Jump to content

Search the hub

Showing results for tags 'Patient / family support'.

More search options

  • Search By Tags

    Start to type the tag you want to use, then select from the list.

  • Search By Author

Content Type


Forums

  • All
    • Commissioning, service provision and innovation in health and care
    • Coronavirus (COVID-19)
    • Culture
    • Improving patient safety
    • Investigations, risk management and legal issues
    • Leadership for patient safety
    • Organisations linked to patient safety (UK and beyond)
    • Patient engagement
    • Patient safety in health and care
    • Patient Safety Learning
    • Professionalising patient safety
    • Research, data and insight
    • Miscellaneous

Categories

  • Commissioning, service provision and innovation in health and care
    • Commissioning and funding patient safety
    • Digital health and care service provision
    • Health records and plans
    • Innovation programmes in health and care
    • Climate change/sustainability
  • Coronavirus (COVID-19)
    • Blogs
    • Data, research and statistics
    • Frontline insights during the pandemic
    • Good practice and useful resources
    • Guidance
    • Mental health
    • Exit strategies
    • Patient recovery
    • Questions around Government governance
  • Culture
    • Bullying and fear
    • Good practice
    • Occupational health and safety
    • Safety culture programmes
    • Second victim
    • Speak Up Guardians
    • Staff safety
    • Whistle blowing
  • Improving patient safety
    • Clinical governance and audits
    • Design for safety
    • Disasters averted/near misses
    • Equipment and facilities
    • Error traps
    • Health inequalities
    • Human factors (improving human performance in care delivery)
    • Improving systems of care
    • Implementation of improvements
    • International development and humanitarian
    • Patient Safety Alerts
    • Safety stories
    • Stories from the front line
    • Workforce and resources
  • Investigations, risk management and legal issues
    • Investigations and complaints
    • Risk management and legal issues
  • Leadership for patient safety
    • Business case for patient safety
    • Boards
    • Clinical leadership
    • Exec teams
    • Inquiries
    • International reports
    • National/Governmental
    • Patient Safety Commissioner
    • Quality and safety reports
    • Techniques
    • Other
  • Organisations linked to patient safety (UK and beyond)
    • Government and ALB direction and guidance
    • International patient safety
    • Regulators and their regulations
  • Patient engagement
    • Consent and privacy
    • Harmed care patient pathways/post-incident pathways
    • How to engage for patient safety
    • Keeping patients safe
    • Patient-centred care
    • Patient Safety Partners
    • Patient stories
  • Patient safety in health and care
    • Care settings
    • Conditions
    • Diagnosis
    • High risk areas
    • Learning disabilities
    • Medication
    • Mental health
    • Men's health
    • Patient management
    • Social care
    • Transitions of care
    • Women's health
  • Patient Safety Learning
    • Patient Safety Learning campaigns
    • Patient Safety Learning documents
    • Patient Safety Standards
    • 2-minute Tuesdays
    • Patient Safety Learning Annual Conference 2019
    • Patient Safety Learning Annual Conference 2018
    • Patient Safety Learning Awards 2019
    • Patient Safety Learning Interviews
    • Patient Safety Learning webinars
  • Professionalising patient safety
    • Accreditation for patient safety
    • Competency framework
    • Medical students
    • Patient safety standards
    • Training & education
  • Research, data and insight
    • Data and insight
    • Research
  • Miscellaneous

News

  • News

Find results in...

Find results that contain...


Date Created

  • Start
    End

Last updated

  • Start
    End

Filter by number of...

Joined

  • Start

    End

Group

First name

Last name

Country

Join a private group (if appropriate)

