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Found 137 results
  1. News Article
    Marie Curie said one in five hospital beds in Wales were occupied by people in the last year of their lives and "bold, radical" action was needed for services which were at "breaking point". One family said they had to fight to ensure their 85-year-old father could die peacefully at home rather than in a hospital ward. The Welsh government said it provided more than £16m a year to ensure people had access to the best possible end-of-life care. Marie Curie said gaps in care meant "too many people are spending their final days isolated, in pain, and struggling to make ends meet". "End-of-life care in Wales is at breaking point," said Senior Policy Manager Natasha Davies. "Services and staff are struggling to deliver the care people need, when and where they need it. There is an urgent need for change." The charity recognised while hospital was the best place for many palliative care patients, better community and out-of-hours care would allow people to be cared for in their homes. "It also means having meaningful conversations with dying people about their care preferences, so their wishes are heard and respected," added Ms Davies. The Welsh government said good palliative and end-of-life care could make a "huge difference" to helping people die with dignity. Read full story Source: BBC News, 2 June 2025
  2. News Article
    A leading British palliative care consultant has described the assisted dying bill as "not fit for purpose" and is urging MPs to stop the bill from progressing any further. Rejecting assurances from supporters of assisted dying who claim the proposed British version would be based on the scheme used in the American state of Oregon - widely regarded as the model with the most safeguards - Dr Amy Proffitt said "it's far from a safe system". "The majority, 80% of the people that have assisted death have government insurance with Medicaid or Medicare suggesting that the vulnerable in society are not worth it," she said. "Put that into our NHS and what does it say about us as a society... those with disability, those with learning disabilities, those with social deprivation?" Dr Proffitt added: "I think it's deeply dangerous for the bill that has been proposed and it needs to be scrapped and we go back and look again." She and other leading palliative care doctors have expressed concern about the erosion of end of life care if the bill passes. It is a fear expressed by Britain's hospice sector. Read full story Source: Sky News, 1 June 2025
  3. Event
    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.
  4. News Article
    The Royal College of Psychiatrists (RCPsych) is calling on MPs to consider serious concerns about the Terminally Ill Adults (End of Life) Bill for England and Wales, ahead of the pivotal Commons Report stage debate and Third Reading. With too many unanswered questions about the safeguarding of people with mental illness, the College has concluded that it cannot support the Bill in its current form. RCPsych is once again sharing its expert clinical insight to support MPs in making informed decisions ahead of the debate in Westminster on Friday 16 May 2025. During the Committee stage of the parliamentary process, the College raised questions about the assessments of the coordinating doctor and independent doctor, and is now raising further questions about the multidisciplinary panel (which would include a psychiatrist) being proposed by the Bill. Dr Lade Smith CBE, President of the Royal College of Psychiatrists, said: "After extensive engagement with our members, and with the expertise of our assisted dying/assisted suicide working group, the RCPsych has reached the conclusion that we are not confident in the Terminally Ill Adults Bill in its current form, and we therefore cannot support the Bill as it stands. "It’s integral to a psychiatrist’s role to consider how people’s unmet needs affect their desire to live. The Bill, as proposed, does not honour this role, or require other clinicians involved in the process to consider whether someone’s decision to die might change with better support. "We are urging MPs to look again at our concerns for this once-in-a-generation Bill and prevent inadequate assisted dying/assisted suicide proposals from becoming law." Read press release Source: RCPsych, 13 May 2025
  5. News Article
    Family doctors in England are deeply divided on the issue of assisted dying, BBC research on plans to legalise the practice suggests. The findings give a unique insight into how strongly many GPs feel about the proposed new law - and highlight how personal beliefs and experiences are shaping doctors' views on the issue. BBC News sent more than 5,000 GPs a questionnaire asking whether they agreed with changing the law to allow assisted dying for certain terminally ill people in England and Wales. More than 1,000 GPs replied, with about 500 telling us they were against an assisted dying law and about 400 saying they were in favour. Some of the 500 GPs who told us they were against the law change called the bill "appalling", "highly dangerous", and "cruel". "We are doctors, not murderers," one said. Of the 400 who said they supported assisted dying, some described the bill as "long overdue" and "a basic human right". It comes as MPs will this week again debate proposed changes to the controversial bill, with a vote in parliament expected on whether to pass or block it next month. If assisted dying does become legal in England and Wales, it would be a historic change for society. Read full story Source: BBC News, 14 May 2025
  6. News Article
