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Showing results for tags 'Patient / family support'.
Found 285 results
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News Article
Government pledges better support for women who lose babies during pregnancy
Patient Safety Learning posted a news article in News
Women who lose babies during pregnancy will be able to get a certificate as an official recognition of their loss as well as better collection and storage of remains under new government plans. The government will make sure the certificate is available to anyone who requests one after experiencing any loss pre-24 weeks’ gestation. The NHS will develop and deliver a sensitive receptacle to collect baby loss remains when a person miscarries. A&Es will also have to ensure that cold storage facilities are available to receive and store remains or pregnancy tissue 24/7 so that women don’t have to resort to storing them in their home refrigerators. The new recommendations are part of the government’s response to the independent Pregnancy Loss Review. Read full story Source: The Independent, 23 July 2023 -
Content Article
A vision for improving the care and support available to families when baby loss occurs before 24 weeks' gestation. -
News Article
Covid Inquiry: Bodies were treated like toxic waste, says daughter
Patient Safety Learning posted a news article in News
The bodies of people who died with Covid were treated like "toxic waste" and families were left in shock, a bereaved woman has told the inquiry. Anna-Louise Marsh-Rees said her father Ian died "gasping for breath" after catching the virus while in hospital. Ms Marsh-Rees, who leads Covid-19 Bereaved Families for Justice Cymru, said he was "zipped away", and his belongings put in a Tesco carrier bag. Ian Marsh-Rees died after catching the virus while in hospital, aged 85. His daughter said finding information regarding his care in hospital and how he became infected was "almost like an Agatha Christie mystery". She said no GP ever suggested he might have Covid, although she now knows his discharge notes said he had been exposed to Covid. "It wasn't until we saw his notes some months later that we saw the DNA CPR (do not attempt CPR) placed on him, and this was without consultation with us," she said. "It kind of haunts us all that… people used to say 'well they're in the right place' when they go to hospital. I'm not sure they would say that any more," Ms Marsh-Rees said. She now wants to change the way deaths are handled by health boards. She said it was important to prepare families before and support them after the death of a loved one, from palliative care to dignity in death. Read full story Source: BBC News, 18 July 2023 -
Content ArticleNHS Resolution has launched its first eLearning module that focuses on learning from the significant avoidable harm that can occur during antenatal and postnatal care and is seen in the cases notified to its Early Notification Scheme. This free resource is designed to support clinicians working in maternity services. The module uses three illustrative case stories to immerse learners into the antenatal, intrapartum and postnatal care provided to mothers and the neonatal care provided to their babies. It aims to deepen learners' understanding of NHS Resolution’s role within the healthcare system, develop their understanding of the law of negligence as applied to clinical claims and explore how clinical decisions and actions can lead to avoidable harm. The module takes approximately two-and-a-half hours to complete and can be used as evidence of CPD hours undertaken for revalidation.
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Content ArticleThis policy explains how the Structured Judgement Review (SJR) process is implemented within Maidstone and Tunbridge Wells NHS Trust. The policy advises staff on how to undertake a mortality case record review, which documentation to use, in which circumstances an SJR is required and how the new process relates to previous systems and processes. The policy also explains how the process links to revised mortality reporting, escalation of concerns and dissemination of learning. It covers all inpatients and Emergency Department patients who die whilst in the Trust’s care, and patients who die within 30 days of discharge.
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Content ArticleImproving experiences and outcomes for children and adults who are autistic or have a learning disability, their families and carers Ask Listen Do resources are designed to: support organisations to listen, learn from and improve the experiences of children and adults who are autistic or have a learning disability, their families and carers make it easier for people, families and paid carers to give feedback, raise concerns and complain.
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Content ArticleThis opinion piece in the Journal of Eating Disorders looks at the use of the diagnosis 'terminal anorexia' and its impact on people with anorexia nervosa, their families and the healthcare professionals working with them. Alykhan Asaria offers a lived-experience perspective on how the term may cause distress and harm to patients, feeding the narrative power of an individual's eating disorder. The article also talks about how the term can remove hope from patients, families and clinicians, and how it might set a dangerous precedent in paving the way for people with other mental health conditions to be labelled 'terminal'.
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Content ArticleThis NICE guideline covers services for children, young people and adults with a learning disability (or autism and a learning disability) and behaviour that challenges. It aims to promote a lifelong approach to supporting people and their families and carers, focusing on prevention and early intervention and minimising inpatient admissions.
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Content ArticleThere have been significant developments in patient safety over the last decade. But there is a concerning disconnect between increasing activity and progress made to embed a just and learning culture across the NHS. Recognising the challenging operational context for the NHS, this report from the Parliamentary and Health Service Ombudsman (PHSO) draws on findings from their investigations. It asks what more must be done to close the gap between ambitious patient safety objectives and the reality of frontline practice. PHSO identified 22 NHS complaint investigations closed over the past three years where they found a death was – more likely that not – avoidable. It analysed these cases for common themes and conducted in-depth interviews with the families involved.