About me

Organisation

Role

Found 300 results
  1. Content Article
    In the dynamic landscape of healthcare, the unexpected deterioration of a hospital patient presents formidable challenges for medical professionals and families alike. It is during these critical moments that the concept of patient rescue becomes profoundly significant. Families, empowered with knowledge and effective communication strategies, play a pivotal role alongside healthcare providers in advocating for their loved ones and contributing to the success of rescue efforts. Watch this video from the World Patients Alliance to enhance your skills and confidence in advocating for patients' needs.
  2. Content Article
    Laura Cockram, Head of Policy and Campaigning at Parkinson's UK, and regular blogger for the hub, shares with us what Parkinson's UK will be doing to support World Parkinson's Day.
  3. Content Article
    This article published by The Justice Gap highlights new research that has revealed the psychological toll of the inquest system on people whose loved ones die in contested circumstances, including struggling with a complicated legal process and suffering due to cuts to the system.
  4. 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. 
  5. Content Article
    This is part of our series of Patient Safety Spotlight interviews, where we talk to people working for patient safety about their role and what motivates them. Magda talks to us about her role as Family Liaison Officer Team Lead, how PSIRF has changed the way her Trust involves patients and families after patient safety incidents and the importance of placing patient and family perspectives at the heart of learning responses.
  6. News Article
    The mother of a 13-year-old girl who died of sepsis has said she hopes Martha’s rule, which gives patients and their families the right to a second medical opinion, will “upend” the “hierarchy” on hospital wards. Merope Mills, who campaigned with her husband, Paul Laity, to give families more say regarding care following the death of their daughter Martha, also called for a “mutual respect” between patients and doctors. More than 140 NHS sites in England have agreed to implement Martha’s rule, a patient safety initiative that will give patients and their families round-the-clock access to a rapid review by an independent critical care team from elsewhere in the hospital if they feel their health, or that of a family member, is deteriorating and they are not being listened to. Speaking at NHS ConfedExpo on Wednesday, Mills, an executive editor at the Guardian, said: “My big thing is, I think we need to be more equal. “It’s a very unequal place, a hospital ward, and there’s hierarchy and it’s very steep and it’s very strict. And, you know, when I first started talking about that, I sort of thought the nurses were at the bottom of the hierarchy. “And I refer to that because they didn’t feel that ability to speak up in Martha’s case. But I’ve actually come to realise that the people at the bottom of the hierarchy are the patients. “They are the ones with the least power and I just would like to upend that and just have a sense of mutual respect between doctor and patient.” Read full story Source: The Guardian, 14 June 2024
  7. Content Article
    Four of the UK’s leading children’s and young people’s cancer charities, Young Lives vs Cancer, Teenage Cancer Trust, Ellen MacArthur Cancer Trust, and Children’s Cancer and Leukaemia Group (CCLG), have launched The North Star, an ambitious vision for a better future for children and young people with cancer. In 2022, the charities, together with Dartington Service Design Lab, began an in-depth programme of qualitative and quantitative research, with the aim to transform cancer care for children and young people. This evidence base, which includes the lived experience of over 1,500 young people, parents, carers and siblings, now provides the foundation to develop solutions and inform decisions that achieve greater outcomes for young people and their families affected by cancer. This report focuses on the needs and wellbeing of children and young people with cancer and their families and identifies the gaps in support and areas which need vital transformation.
  8. News Article
    A new service in Somerset is being set up to support women who have had adverse outcomes during pregnancy. Maternity and neonatal independent senior advocates (MNISA) say they will act on behalf of women if they feel their experience when being cared for during pregnancy led to something going wrong. This can include death, babies being diagnosed with brain injuries or mothers needing critical care. MNISAs can attend meetings or support users through investigations and complaints. The service will be piloted until next year and while the role is independent from the maternity and neonatal trust provider (Somerset NHS Foundation Trust), it sits within NHS Somerset. Jane Innes, a qualified lawyer who has worked across the NHS for 30 years, will take up the new role in Somerset. She said: "There is an acknowledgement that people's voices need to be heard and listened to so systems can act and respond appropriately." Read full story Source: BBC News, 11 June 2024
  9. Content Article
    People who have used health services are often invited to offer their expertise through research, service evaluation, giving patient experience talks or other forms of feedback. This is often referred to as Patient and Public Involvement (PPI). This guidance by Imperial College London and the National Institute for Health and Care Research (NIHR) is intended for healthcare professionals, staff who work in patient experience roles, healthcare organisations, researchers and others who interact with service users and their relatives who are giving insight and feedback through a PPI process. It has evolved from the lead author’s observations when contributing to PPI activities, and the recognition that more needs to be done to create a safe psychological environment to enable people to feel comfortable when contributing and to be involved without harm.
  10. Content Article