    A Northern Ireland nurse failed to properly manage a dying patient's pain on the last night of her life, a tribunal has heard. Veteran staff nurse Bernard McGrail has been issued with a four-month suspension order over his failings in dealing with an end-of-life care resident while on a night shift at a Spa Nursing Homes Group facility in July, 2021. A Nursing and Midwifery Council fitness to practice panel said Mr McGrail's misconduct had caused "emotional distress" to the family of the woman, identified as Resident A. It added: "There was a real risk of harm to Resident A through the inadequate management of their pain on their last evening." A remorseful and apologetic Mr McGrail admitted a series of allegations including: a failure to appropriately manage Resident A’s pain; failure to investigate whether Resident A’s syringe driver was working correctly and a failure to escalate that the alarm on Resident A’s syringe driver sounded repeatedly. Mr McGrail also admitted that without clinical justification, he administered a 5mg doses of Apixiban to Resident B on three dates on October 2020. And on occasions between April 2020 and May 2022 failed to administer and/or record the administration of named medications to six other residents. Read full story (paywalled) Source: Belfast Telegraph, 12 May 2025
  7. News Article
    NHS staff including doctors, nurses and pharmacists who do not wish to take part in assisted dying will have specific protection against discrimination under a new amendment from the bill’s sponsor Kim Leadbeater, backed by ministers. Leadbeater, who is hoping to shore up support for the bill before a crucial Commons vote next week, will add the additional protections for any staff involved in the proposed process, including ancillary staff, who will not have to give any reason for their refusal. The private member’s bill, which faces its next Commons stage next Friday (16 May), currently says doctors and health professionals may refuse to take part. But the Guardian understands this will be extended to any person who may possibly be involved in the process and will be amended to say “no person is under any duty to participate in the provision of assistance”. There will also be an amendment to the current Employment Rights Act that will specifically ban discrimination, dismissal or disciplinary action if a person chooses not to participate. “Choice is at the heart of the bill,” Leadbeater said. “Assisted dying is not for everyone and nor should it be. But for those who do make that choice, the bill that MPs will be debating again in less that two weeks, contains even more protections and is more effective and workable than it was before.” Read full story Source: The Guardian, 5 May 2025
  8. News Article
    The family of a man who died in hospital only discovered after his death that a Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) order had been put in place. An investigation by the Parliamentary and Health Ombudsman (PHSO) found that Barts Health NHS Trust failed in its duty to tell Ali Asghar and his family about the order. A DNACPR order means that, if someone’s heart or breathing stops, doctors will not attempt resuscitation. The decision is made by a doctor and does not require patient consent but a patient must be informed if they have capacity. If they do not have capacity their next of kin must be informed. The Ombudsman is urging all healthcare providers to make sure their teams are trained to have these crucial conversations about end-of-life care in a timely and sensitive manner. Read full story Source: PHSO, 11 March 2025
  9. News Article
    At the end of 2023, St Catherine’s hospice near Crawley, West Sussex, moved to a new purpose-built, state-of-the art building. Twenty-four private rooms with en suite bathrooms and French doors leading to individual terraces were designed to make the final days of a patient’s life as peaceful as possible. Medical equipment was concealed, beloved pets were welcome to visit, and a drinks trolley came round each evening. The hospice had cost almost £20m to build and equip, every penny raised by donations, legacies, charity events, trusts and foundations. The land was a gift from a local businessman. Fifteen months later, half the rooms are mothballed and 40 jobs have been lost. Patients have to meet a higher threshold for admission, and a 24/7 helpline for those caring for dying people at home has been reduced to eight hours a day, Monday to Friday. The cuts are the result of a funding crisis shared by most in the palliative care sector. “Hospices are in retreat,” said Giles Tomsett, the CEO of St Catherine’s for the past 11 years. This is happening, he pointed out, just as the baby boomer generation is about to need end-of-life care on a significant scale. According to Hospice UK, a body that represents more than 200 hospices, many have had to make “tough decisions” about the services they provide. Last year, one in five hospices warned of service cuts, and 300 beds have been taken out of commission. Read full story Source: The Guardian, 24 March 2025
  10. Content Article
    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
  11. Content Article
