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Found 31 results
  1. Content Article
    Recommendations Out-of-hours palliative and end of life care is currently inadequate and fragmented, and must be better valued, prioritised and strengthened. Services must be developed and provided equitably, irrespective of diagnosis, socio -demographic characteristics (e.g. age, ethnicity) and geographical area. Service development and planning must be actively informed by the voices of patients and informal carers; collaboration with patients and informal carers should be used to drive improvements in out-of-hours care, shape service development and help identify potential solutions for gaps in care. Integrated Care Systems, Health Boards and NHS Trusts, Integration Joint Boards and NHS Health Boards, and Health and Social Care (HSC) Trusts across the UK need to strategically develop, enable and support greater integration and coordination of out-of-hours services. District nurses and community nursing teams play an extensive role in providing hands-on out-of-hours care, but huge pressures on this workforce limit the care they can provide; improved workforce planning, provision, and support for community providers of out-of-hours palliative and end of life care is essential. A designated telephone line for people with palliative and end of life care needs and their informal carers should be available 24/7, in every part of the UK. Availability and use of shared care records should be audited regularly to overcome the challenges identified in using, sharing and implementing these records across the UK. Such records should be based on timely conversations about needs, wishes and preferences for care at the end of life, and include the availability of anticipatory medicines (if appropriate). The questionnaire provided in this report can be used by those with commissioning responsibilities to understand and address gaps in out-of-hours service provision and identify priorities for improvement. Research into out-of-hours care is essential for future service development and needs continued funding.
  2. Content Article
    My mother, 87 years, was admitted to hospital with a suspected heart attack. At the time, she was on a strong dose of a GP-prescribed opioid (fentanyl) to manage her growing lung cancer. The Duty doctor in the hospital seemed panicked as she was so unwell and used a drug to totally reverse her morphine as they thought she had overdosed. This caused excruciating pain for most of the last 60 hours of her life. They hadn’t properly assessed the history of her prescription or asked me, her documented health advocate, about the drug or my mother’s end of life wishes. After a 2-year long traumatic journey for the family, the Inquest issued a Prevention of Future Deaths report, agreeing her prior medication should have been properly assessed. After another year and a convoluted journey through the health system, NHS England’s Patient safety team issued a National Safety Alert to all English hospitals around more careful use of pain relief reversing. Five years later, my good friend was on an unusual cocktail of GP-prescribed drugs for her very painful arthritis. She was admitted to hospital after a fall that dislocated her severely arthritic shoulder. For three days in hospital she went through different medical teams, but no one looked at her pain control needs or her unusual medication, and the only pain relief medication that had worked for her for years was removed totally from very early on in the admission. She suffered on those hard hospital beds, unable to move to a comfortable position due to her painful arthritis, lack of adequate pain control and her shoulder that remained painfully dislocated. She could not move on those beds without help. She was in agony for three days. Sadly she died of a pulmonary embolism in hospital in the midst of that traumatic experience. What both these people have in common is the neglect of their medically prescribed, carefully designed pain control to meet their unique needs, their understandable wishes and personal rights. As a result their essential pain control was totally removed while other necessary medical interventions occurred. These patient and service user’s rights were not respected. Huge suffering resulted. This I believe needs addressing and learning from. Pain control needs of patients with chronic conditions needs to be carefully assessed and addressed on all hospital admissions from the very start of admission. The current complaint and Inquest systems do not have as their agenda these types of safety learning. There are two routes whereby these incidents can be recorded, with one route that may lead to an investigation and system learning nationally. One is the NHS patient portal, which is just for reporting (no one will get back to you, but the information you share could be used to improve safety for future patients), and the other is the Healthcare Safety Investigation Branch (HSIB) who do national investigations almost always on recently occurring events. I would add there are developments in patient safety learning, including patient safety partners rolling out across some health facilities, but this is relatively early on in a national process: https://www.england.nhs.uk/patient-safety/framework-for-involving-patients-in-patient-safety/ The new NICE guidance on Shared Decision Making also adds to the pressure to learn and change from cases like this. Perhaps special guidance is needed for those admitted for emergency care with complex palliative medication needs? I hope a Body will take this up soon. The patient, service user, family and carer voice must be heard and acted on to improve patient safety at these difficult times. If you or anyone you know has had an experience like this, particularly in the last few months, do let me know by emailing me or commenting on this post below, as the routes above could lead to long lasting learning. It is sorely needed.
  3. Content Article
    Key findings Many more people died in 2020 than usual, with many experiencing tremendous hardships at the end of life. The place where people died changed, with many more dying at home. Palliative and end of life care services have been a vital part of the pandemic emergency response, switching their services into delivery in community settings. Care was compromised by shortages of essential PPE, medicines and staff – these were made worse by hospices not being seen as 'frontline NHS'.
  4. Content Article
    Key findings include: In 2020/21, hospices supported an estimated 300,000 people in the UK, including people at the end of life, families, carers and bereaved relatives. During the pandemic there has been a shift in where and how services are provided, with much more care delivered at home. In 2020/21, there were almost a million ‘hospice at home’ contacts. In contrast, day services and hospice outpatient settings saw a decline in the number of contacts and people seen, and fewer people were hospice inpatients. In addition, the complexity of patients’ needs may have increased, with patients receiving inpatient care having more contacts each, and contacts per person for bereavement services also increasing. In 2020/21, more than 120,000 community support contacts were delivered virtually, along with virtual welfare, bereavement and therapy services. Hospices switched to providing services remotely, to respond to concern from patients about attending appointments and to reduce the risk of Covid-19 infection. In 2020/21, there was a drop in the number of people who hospices supported but this was small, particularly when compared to the significant falls in activity across other health services during the pandemic.