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Content ArticleAn evidence review into the scale of the prescribed drug dependence and withdrawal problem in England published by Public Health England (PHE) in 2019 called for support for patients experiencing withdrawal symptoms, including a national 24 hour helpline and associated website. These calls have since been echoed in a recent BBC Panorama episode and other media accounts, but despite the evidence reviews, media interest and public awareness, nothing has changed. This open letter to the Government published in the BMJ calls for specialist NHS services to support patients harmed by taking prescription medications. Signed by healthcare professionals, it highlights that there are still almost no NHS services to support patients who have been harmed by taking medicines as prescribed by their doctor, such as antidepressants and benzodiazepines. The signatories believe that the NHS has a clinical and moral obligation to help those who have been harmed by taking their medication as prescribed, and are urgently calling upon the UK Government to fund and implement withdrawal support services.
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News ArticleAn inquiry investigating deaths of mental health patients in Essex has been given extra powers, in a victory for campaigners. Health Secretary Steve Barclay told Parliament that the probe would be placed on a statutory footing. It means the inquiry can force witnesses to give evidence, including former staff who have previously worked for services within the county. Mr Barclay said he was committed to getting answers for the families. He told the Commons: "I hope today's announcement will come as some comfort to the brave families who have done so much to raise awareness." The Secretary of State added that under the new powers anyone refusing to give evidence could be fined. Melanie Leahy, whose son Matthew died while an inpatient at the Linden Centre in Chelmsford in 2012, is among those who have long campaigned for the inquiry to be upgraded. "Today's announcement marks the start of the next chapter in our mission to find out how our loved ones could be so badly failed by those who were meant to care for them," said Ms Leahy. "I welcome today's long overdue government announcement and I look forward to working with the inquiry team as they look to shape their terms of reference." Read full story Source: BBC News, 28 June 2023
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Content ArticleOver time and across the world, the need to be transparent with patients and families when care has not gone well is now recognised as a key element of high-quality, safe and patient-centred healthcare. However, a significant gap still persists and some organisations have yet to welcome a transparent and accountable approach, while others fail to turn these principles into reliable actions. This editorial in BMJ Quality & Safety highlights the vulnerable position patient and families are in after error disclosure and looks at how data on processes around error disclosure are key to improvement. The authors call for healthcare organisations to redouble their engagement with patients and families who have been harmed by their healthcare and use the principles of accountability, compassion and transparency to drive their response.
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Content ArticleThis report by the charity INQUEST, which provides expertise on state related deaths and their investigation to bereaved people, highlights that families are facing persistent challenges following the death of a loved one in mental health services. Based on conversations at one of INQUEST’s Family Consultation Days, the report shows that families face numerous hurdles during investigations and inquests into their loved ones’ deaths, and that processes are not delivering the change required. The Family Consultation Day heard from 14 family members who were bereaved by deaths in the care of mental health services or settings for people with learning disabilities and/or autism, and had faced or were going through inquests and investigations.
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Content Article
The Child Health Clinical Outcome Review Programme has produced this review of the barriers and facilitators in transitioning children and young people with complex chronic health conditions into adult health services. Based on data on children and young people with one of 12 complex conditions identified from a sample period between 1st October 2019 and 31st March 2021, the report concludes that there is no clear pathway for the transition from healthcare services for children and young people to adult healthcare services. The report finds that the process of transition and subsequent transfer is often fragmented, both within and across specialties, and that adult services often sit only with primary care. It argues that developmentally appropriate healthcare should be everyone’s responsibility, with adequate resources needed to allow this to happen. The Inbetweeners also calls for services to: involve young people and parent/carers in transition planning and transition to adult services improve communication and coordination between all specialties be organised to enable young people to transfer to adult services effectively, and provide strong leadership at Board and specialty level at all stages of transition and transfer. The report’s recommendations highlight areas that are suitable for regular local clinical audit and quality improvement initiatives by those providing care to this group of patients. It suggests that the results of such work should be presented at quality or governance meetings, and action plans to improve care should be shared with executive boards. -
Content ArticleIn this blog, Paul Whiteing, Chief Executive of Action Against Medical Accidents (AvMA), highlights how proposed changes to the UK legal system will affect people who have been harmed by healthcare and their families' access to justice. He describes the negative impact of legislation that would make claims less than £100,000 subject to a fixed cost regime. Paul writes, "The consequence of a fixed cost regime is that where the patient wins their case against the healthcare provider, the costs awarded will be capped at the rates set by Parliament." Related reading Read our Patient Safety Spotlight interview with Paul.
