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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 -
Content ArticleCaring for people with learning disabilities in an acute hospital setting can be challenging, especially if that patient has transitioned from children’s services to adult services. The experience in children’s acute care differs to adult acute care; this difference in processes of care can cause great anxiety for the patient and their family and carers. The reasonable adjustments that were perhaps made and sustained in children’s services may now not exist. The purpose of this blog is to demonstrate the importance for services to be designed around patients’ needs with patients, families and carers. If we get this right, the quality of care given will be improved, patient satisfaction increases and, in turn, a reduction in patient harm. It is important to note that designing services around patients is not exclusive to learning disabilities; designing services with ALL patients at the centre with their involvement is crucial for trusts to provide safe care.
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News Article
Unlawful do not resuscitate orders imposed on people with learning disabilities
Patient Safety Learning posted a news article in News
Unlawful 'do not resuscitate' orders are being placed on patients with a learning disability during the coronavirus pandemic without families being consulted. National charities have successfully challenged more than a dozen unlawful do not resuscitate orders (DNRs) that were put in place because of the patient’s disability rather than due to any serious underlying health risk. Turning Point said it had learned of 19 inappropriate DNRs from families while Learning Disability England said almost one-fifth of its members had reported DNRs placed in people’s medical records without consultation during March and April. In one example, a man in his fifties with sight loss was admitted to hospital after a choking episode and was incorrectly diagnosed with coronavirus. He was discharged the next day with a DNR form giving the reason as his “blindness and severe learning disabilities”. Marie-Anne Peters, whose brother Alistair has epilepsy but no other health conditions, overturned a DNR on her brother which included instructions for him not to be taken to hospital. Both charities fear other people with learning disabilities who are vulnerable could be wrongly denied life-saving treatment. They have now launched a new checklist for families and care workers to challenge illegal DNRs. Read full story Source: The Independent, 13 June 2020 -
News Article
Children 'self-harming in hospital' after family visits banned
Patient Safety Learning posted a news article in News
Young people with learning disabilities are being driven to self-harm after being prevented from seeing their families during the coronavirus lockdown in breach of their human rights, a new report finds. The Joint Committee on Human Rights warned that the situation for children and young people in mental health hospitals had reached the point of “severe crisis” during the pandemic due to unlawful blanket bans on visits, the suspension of routine inspections and the increased use of restraint and solitary confinement. The report concluded that while young inpatients' human rights were already being breached before the pandemic, the coronavirus lockdown has put them at greater risk – and called on the NHS to instruct mental health hospitals to resume visits. It highlighted cases in which young people had been driven to self-harm, including Eddie, a young man with a learning disability whose mother, Adele Green, had not been able to visit him since 14 March. “When the lockdown came, it was quite quick in the sense that the hospital placed a blanket ban on anybody going in and anybody going out,” said Ms Green. “Within a week, with the fear and anxiety, he tried to take his own life, which really blew us away. We were mortified.” The Committee is urging NHS England to write to all hospitals, including private ones, stating they must allow visits unless there is a specific reason relating to an individual case why it would not be safe, and said the Care Quality Commission (CQC) should be responsible for ensuring national guidance is followed. Read full story Source: The Independent, 12 June 2020 -
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 -
News ArticleNHS England has said disabled and vulnerable patients must not be denied personalised care during the coronavirus pandemic and repeated its warning that blanket do not resuscitate orders should not be happening. In a joint statement with disabled rights campaigner and member of the House of Lords, Baroness Jane Campbell, NHS England said the COVID-19 virus and its impact on the NHS did not change the position for vulnerable patients that decisions must be made on an individualised basis. It said: “This means people making active and informed judgements about their own care and treatment, at all stages of their life, and recognises people’s autonomy, as well as their preferences, aspirations, needs and abilities. This also means ensuring reasonable adjustments are supported where necessary and reinforces that the blanket application of do not attempt resuscitation orders is totally unacceptable and must not happen.” Read full story Source: The Independent, 26 May 2020
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News ArticleMore than 460 people with a learning disability have died from coronavirus in just eight weeks since the start of the outbreak in England. New data shows between the 16 March and 10 May 1,029 people with a learning disability died in England, with 45 per cent, 467, linked to coronavirus.Overall the number of deaths during the eight weeks is 550 more than would be expected when compared to the same period last year. The charity Mencap warned people with a learning disability were “being forgotten in this crisis” and called for action to tackle what it said could be “potentially discriminatory practice.” It highlighted the percentage of Covid-19 related deaths among learning disabled people was higher than those in care homes, where the proportion of Covid-19 deaths was 31 per cent for the same period. The data has been published after an outcry over the lack of transparency about the impact of Covid-19 on mental health patients and people with a learning disability or autism. Read full story Source: The Independent, 19 May 2020
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News ArticleThe NHS will this week begin to publish the numbers of people who are dying from coronavirus in mental health and learning disability units, the government has announced. England's national medical director Stephen Powis told the Downing Street daily press briefing that the figures would be published on an "ongoing basis" after calls to paint a clearer picture of the problem. It comes as figures from the Care Quality Commission showed a sharp increase in deaths among mental health patients compared to last year. Asked by The Independent whether the numbers could be made public, he replied: "Yes, I can commit that we will publish that data. "We've been looking at how we can do that; we publish deaths daily, we're looking at how we can report on those groups and I can commit that from next week we'll be publishing data on learning disabilities, autism, and mental health patients who have died in acute hospitals and we will do that on an ongoing basis." Read full story Source: The Independent, 9 May 2020
