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Found 538 results
  1. Event
    until
    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
  2. Event
    until
    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
  3. 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. 
  4. Content Article
    Martha's rule stipulates the right of patients and their families to escalate care as a way to improve safety while in hospital. This article analyses the possible impact of the proposed policy through the lens of a behaviour change framework and explores new opportunities presented by the implementation of Martha's rule.
  5. Content Article
    This is my story, as a bereaved mother, about lessons I have learnt following the unexpected death of my previously well 25-year-old daughter Gaia in University College Hospital London (UCLH) in July 2021. I have written 11 patient safety lessons in the hope this helps other families be more assertive if they have a critically sick relative in hospital. Believe me, you must be pushy to be allowed into a hospital ward, even more so ITU. I went to visit my critically sick daughter at around 10am on a Sunday morning, but was not allowed on to the ward. A senior nurse told me to GO HOME using the 'Covid' excuse. I was shut out from the bedside of my critically ill only child. I have set up TruthForGaia.com to share learnings more widely. Please take a look. I hope sharing this may contribute to reducing avoidable deaths from brain conditions which can be only too easily assumed to be intoxication, especially on weekends. I believe raised intracranial pressure (high pressure in the skull) needs more awareness and training. When will UCLH hold a medical grand round on my daughter's case?
  6. Event
    In the dynamic landscape of healthcare, the unexpected deterioration of a hospital patient can present daunting challenges for both medical professionals and families alike. It is during these critical moments that the significance of patient rescue becomes abundantly clear. From the perspective of physicians, nurses, and other healthcare providers, swift and effective intervention is imperative to ensure the best possible outcome. However, the role of the patient's family in such situations is equally crucial. Empowered with knowledge and equipped with effective communication strategies, families can play a pivotal role in advocating for their loved ones and contributing to the overall success of rescue efforts. The World Patients Alliance is pleased to organise a webinar titled “The Deteriorating Patient: When a hospital patient unexpectedly goes downhill, what can families do?" Join the webinar and delve into the importance of patient rescue from the physician's perspective, explore real-life patient stories, introduce Martha's Rule as a guiding principle, analyse the current state of rapid response protocols, and discuss the critical role of families in effectively communicating concerns. Register
  7. 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. 
  8. Content Article
    This US study looked at how critical care doctors approach shared decision-making with Black compared with White caregivers of critically ill patients. The authors found that racial disparities exist in critical care clinicians' approaches to shared decision-making and suggest potential areas for future interventions aimed at promoting equity.
  9. News Article
    It is still unclear how unauthorised metal parts came to be implanted in a number of the 19 children with spina bifida who suffered significant complications after spinal surgery. But it has emerged that one child died and 18 others suffered a range of complications after surgery at Temple Street Children’s Hospital – with several needing further surgery, including the removal of metal parts which were not authorised for use. Parents of the children undergoing complex surgery were left distraught by the disclosures that emerged yesterday, after campaigning for years while the young patients in need of operations deteriorated on waiting lists. Gerry Maguire, of Spina Bifida Hydrocephalus Ireland, said “absolute horror is being visited on parents and their advocates”. He condemned as disturbing the information which is “being drip-fed to his group and “more alarmingly the families concerned”. One mother expressed concern about further delays in surgery and said children are too complex to be taken for care abroad. Read full story Source: Irish Independent, 19 September 2023
  10. Content Article
    On 8 February 2024, Ombudsman, Rob Behrens and Patient Safety Commissioner, Henrietta Hughes, wrote a joint letter to government. Both have regulatory roles to play in improving patient safety and both are struggling to gain headway with the recalcitrant NHS. Supposedly independent of government, this correspondence shows they are in fact totally dependent on government, due to their limited powers writes Della Reynolds in this blog.
  11. News Article
    Mothers of babies who died or suffered brain damage from a Group B Strep (GBS) infection say routine screening is needed. Oliver Plumb, from the charity Group B Strep Support, said it was a "small number of babies" exposed to the bacteria that developed a serious and potentially fatal infection. He said around 800 babies a year developed the infection - which is about two babies a day - and about one a week will die, while another a week will be left with a lifelong disability. "It's a heart-breaking start to life for families and that often the first they hear of Group B Strep is when their baby is sick or in intensive care". The charity has called for GBS to be a notifiable disease to make it a legal responsibility for infections to be reported. It added that current figures could be "missing around one fifth of the infections". There was a "postcode lottery" in terms of how many families will hear about GBS, he said. The charity also backed calls for screening. "In the UK we don't sadly have a routine testing programme, that's at odds with much of the rest of the high-income world. " A DHSC spokesperson said a public consultation on the notifiable diseases list was carried out last year. "DHSC and UKHSA are considering the responses and confirmation of any changes will be published in due course," they said. Several reasons for not recommending routine screening have been given by the committee, including that results can change in the last few weeks of labour, and that GBS does not cause infection in every baby. Read full story Source: BBC News, 26 February 2024 Further reading on the hub: Leading for safety: A conversation with Jane Plumb, Founder of Group B Strep Support
  12. Content Article
    Wellcome Collection long read on two women who battled through decades of medical paternalism: Marie Lyon, who took Primodos, and Dr Isabel Gal, the scientist who first raised the alarm.
