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Found 106 results
  1. News Article
    Hospices will be forced to turn dying patients away because they are struggling with steeply rising costs at a time when the NHS is not increasing funding. Hospices look after 300,000 patients and families every year across the UK. It costs about £1.5 billion a year for them to provide this care, with only a third of that coming from the NHS. The rest relies on charitable donations and fundraising in local communities as well as sales in charity shops. As hospices battle to keep going, the Treasury has rejected pleas for a £30 million rescue package this year. The money, those in the sector say, would prevent some from having to close inpatient units and beds or reduce their hospice-at-home teams, which care for patients in the community. Some are already making staff redundant and getting rid of beds. Toby Porter, chief executive of Hospice UK, said the government was making “a huge avoidable mistake”, adding: “People will have a lesser experience at an incredibly important moment and it will lead to system pressures affecting the whole health system.” Read full story (paywalled) Source: The Times, 26 March 2023
  2. Content Article
    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. The report highlights new evidence on out-of-hours care, based on: UK data on out-of-hours emergency department attendance among people who are in the last year of life. interviews with health professionals about out-of-hours services across the UK. a patient and public involvement (PPI) workshop.
  3. News Article
    The cost of living crisis could force dying patients to move into hospice beds as they can no longer afford to heat their homes, it is claimed. The stark warning comes as the care sector faces soaring energy bills of its own, with the industry predicting a huge hike in costs next year. Speaking about the impact the cost of living crisis is having on patients, Paul Marriot, Chief Executive of North East hospice St Cuthbert’s, said: “Here in the North East, for example, many of our patients are already on low incomes and the fact that they are ill increases their costs. The key thing is that they are in a time in life when they’ve got less choice around what they do about [costs]. So it’s not an opportunity for them to switch off the heating, it’s not an option for them, just to wear more clothes, it’s not an option for them to see it out until the spring, because they may not be here in the spring." Read full story Source: The Independent, 17 October 2022
  4. News Article
    A mother from County Down will receive "substantial" undisclosed damages over alleged hospital treatment failures and care given to her daughter. Christina Campbell from Ballygowan brought medical negligence lawsuits over treatment she received at the Ulster Hospital in Dundonald after her daughter, Jessica, died in 2017 with a rare genetic disorder. The claim said that failure to test Ms Campbell during her pregnancy meant the condition went undetected. Damages were also sought for an alleged "ineffective" end of life care plan for the four month old. Jessica was diagnosed with trisomy 13 shortly after her birth in December 2016. She experienced feeding and respiratory difficulties, as well as a congenital heart defect and a bilateral cleft lip and palate. She was discharged from hospital with a home-based end-of-life care plan, including community and respite referral to the hospice, but a few months later. The claims said a failure to provide Ms Campbell with a amniocentesis test, which checks for genetic or chromosomal conditions, meant Jessica's condition was not discovered sooner. The lawsuit also highlighted concerns about Jessica's hospice treatment. It includes alleged uncertainty about the provision of humidified oxygen, a defective feeding pump and delays in a specific feeding plan and saline nebuliser being provided for the family. The family's solicitor said the awarding of damages "signifies the importance of lessons learned" as a result of Ms Campbell's campaign. "It is hoped that lessons can now be learned to ensure no other family has to go through a similar experience," he said. Read full story Source: BBC News, 29 September 2022
  5. Content Article
    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. engaging patients and their families in planning for end of life care at an early stage Elena also explains how she is sharing these messages with both patients and healthcare professionals.
  6. Content Article
    This infographic explains the role community health services play in the NHS healthcare system.
  7. Content Article
    More and more people are dying at home, rather than in a hospital or hospice. With this trend set to continue, how can commissioners ensure that end-of-life care reflects this and meets the needs of people approaching the end of their lives and their loved ones?   This new report from the King's Fund 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.   Drawing on interviews with commissioners, stakeholders and experts in end-of-life care, as well as recently bereaved carers and family members, this report offers reflections and recommendations for those wanting to improve end-of-life care for those dying at home.
