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Showing results for tags 'Patient / family involvement'.
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Content ArticlePeople with a learning disability must be involved in all decisions about their health, and be in control over these choices. Some of the barriers to equal access to healthcare faced by people with a learning disability are: Lack of information that is easy to understand. ‘Diagnostic overshadowing’ - when signs and symptoms are mistakenly attributed to the person’s learning disability. Family carers and others who know the person well are not listened to when they are often able to describe changes in the person in a way that will aid diagnosis. A hospital might assume that the person has 24-hour support, when in fact they only get a few hours’ support a week and will need some extra help to follow the post-discharge treatment plan.
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Content Article
MacIntyres Families Podcast: Jim, a learning disability nurse
Claire Cox posted an article in Learning disabilities
In this episode of the 'MacIntyre Families Podcast' Jim Blair, a leading Learning Disability Nurse, Health Advisor at the British Institute of Learning Disabilities and Associate Professor at Kingston and St George's Universities answers questions submitted by the people Mcintyre support, their families and staff. Jim has over two decades of experience working as a learning disability nurse and is passionate about ensuring everyone with a learning disability is heard and involved in decisions about their own lives. -
News ArticleAcross the country there have been reports of “do not resuscitate” (DNR) orders being imposed on patients with no consultation, as is their legal right, or after a few minutes on the phone as part of a blanket process. Laurence Carr, a former detective chief superintendent for Merseyside Police, is still angry over the actions of doctors at Warrington Hospital who imposed an unlawful “do not resuscitate” order on his sister, Maria, aged 64. She has mental health problems and lacks the capacity to be consulted or make decisions and has been living in a care home for 20 years. As her main relative, Mr Carr found out about the notice on her records only when she was discharged to a different hospital a week later. Maria had been admitted for a urinary tract infection at the end of March. Although she has diabetes and an infection on her leg her condition was not life threatening. Mr Carr said: “My sister has no capacity to effectively be consulted due to her mental illness and would not understand if they did try to explain, so I was furious that I had not been consulted." He later learnt that the reason given by the hospital for imposing the DNR was "multiple comorbitidies". In a statement, Warrington and Halton Teaching Hospitals Foundation Trust said it was fully aware of the law, which was reflected in its policies and regular training. It said: “We did not follow our own policy in this case and have the requisite discussions with the family. The template form which was completed in this case indicates that discussion with the family was ‘awaiting’. Regretfully due to human error this did not occur." Mr Carr and his sister are not alone. National charity Turning Point said it had learnt of 19 inappropriate DNARs from families, while Learning Disability England said almost one-fifth of its members had reported DNARs placed in people’s medical records without consultation during March and April. Read full story Source: The Independent, 14 July 2020
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Content ArticleInvestigation of a complaint against the Belfast Health and Social Care Trust A Trust’s failure to perform an examination of a patient on admission to hospital meant he was not assessed by medical staff against this baseline during his time on the ward.
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News ArticleA woman whose father died in a care home has launched a judicial review case in the High Court over the government’s “litany of failures” in protecting the vulnerable elderly residents who were most at risk from COVID-19. Cathy Gardner accuses England’s health and social care secretary, Matt Hancock, NHS England, and Public Health England of acting unlawfully in breaching statutory duties to safeguard health and obligations under the European Convention on Human Rights, including the right to life. Her father, Michael Gibson, who had Alzheimer’s disease, died aged 88 of probable COVID-19 related causes on 3 April at Cherwood House Care Centre, near Bicester, Oxfordshire. She claims that before his death the care home had been pressured into taking a hospital patient who had tested positive for the virus but had not had a raised temperature for about 72 hours. “I am appalled that Matt Hancock can give the impression that the government has sought to cast a protective ring over elderly residents of care homes, and right from the start,” Gardner said. “The truth is that there has been at best a casual approach to protecting the residents of care homes. At worst the government has adopted a policy that has caused the death of the most vulnerable in our society.” Read full story Source: BMJ, 15 June 2020
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Content ArticleThe call for meaningful patient and family engagement in healthcare and research is gaining impetus. Healthcare institutions and research funding agencies increasingly encourage clinicians and researchers to work actively with patients and their families to advance clinical care and research. Engagement is increasingly mandated by healthcare organizations and is becoming a prerequisite for research funding. In this article, Burns et al. review the rationale and the current state of patient and family engagement in patient care and research in the ICU. The authors identify opportunities to strengthen engagement in patient care by promoting greater patient and family involvement in care delivery and supporting their participation in shared decision-making. They also identify challenges related to patient willingness to engage, barriers to participation, participant risks, and participant expectations. To advance engagement, clinicians and researchers can develop the science behind engagement in the ICU context and demonstrate its impact on patient- and process-related outcomes. In addition, the authors provide practical guidance on how to engage, highlight features of successful engagement strategies, and identify areas for future research. At present, enormous opportunities remain to enhance engagement across the continuum of ICU care and research.
