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Showing results for tags 'Autism'.
Found 122 results
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News Article
Unit put into special measures after ‘inadequate’ rating
Patient Safety Learning posted a news article in News
A low secure unit for people with learning disabilities and autism has been put into special measures after inspectors found the use of restraint and segregation affected the quality of life for some patients. Cedar House, in Barham near Canterbury, houses up to 39 people and had been rated “good” by the Care Quality Commission early last year. But at an inspection in February this year inspectors rated the service – run by the Huntercombe Group — “inadequate,” saying it was not able to meet the needs of many of the patients at the unit. It was issued with three requirement notices. One patient had been subject to prolonged restraint 65 times between September and February. Each time he was restrained by between two and 19 staff, for an average of nearly two hours. On one occasion, this restraint lasted for eight hours. But the inspectors were told that in the six months before the inspection 29 staff had been injured during these restraints, and the hospital had been trying to refer the patients to a more secure environment. “The impact of this inappropriately placed patient was considerable for both the patients and the hospital,” the report said. “The staff who were regularly involved in restraining the patient were tired and concerned about the welfare and dignity of the patient.” Read full story (paywalled) Source: HSJ, 21 July 2020 -
News ArticleFigures released by the Office for National Statistics show that about two-thirds of fatalities from this disease during its peak from start of March to mid-May were people with disabilities. That is more than 22,000 deaths. Then dig down into the data. It indicates women under 65 with disabilities are more than 11 times more likely to die than fellow citizens, while for men the rate is more than six times higher. Even for older people the number of deaths was three times as high for women and twice as high for men. There are some explanations for such alarming figures, although they tend to reveal other profound concerns. Yet the report showed even when issues such as economic status and deprivation are taken into account, people with disabilities died at about twice the rate of their peers. So where was the fury over this obvious and deep inequality, even in death? Where was the fierce outcry over persistent failures that left many citizens and their families at risk, lacking even the most basic advice, support or protection from the state? Chris Hatton, the dedicated professor of public health and disability at Lancaster University, delved into all available data. He found people with autism and learning disabilities were in reality at least four times more likely to die at the peak of pandemic than other citizens. They also died at far younger ages. “Information released about deaths of autistic people and people with learning disabilities has been minimal, grudging and seems deliberately designed to be inaccessible,” he says. This adds up to one more shameful episode in the scandal of how Britain treats such citizens. Read full story Source: iNews, 5 July 2020
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News Article
‘Urgent’ reviews launched by NHSE as death rates double
Patient Safety Learning posted a news article in News
NHS England and NHS Improvement have ordered urgent reviews into the deaths of people with a learning disability and autism during the pandemic, HSJ has learned. In May, the regulators said the COVID-19 death rates among this population were broadly in line with the rest of the population. But in early June, the Care Quality Commission published data which suggested death rates of people with learning disabilities and/or autism had doubled during the pandemic. In an announcement posted on a social media group for Royal College of Nursing members last week, NHSE/I said they were “urgently seeking clinical reviewers with experience in learning disability”. The message to the private Facebook group, seen by HSJ, added: “The effects of coronavirus are having a far-reaching impact on all our lives. As we learn more about the virus, we are taking steps to make changes to safeguard our well-being. “For people with a learning disability, the number of deaths has doubled during the covid pandemic. (compared to data on the number of deaths recorded during the same period last year). As a result, we have a large number of deaths of people with a learning disability who have died during the pandemic whose deaths we want to review.” Read full story (paywalled) Source: HSJ, 1 July 2020 -
News Article
Police investigating death of teenager at acute hospital
Patient Safety Learning posted a news article in News
Police in Bristol have launched investigations into the circumstances that led to the death of a teenager with autism and learning disabilities. Avon and Somerset Police told HSJ they are investigating the circumstances behind the death of Oliver McGowan in 2016, at North Bristol Trust. They said: “As part of the enquiry [officers] will interview a number of individuals as they seek to establish the circumstances around Oliver’s death before seeking advice from the Crown Prosecution Service.” Oliver died in 2016 at Bristol’s Southmead Hospital after being admitted following a seizure. He had mild autism, epilepsy and learning difficulties. During previous hospital spells he experienced very bad reactions to antipsychotic medications, prompting warnings in his medical records that he had an intolerance to these drugs. Despite this Oliver was given anti-psychotic medication by doctors at Southmead against his own and his parents’ wishes. This led him to suffer a severe brain swelling which led to his death. His death has since prompted a national training programme for NHS staff on the care of people with autism and learning disabilities. Read full story (paywalled) Source: HSJ, 1 July 2020 -
