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Found 275 results
  1. Content Article
    In this Guardian interview, Rob Behrens, the outgoing NHS Ombudsman for England, says that too much unsafe care is still happening in the health service and that a culture of cover up makes it hard for bereaved families to find out the truth about their loved one's death. He describes the NHS as a complex institution run by mostly excellent, committed staff that is beset by cultural issues and a focus on limiting reputational damage at the expense of transparency and fair treatment of staff who speak up.
  2. Content Article
    In this video story, Gaylene tells the story of her hospital stay in 1987 when she was very seriously ill—so ill that her doctors thought she would die. She describes how her wishes not to have her family visit when she looked so unwell were not listened to, which resulted in a traumatic visit for Gaylene, her husband and her four children under the age of 5. She highlights the ongoing impact the event had on her family and the importance of good communication between patients and healthcare staff.
  3. Content Article
    The combination of emerging patient safety threats and the growing amount of published patient safety research, patient safety resources and accrediting body standards makes it increasingly difficult to prioritise adopting and implementing evidence-based practices. The US Agency for Healthcare Research and Quality's (AHRQ’s) fourth iteration of Making Healthcare Safer intends to address this issue by publishing evidence-based reviews of patient safety practices and topics as they are completed. This intentional release of updated reviews will aid healthcare organisation leaders in prioritising implementation of evidence-based practices in a timelier way. The report will also help researchers identify where more research is needed and assist policymakers in understanding which patient safety practices have the supporting evidence for promotion.
  4. News Article
    Alice and Lewis Jones were forced to watch their 18-month-old baby die in front of them after a failure by a scandal-hit NHS trust left him with a “catastrophic brain injury” following his birth. Their son Ronnie was one of hundreds of babies who have died following errors by Shrewsbury and Telford Hospital, where the largest NHS maternity scandal to date was previously uncovered by The Independent. Two years later, Mr and Mrs Jones are calling for the Supreme Court to overturn a controversial decision in February which ruled bereaved relatives could not claim compensation over the psychological impact of seeing a loved one die, even if it was caused by medical negligence. It comes after the trust admitted to failings in a letter to the parents’ lawyers. Ronnie’s birth in 2020 fell outside of the Ockenden review and his parents have warned it showed failures were still occurring despite warnings made during the inquiry. Within the Ockenden inquiry, multiple cases of staff failing to recognise and act upon CTG training were found, and the final report recommended all hospitals have systems to ensure staff are trained and up to date in CTG and emergency skills. The report also said the NHS should make CTG training mandatory and that clinicians must not work in labour wards or provide childbirth care without it. A CTG measures a baby’s heart and monitors conditions in the uterus and is an important measure before birth and during labour to observe the baby for any signs of distress. Ms Jones said: “We knew about the Ockenden review, but everything at Telford was new and so I think we just assumed that lessons had been learned, the same thing wouldn’t happen to us.” Ronnie’s parents are campaigning to reverse the Supreme Court which ruled that “secondary victims” – including parents who are not directly harmed by the birth – are not eligible to bring claims for psychiatric injury following medical negligence. Read full story Source: The Independent, 14 March 2024
  5. Event
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    For the first time, Making Families Count are collaborating with SOFT UK, a charity that supports families caring for children with a rare and life-limiting genetic condition. Speakers will be drawn from the families and healthcare professionals who are part of the SOFT UK community, sharing their stories and lived experiences and giving suggestions that may help you support the families you work with. The Department of Health UK Strategy for Rare Diseases (DHSSPS 2020) estimates that rare diseases, including genetic conditions, affect the lives of over 3 million people in the UK. Of these, a significant proportion are children with genetic life-limiting and life-threatening conditions. The parents of many of these children often talk of the challenges of parenting a disabled child and their sometimes stressful interaction with healthcare professionals. This webinar will give you greater insight into the lived experience of families caring for a child with complex needs. We will explore their day-to-day challenges in dealing with the anxiety of hospital admissions, difficulties of communicating with and being heard by healthcare professionals, the challenge of balancing the needs of the whole family, and the stressful burden upon parents over time. This webinar is for… Paediatric nurses Paediatric / Community nursing teams Complex Care Team (Paediatrics) Respite Care (Paediatrics) Play Specialists Hospital at Home teams (Paediatrics) Paediatric / Children’s Occupational Therapists Paediatric / Children’s Physiotherapists SALT Child Development Centre staff Paediatric Outreach Teams Presenters: Dr Alison Pearson, a post-doctoral research fellow in education, well-being, and resilience and mum to 13-year-old Isabel, who has full Edwards’ syndrome. She draws upon her research and her family’s lived experience to talk about the challenges of hospital acute admissions for Isabel and the impact on her whole family. Una McFaddyn, a recently retired Consultant Paediatrician with a special interest in