  5. News Article
    More than 1,300 patients a year are having NHS funding for their palliative care withdrawn after living longer than expected, BBC analysis shows. Terminally ill or rapidly-declining patients are given fast-track support, allowing them to live outside hospital. From 2018 to 2021, a total of 9,037 people had this funding reviewed in England and Wales, with 47% of them losing all support. A further 15% of patients had their continuing healthcare support replaced with the more limited NHS-funded nursing care. Sandra Hanson was referred to the fast-track pathway of the NHS continuing healthcare scheme in mid-2020, after her needs were judged by a clinician to be "end of life". She was diagnosed with end-stage dementia, and had been in hospital eight times in the previous year following multiple falls and bouts of pneumonia. The funding covered the costs of a nursing home, where she suffered fewer falls. But in March 2021, this funding was reviewed by her local Clinical Commissioning Group (CCG). These assessments, usually undertaken by a multi-disciplinary team including health and social care professionals, consider the severity of a person's needs in areas such as mobility, cognition and behaviour. Sandra's daughter, Charlotte Gurney, said the family was represented by a social worker they had not previously met, and describes the meeting as "traumatic" as she tried to explain her mum's needs. "We just felt not listened to... we were treated as if we were trying to swindle the system. Sandra's support was withdrawn, and she had to be moved to a new nursing home, financed by her husband Malcolm. Shortly afterwards, she broke her wrist following a fall and injured her face. The family believe had the review correctly identified Sandra's needs and risks, this could have been avoided. Read full story Source: BBC News, 17 March 2022
  6. News Article
    Dying people will be given an explicit legal right to healthcare for the first time in NHS history, requiring every part of England to provide specialist palliative care. New analysis from the charity Marie Curie shows that about 215,000 people a year miss out on end-of-life care and that without intervention this could rise to 300,000 within 20 years. The government will back an amendment to the Health and Care Bill in the House of Lords. Baroness Finlay of Llandaff, a professor of palliative care medicine and supporter of the amendment, said: “This change is incredibly important. For the first time the NHS will be required to make sure that there are services to meet the palliative care needs of everyone for whom they have responsibility in an area. People need help early, when they need it, seven days a week — disease does not respect the clock or the calendar.” She told the Lords that although “general basic palliative care should be a skill of every clinician”, specialist palliative care was a “relatively new specialty, which is why it was not included in the early NHS legislation”. The government amendment will introduce a specific requirement for “services or facilities for palliative care” to be commissioned by integrated care boards, responsible for local services under the government’s NHS reforms, in every part of England. Matthew Reed, chief executive of Marie Curie, said: “If you need palliative and end-of-life care today, the chances of you getting the pain relief, symptom control and support for your family that you need depend largely on where you live, your ethnicity, gender and on what condition you have. This is wrong. “We welcome the news coming out of the Department of Health and Social Care. The impact of this legal requirement to provide appropriate care to dying people could be transformative — it is one of the biggest developments in end-of-life care since the inception of the NHS. This change has the potential to end the current postcode lottery and make end-of-life care fair for all." Read full story (paywalled) Source: The Times, 25 February 2022
  7. News Article
    Death has become “over medicalised” and the public should be encouraged to discuss dying and grief, experts have said. There's a call for shift in attitude towards palliative care, with more emphasis on compassion and less on giving medication that may prolong pain. According to a new Lancet commission, an overemphasis on aggressive treatments to prolong life, global inequities in palliative care access, and high end-of-life medical costs have led to millions of people suffering unnecessarily at the end of their life. The authors also note that the pandemic has made death and dying more prominent in daily life, while health systems have been “overwhelmed” when trying to care for those dying. People often died alone, with families unable to say goodbye to loved ones or grieve together, the commission said – the effects of which will “resonate for years to come”. The researchers argue that many people, mainly in low- and middle-income countries, have no access to end-of-life care, and particularly to opioids, while those in high-income countries may be overtreated. Attitudes towards death and dying should be “rebalanced”, the authors conclude, away from a medicalised approach towards a “compassionate community model”, where families work with health and social care services to care for those dying. Read full story (paywalled) Source: The Telegraph, 31 January 2022
  8. Content Article
    The guidance provides advice on the following subjects: making decisions with patients who have capacity what to do if your patient doesn’t have capacity assessing the overall benefit of treatment advanced care planning meeting a patients' nutrition and hydration needs cardiopulmonary resuscitation the role of relatives, partners and others close to the patient organ donation and care after death.
  9. Event
    Dr Donna Prosser, Chief Clinical Officer, Patient Safety Movement Foundation, is joined by a neonatal palliative care expert, an adult palliative care expert, and a family member representative for palliative care to discuss introducing palliative care conversations, embracing shared decision-making, differentiating palliative care from end of life care, and implementing organisational initiatives to improve consistent and meaningful palliative care delivery. Register
  10. Content Article
    "Several concerns have been raised about the risk of overdose and death from oral morphine sulphate solution over the past few years, but they have gone unheard." In light of coroners reports of deaths related to abuse, or accidental overuse of Oramorph or oral morphine sulphate solution. the author argues for increased regulation. Commenting: "In the absence of any action from ministers, it seems that healthcare professionals are going to have to take the care of vulnerable patients into their own hands." My reflections on this are: Is this a signal for increased regulation or improved prescribing practice, improved medicine management, and more education & acces to trusted information for patients? Would there be downsides to increased regulation?
  11. Content Article
    This web page includes: Films The framework Community Breaking bad news Ceilings of treatment Resources Evidence-based advice for difficult conversations, by Professor Ruth Parry, Loughborough University Poster and sketch note Telephone call checklist