News Article
CQC investigates its own response to concerns over troubled service
Patient Safety Learning posted a news article in News
The Care Quality Commission (CQC) has launched a review into its own regulatory response to a troubled autism service. The CQC has asked its head of inspection for child and justice services, Nigel Thompson, to examine its response to concerns that were raised about an autism service in south Staffordshire in 2019. Concerns were reported directly to the CQC in early 2019, by parents of children under the services, while similar issues were highlighted in a report from the local Healthwatch branch last July. In a statement, the CQC said: “Following concerns raised with us by families, in relation to The Hayes autism service run by Midlands Psychology, we are looking at the evidence we received about this service and how we assessed this to inform our regulatory response. “We are looking into these concerns in accordance with our complaints process. As a learning organisation, we welcome all feedback and we have already met with some of the families, but some meetings have been delayed due to the covid-19 pandemic.” Read full story Source: HSJ, 25 June 2020 -
Content ArticlePresentation from Steve Turner at a NICE Associates Meeting on over prescribing of medication to patients with learning disabilities and reasonable adjustments. He highlights the death of Oliver McGowan and the lessons learnt.
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News Article
Increase in learning disability deaths during the coronavirus outbreak
Patient Safety Learning posted a news article in News
The Care Quality Commission (CQC) have looked at how the number of people who have died during the coronavirus outbreak this year compares to the number of people who died at the same time last year. They looked at information about services that support people with a learning disability or autism in the 5 weeks between 10 April to 15 May in 2019 and 2020. These services can support around 30,000 people. They found that in that 5 weeks this year, 386 people with a learning disability, who may also be autistic, died. Data for the same 5 weeks last year found that 165 people with a learning disability, who may also be autistic, died. This information shows that well over twice as many people in these services died this year compared to last year. This is a 134% increase in the number of death notifications this year. This new data should be considered when decisions are being made about the prioritisation of testing at a national and local level. Kate Terroni, Chief Inspector of Adult Social Care at the Care Quality Commission (CQC) said: "Every death in today's figures represents an individual tragedy for those who have lost a loved one." "While we know this data has its limitations what it does show is a significant increase in deaths of people with a learning disability as a result of COVID-19. We already know that people with a learning disability are at an increased risk of respiratory illnesses, meaning that access to testing could be key to reducing infection and saving lives." "These figures also show that the impact on this group of people is being felt at a younger age range than in the wider population – something that should be considered in decisions on testing of people of working age with a learning disability." Read full story Source: Care Quality Commission, 2 June 2020 -
Content ArticleIn the summer of 2019, following a televised Panorama programme showing abusive care of people with learning disabilities and/or autism in Whorlton Hall (an independent hospital in the north of England), the Care Quality Commission (CQC) requested an independent review of its inspections of Whorlton Hall. Professor Glynis Murphy was appointed to conduct the review.
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News Article
Coronavirus: Special needs parents in 'survival mode'
Patient Safety Learning posted a news article in News
A father has described the "huge impact" of losing respite care for his young daughter who has complex special needs. Tim Clarke and his wife Ana look after their six-year-old daughter Molly at home in Worcester. The family normally receives a few hours of outside care and educational help a week, but that ended with the coronavirus pandemic. Molly has been diagnosed with autism and also has medical issues including a cyst on her brain. One charity worker from the Pathological Demand Avoidance (PDA) Society, a condition which is on the autism spectrum, described parents of children with special needs as being in "survival mode". Watch video Source: BBC News, 1 April 2020 -
Content ArticleThe mortality rates for people with autism spectrum disorder (ASD) are double those of the general population and researchers believe unmet mental health needs may be a factor. The researchers’ results were derived from an Australian-first University of New South Wales (UNSW) study, which analysed linked data sets on death rates, risk factors and cause of death for 36,000 people on the autism spectrum. While cancer and circulatory diseases are the leading cause of deaths in the general population, injury and poisoning – including accidents, suicide and deaths related to self-harm – were the most common causes for people with ASD. GP and autism advocate Dr James Best told newsGP he was not surprised by the results, but that they did confirm people with ASD have a different set of health risk factors.