  13. Content Article
    This animation aims to help staff and employers across health and social care understand Oliver's Training and why it is so vitally important. It was co-designed and co-produced with autistic people and people with a learning disability. Oliver McGowan died aged 18 in 2017 after being given antipsychotic medication to which he had a fatal reaction. He was given the medication despite his own and his family's assertions that he could not be given antipsychotics, and the fact that this was recorded in his medical records. The animation tells his story and highlights the increased risks facing people with learning disabilities and autism when accessing healthcare.
  14. 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
  15. News Article
    In 2009, Emma Murphy took a phone call from her sister that changed her life. “At first, I couldn’t make out what she was saying; she was crying so much,” Murphy says. “All I could hear was ‘Epilim’.” This was a brand name for sodium valproate, the medication Murphy had been taking since she was 12 to manage her epilepsy. Her sister explained that a woman, Janet Williams, on the local news had claimed that taking the drug during her pregnancies had harmed her children. She was appealing for other women who might have experienced this to come forward. Murphy found the news segment that evening and watched it. “I was just stunned,” she says. “Watching that, I knew. I knew there and then that my children had been affected.” At that point, Murphy was a mother to five children, all under six, and married to Joe, a taxi driver in Manchester. “My kids are fabulous, all of them, but I’d known for years that something was wrong,” she says. “They weren’t meeting milestones. There was delayed speech, slowness to crawl, not walking. There was a lot of drooling – that was really apparent. They were poorly, with constant infections. I was always at the doctors with one of them." A call between Murphy and Janet Williams was the start of an incredible partnership. It led to the report published this month by England’s patient safety commissioner, Dr Henrietta Hughes, which recommended a compensation scheme for families of children harmed by valproate taken in pregnancy. Hughes has suggested initial payments of £100,000 and described the damage caused by the drug as “a bigger scandal than thalidomide”. It is estimated that 20,000 British children have been exposed to the drug while in the womb. Williams and Murphy have campaigned relentlessly to reach this point. It is by no means the endpoint – even now, an estimated three babies are born each month having been exposed to the drug. Together, the women formed In-Fact (the Independent Fetal Anti Convulsant Trust) to find and support families like theirs. They were instrumental in the creation of an all-party parliamentary group to raise awareness in government. Read full story Source: The Guardian, 22 February 2024
  16. News Article
    The head of the NHS has today announced the rollout of ‘Martha’s Rule’ in hospitals across England from April, enabling patients and families to seek an urgent review if their condition deteriorates. The patient safety initiative is set to be rolled out to at least 100 NHS sites and will give patients and their families round-the-clock access to a rapid review from an independent critical care team if they are worried about their or a loved one’s condition. This escalation process will be available 24/7 to patients, families and NHS staff, and will be advertised throughout hospitals, making it quickly and easily accessible. NHS chief Amanda Pritchard said the programme had the potential to “save many lives in the future” and thanked Martha’s family for their important campaigning and collaboration to help the NHS improve the care of patients experiencing acute deterioration. Thirteen-year-old Martha Mills died from sepsis at King’s College Hospital, London, in 2021, due to a failure to escalate her to intensive care and after her family’s concerns about her deteriorating condition were not responded to promptly. Extensive campaigning by her parents Merope and Paul, supported by the cross-party think tank Demos, has seen widespread support for a single system that allows patients or their families to trigger an urgent clinical review from a different team in the hospital if the patient’s condition is rapidly worsening and they feel they are not getting the care they need. Merope Mills and Paul Laity, Martha’s parents, said: “We are pleased that the implementation of Martha’s Rule will begin in April. We want it to be in place as quickly and as widely as possible, to prevent what happened to our daughter from happening to other patients in hospital. “We believe Martha’s Rule will save lives. In cases of deterioration, families and carers by the bedside can be aware of changes busy clinicians can’t; their knowledge should be recognised as a resource. We also look to Martha’s Rule to alter medical culture: to give patients a little more power, to encourage listening on the part of medical professionals, and to normalise the idea that even the grandest of doctors should welcome being challenged. We call on all NHS clinicians to back the initiative: we know that the large majority do listen, are open with patients and never complacent – but Martha’s doctors worked in a different culture, so some situations need to change. “Our daughter was quite something: fun and determined, with a vast appetite for life and so many plans and ambitions – we’ll never know what she would have achieved with all her talents. Hers was a preventable death, but Martha’s Rule will mean that she didn’t die completely in vain.” Read full story Source: NHS England, 21 February 2024
  17. Content Article
    Decisions to admit older, frail patients to critical care must pay particular attention to quality of life and the potential burden of care on patients. This burden may extend beyond surviving a critical illness. These decisions are not easy and require careful thought, clinical judgment, and communication write Daniele Bryden and colleagues in this BMJ opinion piece. 