respiratory and neonatal paediatrics. Una has a long-standing interest in children’s rights and has worked with various projects involving children and parents as partners in care. She will provide the perspective of a healthcare professional on supporting families and their children. You will also hear other voices from the SOFT UK community of families via several films and audio clips, bringing to life the experience of a wide range of parents who care for children with complex care needs. Learning outcomes: At the end of this webinar, you will have an appreciation of the challenges facing parents who care for a child with complex needs – specifically the anxiety of acute admissions to hospital, communication issues with healthcare staff, and the wider impact upon families. You will be able to use that deeper understanding to shape the care and support you can offer these families in your own practice. Register
  6. Event
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    This webinar examines why families make complaints and offers a best practice guide on how to involve the patient/family and how staff can be guided by them and their observations. It also looks at how to achieve timely sharing of information and how to ensure good communication with the patient/family. In addition, you will learn how to disseminate the complaint investigation findings in your organisation and how to embed changes. The speakers include two family members (one of whom is also an NHS staff member). They are joined by highly experienced patient safety and complaints staff, who will share their knowledge, experience, and ideas regarding how complaints are dealt with and how this could be improved. This webinar has been developed in line with the national NHS Patient Safety Standards introduced as part of the NHS Patient Safety Incident Response Framework (PSIRF) and the “Engaging and involving patients, families and staff following a patient safety incident” PSIRF supporting guidance. This webinar is for… Patient Safety Leads / Manager / Advisors Complaints staff, PALS staff, Patient and Carer Experience Leads Family Liaison Service Teams PSIRF Implementation Teams Governance Leads / Managers / Directors Clinical Leads in Safety & Quality Presenters: Jo Collins (Deputy Head of Patient and Carer Experience, AWP), Derek Richford, Joanne Simm (NHS Matron), and Jan Fowler (NHS Executive Director retired). Learning outcomes: Delegates will gain a better understanding and develop skills in the following areas: Increasing confidence when dealing with the challenges, opportunities, and benefits of engaging positively with families when they raise a complaint. Reinforcing why positively engaging families achieves better investigation outcomes for everyone. Examining why families make complaints and what you can do to put this right for them. How to involve families in investigations following a complaint, and how to be guided by the patient/family’s observations. How to embed learning from complaints through promoting a learning culture that can lead to effective organisational change. All participants will receive the programme and background information about Making Families Count in advance. Everyone who attends will also receive a resource pack (including a shareable PDF guide and the speakers’ slides) and a certificate of attendance. Register
  7. Content Article
    Lewis Chilcott was 23 years old when he died at Royal Sussex County Hospital in Brighton. In this blog, his father Simon describes what happened to Lewis and how his family was treated by the hospital following Lewis’s death. Simon continues to call for greater transparency in the investigation process and improvements to the way hospitals engage with bereaved families.
  8. Content Article
    In June 2023, the London Assembly Health Committee launched an investigation into eating disorders in London, following reports that referrals for eating disorder services have increased in recent years and performance against waiting time standards dropped during the COVID-19 pandemic. The aim of this investigation was to understand what is driving the increase in referrals, how services are responding to this additional demand and to explore people’s access to, experiences of, and outcomes from treatment services. The Committee held two formal meetings with expert guests, including clinicians, people with experience of living with an eating disorder, and representatives from the Greater London Authority and NHS England. It also held a private session with people with lived experience of being affected by an eating disorder and received 112 responses to its survey from those with experience of an eating disorder, supporting a family member or friend with an eating disorder or those working with those experiencing an eating disorder. 
  9. Content Article
    This systematic review of qualitative evidence aimed to improve understanding of the processes and outcomes of redress and reconciliation following a life-changing event, from the perspectives of individuals experiencing the event and their families. The authors searched six bibliographic databases for primary qualitative evidence exploring the views of individuals who have experienced a life-changing event, and/or their family or carers, of redress or reconciliation processes. This was supplemented with targeted database searches, forward and backward citation chasing and searches of Google Scholar and relevant websites. The review identified three themes identified by patients and families that represent procedural elements required to support a fair and objective process: transparency, person-centred and trustworthy. A further theme identified—restorative justice—is about how a fair process feels to those who have experienced a life-changing event. It highlights the importance of an empathic relationship between the different parties involved in the process and the significance of being able to engage in meaningful action. Theses findings provide insights on how to conduct a fair review into instances of medical harm.