    The Triangle of Care is a therapeutic alliance between carers, service users and health professionals. It aims to promote safety and recovery and to sustain mental wellbeing by including and supporting carers.
  11. Content Article
    Using open-text responses from the Bereaved Family Survey (BFS), this study in the American Journal of Surgery sought to explore Veteran family experiences on end-of-life care after surgery. Families that left open text comments often expressed a belief in their loved one's unnecessary pain, expressing distrust in the treatment decisions of the care team. The results also showed that limited communication about the severity of disease or risks of surgery caused conflicting and unresolved narratives about the cause or timing of death. Families also described feelings of disempowerment when they were not involved in decision-making and when their wishes were not respected.
  12. Content Article
    This is part of our series of Patient Safety Spotlight interviews, where we talk to people working for patient safety about their role and what motivates them. Making Families Count is an organisation that offers practical training based on lived experience to healthcare professionals.  Rosi talks to us about how MFC training benefits patient safety and improves the way in which patients and families are involved in incident investigations. She explains how she came to be involved in MFC after the death of her son Nico and outlines the vital importance of seeing patient and family voices as equal to those of people working for healthcare organisations.
  13. Content Article
    In 1990, 10-year-old Robbie Powell died due to undiagnosed Addison’s disease. Tragically, his death was preventable. Concerns that Robbie may have had Addison’s disease had been raised following a previous hospital admission and a diagnostic test requested, but this was not followed up or shared with his parents, Will and Diane. In the two weeks before Robbie died, Robbie was seen by five GPs on seven occasions, but his parents were consistently told that there was nothing seriously wrong with their son. Robbie’s father Will has worked for decades to uncover why his son died and how the doctors and organisations involved responded following Robbie’s death. In this long-read interview, Will describes the events that led to Robbie’s death and his subsequent fight for justice, including his role in the successful campaign which resulted in organisational legal duty of candour. He talks about the devastating impact that having the truth withheld continues to have on his family and other families. Will then outlines what needs to be done to better protect families and ensure they get the full truth when a child dies due to avoidable harm. Please note: readers may find the following content distressing.
  14. Content Article
    In this Byline Times article, the family of 18 year-old Mollie McAinsh describe her treatment in an NHS hospital after they sought help for her life-limiting ME. Millie developed the condition after a viral illness in 2019 and became increasingly unwell. When she was no longer able to feed herself, she was admitted to the Royal Lancaster Infirmary, where her family believed she would have a feeding tube fitted and then be sent home. However, while in hospital her mother was banned from visiting and Millie was sectioned under the Mental Health Act. The article looks at the issues facing people with severe ME and examines the history of how the illness has been perceived, which many believe has resulted in the wrong treatment being offered to ME patients.
  15. Content Article
    This is part of our series of Patient Safety Spotlight interviews, where we talk to people working for patient safety about their role and what motivates them. Mark talks to us about his role as a National Patient Safety Partner (PSP). He explains the important role that PSPs play at national, regional and local levels of the healthcare system and identifies key opportunities and challenges they face in bringing the voice of patients and families at a strategic level. He also highlights the challenge of implementing the Patient Safety Incident Response Framework (PSIRF) across a diverse range of providers and the complexities arising where PSIRF interfaces with systems and processes outside of the NHS.
  16. Content Article
    Carolyn Cleveland has delivered training on empathy and compassion to healthcare organisations for many years. In this interview, she describes how she came to develop her training approach and outlines how creating a psychologically space environment for individuals to engage with the practice of empathy contributes to safer organisational cultures.
  17. Content Article
    Children being subjected to lethal medical experiments sounds like the plot of a dystopian horror film. Yet that is exactly what happened in the UK in the 1970s and 80s. New documents seen last week by the BBC reveal the extent to which children with haemophilia and other blood clotting disorders were enrolled in clinical trials, often without their parents’ consent. Most of them were infected with HIV or hepatitis C as a result of being treated with blood products that doctors knew could kill them. At one boarding school for boys with haemophilia used by the doctors conducting these trials, Treloar College in Hampshire, 75 out of the 122 pupils who attended between 1974 and 1987 have died as a result of their HIV or hepatitis C infections. The independent inquiry on the contaminated blood scandal estimated that 1,250 people contracted both HIV and hepatitis C as a result of these agents, and between 2,400 and 5,000 people hepatitis C alone. Others contracted these viruses after receiving blood transfusions following surgery or childbirth; it is thought that up to 100 people were infected with HIV this way, and 27,000 people with hepatitis C. Around 2,900 people have died so far. One gets a sense of the horrific trauma the state inflicted on people by reading the evidence those affected gave the inquiry.
  18. Content Article