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Content ArticleOn 24 July 2017, the long-running, deeply tragic and emotionally fraught case of Charlie Gard reached its sad conclusion. Following further medical assessment of the infant, Charlie’s parents and doctors finally reached agreement that continuing medical treatment was not in Charlie’s best interests. Life support was subsequently withdrawn and Charlie died on 28 July 2017. This paper from Dominic Wilkinson and Julian Savulescu summarises the case and looks at the key factual and ethical questions arising from the Charlie Gard case, and parents’ role in decision-making for children.
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Content ArticlePatient and family involvement is high on the international quality and safety agenda. This paper, published in the International Journal for Quality in Health Care, considers possible ways of involving families in investigations of fatal adverse events and how their greater participation might improve the quality of investigations. There is limited guidance and research on how to constitute effective involvement. There is a need for co-designing the investigation process, explicitly agreeing the family’s level of involvement, supporting and preparing the family, providing easily accessible user-friendly language and using different methods of involvement (e.g. individual interviews, focus group interviews and questionnaires), depending on the family’s needs.
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Content ArticleA learning disabilities service in Leicester found that experience based co-design (EBCD) was the ideal way to bring together users, families and staff to share experiences of care and design and implement change. Leicestershire Partnership NHS Trust used co-design to improve the way they cared for patients with learning disabilities. In a series of videos, Jane Parr, from the My Care, My Voice project at Leicestershire Partnership NHS Trust, shares her reflections about how the project used Patient Experience programme methodologies to improve communication with patients with learning disabilities. Find out more about EBCD
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Content ArticleAfter her infant son suffered due to a succession of medical errors, Sue worked tirelessly to prevent this from happening to others, starting by writing letters to the health care regulatory bodies until she and a group of mothers had formed a nonprofit and put out guidelines for the regulatory bodies to follow. In the midst of all of this, Sue’s husband was misdiagnosed as having a benign tumor, when it was later discovered to be a malignant sarcoma. With this she redoubled her efforts to lead us to a safer health system.
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Content ArticleIn this episode of VISION ZERO Podcast, Dr Abdulealah Alhawsawi interviews Susan Sheridan, a family member of two medical error victims and a global patient safety advocate. In this podcast they explore how we can prevent such medical errors and harm from happening again and the importance of patient / family empowerment.
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Content ArticleCall 4 Concern is a patient safety initiative enabling patients and families to call for immediate help and advice when they feel concerned that they are not receiving adequate clinical attention. Here is the Royal Berkshire NHS Foundation Trust's leaflets for adults and children. You may also be interested in: NHS Mid and South Essex's 'We're Listening' leaflet
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Content ArticleThis survey from Kopecky et al. assessed the in-hospital needs of patients diagnosed with autism spectrum disorders (ASDs).
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Content ArticleThis national learning report from the Healthcare Safety Investigation Branch (HSIB) will highlight the themes emerging from their contact with families during their patient safety investigations. It is due to be published in spring 2020. HSIB's national learning reports describe common themes and findings that come out of their national investigation programme and their maternity investigation programme. The information in these reports is used to inform future HSIB investigations or programmes of work.
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Content ArticleThis white paper explores the significance of safety strategies in healthcare settings and how these practices influence the patient and clinician experience. The Experience of Safety in Healthcare: A Call to Expand Perceptions and Solutions, reflects on the integrated nature of safety and service and how they interact to create the overall experience of patients, families and clinicians.
