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News Article
NHS gender identity service for children can’t cope with demand, review finds
Patient Safety Learning posted a news article in News
The only NHS gender identity service for children in England and Wales is under unsustainable pressure as the demand for the service outstrips capacity, a review has found. The interim report of the Cass Review, commissioned by NHS England in 2020, recommends that a network of regional hubs be created to provide care and support to young people with gender incongruence or dysphoria, arguing their care is “everyone’s business”. Led by the paediatrician Hilary Cass, the interim report explains that the significant rise in referrals to the Gender Identity Development Service (GIDS) at the Tavistock and Portman NHS foundation trust in London has resulted in overwhelmed staff and waiting lists of up to two years that leave young people “at considerable risk” of distress and deteriorating mental health. Last spring, the Care Quality Commission demanded monthly updates on numbers on waiting lists and actions to reduce them in a highly critical report on GIDS. Differing views and lack of open discussion about the nature of gender incongruence in childhood and adolescence – and whether transition is always the best option – means that patients can experience a “clinician lottery”, says the new review, which carried out extensive interviews with professionals and those with lived experience. It notes that the clinical approach used by GIDS “has not been subjected to some of the usual control measures” typically applied with new treatments. Another significant issue raised with the review team was that of “diagnostic overshadowing”, whereby once a young person is identified as having gender-related distress, other complex needs – such as neurodiversity or a mental health problem that would normally be managed by local services – can be overlooked. Read full story Source: The Guardian, 10 March 2022 -
News Article
Families caring for dementia patients in UK reaching crisis point, says charity
Patient Safety Learning posted a news article in News
Soaring numbers of families struggling to care for someone with dementia have hit a “crisis point” with nowhere to turn for help when their loved one puts themselves or others at risk of harm, a charity has said. More than 700,000 people in the UK look after a relative with dementia. Many feel they can no longer cope with alarming situations where they or their relative are at immediate risk of being harmed, according to Dementia UK. Dementia can affect a person’s ability to manage their reactions to difficult thoughts and feelings. This can lead to them experiencing such intense states of distress that they become verbally or physically aggressive, putting themselves and those around them at risk of harm. The charity says carers and their loved ones are being failed because health and social care support services are already stretched to their limit, which has led to a surge in calls to its helpline. Sheridan Coker, the deputy clinical lead at Dementia UK, said: “We’re increasingly being contacted by families who are at risk of harm with no one to turn to. We receive calls where the person with dementia has become so distressed that they have physically assaulted the person caring for them, often a family member." Read full story Source: The Guardian, 31 July 2023 -
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 -
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 -
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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News Article
Epilepsy drug that harms babies may damage their children too
Patient Safety Learning posted a news article in News
An epilepsy drug that caused disabilities in thousands of babies after being prescribed to pregnant women could be more dangerous than previously thought. Sodium valproate could be triggering genetic changes that mean disabilities are being passed on to second and even third generations, according to the UK’s medicines regulator. The Medicines and Healthcare Products Regulatory Agency (MHRA) has also raised concerns that the drug can affect male sperm and fertility, and may be linked to miscarriages and stillbirths. Ministers are already under pressure after it emerged in April that valproate was still being prescribed to women without the legally required warnings. Six babies a month are being born after having been exposed to the drug, the MHRA has said. It can cause deformities, autism and learning disabilities. Cat Smith, the Labour chairwoman of the all-party parliamentary group on sodium valproate, said: “This transgenerational risk is very concerning. There have been rumours that this was a possibility, but I had never heard it was accepted until last week by the MHRA." “The harm from sodium valproate was caused by successive failures of regulators and governments, and this news means it could be an order of magnitude worse than we first thought. It underlines the need for the Treasury to step up to their responsibilities around financial redress to those families.” Read full story (paywalled) Source: Sunday Times, 19 June 2022 -
News ArticleA review intended to drive ‘rapid improvements’ to maternity services in Nottingham has been scrapped after just eight months – with some bereaved families saying instead it did ‘irreparable’ damage to their mental health and trust in the system. It was hoped the process would lead to rapid change, restore families’ faith in maternity in Nottingham, and provide a voice for parents who wanted to share both positive and negative experiences. Instead, some families said they found the review process slow, unprepared for the number of people who came forward and lacking the impact needed to improve a maternity service rated ‘inadequate’ by health inspectors. The growing frustration that followed would turn to anger for some families, leading to the direct involvement of a Government minister, the arrival and rapid departure of a new chair, and the eventual disbanding of the review altogether in favour of a fresh start with one of the country’s top advisers on midwifery, Donna Ockenden – who led an in-depth review into Shrewsbury and Telford NHS Trust’s maternity services. The U-turn came after pressure from a group of more than 100 people named ‘Families Harmed by Nottingham Maternity’ – which includes parents whose babies have died or been injured while being cared for at Nottingham’s two main hospitals. Local Democracy Reporter Anna Whittaker looks at what led to so many families turning on a system which the NHS said was set up to bring about major changes. Read full story Source: Notts, 14 June 2022