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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 ArticlePatient safety is the number one priority in health care as safety is considered at every level of a healthcare organisation (e.g., building, equipment, communication, processes for medications, treatments, and surgical procedures). Addressing the welfare of patients can be challenging, yet for some of the most vulnerable patients (e.g., special needs, disabilities and mental and social health issues), even the most routine nursing requests can put them at a safety risk. Simulations provide an opportunity for nursing students and professional nurses with realistic experiences caring for individuals with unique needs, especially when safety is a major concern.
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Content ArticleAs the number of Pennsylvanians diagnosed with autism spectrum disorder (ASD) continues to grow, healthcare facilities are seeing an increase in the number of these individuals seeking care. Negative interactions with the healthcare system and concerns about the quality of care provided to this population have been reported by individuals with ASD, their families, and healthcare providers. The Pennsylvania Patient Safety Authority received 138 reports of events involving patients with ASD from July 2004 through August 2014. Qualitative analysis of event report narratives revealed 12 patient safety concern themes involving patients with ASD. Injury to self or potential injury to self was identified as the most frequently reported concern (n = 75), followed by interference or lack of cooperation with care (n = 30). Other events included aggressive behavior and/or injury to others, use of chemical or physical restraints, patient communication difficulties, and caregiver communication difficulties and/or consent issues. The patient safety concerns commonly encountered by ASD patients and their families as reported to the Authority are consistent with the concerns cited in the published literature. Resources such as those developed by the Western Pennsylvania Autism Services, Education, Resources, and Training Collaborative are available to help healthcare facilities improve care for this population.
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Content ArticlePeople with a learning disability have higher rates of morbidity and mortality than the general population and die prematurely. At least 41% of them die from respiratory conditions. They have a higher prevalence of asthma and diabetes, and of being obese or underweight in people. All these factors make them more vulnerable to coronavirus. There is evidence that people with autism also have higher rates of health problems throughout childhood, adolescence, and adulthood, and that this may result in elevated risk of early mortality. This guide, from NHS England, states the following key points should be addressed when assessing and treating a patient with a learning disability or with autism who is suspected of having or is known to have coronavirus: Be aware of diagnostic overshadowing Pay attention to healthcare passports Listen to parents/carers Make reasonable adjustments Understanding behavioural responses to illness/pain/discomfort Mental Capacity Act Ask for specialist support and advice if necessary Mental wellbeing and emotional distress. Please download the full guide for further detail.
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Content ArticleA list of guides that help to explain the coronavirus outbreak in an easy read format. Resources include those specifically designed for people with Downs Syndrome and learning disabilities. These guides and posters will help families, care providers and hospital staff communicate messages inclusively.
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Content ArticleThe objective of this investigation was to understand the context of magnetic resonance imaging (MRI) scanning under general anaesthetic and how care may be reasonably adjusted for patients with autism or learning disabilities. The ‘reference event’ was Alice, a teenage girl who had autism. Sadly, Alice died following her MRI scan under general anaesthetic. The findings and conclusions of this investigation may be applicable to other non-invasive procedures carried out on patients who are under general anaesthetic.