  18. Content Article
    On 29 December 2022, Shahzadi Khan was detained under section 2 of the Mental Health Act due to her mental state and the risks she presented. She was found to have had a manic episode with psychotic symptoms. Due to a lack of beds, she was placed in a privately-run mental health hospital in Norfolk. She remained there until her discharge to the family home on 26 January 2023. She was commenced on Olanzapine and Zopiclone for her mental health whilst an inpatient.   Her diagnosis on discharge was mania with psychotic symptoms. She was to remain on olanzapine in the community. Her placement out of area contributed to disjointed and inadequate discharge planning to support her in the community and was exacerbated by poor communication between the team managing out of area placements and the local team. As a consequence, the aftercare planning did not take place in accordance with S117 Mental Health Act.   This was exacerbated by a failure by all health professionals involved in her care within the mental health trust to recognise that she needed to be referred on to the Trafford Shared Care pathway. A referral would have ensured she received support and care for at least 12 weeks when she returned to the community. There is no clear reason for this failure. She was seen by the Home-Based Treatment Team (HBTT) on 28 January and 2 February, then discharged back to her GP. Within a week of that discharge from HBTT, which meant she had been left with no mental health support, she had deteriorated significantly. On 9 February her GP sent her to hospital for emergency assessment due to her presentation. She was discharged home to be seen by the Home- Based Treatment Team on 11th February. She was seen by that team on 11, 12, and 13 February. There was still no recognition of the fact that the Trafford policy was not being followed. She had indicated her lack of compliance with olanzapine, suicidal thoughts and her behaviour on 13th February was erratic. On 14 February 2023 she took a fatal overdose of prescribed zopiclone at her home address.
  19. News Article
    Italy will carry out an inquiry into its handling of the coronavirus pandemic in a move hailed as “a great victory” by the relatives of people killed by the virus but criticised by those who were in power at the time. Italy was the first western country to report an outbreak and has the second highest Covid-related death toll to date in Europe, at more than 196,000. Only the UK’s death toll is higher. The creation of a commission to examine “the government’s actions and the measures adopted by it to prevent and address the Covid-19 epidemiological emergency” was approved by the lower house of parliament after passing in the senate. Consuelo Locati, a lawyer representing hundreds of families who brought legal proceedings against former leaders, said: “The families were the first to ask for a commission and so for us this is a great victory. The commission is important because it has the task, at least on paper, to analyse what went wrong and the errors committed so as not to repeat the massacre we all suffered.” Read full story Source: The Guardian, 15 February 2024
  20. Event
    6th International Symposium: sharing experience and expertise on how patients and those close to them can improve safety of care today. The Symposium will hear from researchers and patients about their experience of complex modern healthcare. It will explore how to spot that things are going wrong, witness amazing new technology and map-out the ethical and legal implications of increased control of healthcare by patients. The event is in Bangor but will also broadcast content online on the day. Key topics for the 2024 event will be: Patient safety from the patient's (and family's) perspective. Patient Activated Critical Care & the policy discussion about Martha's rule. Patients held technology - empowering or distracting? Register
  21. 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.
  22. 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. 
  23. Content Article
    Traditionally, recommendations regarding responding to medical errors focused mostly on whether to disclose mistakes to patients. Over time, empirical research, ethical analyses and stakeholder engagement began to inform expectations — which are now embodied in communication and resolution programmes (CRPs) — for how healthcare professionals and organisations should respond not just to errors but any time patients have been harmed by medical care (adverse events). CRPs require several steps: quickly detecting adverse events, communicating openly and empathetically with patients and families about the event, apologising and taking responsibility for errors, analysing events and redesigning processes to prevent recurrences, supporting patients and clinicians, and proactively working with patients toward reconciliation. In this modern ethical paradigm, any time harm occurs, clinicians and health care organisations are accountable for minimising suffering and promoting learning. However, implementing this ethical paradigm is challenging, especially when the harm was due to an error.
  24. News Article
    Campaigners have said that more lives would be lost unless mental health services were reformed. Figures show 120 people each year are killed by people with mental illnesses. Julian Hendy, whose father was killed by a psychotic man with a long history of mental ill health 17 years ago, said health professionals must be “more assertive” and work better with other agencies such as the police. Valdo Calocane, who was sentenced on Thursday to an indefinite hospital order after being convicted of manslaughter of three people in Nottingham, had fallen off the radar of mental health services, which allowed him to avoid taking his medicine. Hendy accused Nottinghamshire Healthcare NHS Foundation Trust, which was responsible for Calocane’s care, of “washing their hands” of him. He said: “It’s not responsible and it’s not safe. It doesn’t look after people properly … That hasn’t helped him at all, or protected his rights at all, because he has now committed this terrible offence.” Read full story (paywalled) Source: The Times, 26 January 2024
  25. 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.
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