  8. News Article
    A woman who struggled to access night-time care for her dying father has told the BBC he "shouldn't have been expected to die in office hours". Tracey Bennett said she was "completely lost" when her dad Michael needed help. Early in 2021, Mrs Bennett, 54, from Doncaster, moved in with her dad, 76-year-old Michael Woodward, to care for him in the last stages of his cancer. One night he had a fall. Mrs Bennett was able to help him back up but turned to the local NHS palliative care phone line for help, only to find it closed. Although she did not feel her father should be in a hospital, she called 999 as she felt she had no-one else to turn to. He died in the early hours of the next morning. "In his hour of need I feel I let my dad down," she said. "He shouldn't have been expected to die in office hours." Almost 70% of the UK does not have a consistent 24-hour help-line for the terminally ill, research suggests. And 27% of these areas do not have a designated phone line, the study funded by Marie Curie found. Ruth Driscoll, from the charity, said the research painted "a bleak picture of out-of-hours care in many areas of the UK". Read full story Source: BBC News, 28 November 2022
  9. News Article
    The government is under pressure to go further on measures to relax rules on powerful painkillers such as morphine to prevent patients suffering “unnecessary pain and distress in the last days of their lives”. On Tuesday the health secretary, Matt Hancock, announced staff in care homes and hospices would be allowed to “re-use” controlled drugs such as morphine and midazolam, with medication prescribed for one patient used for another where there is an immediate need. But the Home Office today confirmed to The Independent that it had no plans to extend the rules to the care of patients in their own homes – a restriction experts and charities have warned could leave people suffering at the end of their lives. The government announced the changes following concerns over the supply of drugs. The Royal College of GPs (RCGP) welcomed the changes announced by Mr Hancock, calling them “a significant step forward”, but added: “This only applies to patients living in care home and hospice settings, so there is still work to be done to ensure patients living in their own homes have appropriate access to necessary medication in a timely way.” Last week the RCGP wrote to home secretary Priti Patel warning that people were suffering unnecessarily due to problems accessing drugs. Read full story Source: The Independent, 30 April 2020
  10. News Article
    Elderly care home residents have been categorised “en masse” as not requiring resuscitation, in a strategy branded unacceptable by the healthcare regulator. People in care homes in Hove, East Sussex and south Wales are among those who have had “do not attempt resuscitation” (DNAR) notices applied to their care plans during the coronavirus outbreak without proper consultation with them or their families, MPs and medical unions fear. Care homes in Leeds have reported that district nurses have been asking them to “revisit do not resuscitate conversations with people who said they didn’t want them” and a care worker in Wales told the Guardian that after a visit from a GP, all 20 of their residents had DNAR notices attached to their plans. DNAR notices are a common part of care plans and many people wish to have them in place because, in the event of cardiac arrest, attempts to resuscitate can cause serious trauma, including broken bones. But the Care Quality Commission and other medical bodies are so concerned about the blanket application of the notices that it has issued a warning to stop. “It is unacceptable for advance care plans, with or without DNAR form completion, to be applied to groups of people of any description,” the notice states. “These decisions must continue to be made on an individual basis according to need.” Read full story Source: The Guardian, 1 April 2020
  11. News Article
    A GP surgery has apologised after sending a letter asking patients with life-limiting illnesses to complete a "do not resuscitate" form. A letter, from Llynfi Surgery in Maesteg, asks people to sign to ensure emergency services would not be called if their condition deteriorated due to coronavirus. "We will not abandon you.. but we have to be frank and realistic," it said. Cwm Taf health board issued an apology from the surgery, the Guardian reports. The letter says in an "ideal situation" doctors would have had this conversation in person but had written to them due to fears they were carrying the virus and were asymptomatic. Read full story Source: BBC News, 1 April 2020
  12. News Article
    Palliative care doctors are urging people to have a conversation about what they would want if they, or their loved ones, became seriously unwell with coronavirus. We should discuss all possible scenarios - even those we are not "comfortable to talk about", they said. Medics said the virus underlined the importance of these conversations. New guidelines are being produced for palliative care for Covid-19 patients, the BBC understands. Read full story Source: BBC News, 21 March 2020
  13. News Article
    The Care Quality Commission (CQC) has awarded 'Outstanding' ratings to St Giles Hospice in Walsall and Whittington. The CQC, an independent regulator of health and social care services in England, has recently introduced a new regime holding hospices to the same level of scrutiny as hospitals, making this outstanding rating all the more impressive. St Giles hospice, founded in 1983, started as a charity caring for local people dying from cancer and now supports people living with incurable illnesses and their families for free. Care providers from the hospice work on-site and in patients’ own homes, and their level of care has made them one of only a handful of hospices to ever have been awarded this accolade. In the CQC report inspectors complimented the hospice for its “compassionate” range of speciality services. Inspectors added: “People were truly respected and valued as individuals. They were empowered as partners in their care, practically and emotionally, by an exceptional and distinctive service.” Read full story Source: National Health Executive, 16 January 2020
  14. Content Article
    Providing high quality care and treatment for patients coming to the end of their lives is likely to involve making difficult and emotionally challenging decisions. This guidance from the General Medical Council provides a framework to support doctors in meeting the needs of each patient as they come towards the end of their life.
