Search the hub

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]. Follow on Twitter @HCUK_Clare #PSHospices hub members receive a 20% discount. Email [email protected] for discount code.

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 diagnosis. Seth wanted to die at home, however the weight of systems and processes meant that he sadly died in an acute hospital. After Seth died, his wife Lesley shared their story via a play, a film and an educational resource called Seth's Story. Sharing the story aims to: improve end of life care highlight the need for psychosocial support raise awareness of pancreatic cancer signs and symptoms. 10 years later, join this free conference to hear the impact of sharing Seth's Story, the improvements that have been made and future plans to help others share their experiences through creative artforms. Seth's Legacy Conference will take place at Keele University, where there will be an amazing line of presenters and performers covering pancreatic cancer, compassion and creativity in the impressive chapel on the campus. Sign up for the conference

In 2014 Seth Goodburn died from pancreatic cancer 33 short and heart breaking days after diagnosis. Seth's wanted to die at home however, the weight of systems and processes meant that he sadly died in an acute hospital. After Seth died his wife Lesley shared their story via a play, a film and an educational resource called Seth's Story Sharing the story has three aims to: improve and of life care. highlight the need for psychosocial support. raise awareness of pancreatic cancer signs and symptoms. Ten years later, join us at this free conference to hear the impact of sharing Seth's Story, the improvements that have been made and future plans to help others share their experiences through creative art forms. This interactive series of talks and discussions will cover: Hearing and seeing the person who has a terminal disease Role of creativity in understanding experience of care at end of life The power of sharing lived experiences through storytelling The role of the people who are important to the person receiving care and their role in care partnerships Understanding who and what is important to the person receiving care Can compassion be taught or is it an innate quality How to have compassionate kind and gentle conversations How can we support people to celebrate their life as life draws to an end How will the new integrated care systems help focus on palliative and end of life care What are the key challenges for the future of end of life care The event is hybrid, virtual and also hosted at Marie Curie London, 1 Embassy Gardens, Nine Elms, Vauxhall, SW11 7BW, with a complimentary sandwich lunch. Register for free if you wish to attend online only via MS Teams Register to attend in person More information is available on the event flyer

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