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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. Paul talks to us about how AvMA helps people who have suffered direct or indirect medical harm and to help them to seek justice, why upcoming changes to the legal system could restrict access to clinical negligence claims and the importance of compassionate engagement in improving harmed patients’ experiences of the healthcare system. -
Content ArticleLittle information is available about the effect of childhood atopic dermatitis (AD) on family function. The aim of this study was to identify the areas of family life most affected and their perceived importance. Intensive qualitative interviews with 34 families were conducted and 11 basic problem areas were identified.
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Content ArticleUnpaid 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.
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Content Article
At Patient Safety Learning we believe that sharing insights and learning is vital to improving outcomes and reducing harm. That's why we created the hub; providing a space for people to come together and share their experiences, resources and good practice examples. Dementia is an umbrella term for a number of diseases that affect the brain, with Alzheimer’s disease its most common cause. We have picked nine resources and reflections about keeping people with dementia safe in health and care settings, and when considering medication choices. -
Content ArticleA group of patients and families with experience of end-of-life care worked with researchers from the Nuffield Trust to review findings from its research investigating the effect of the pandemic on people who were receiving end-of-life care at home. This web page summarises the research findings from the perspective of patients and family.
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Content ArticleThe US Roadmap to Health Care Safety for Massachusetts sets five goals that will be reached through a sustained, collective state-wide effort among provider organisations, patients, payers, policymakers, regulators, and others.
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News Article
Thousands receive diagnosis after 60 new diseases found
Patient Safety Learning posted a news article in News
Thousands of children with severe developmental disorders have finally been given a diagnosis, in a study that found 60 new diseases. Children, and their parents, had their genetic code - or DNA - analysed in the search for answers to their condition. There are thousands of different genetic disorders. Having a diagnosis can lead to better care, help parents to decide whether to have more children, or simply provide an explanation for what is happening. The Deciphering Developmental Disorders study, conducted over 10 years in the UK and Ireland, was a collaboration between the NHS, universities and the Sanger Institute, which specialises in analysing DNA. Among the findings, researchers discovered Turnpenny-Fry syndrome. Jessica Fisher's son, Mungo - who took part in the study - was diagnosed with the syndrome. Jessica subsequently started an online support group for the syndrome, which is now made up of 36 families from around the world, including America, Brazil, Croatia and Indonesia. "It's devastating to learn that your child has a rare genetic disorder, but getting the diagnosis has been key to bringing us together," said Jessica. Read full story Source: BBC News, 13 April 2023 -
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. Lesley talks to us about how personal stories enrich our understanding of data, drive real quality improvement and remind us that healthcare is all about people. She also explains how her own personal experience drives her work to improve healthcare experiences for patients and their families. -
Content ArticleA repository of resources aimed at patients and carers which have been co-produced by the Falls and Fragility Fracture Audit Programme (FFFAP) patient and carer panel.
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EventuntilThis Westminster conference will discuss next steps for improving health outcomes for children and young people in England. Delegates will assess the future of the new network of Family Hubs, with discussion on improving the coordination and accessibility of children’s care, as well as shifting focus towards early intervention and prevention, and improving the provision of support to families. It will be an opportunity to review progress on and next steps for The best start for life: a vision for the 1,001 critical days, which looks at providing support for local authorities in addressing the needs of children and their families, and consider the future of children’s health data. Further sessions will examine measures that were included in the Plan for Patients, which sets out to improve access to children’s mental health services, and enhance funding and regulation to reduce care backlogs. Overall, areas for discussion include: Family Hubs: progress made so far in implementation - addressing challenges in the transition to the family hub service model the role of community support - delivering long-term improvements to the lives of families - improving engagement and communication with families utilising the Family Hubs to improve coordination across support services - developing and sharing best practice across local authorities. Impact of poverty and cost of living pressures: latest thinking on approaches to mitigating the impact of poverty on child development understanding the economic pressures on families - addressing their impact children’s health implementing early intervention and prevention programmes - applying lessons learnt from the Surestart programme. Developing child health services: addressing waiting times and care backlogs - returning service provision to pre-pandemic levels. next steps for regulation and funding - the role of integrated care systems in supporting local needs. Mental health support: developing the community-based offer for mental health support - enabling service coordination meeting the increased demand for services - evaluating resource allocation early years development: progress made following publication of the final Leadsom Review - acting on the recommendations - the future for health visiting and child development checks. Digital health and data sharing: opportunities and issues arising from the use and sharing of child health data - increasing the quality of NHS records to improve outcomes - faster identification of health and social concerns latest thinking on data sharing practices - evaluating digital security provisions, Register