  10. Content Article
    Spina bifida develops early in the embryonic stage of pregnancy but is not usually detected until the midterm (20 week) ultrasound scan.  Shine conducted a survey to assess the antenatal care experiences of parents to children with spina bifida. Volunteers were recruited via social media and 71 eligible (UK-based) responses were received, revealing numerous elements of antenatal care in need of significant improvement. Shine have published the findings and recommendations for improving antenatal diagnosis and care for spina bifida. 
  11. Content Article
    Eating Disorders Awareness Week takes place 26 February - 3 March 2024 Eating disorders are complex mental health conditions that affect an estimated 1.25 million people in the UK. There are many unhelpful myths about who eating disorders affect, what the symptoms are and how to support people in recovery. Alongside a current lack of appropriately trained staff and capacity in mental health services, this can make it challenging for people with eating disorders to access the help and support they need. Patient Safety Learning has pulled together ten useful resources shared on the hub to help healthcare professionals, friends and family support people with eating disorders. They include awareness-raising articles, practical tips for patients and their loved ones, and clinical guidance for primary, secondary and mental health providers.
  12. Content Article
    Incorporating parental values in complex medical decisions for young children is important but challenging. This review in The Lancet Child & Adolescent Health explores what it means to incorporate parental values in complex paediatric and perinatal decisions. It provides a narrative overview of the paediatric, ethics and medical decision-making literature, focusing on value-based and ethically complex decisions for children who are too young to express their own preferences. 
  13. News Article
    Doctors tore down posters offering patients a secondary care review if they were worried about their condition in hospital, the mother of a teenager who died of sepsis claimed. Merope Mills, who has campaigned for a similar policy called “Martha’s Rule” named after her 13-year-old daughter, claimed a small minority of “bad actors” in hospitals risked slowing down the initiative. It comes as NHS England announced 100 hospitals with critical care units will be invited to sign up for the policy, which will be rolled out from April this year. Martha died from sepsis in 2021 after staff at King’s College Hospital failed to move her to intensive care despite her family warning them her condition had deteriorated. “When something similar to Martha’s Rule was introduced to Royal Berkshire Hospital, doctors actually pulled down the posters advertising the service to patients because they hated the idea of giving patients this kind of power,” Mrs Mills told the Today Programme. “A small minority of bad actors whose arrogance, complacency or pride stops them listening and doing the right thing and that is what we are trying to challenge with Martha’s Rule. There are pockets of damaging cultures in hospitals around the country. Sometimes it is not a whole hospital, sometimes it is just a ward in a hospital, sometimes it is just a particular individual on a ward in a hospital.” Read full story Source: The Independent, 21 February 2024
  14. Content Article
    NHS England’s Worry and Concern Collaborative is looking into how hospitals can make sure the worries and concerns of patients, their family and friends about a patient in hospital are taken into account by doctors, nurses and other health professionals.  This webinar, hosted by the Patients Association explored: The role of the National Worry and Concern Collaborative and its seven pilot sites the experiences of both clinicians and patients how these services need to be designed and delivered.
  15. Content Article
    The National Institute for Health Research (NIHR) awarded researchers from The Open University (OU), Manchester Metropolitan University, the Universities of Oxford, Glasgow and Edinburgh more than £141,000 to expand their world-first study of witnesses’ experience of giving evidence during health and social care workers’ professional conduct hearings. The project, Witness to harm, holding to account: Improving patient, family and colleague witnesses’ experiences of Fitness to Practise proceedings, mainly focuses on cases where there are allegations of harm. This focus should help regulators and employers identify potential improvements to support witnesses whose role in giving evidence is crucial to a fair hearing.
  16. Content Article
    A common theme of recent international inquiries is that well intentioned investigations often make things worse. Harm is compounded when we fail to listen, validate and respond to the rights and needs of all the people involved. When lengthy processes do not result in meaningful action, suffering can be exacerbated and result in further damage to wellbeing, relationships, and trust. At its worst, compounded harm produces undesirable outcomes such as a community believing an essential service is unsafe, or a clinician leaving their profession. In considering how best to respond, it is important to remember that health systems are comprised of people and relationships, as well as rules and processes. Once we think about safety as a human and relational approach, rather than one that only seeks to lessen risk and enforce regulation, we can consider how to best proceed. Whether an act is intentional or not, a dignifying approach involves working together to repair the harm involved. Restorative responses are ideal for this purpose, as Jo Wailling, Co-chair of the National Collaborative for Restorative Initiatives in Health Aotearoa New Zealand, explains in this blog on the Patient Safety Commissioner website.