    Research led by Lancaster University has revealed that the exceptional circumstances early in the Covid-19 pandemic led to distressing experiences of death and dying in care homes. Not only did care homes suffer significantly high death rates amongst residents , but this was compounded by the impact of social distancing restrictions on family visiting and external support from palliative care teams for some care home residents dying in the early months of the pandemic. The study was led by Lancaster Professor Nancy Preston of the International Observatory on End-of-Life Care with colleagues from Newcastle University and the University of Sheffield. The research explored the impact on care homes of the early waves of the pandemic between Autumn 2020 and Summer 2021. Interviews were conducted with 16 UK care home staff , three residents , five family members and health service staff working with ten care homes , exploring their experiences of death and dying. Experiences of death and dying in care homes were particularly distressing for staff and families at this time for a number of reasons. Preparing for large scale deaths The findings suggest that care home staff found the prospect of preparing for, and managing a large number of deaths particularly difficult, with one care home manager telling researchers that “Just before lockdown we had a nurse came to the home and said to us, ‘Right you need to be prepared to hold bodies in the care home. Do you have any cold bedrooms where you can hold bodies?’ … and I think that kind of hit us.” Policing family visiting due to social distancing restrictions Care home staff also found it very distressing enforcing strict social distancing restrictions on family visits when a care home resident was dying, which often brought them into conflict with their personal and professional instincts for supporting residents and families at these times. One care home worker said: “It’s just an awful position to be in because who are we to say they can’t say their goodbyes and for how long. That’s the bit that I find difficult.” Distress surrounding deaths for all involved Social distancing regulations were clearly also very distressing for families. As well as time restrictions on visits, they also had to choose a single family member to visit, which was difficult for all involved, and could cause family conflict. The findings suggest that the impact of these factors continued to affect families some months after their bereavement, with one telling researchers: “To end his life without having anyone there with him that he knows. That is just a terrible way to go and I don’t think we’ll ever forgive that really.” Staff also found resident deaths extremely distressing, particularly witnessing the rapid decline of residents whom they had often known and worked with for months or years. They reported not being able to offer the type of end-of-life care that they would wish to, and some felt they had limited external support in managing end-of-life care. Professor Nancy Preston said: “We don’t yet know the long-term impact of this distress for care home staff and families, but planning for future crises should have clear policies for end-of-life care, including prioritising family visiting and ensuring consistent access to external support services including specialist palliative care.”
  12. News Article
    The UK spends £11.7bn on people’s health in the last year of their life, largely on hospital care even though most would rather die at home or in a hospice. The stark disparity is “robbing many tens of thousands of dying people of the chance to remain where they want to be in the final chapter of their life”, according to Marie Curie. A report from the charity has revealed that, in all, Britain spends £22bn a year on health care, social care and welfare benefits for people who will be dead within 12 months. Of the £11.7bn spent on health needs, £9.6bn (81%) goes to hospitals and out of that, more than two-thirds, £6.6bn, is used to provide emergency care such as in A&E. The findings come as MPs consider how to introduce assisted dying for people with a terminal condition who have less than six months to live. The Labour MP Kim Leadbeater’s private member’s bill has prompted widespread agreement that end of life care needs a dramatic expansion. “Through inadequate community care for people in the final year of life, we are currently robbing many tens of thousands of dying people of the chance to remain where they want to be in the final chapter of their life. It is inexcusable and it cannot be ignored any longer,” said Dr Sam Royston, Marie Curie’s executive director of research and policy. “No one wants to be calling an ambulance in the middle of the night because they can’t get the support they need at home, or facing long stays in hospital when they don’t want or need to be there, but that is the shocking reality for far too many dying people.” Read full story Source: The Guardian, 5 February 2025
  13. Content Article
    The ReSPECT process creates personalised recommendations for a person’s clinical care and treatment in a future emergency in which they are unable to make or express choices. These recommendations are created through conversations between a person, their families, and their health and care professionals to understand what matters to them and what is realistic in terms of their care and treatment. ReSPECT and decision-making conversations happen between a person, their families, and their health and care professionals. These conversations help create an understanding of what is important to the person. Patient preferences and clinical recommendations are discussed and recorded on a non-legally binding form which can be reviewed and adapted if circumstances change. The ReSPECT process can be for anyone but will have increasing relevance for people who have complex health needs, people who are likely to be nearing the end of their lives, and people who are at risk of sudden deterioration or cardiac arrest. Some people will want to record their care and treatment preferences for other reasons. The ReSPECT process is increasingly being adopted within health and care communities around the UK. ReSPECT for healthcare professionals Resources, advice and information for healthcare professionals wanting to learn more about ReSPECT. ReSPECT for patients and carers Find out everything you need to know about ReSPECT and what it means for your care, or the care of someone you look after.
