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Found 153 results
  1. Content Article
    The Falls and Fragility Fractures Audit Programme (FFFAP) is looking to recruit new members to their award-winning Patient and Carer Panel. FFFAP is a national clinical audit run by the Royal College of Physicians (RCP) and commissioned by the Healthcare Quality Improvement Partnership on behalf of NHS England and the Welsh Government. Their work aims to improve the care that patients with fragility fractures receive in hospital and after discharge and to reduce inpatient falls. 
  2. Content Article
    An action-oriented and radically hopeful field guide to the underground, patient-led revolution for better health and healthcare. Anyone who has fallen off the conveyer belt of mainstream health care and into the shadowy corners of illness knows what a dark place it is to land. Where is the infrastructure, the information, the guidance? What should you do next? In Rebel Health, Susannah Fox draws on twenty years of tracking the expert networks of patients, survivors, and caregivers who have come of age between the cracks of the health care system to offer a way forward. Covering everything from diabetes to ALS to Moebius Syndrome to chronic disease management, Fox taps into the wisdom of these individuals, learns their ways, and fuels the rebel alliance that is building up our collective capacity for better health. Rebel Health shows how the next wave of health innovation will come from the front lines of this patient-led revolution. Fox identifies and describes four archetypes of this revolution: seekers, networkers, solvers, and champions. Each chapter includes tips, such as picking a proxy to help you navigate the relevant online communities, or learning how to pitch new ideas to investors and partners or new treatments to the FDA. On a personal level, anyone who wants to navigate the health care maze faster will want to become a health rebel or recruit some to their team. On a systemic level, it is a competitive advantage for businesses, governments, and organizations to understand and leverage the power of connection among patients, survivors, and caregivers.
  3. News Article
    More than 100 families looking after severely disabled adults and children outside hospital, have told the BBC that the NHS is failing to provide enough vital support. The NHS says help is based on individual needs and guidelines ensure consistency across England and Wales. However, some families describe the system as adversarial. Only those living outside hospital with life-limiting conditions, or at risk of severe harm if they don't have significant support, get this help from the NHS. It is provided through a scheme called Continuing Healthcare (CHC) for adults, and its equivalent for under-18s, Children and Young People's Continuing Care. Cases in England are decided by NHS Integrated Care Boards (ICBs) - panels responsible for planning local health and care services. In Wales, they are overseen by local health boards. The BBC has heard from 105 families who described serious concerns with how the two schemes are working - with most calling for reform. One young man with 24-hour needs hasn't received any CHC help despite being eligible since February 2023 - his parents, who first applied for support on his behalf nearly two years ago, currently provide round-the-clock care Another family were told overnight care for their teenage child - who is non-verbal, has severe mobility issues and requires 24/7 support - would be reduced from seven down to three nights a week, without a reason being given. Read full story Source: BBC News, 14 February 2024
  4. Content Article
    In my 15 years focusing on developing drink thickening solutions for dysphagia patients, the intersection of dysphagia management and patient safety has become increasingly apparent. Dysphagia, or difficulty swallowing, presents not only as a significant health challenge but also as a critical patient safety issue. The condition's underdiagnosis, particularly in vulnerable populations, heightens the risk of severe complications, including choking, aspiration pneumonia, dehydration and the profound fear of choking that can lead to malnutrition.
  5. News Article
    Unregulated healthcare workers are a risk to the most vulnerable patients, a former victim’s commissioner has warned after The Independent and Sky News uncovered a “horrifying” sexual abuse scandal within NHS mental health services. Dame Vera Baird called for a formal framework for healthcare assistants and support workers, who do not have a mandatory professional register like doctors and nurses and can “come in and go out from one hospital to another” without the same thorough checks. Dame Vera told The Independent that the setup did not lead to a “very safe way of working” because healthcare assistants are “in an environment where they are responsible for vulnerable people”. “If there has been abuse from mental health care assistants who are also agency staff who are coming in and going out from one hospital to another, that needs to be looked at,” she said. “This is not a very safe way of working. Some kind of framework around agency staff seems to be very important [to have].” She warned that sexual predators may go into mental health services and work in units where patients can be “highly sexualised”, prompting a “dreadful combination”. Read full story Source: The Independent, 30 January 2024
  6. Content Article
    Poor health literacy can inhibit patient or caregiver understanding of care instructions and threaten patient safety. This cross-sectional study from Selzer et al. of medically complex children treated at one academic hospital in Austria reveals that despite high levels of satisfaction with care, many caregivers do not understand medication management instructions at discharge. Misunderstandings were more likely to occur with higher numbers and/or new prescriptions, poor medication-related communication, and language or literacy barriers.
