog, a hub member shares how unprepared she and her family were for the challenges and disruption that lay ahead when her husband was discharged from hospital for end of life care at home. 10. "What matters to you today?" How this simple question can improve patient care Physiotherapist Ann Bryan and occupational therapist Ines Brito are part of the therapy team working at the Marie Curie hospice in Hampstead. In this blog, they look at how asking a simple yet powerful question: "what matters to you?" can give healthcare professionals vital insights into the lives of patients that aren't always captured in routine assessments. 11. Lessons not learned: A family's lengthy efforts to turn complaints into improvements In this blog, a family describe the lengthy efforts they had to take to try to ensure their complaints about their loved one's end of life care would result in improvements at the hospital. 12. Final guidance on visiting and accompanying in care homes, hospitals and hospices - Care Quality Commission (CQC) Following consultation, the Care Quality Commission have now published final guidance to help providers understand and meet the new fundamental standard on visiting and accompanying in care homes, hospitals, and hospices. The guidance (on Regulation 9A: visiting in care homes, hospitals, and hospices) also sets out what people using health and social care services and their families, friends or advocates can expect. Have your say Are you a healthcare professional who works in hospice or palliative care? We would love to hear your insights and share resources you have developed. Perhaps a family member or someone you care for has received palliative care - what was your experience like? We would love to hear from you! Comment below (register for free first) Get in touch with us directly to share your insights