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News ArticleRecord numbers of chronically ill patients living with disabilities are being denied funding for their care, The Mail on Sunday has reveal. An analysis of official figures shows only a fifth of those with disabling conditions such as Parkinson's disease, dementia and spinal injury asking for Government-funded help are being granted it this year. This is the lowest figure on record, with the exception of the pandemic years when assessments stopped altogether. Every year about 160,000 people apply for NHS funding called 'continuing healthcare', money available to those with significant medical needs. Unlike social care funding, arranged for some who need looking after, continuing healthcare is only offered to those in ill health who need regular attention from medical professionals. A decade ago, 34% of these applications were successful. Today that figure is 22%. Meanwhile, separate data seen by this newspaper reveals a sharp rise in the number of assessments that are deemed to have wrongly decided against funding at a subsequent appeal. Lisa Morgan, partner at Hugh James solicitors, which specialises in helping families fight for NHS care funding, says: 'In many cases, if [the clinical commissioning group] had made the right decision in the first place, it could have saved itself thousands of pounds.' The revelations come weeks after The Mail on Sunday told of the heartbreaking stories of desperately unwell people left utterly reliant on relatives, having been refused NHS-funded care. Some have then embarked on the lengthy and costly process of appealing the decision with legal help, to be told months or years later that they should have been granted funding all along. Read full story Source: Mail Online, 11 June 2022
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News Article
Somerset care training to help support loved ones at home for longer
Patient Safety Learning posted a news article in News
A training programme is providing people with the skills to care for loved ones suffering from serious conditions at home in their final days. Sarah Bow's partner Gary White, from Somerset, was 55 when he was diagnosed with motor neurone disease in 2021. A team from NHS Somerset provided personalised training to Ms Bow which allowed the couple to spend the final 13 months of his life together at home. The Somerset NHS Foundation Trust social care training team made visits to the couple's home as Mr White's condition progressed, to provide advice and guidance to Ms Bow. The service was set up in November 2021 to provide free NHS standardised training and competency assessments in clinical skills to people involved in social care. Ms Bow said the scheme had helped them spend more time together doing the things Mr White enjoyed. "Being able to care for him meant we could have so many precious moments before he died," she said. The training in a variety of skills including like catheters and injections, aims to reduce hospital admissions and improve patient discharge times. Read full story Source: BBC News, 17 February 2023 -
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 ArticleInstitute of Health Visiting executive director Alison Morton warns national policy has developed a “baby blind spot” amid the NHS crisis, with many young children missing out on government’s promise of the “best start in life”, and calls for a shift towards prevention and early intervention.
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Content ArticleThis video published by the Irish Health Service Executive (HSE) tells the story of Pat, whose bowel cancer diagnosis was missed, resulting in his premature death. His daughter Patricia talks about the two investigations that took place into her father's death and how the hospital's internal investigation failed to acknowledge that a staff member had raised concerns about Pat's initial colonoscopy on five occasions, but this had not been followed up. She describes the impact of these events on her father and the rest of the family and calls on medical professionals to "trust us (families) more and fear solicitors less."
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Content ArticleYoung people and expert mental healthcare staff say patients are unlikely to receive in-patient mental health care unless they “have attempted suicide multiple times”, according to a new report published by Look Ahead Care and Support. Launched in the House of Lords, the report – funded by Wates Family Enterprise Trust and produced by experts Care Research – argues Accident and Emergency departments have become an ‘accidental hub’ for children and young people experiencing crisis but are ill-equipped to offer the treatment required. Based on in-depth interviews with service users, parents and carers, and NHS and social care staff from across England, the findings from the Look Ahead Care and Support report draws on experience of treating depression, anxiety, self-harm, suicidal thoughts and suicide attempts, eating disorders, addiction and psychosis.
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Content ArticleThis PowerPoint presentation summarises the research approach taken by Sarah Balchin, Associate Director of Community Engagement and Experience and Chief Nurse at Solent NHS Trust, for a study into the experience of family carers. The interpretative phenomenological analysis looked at the lived experience of family carers who adopted the role abruptly after a sudden change in the physical health care needs of a family member.
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Content Article
CQC: Maternity survey 2022
Patient Safety Learning posted an article in Maternity
This survey from the Care Quality Commission (CQC) looked at the experiences of women and other pregnant people who had a live birth in early 2022. -
Content ArticleThis editorial in the Journal of Patient Safety and Risk Management reflects on the achievements of the organisation Action Against Medical Accidents (AvMA) over the past 40 years and looks at the emerging role of Patient Safety Learning amongst organisations working for patient safety. Helen Hughes, Chief Executive of Patient Safety Learning, and Albert Wu, Editor-in-chief of the journal, reflect on the purpose and value of patient safety charities and not-for-profit organisations, highlighting the ways in which they channel and champion the patient voice and campaign to address specific areas of recurrent harm. They discuss the vital nature of the patient perspective in driving safety improvements in healthcare, and look at how these organisations amplify this. They also talk about the role of Patient Safety Learning and what it is doing to both drive system change at policy level, and share widely the knowledge of risk and good practice for safer care. They discuss the ways in which Patient Safety Learning delivers its aim to "listen to and promote the voice of the patient safety front line - patients, families and staff.”