  14. Content Article
    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
  15. News Article
    Hospices in England are to receive £100m of government funding over two years to improve end-of-life care, Health Secretary Wes Streeting has announced. Another £26m is going to hospices for children and young people, which is a continuation of money previously given through a grant. It comes after hospice leaders warned they were forced to close beds due to increasing financial pressures. Only about a third of hospice funding comes from the NHS – the rest has to be raised from donations, fundraising and charity shops. Around 170 hospices provide end-of-life care for adults and around 40 provide hospice care for children and young people in England, with some hospices providing care for both. The government said funding announced today was "the biggest investment in a generation" and would go towards improving buildings, equipment and accommodation. Health and Social Care Secretary Wes Streeting said: "Hospices provide the care and support for patients and families at the most difficult time so it is only right they are given the financial support to provide these services. "This package will ensure they will be able to continue to deliver the compassionate care everyone deserves as they come to the end of their life in the best possible environment." Read full story Source: BBC News, 19 December 2024
  16. News Article
    About 300 hospice inpatient beds are currently closed or out of use in England, hospice leaders have warned. They say a lack of funding and staff are the primary reasons why some of England's 170 hospices have had to close beds permanently or take them out of use. Hospice UK, which represents the sector, is now calling for an urgent package of government funding to prevent further cuts. The Department of Health said it was looking at how to financially support hospices to ensure they are sustainable. Annette Alcock, Hospice UK's director of programmes, said the way that hospices are funded and commissioned by the NHS is "acting as a huge cap on what they can do", while also blaming "underlying pressures like staff shortages". She added: "If the government can act in both the short and long term to resolve these problems, these figures are clear evidence that hospices can do a lot more for patients, and a lot more for the NHS. "That's true out in the community too, where most of hospice care is actually delivered. "With better funding and commissioning, hospices could provide so much more care where people most want it - at home." Read full story Source: BBC News, 4 December 2024
  17. News Article
    Fixing the struggling palliative care system must be an immediate priority for the government, say senior doctors, after a proposed law on assisted dying has passed to the next stage of parliament. The Association for Palliative Medicine (APM) says there is a risk the funding needed to pay for doctors and the courts to oversee assisted dying could divert money away from care for the dying. “The UK is often held up as having the best palliative care in the world – but that is not the case any longer. We are not getting the funding we need," said Dr Sarah Cox. MPs voted on Friday to back changing the law in England and Wales to allow assisted dying. It is just the first parliamentary hurdle the bill needs to pass, with months more of debate and voting to come. This week the Office for Health Economics said an increase in palliative care funding was crucial, external, with the system struggling to meet the needs of an ageing population. At least three-quarters of people require palliative care at the end of their lives – that is around 450,000 people a year across the UK. But a recent report by end, external-of-, externallife charity Marie Curie, external cited data showing around 100,000 go without, with half of families unhappy about the care their loved ones receive when they die. There are reports of people left in pain and with too little support. Audits show four in 10 hospitals do not have specialist palliative care services available seven days a week. Hospices, which provide care for around 300,000 people a year, are struggling for money. Around a third of their funding comes from the NHS, with the sector having to raise the rest themselves. A parliamentary report has described this funding system as “not fit for purpose”. Read full story Source: BBC News, 30 December 2024
  18. News Article
    MPs have taken a historic step toward legalising assisted dying in England and Wales by backing a bill that would give some terminally ill people the right to end their own lives. Campaigners in favour of the terminally ill adults (end of life) bill said it was a significant move towards giving people more choice over the way they die, after the Commons backed the bill by 330 votes for to 275 against. Brought by the Labour MP Kim Leadbeater, the bill would give terminally ill adults with less than six months to live the right to die once the request has been signed off by two doctors and a high court judge. It still has further steps to go through before becoming law, and supporters believe assisted dying will not be an option for those with a terminal diagnosis for at least three years. Figures involved in the hospice and end-of-life care sector who are neutral on the issue called for urgent funding and reform of palliative care to make sure patients have a real choice when dying. Read full story Source: The Guardian, 29 November 2024