    In this anonymous blog, a member of NHS staff talks about their experience promoting digital storytelling to help staff members and the wider trust learn from patients’ perspectives on incidents of harm. They describe the conflicting pressures of leaders’ concerns about how these stories might affect the Trust's reputation and the need to be transparent with patients and staff.
  19. Content Article
    We know from several reports, reviews, and inquiries over recent years that the patient and family voice has not been heard. These voices are essential to learning and improvement because of their unique insight into how care is delivered. To improve safety we must understand its reality as experienced by patients. In a blog for the Patient Safety Commissioner website, Rosie Benneyworth, interim chief executive officer of the Health Services Safety Investigations Body (HSSIB), explains how HSSIB involves families in its investigations.
  20. News Article
    Thousands of vulnerable children questioning their gender identity have been let down by the NHS providing unproven treatments and by the “toxicity” of the trans debate, a landmark report has found. The UK’s only NHS gender identity development service used puberty blockers and cross-sex hormones, which masculinise or feminise people’s appearances, despite “remarkably weak evidence” that they improve the wellbeing of young people and concern they may harm health, Dr Hilary Cass said. Cass, a leading consultant paediatrician, stressed that her findings were not intended to undermine the validity of trans identities or challenge people’s right to transition, but rather to improve the care of the fast-growing number of children and young people with gender-related distress. But she said this care was made even more difficult to provide by the polarised public debate, and the way in which opposing sides had “pointed to research to justify a position, regardless of the quality of the studies”. “There are few other areas of healthcare where professionals are so afraid to openly discuss their views, where people are vilified on social media, and where name-calling echoes the worst bullying behaviour. This must stop.” Read full story Source: The Guardian, 10 April 2024
  21. Content Article
    Parkinson’s is the fastest growing neurological condition in the world. It can affect young or old, and in the UK, around 145,000 people are living with the condition. With population growth and ageing, this figure is estimated to increase by 20%, within the next ten years. At the moment, there is no cure for Parkinson’s, but medication plays a vital role in managing symptoms and preventing deterioration. People with Parkinson’s face a number of specific patient safety issues when accessing healthcare including communication difficulties and risks associated with medication delays. In this blog, Patient Safety Learning has pulled together 11 useful resources about Parkinson’s shared on the hub. They include guidance for patients and their families about hospital stays and medication, and awareness-raising resources for healthcare professionals about the patient safety issues people with Parkinson’s face.
  22. Content Article
    Richard von Abendorff, an outgoing member of the Advisory Panel of the Healthcare Safety Investigation Branch (HSIB), has written an open letter to incoming Directors on what the new Health Services Safety Investigations Body (HSSIB) needs to address urgently and openly to become an exemplary investigatory safety learning service and, more vitally, how it must not contribute to compounded harm to patients and families. The full letter is attached at the end of this page.
  23. News Article
    Families have been told they will have to prove liability for the harm caused to mothers and children at East Kent Hospitals University Foundation Trust before getting compensation. This is despite the inquiry having examined each case in detail and concluding 45 babies could have survived, while 12 who sustained brain damage could have had a different outcome. It also determined 23 women who either died or suffered injuries might have had better outcomes had care been given to “nationally recognised” standards. However, NHS Resolution – which handles claims for clinical negligence – now says families must prove causation and a breach of duty of care before any compensation can be made. This stipulation has been made even in cases where the inquiry found different treatment would have been reasonably expected to make a difference to the outcome. The investigation into the trust’s maternity care led by Bill Kirkup reported 18 months ago. Speaking to HSJ, its author said: “I am disappointed that East Kent families are facing these problems after everything that has happened to them. Of course, it is true that the independent investigation panel was not in a position to rule on negligence, but we did provide a robust clinical assessment of each case. “I would have hoped that this could be taken into account in deciding to offer early settlement instead of a protracted dispute. It seems sad that a more compassionate approach has not been adopted.” Read full story (paywalled) Source: HSJ, 2 April 2024
  24. Content Article
    Medical errors happen all the time. They can be overlooked or they can lead to big lawsuits and settlements. But what they rarely lead to is an apology. However, increasingly, patients, families and healthcare professionals, are calling for a new approach, one that acknowledges the lasting damage that comes from a failure to address medical mistakes. In this report for US media company NPR, a Naomi and Jeff tell their story of losing their daughter Thalia to medical error following planned surgery. They report that concerns they and Thalia raised about their breathing were ignored by healthcare professionals, and Thalia died after her brain was starved of oxygen. The hospital didn't give an explanation or apology for Thalia's death.
  25. Content Article
    This leaflet produced by East London NHS Foundation Trust (ELFT) explains the Patient Safety Incident Response Framework (PSIRF) to patients and families, outlining the aims of PSIRF and what they can expect from the process.
×
×
  • Create New...