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Content ArticlePatient safety incident investigations (PSII) are system-based responses to a patient safety incident for learning and improvement. Typically, a PSII includes four phases: planning, information gathering, synthesis, and interpreting and improving. More meaningful involvement can help reduce the risk of compounded harm for patients, families and staff, and can improve organisational learning, by listening to and valuing different perspectives.
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Content ArticleFor patients living at home with advanced illness, deterioration in health can happen at any time of the day or night. This research report funded by the charity Marie Curie looks at issues faced by people with advanced illness and their informal carers in accessing out-of-hours care. The report highlights new evidence on out-of-hours care, based on: UK data on out-of-hours emergency department attendance among people who are in the last year of life. interviews with health professionals about out-of-hours services across the UK. a patient and public involvement (PPI) workshop.
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Content ArticleIn this blog, Louise Pye, Head of Family Engagement at the Healthcare Safety Investigation Branch (HSIB) highlights how the Patient Safety Incident Response Framework (PSIRF) can help NHS trusts involve patients and families in the face of extreme winter pressures. She highlights how the seven themes set out in the PSIRF guidance will help patient safety leaders ensure the involvement of patients and families is maintained even when services are dealing with extreme pressures.
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Content ArticleA recently published report highlights the shortcomings in care provided by the NHS. Peter Walsh, Joanne Hughes and James Titcombe emphasise how millions could be saved if people were empowered early on to have their needs met without the need to turn to litigation
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Content ArticleThis article in Time reviews the documentary film 'To Err is Human', which explores the tragic outcomes of medical errors and the medical culture that allows them to persist. The film follows the Sheridans, a family from Boise, Idaho on their journey to understand how two major medical errors befell their family: one that contributed to a case of cerebral palsy, and another that involved a delayed cancer diagnosis and ended in death.
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Content ArticleThis report by the Harmed Patients Alliance (HPA) explores the needs of injured patients and their loved ones for independent advocacy, advice and information when they have been involved in patient safety incidents that are believed to have led to harm. It examines the extent to which this is available or resourced, and aims to stimulate and inform a national discussion about this issue in England among key stakeholders. It looks at the historical context and the moral and economic arguments and implications of resourcing these kinds of services.
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News ArticleAbout 4,000 UK victims of the infected blood scandal are to receive interim compensation payments of £100,000 by the end of this month. It is being paid to those whose health is failing after developing blood borne viruses like hepatitis and HIV. It is also being paid to partners of people who have died. Conan McIlwrath, from Larne in County Antrim, who is among the 100 or so victims affected in Northern Ireland said it was "very much welcomed". "This is the first compensation that's ever been paid - anything prior has been support," he told BBC News NI. All victims have campaigned for actual 'compensation' as they have said only this would acknowledge decades of physical and social injury, as well as loss of earnings and the cost of care. Read full story Source: BBC News, 22 October 2022
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News Article
Why are hospitals still using Covid rules to keep fathers out of maternity wards?
Patient Safety Learning posted a news article in News
At 9.16am Florence Wilkinson gave birth to a healthy baby boy by planned caesarean section. The team of NHS doctors and midwives worked like a well-oiled machine, performing what to them was a standard operation, while also showing real kindness. After a short stint in a close observation bay, Florence was moved onto the postnatal ward. Still anaesthetised, Florence was completely reliant on her partner Ben to help her recover from the birth and feed her son in his first hours of life. Yet just a few hours later, the scene was very different. Due to Covid protocol, Ben was not able to stay overnight. At 8pm, midwives bustled around briskly ejecting fathers and birth partners from the ward – and what followed was one of the hardest, most frightening nights of Florence's life. She was alone with a newborn, yet during the course of that night she only saw a midwife once. She was still recovering from my operation and unable to pick up her baby. An exhausted healthcare assistant told Florence she didn’t have time to help and the newborn didn’t feed for seven hours. There simply weren’t enough staff to look after the mothers, but no partner to advocate for them either. A review of the maternity policies listed on the websites of 90 hospital trusts in England reveals that 54% still restrict partners from staying overnight after birth. While a few trusts have always limited access at night, many admit to bringing in restrictions during the pandemic which they continue to implement to this day. “It is deeply concerning to hear that some Trusts are continuing to implement restrictions on visiting, such as limited postnatal visiting overnight, under the premise of Covid, particularly at this stage in the pandemic,” says Francesca Treadaway, director of engagement at the charity Birthrights. “There is overwhelming evidence, built up since March 2020, of the impact Covid restrictions in maternity had on women giving birth. It must be remembered that blanket policies are rarely lawful and any policies implemented should explicitly consider people’s individual circumstances.” Read full story (paywalled) Source: The Telegraph, 13 October 2022 -
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.