  7. News Article
    Four carers who were convicted of abusing patients at a secure hospital have been given suspended sentences. An undercover BBC Panorama investigation showed patients being mocked by staff at Whorlton Hall in County Durham between 2018 and 2019. The four former staff, who are all men, were sentenced on Friday after being convicted by a jury last year. Judge Chris Smith said Whorlton Hall was an "unpredictable and inherently frightening place to live". The specialist hospital for people with complex needs was privately run by Cygnet, but funded by the NHS. It has since closed. Judge Smith said Whorlton Hall had a "malign culture" and was an "unpredictable and inherently frightening place to live." He added: "Each of you failed those patients and their families. It was a fundamental breach of trust." Read full story Source: BBC New, 20 January 2024
  8. Content Article
    A new report published by Carers Scotland shows the devasting impact the health and social care crisis is having on the health of Scotland’s 800,000 unpaid carers. 
  9. News Article
    A third of carers with poor mental health have considered suicide or self-harm, data shows. Figures given to the Liberal Democrats by Carers UK reveal that many of the UK’s millions of carers who look after relatives have bad mental health, with some “at breaking point”. In a survey of nearly 11,000 unpaid carers, the vast majority said they were stressed or anxious, while half felt depressed and lonely. More than a quarter said they had bad or very bad mental health. Of these, more than a third said that they had thoughts related to self-harm or suicide, while nearly three-quarters of those felt they were at breaking point. Helen Walker, the chief executive of Carers UK, said: “Unpaid carers make an enormous contribution to society, but far too regularly feel unseen, undervalued and completely forgotten by services that are supposed to be there to support them. “Not being able to take breaks from caring, being able to prioritise their own health or earn enough money to make ends meet is causing many to hit rock bottom.” Read full story Source: The Guardian, 22 November 2023
  10. Content Article
    An estimated 90,000 people are living with dementia in Scotland, with that number expected to increase to 164,000 by 2036. These national clinical guidelines from Health Improvement Scotland, the first to be published in nearly 20 years, provide recommendations on the assessment, treatment and support of adults living with dementia. It calls for greater awareness of pre-death grief for people with dementia, their carers and their loved ones, as they fear the loss of the person they know. To accompany the guidelines, a podcast has been produced by Health Improvement Scotland speaking to professionals, including Dr Adam Daly, Chair of Healthcare Improvement Scotland’s Guideline Development Group and a Consultant in old age psychiatry, and Jacqueline Thompson, a nurse consultant and the lead on pre-grief death for the guideline. We also hear from Marion Ritchie, a carer who experienced pre-death grief while caring for her husband.
  11. Content Article
    The BMJ’s new “practical prescribing” series aims to improve decision making Prescribing is one of the most fundamental parts of medicine and one of the most common interventions in health care. In the UK, the British National Formulary lists more than 1600 drugs. The number of prescriptions dispensed in the community in England grew by 66% from 686 million prescriptions in 2004 to 1.14 billion prescriptions in 2021-22.34 Polypharmacy has also increased, with around 15% of people in England taking five or more medicines a day and 7% taking eight or more medicines a day. The BMJ in conjunction with the Drug and Therapeutics Bulletin has commissioned a series of articles on practical prescribing. These articles will highlight important issues for prescribers to consider and prompts for shared decision making between prescribers, patients, and their carers. The series—targeted at all medical and non-medical prescribers, particularly doctors in training—will cover medicines commonly prescribed in primary and secondary care. The format is designed to help readers recall their understanding of a medication through a series of questions, exploring up-to-date evidence, and reviewing accessible information not readily found in prescribing texts.
  12. Content Article
    The Care Quality Commission (CQC) State of Care is an annual assessment of health care and social care in England. The report looks at the trends, shares examples of good and outstanding care, and highlights where care needs to improve.
  13. Content Article
    This report provides a comprehensive analysis of the adult social care workforce in England and the characteristics of the 1.52 million people working in it. Topics covered include: recent trends in workforce supply and demand, employment overview, recruitment and retention, demographics, pay, qualification rates, and future workforce projections.
  14. Content Article
    This joint manifesto has been produced by the charities Sue Ryder, Marie Curie, Together for Short Lives, National Bereavement Alliance and Hospice UK. Ahead of the next General Election, they are calling upon all political parties and candidates to commit to policies that ensure everyone affected by dying, death and bereavement receives the best possible care and support, both now and in the future. The manifesto calls for the new Government to: Deliver a new funding solution for hospices and palliative and end of life care to end the postcode lottery in access Introduce a national delivery plan for palliative and end of life are in every nation to support delivery of local services Guarantee that palliative and end of life care services meet each individual’s needs, including those of people dying at home Act to ensure that nobody dies in poverty and tackle inequalities in palliative and end of life care Improve support for families and carers of people with a terminal illness
  15. Content Article
    Allergic reactions vary in severity. People with food allergy tend to have reactions which affect the skin or gut, but around one third of reactions involve the breathing: these more serious allergic reactions are known as anaphylaxis. Very rarely, anaphylaxis can be severe and therefore life-threatening. This leaflet created by Allergy UK and Anaphylaxis UK explains how you can reduce the risk of this happening. Anaphylaxis is unpredictable and can occur in people who have never had this type of reaction before, but most people will recover fully. 