  15. Content Article
    This short animated video looks at the importance of clear, compassionate communication in healthcare, particularly when discussing end-of-life care and death with patients.
  16. Content Article
    Dr Claud Regnard (Honory Consultant in Palliative Care Medicine, St Oswald’s Hospice) explains the Mental Capacity Act (England and Wales) and the legal requirements for making best Interest decisions when someone lacks capacity to make a particular decision. This webinar was produced by the Palliative Care for People with Learning Disabilities (PCPLD) Network.
  17. Content Article
    Many patients prefer to avoid hospital-based care towards the end of life, yet hospitalisation is common and more likely for people with low socioeconomic position. The reasons underlying this socioeconomic inequality are not well understood. This study from Davies et al. investigated health, service access, and social support as potential mediating pathways between socioeconomic position and receipt of hospital-based care towards the end of life.
  18. Content Article
    In this article in the Pharmaceutical Journal, Carolyn Wickware asks if liquid morphine should be reclassified. She cites research that Oramorph or oral morphine sulphate solution was directly linked to the cause of death in 13 reports since 2013.
  19. Content Article
    At the first Patient Safety Management Network (PSMN)* meeting of 2022, we were privileged to hear from a bereaved relative about her shocking experience, which reminded us all of why we do what we do.  Claire Cox, one of the PSMN founders, invited Susan (not her real name to protect her confidentiality) to share with us the causes of her relative’s untimely death and the poor and shameful experience when she and her GP started to ask questions. This kicked off a valuable and insightful discussion about how patients are responded to when things go wrong and about honesty and blame, patient and family engagement in decision making when patients are terminally ill, and how we need to ensure that the new Patient Safety Incident Response Framework (PSIRF) guidance embeds good practice informed by the real-life experience of patients and staff.
  20. Content Article
    COVID-19 has meant people have died the ultimate medicalised deaths, often alone in hospitals with little communication with their families. But in other settings, including in some lower income countries, many people remain undertreated, dying of preventable conditions and without access to basic pain relief. The unbalanced and contradictory picture of death and dying is the basis for the Lancet Commission on the Value of Death. Drawing on multidisciplinary perspectives from around the globe, the Commissioners argue that death and life are bound together: without death there would be no life. The Commission proposes a new vision for death and dying, with greater community involvement alongside health and social care services, and increased bereavement support.
  21. Content Article
    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....
  22. Community Post
    What training have you had to have that crucial end of life conversation with a patient and their relatives? What has helped you have those conversations?
  23. Content Article
    This article from Sarcoma UK was written by Dermot’s family to develop their reflections and recommendations on the recent publication of the Healthcare Safety Investigation (HSIB) report, Variations in the delivery of palliative care services to adults.
  24. Content Article
    Health and care services in England are not always able to provide individualised, equitable and coordinated palliative and end of life care (PEoLC) to meet the holistic needs of people and their families. To understand the impact of inconsistent palliative care, the Healthcare Safety Investigation Branch (HSIB) looked at the case of Dermot, a 77-year-old cancer patient. Dermot's case shows the gap between what is needed and what is available. HSIB make three safety recommendations to NHS England aimed at improving the delivery of palliative and end of life care.
  25. Content Article
    People dying in UK hospitals without specialist palliative care input frequently have “significant and poorly identified unmet needs,” finds a UK-wide evaluation—the first of its kind—published online in the journal BMJ Supportive & Palliative Care. In response to the perceived unmet needs of people dying in hospitals, 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: Seeking Excellence in End-of-life Care UK or SEECareUK.  Palliative care specialists assessed how well the holistic needs of 284 adult patients nearing death, but not referred to palliative care services, were being met on one single day between 25 April and 01 May 2022. Patients in emergency care departments or intensive care units weren’t included.  Nearly all (93%) of those assessed had demonstrable unmet need, with this deficit more apparent in district general hospitals than it was in teaching hospitals or cancer centres. It is estimated that 1 in 10 patients admitted to UK hospitals will die during their inpatient stay. As specialist palliative care teams often function as a consult service, referral from the managing team is required.  But complexities around recognising that a patient is dying and the stigma associated with palliative care mean these referrals are frequently not made, say the researchers of this study.
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