  19. News Article
    An estimated 20 terminally ill people in the UK die in unrelieved pain each day, according to a study by the independent Office of Health Economics (OHE). According to its research, to be presented to MPs on Tuesday, one in four people receiving palliative care in England have “unmet pain needs”. The OHE said it used “the most conservative of estimates [suggesting] the true number is likely to be much larger”. It calculated that, even with the “highest possible standards of hospice-level palliative care”, more than 7,300 people across the UK died with unrelieved pain in the last three months of their lives in 2023. In 2019, the comparable figure was nearly 6,400 people a year – a 15% increase over four years. It also said that fewer than 5% of terminally ill people in England who needed hospice care in 2023 received it. The OHE’s findings will feed into an intensifying debate over the legalisation of assisted dying ahead of a historic vote by MPs on Friday. The OHE said that irrespective of the outcome of Friday’s vote, investment in high-quality end-of-life care should be a “crucial component of the conversation around assisted dying”. Prof Graham Cookson, the organisation’s chief executive, said: “Our research finds that even assuming the highest standards of care, there remains a group for whom no amount of pain relief will ease their suffering in the last few months of their life. Read full story Source: The Guardian, 25 November 2024
  20. Event
    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
  21. Content Article
    Each year over 600,000 people die in the United Kingdom and many of these deaths occur in hospital, despite the majority of people saying that they would prefer not to die there. Approximately 70% of people die from long-term health conditions that often follow a predictable course, with death anticipated well in advance of the event. The annual number of deaths in the United Kingdom is predicted to rise to 736,000 by mid-2035. Therefore, the provision of care at the end of life must meet the needs of the population. NCEPOD reviewed the quality of care provided towards the end of life for adults with a diagnosis of dementia, heart failure, lung cancer or liver disease and have made a number of recommendations. Recommendations Ensure that patients with advanced chronic disease have access to palliative care alongside disease modifying treatment (parallel planning) to improve symptom control and quality of life. Normalise conversations about palliative/end of life care, advance care plans, death and dying. As a trigger to introduce a conversation which includes the patient and their family/carers, consider: The surprise question “Would you be surprised if this patient died within the next 12 months?” This can be used across all healthcare settings; and/or recurrent hospital admission of patients with advanced chronic disease. Ensure all patients with an advanced chronic disease are allocated a named care co-ordinator. Provide specialist palliative care services in hospitals and in the community, to ensure all patients, including those with non-malignant diseases receive the palliative care they need. Train patient-facing healthcare staff in palliative and end of life care. This training should be included in: undergraduate and postgraduate education; and tegular training for patient-facing healthcare staff. Ensure that existing advance care plans are shared between all providers involved in a patient’s care. Raise public awareness to increase the number of people with a registered health and welfare lasting power of attorney (LPA) well before it is needed. .
  22. News Article
    A bill to legalise assisted dying for some terminally ill adults is the “safest choice” and the “strictest” in the world, the MP behind the new law has claimed as it is set to be published. Mentally competent adults with a life expectancy of six months or less who have a settled wish to die that has been approved by two doctors and the High Court would be able to do so under the proposed legislation for England and Wales. Ahead of its publication on Tuesday, Labour MP Kim Leadbeater insisted her private member’s bill would make it illegal for someone to persuade a person through dishonesty, coercion or pressure to declare they wanted to end their life or to induce someone to self-administer drugs to die. Anyone found guilty of doing so would face a maximum prison sentence of 14 years. Critics argue the controversial Terminally Ill Adults (End of Life) Bill, which is likely to run to more than 40 pages, is being “rushed with indecent haste” and that MPs will not have adequate time to scrutinise it before the 29 November debate. The legislation says two independent doctors must be satisfied that the person is eligible, but no doctors will be obliged to take part in the process. Terminally ill people who have been resident in England and Wales for at least 12 months would have to take the prescribed medication themselves. Health secretary Wes Streeting has already said he intends to vote against the bill, voicing his fears about coercion and people feeling a "duty to die". Read full story Source: The Independent, 12 November 2024
  23. Event
    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
  24. Event
    until
    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
  25. Event
    until
    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
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