  17. Content Article
    The Academy of Medical Sciences has released a stark report highlighting wide-ranging evidence of declining health among children under five in the UK and calls on policymakers to take urgent action to address the situation.It warns Government that major health issues like infant mortality, obesity and tooth decay are not only damaging the nation’s youngest citizens and their future, but also its economic prosperity, with the cost of inaction estimated to be at least £16 billion a year. In recent years, progress on child health in the UK has stalled. Infant survival rates are worse than in 60% of similar countries and the number of children living in extreme poverty tripled between 2019 and 2022. Demand for children’s mental health services surge and over a fifth of five-year-old children are overweight or obese, with those living in the most deprived areas twice as likely to be obese than in affluent areas. One-in-four is affected by tooth decay. Vaccination rates have plunged below World Health Organization safety thresholds, threatening outbreaks. Issues such as the COVID-19 pandemic, increased cost of living and climate change compound widespread inequality and are likely to make early years health in the UK even worse. 
  18. News Article
    The NHS is failing some parents whose children die unexpectedly, a leading paediatrician has told BBC Panorama. About 50 children's deaths in the UK every year are termed as "sudden unexplained death in childhood" (SUDC). Little is known about what causes them. Gavin and Jodie's two-year-old son Addy died unexpectedly in November 2022. BBC Panorama followed the parents over nine months as they searched for answers to why their son died - and whether it could have been prevented. Even after a forensic post-mortem examination, no-one could work out why the little boy went to sleep and never woke up, so his death was categorised as SUDC. When a child dies unexpectedly, a review is held to gather information about what happened. The NHS is required to assign a key worker to help bereaved parents to navigate this process, and provide emotional support. The role of key worker can be taken by a range of practitioners and is often a specialist nurse. However, even though it is a mandatory requirement, a survey carried out by the Association of Child Death Review Professionals (ACDP) found that more than half of NHS areas in England do not have a specialist nurse to visit parents after an unexpected death. "It makes me really angry," says paediatrician Dr Joanna Garstang, the chair of the ACDP, who runs one of the few teams in England that support parents. "Bereaved families after the sudden death of a child are the most vulnerable people. And if we don't put in early support… we're setting these parents up for a lifetime of misery." Read full story Source: BBC News, 5 February 2024
  19. Content Article
    Sarah Rainey talks to Olivia Djouadi about her experience of type 1 diabetes with disordered eating (T1DE), which is thought to affect up to 40% of women and 15% of men with type 1 diabetes. People with T1DE, sometimes also called diabulimia, limit their insulin intake to control their weight, which can have life-threatening consequences. Olivia describes how the stress of living with type 1 contributed to her developing T1DE, and how when she finally received treatment and support in her 30s, she was able to deal with her disordered eating and see her health and wellbeing improve.
  20. 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.
  21. Event
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    The Patients Association and NHS England’s Worry and Concern Group is holding a webinar on pilot studies testing ways to incorporate inpatients’ views of their illness and worries and concerns in the assessment and recognition of acute illness and risk of deterioration. The webinar brings together patients and clinicians to review: The work done during the Worry and Concern pilots The experience of patients and clinicians who took part in the pilot studies How to ensure patient involvement in the design of a nationwide worry and concern programme. The panel is: John Bamford, Patient Safety Partner Kayleigh Griffiths MBE, member of National Worry and Concern Steering Group Jane Murkin, Deputy Director Safety & Improvement – Nursing, NHS England Prof Damian Roland , Honorary Professor of Paediatric Emergency Medicine, University of Leicester John Welch, Consultant Nurse, Critical Care & Critical Care Outreach, University College London Hospitals NHS Foundation Trust. Prof Roland will review experiences with the new national Paediatric Early Warning System (PEWS). The webinar is free and on Zoom. Register online
  22. 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.
  23. Content Article
    This animation was created to highlight the specific issues for people with learning disabilities in relation to psychological trauma.
  24. Content Article
    The framework has been produced to guide organisations providing residential or supported living accommodation to adults with a learning disability who may have been impacted by a trauma history. Whilst it can be difficult to assess the impact of trauma for many people with a learning disability, particularly those with a more severe/profound learning disability, it is important to recognise the possibility of the impact of psychological trauma. Providing care practices that are trauma informed, person-centred and growth promoting are less likely to be re-traumatizing for those already exposed to trauma.
  25. Content Article
    Jessie Cunnett, new CEO at the Point of Care Foundation, shares her journey of commitment to humanise healthcare through her personal and professional stories. She reflects on the importance of creating space for everyone to feel seen and heard in health and care settings.
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