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News Article
Government acts after claims covid deaths of disabled people are being 'ignored'
Patient Safety Learning posted a news article in News
Deaths of those with learning disabilities and autism fromCOVID-19 are to be analysed by Public Health England (PHE), HSJ can reveal. Several senior sources have confirmed PHE has put together a group, which includes independent experts, to analyse mortality data. They had previously not been included in the government’s inquiry into the over-representation of some groups among covid fatalities. The news comes amid mounting concerns from major charities over the of lack transparency in data collected centrally on the deaths of people from these these groups during the pandemic. In a letter yesterday , seen by HSJ, Labour’s shadow secretary for social care Liz Kendall, urged Department of Health and Social Care minister Helen Whately to publish data on deaths reported to the Learning Disabilities Mortality Review Programme (LeDer). Earlier this week NHS England and NHS Improvement told HSJ the weekly data it is receiving from the national learning disability morality review programme (LeDer) on suspected and confirmed deaths of those with learning disabilities and autism from COVID-19 would not be published until next year. In her letter Ms Liz Kendall said the Government should “immediately” release the deaths notifications being provided by LeDer along with a “retrospective” analysis from the beginning of the pandemic. Read full story Source: HSJ, 7 May 2020 -
News Article
Coronavirus: 'Frailty score' plan angers special needs parents
Patient Safety Learning posted a news article in News
New guidelines for assessing people with coronavirus who go to hospital were amended after an outcry from parents of children with special needs. The emergency guidelines published by the National Institute for Health and Care Excellence (NICE) are designed to help determine how much treatment a patient will receive. Those deemed "completely dependent for personal care for whatever reason" will be offered end-of-life care rather than restorative treatment. This now excludes people with learning difficulties or cerebral palsy. In a statement NICE said the system was "not perfect" but was designed to support hospital medics "during this very difficult period of intense pressure". "We welcome the recent clarification that the Clinical Frailty Score should not be used in certain groups," it said. The updated guidelines now state that it "may not perform as well in people with stable long-term disability" and suggests that it is not used in those cases. Read full story Source: BBC News, 26 March 2020 -
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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News ArticleThe Care Quality Commission (CQC) missed multiple opportunities to identify abuse of patients at a privately run hospital and did not act on the concerns of its own members, an independent review has found. Bosses at the CQC have been criticised in an independent report by David Noble into why the regulator buried a critical report into Whorlton Hall hospital, in County Durham, in 2015. His report published today said the CQC was wrong not to make public concerns from one of its inspection teams in 2015. “The decision not to publish was wrong,” his report said, adding: “This was a missed opportunity to record a poorly performing independent mental health institution which CQC as the regulator, with the information available to it, should have identified at that time.” Read full story Source: The Independent, 22 January 2020
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News Article
NHS England asked ‘inadequate’ hospital to admit patient despite ban
Patient Safety Learning posted a news article in News
NHS England asked an “inadequate” hospital for people with learning disabilities and autism to admit a patient, despite the service having a “voluntary” ban on admissions in place — and shortly before inspectors decided to impose a legal restriction. The provider said it was an “exceptional case”, where the individual “had several failed placements”, and had stayed at the hospital — Jeesal Cawston Park in Norfolk — “in the past”. However, it appears to highlight the shortage of good quality accommodation and placements available and pressure on commissioners to make use of “inadequate” facilities. Read full story (paywalled) Source: HSJ, 21 January 2020 -
News Article
Death review backlog still growing despite NHSE commitment
Patient Safety Learning posted a news article in News
A backlog of thousands of deaths of people with learning disabilities awaiting official review has grown further, despite NHS England committing in spring last year to “address” the buildup. Information obtained by HSJ shows the number of incomplete reviews increased slightly between May and November last year – from 3,699 to 3,802. The “national learning disabilities mortality review” programme – known as LeDeR – was launched in 2016 and is meant to review all deaths of people aged four and over. Mencap head of policy and public affairs, Dan Scorer, said: “It is unacceptable that thousands of deaths have still not been reviewed despite NHS England announcing further funding to make sure all reviews were carried out quickly and thoroughly. These latest figures show that little progress has been made; the programme is still failing to address outstanding reviews as well as keep pace with incoming referrals." “Behind these figures are families whose loved ones’ deaths may have been potentially avoidable and they have a right to know that health and care services are learning and acting on LeDeR reviews’ recommendations.” Read full story (paywalled) Source: HSJ, 8 January 2020 -
Community Post
Reasonable adjustment care plans....can any one help?
Claire Cox posted a topic in Learning disabilities
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Hi All, I was looking through a recent coroners case ( https://www.judiciary.uk/wp-content/uploads/2020/01/Julie-Taylor-2019-0454.pdf ) Where a learning disability patient deteriorated while in an acute care setting. One of the recommendations was that the Trust should have used a 'reasonable adjustment care plan'. I haven't heard or seen one of these before. So I had a quick look on the internet and found this. http://www.bristol.ac.uk/sps/media/cipold_presentations/workshop3presentation1-linda-swann.pdf Does anyone else use a care plan that they wouldn't mind sharing? Thanks - Claire -
Content ArticleThis is an easy read document explaining the importance of sharing information about your support needs. These are sometimes called reasonable adjustments.