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Content ArticleThe Learning Disabilities Mortality Review (LeDeR) Programme is a world-first. It is the first national programme of its kind aimed at making improvements to the lives of people with learning disabilities. The University of Bristol is one of the partners in the programme, which is funded and run by NHS England. Reviews of deaths are being carried out with a view to improve the standard and quality of care for people with learning disabilities. People with learning disabilities, their families and carers have been central to developing and delivering the programme. Further information and useful resources can be found on the University of Bristol's website.
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Content Article
AvMA: Just culture
Patient Safety Learning posted an article in Culture
“Just culture” is rightly, a much-used phrase in patient safety and a major theme in the patient safety strategy for England and all the UK countries. However, there is no single definition of ‘just culture’ and most discussion of it is limited to the issue of being fair to healthcare staff. This is vitally important, which is why we advised on and endorsed the NHS Resolution Being Fair guidance and NHS Improvement’s Just Culture Guide. However, AvMA and many of the stakeholders believe that we need a nationally agreed definition that places equal emphasis on being fair to patients and families, and which covers the whole system, from policy formulation to the delivery of healthcare and what happens when harm occurs. -
Content ArticlePatient experience data has long been used as a measure of quality of healthcare, but there remains a gap between measurement and improvement. The focus of the study discussed in this blog, was on understanding how staff approached patient experience projects, why some struggled, and how they made sense of the tasks.
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Content ArticleThis guide, published by the American-based Agency for Healthcare Research and Quality (AHRQ) looks at how patient safety can be improved in primary care settings by engaging patients and families. It is the result of a two-year effort to develop an evidence-based collection of interventions and case studies exploring how primary care organisations and practitioners engage patients and families in improvement work and in their personal safe care. The resource includes a user's guide and is accompanied by a deep environmental scan that informed the development of the work.
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Content ArticleA growing body of evidence suggests that patient and family engagement can improve the safety and quality of care. We now know that effective engagement leads to better health outcomes and increased patient satisfaction. Yet many organizations committed to including patients in their work — health care providers, government agencies, and others — find it challenging to do so consistently and successfully. Many health care systems have committed to patient engagement in the doctor’s office, but are unsure how to incorporate it into program and policy development.
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Content ArticleThis conceptual article published in The Joint Commission Journal on Quality and Patient Safety describes the barriers and facilitators of adopting, implementing, and sustaining the Patient and Family Advisory Councils on Quality and Safety (PFACQS) model across a large, geographically diffuse health system. Successful strategies that emerged include active board engagement, co-creation and mentorship by experienced patient advocates to support enhanced engagement by local PFACQS community members, and clear alignment with and line of sight on organisational quality and safety goals. It concludes that implementing a robust network of PFACQS focused on improving quality and patient safety requires leadership commitment to transparency, as well as mutual respect and trust. Establishing clear guidelines, structures, and processes supports early adoption. Openness to continuous improvement and adaptations are important to programme success and contribute to programme sustainability.
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News Article
Review launched into East Kent NHS trust after baby deaths
Patient Safety Learning posted a news article in News
The government has announced an independent review into maternity services at an NHS trust where a number of babies have died. “Immediate actions” have also been promised and an independent clinical team has been placed “at the heart” of East Kent Hospitals University NHS Foundation Trust. It comes amid reports that at least seven preventable baby deaths may have occurred at the trust since 2016, including that of Harry Richford. Harry died seven days after his emergency delivery in a “wholly avoidable” tragedy, contributed to by neglect, in November 2017, an inquest found. Speaking in the House of Commons, the health minister Nadine Dorries confirmed the independent review would be carried out by Dr Bill Kirkup, who led the investigation into serious maternity failings at Morecambe Bay. It will look at preventable and avoidable deaths of newborns to ensure the trust learns lessons from each case and will put in place appropriate processes to safeguard families. The review is expected to begin shortly and work in partnership with affected families. Read full story Source: 13 February 2020 -
Content ArticleSarah O'Neill, Family Liaison Manager, Solent NHS Trust, presented at the recent Bevan Brittan seminar on the role of family liaison. The presentation slides are attached.
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Content ArticlePresentation from Joanna Lloyd, Bevan Brittan, on incident investigations.
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Content ArticleIn this chapter, Wilkinson and Savulescu describe the background to the Charlie Gard case and how it played out over the first half of 2017. They will look at how decisions about medical treatment are normally made and the role of the court in decisions. They outline some of the important ethical questions raised by the Gard case.