  16. Content Article
    Constipation can be a life–threatening issue for people with a learning disability who are at heightened risk from complications if it is left untreated. This campaign has been developed by NHS England to support people with a learning disability, their carers and people who work in primary care to recognise the signs of constipation. Resources have been co–created with input from the Down’s Syndrome Association, Mencap and Pathways Associates to ensure that they are fit for purpose. The resources aim to: Drive awareness of the seriousness of constipation Help people recognise the signs of constipation at an early stage Empower people to take action and ensure that people with a learning disability experiencing constipation get the right health support straight away Raise awareness of the steps which can be taken to prevent constipation.
  17. Content Article
    This guide is intended for people caring for people living with Alzheimer’s Disease and other forms of dementia, to help facilitate conversations that can help to make health care decisions as the need arises. It has been produced as part of the Conversation Project, a public engagement initiative of the Institute for Healthcare Improvement (IHI). The Project’s goal is to help everyone talk about their wishes for care through the end of life, so those wishes can be understood and respected.
  18. Content Article
    Reflecting on the impact of restrictions placed on families and visitors to hospitals and care homes during the Covid-19 pandemic, this article, published in the BMJ, argues that families must be recognised and valued as partners in patient care.
  19. Content Article
    Melanie Whitfield, Associate Director of Patient Safety at Kingston NHS Foundation Trust, and Helen Hughes, Chief Executive of Patient Safety Learning, recently ran a workshop for Patient Safety Partners (PSPs) at the Kingston Trust. Here is a summary of the workshop.
  20. Event
    This joint conference hosted by The Mental Health – Time for Action Foundation and Safely Held Spaces is aimed at stimulating discussion and promoting change in the way mental health services view the role of the family in the therapeutic process. Going beyond the “carer-patient” model, the conference brings into focus the broader perspective that mental health is not just an individual concern but involves the whole family system. Recognising the importance of the family system’s wellbeing promotes a more holistic approach to mental health. Our objective is to foster an environment for learning and discussion about the latest evidence-based practices across the NHS and third sector organisations. The conference will encompass a series of talks, workshops, and interactive panel discussions. You will have the opportunity to engage with a network of families experiencing mental distress, paving the way for collaborative efforts.
  21. Content Article
    The Safe Care at Home Review is an important reminder that people with care and support needs may experience abuse and neglect, sometimes under the guise of ‘care’. Older people, or people with disabilities, may be particularly vulnerable to harm because of their dependence on others and the complexity of their care needs. They might rely on other people for physical, mental or financial support, and may face difficulties recognising or reporting harm. The review draws on a range of evidence, including the Home Office funded Vulnerability Knowledge and Practice Programme, which has highlighted that one in six domestic homicides involved people who were cared for by, or caring for, the suspect.
  22. Content Article
    In this blog, Sophie Jarvis, NIHR Public Partnerships Manager, Una Rennard, a public contributor, and Bryher Bowness, a PhD Student at King’s College London, highlight the role of people who care for friends and family in health and social care research, and why they should be involved.
  23. Content Article
    Unpaid carers provide significant levels of support to family or friends–equivalent to four million paid care workers. Carers often need support with their own health and wellbeing, but they are not always able to access this. Researchers from The King's Fund interviewed commissioners and providers of support to unpaid carers, ran focus groups with unpaid carers in four areas of England, spoke to national stakeholders and reviewed existing literature and national data sets, in order to understand the current picture of local support available for unpaid carers in England.
  24. Content Article
    This article looks at the experience of Tammy Dobbs, who has cerebral palsy and requires extensive support from home carers to carry out daily tasks. In 2016, Tammy's care needs were reassessed by the state of Arkansas where she lives, and the hours of support she was eligible to receive were cut in half. The change in eligibility was due to a new state-approved algorithm that had calculated her support needs in a new way, in spite of the fact that there was no change to her level of need.  The situation caused Tammy much distress and resulted in drastic life changes. The article highlights the issues associated with the use of algorithms to determine need and allocate resources in health and social care. It also raises questions about what transparency means in an automated age and highlights concerns about people’s ability to contest decisions made by machines.
  25. Content Article
    Care home residents are particularly vulnerable to patient safety incidents, due to higher likelihood of frailty, multimorbidity and cognitive decline. However, despite residents and their carers wanting to be involved in safety initiatives, there are few mechanisms for them to contribute and make meaningful safety improvements to practice. This study aimed to develop a measure of contributory factors to safety incidents in care homes to be completed by residents and/or their unpaid carers.
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