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News Article
Former minister says government would lose human rights challenge
Patient Safety Learning posted a news article in News
Sir Norman Lamb, chair of South London and Maudsley Foundation Trust and a former Liberal Democrat MP, has suggested the government would lose a legal challenge over its national programme for patients with learning disabilities and said the national Transforming Care programme was at the “very least a partial failure”. “I regard this as a human rights issue. We’re locking people up when we don’t need to lock them up. We’re subjecting them to force, when we shouldn’t do so, and this is how I think we need to frame it. If the government were challenged in court on this, I think there’s a very good chance, as an ex-lawyer, that they would lose.” Transforming Care was launched in 2011 following the Winterborne View scandal and aimed to discharge patients with learning disabilities and autism out of institutional inpatient units into the community. However, the most recent figures, from NHS Digital, show there were still more than 2,000 patients within inpatient units, ahead of the national programme’s expiration this month. Kevin Cleary, deputy chief inspector for hospitals and lead for learning disability and mental health services for the CQC, said: “We have allowed our patients to be placed within places like Whorlton Hall. I think the NHS provides very few services of this type, it has withdrawn from providing these services, and has become comfortable with providing that service, within the independent sector, several hundred miles away and that’s not right… absolutely not right." “We cannot say we are providing patient centred care or say we are placing the patient at the heart of everything we do and have that response from the system. We are all responsible for that.” Read full story (paywalled) Source: HSJ, 10 March 2020 -
News ArticleThe Equality and Human Rights Commission have launched a legal challenge against the Secretary of State for Health and Social Care over the repeated failure to move people with learning disabilities and autism into appropriate accommodation. Their concerns are about the rights of more than 2,000 people with learning disabilities and autism being detained in secure hospitals, often far away from home and for many years. These concerns increased significantly following the BBC’s exposure of the shocking violation of patients’ human rights at Whorlton Hall, where patients suffered horrific physical and psychological abuse. The Equality and Human Rights Commission have sent a pre-action letter to the Secretary of State for Health and Social Care, arguing that the Department of Health and Social Care (DHSC) has breached the European Convention of Human Rights (ECHR) for failing to meet the targets set in the Transforming Care program and Building the Right Support program. These targets included moving patients from inappropriate inpatient care to community-based settings, and reducing the reliance on inpatient care for people with learning disabilities and autism. Rebecca Hilsenrath, Chief Executive of the Equality and Human Rights Commission, said: 'We cannot afford to miss more deadlines. We cannot afford any more Winterbourne Views or Whorlton Halls. We cannot afford to risk further abuse being inflicted on even a single more person at the distressing and horrific levels we have seen. We need the DHSC to act now." "These are people who deserve our support and compassion, not abuse and brutality. Inhumane and degrading treatment in place of adequate healthcare cannot be the hallmark of our society. One scandal should have been one too many." Read full story Souce: Equality and Human Rights Commission, 12 February 2020
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Content ArticleSignificant changes in how autistic people with a learning disability access and experience healthcare can and should be informed by stakeholders, including the patient and their family. This article, published by the University of Hertfordshire, provides different examples and suggestions from experts by parental experience.
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Content ArticleThere is little research focusing on how bereaved families experience NHS inquiries and investigations. Despite this gap, there is a consistent assumption that these processes provide families with catharsis. Drawing on her personal experiences of NHS investigations over a five‐year period after the death of her son, Connor Sparrowhawk, the author suggests the assumption of catharsis is misplaced and works to erase the considerable emotional ‘accountability’ labour that families undertake during these processes. She further question whether inquiries or investigations are an effective way of holding stakeholders to account. She concludes with two points: first, qualitative research is needed to better understand bereaved family experiences of inquiries and investigations and second, the ‘lessons learned’ objective underpinning inquiries should be replaced with ‘leading to demonstrable change’, which is what families typically want.
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Content Article
Our son’s final days
Claire Cox posted an article in Patient stories
NHS investigators are to meet the family of a young, autistic man - left starving and desperately thirsty in hospital while waiting for a delayed operation. Mark Stuart spent five days in agony and died following a catalogue of failings by NHS staff. His parents say they have been battling for answers for four years. These are the harrowing events that came days before the needless, avoidable death of Mark Stuart. Mark was a young man with autism. -
Content Article
Autism Act 2009
Claire Cox posted an article in Legal matters
What is the Autism Act? The Autism Act 2009 was the result of two years of active campaigning, with thousands of National Autistic Society members and supporters persuading their MPs to back Cheryl Gillan MP’s Private Members Bill. It is the only act dedicated to improving support and services for one disability.
