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News ArticleThroughout the pandemic, people with learning disabilities and autism have consistently been let down. A lack of clear, easy-to-understand guidance, unequal access to care and illegal “do not resuscitate” instructions have exacerbated the inequalities many people have long faced. It is crucial we do not forget those who have constantly been at the back of the queue: people with learning disabilities and autism. The impact cannot be ignored: research shows that 76% of people with learning disabilities feel they do not matter to the government, compared with the general public, during the pandemic. And data shows the danger of contracting COVID-19 for people with learning disabilities and autism is much higher than for the wider population. Public Health England has said the registered COVID-19 death rate for people with learning disabilities in England is more than four times times higher than the general population. But experts estimate the true rate is likely to be even higher, since not all deaths of people with learning disabilities are registered in the databases used to collate the findings. The reasons the pandemic has impacted people with learning disabilities so disproportionately are systemic, and a result of inequalities in healthcare services experienced for generations. Yes, some individuals are more clinically vulnerable, on account of the co-morbidities and complications associated with their learning disability. For many people, however, poorer outcomes after contracting the virus are due to non-clinical issues and inequalities in accessing healthcare services. This is inexcusable. The government must prioritise vaccinations for the 1.5 million people with learning disabilities and 700,000 with autism. Putting this long-overlooked group at the top of the vaccine queue would help address the systemic health inequalities learning disabled people face. Read full story Source: The Guardian, 15 December 2020
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Staff 'missed opportunities' to save patient
Patient Safety Learning posted a news article in News
Staff at a mental health unit missed "multiple opportunities" to realise a woman had become unwell before she died, a coroner has said. Sian Hewitt, 25, died at Milton Keynes Hospital last year after collapsing at the nearby Campbell Centre. Coroner Tom Osborne said there was "a failure to start effective CPR". A spokesman for the centre said changes have been made to how care is delivered. Ms Hewitt, who had Asperger's syndrome and bipolar disorder, was admitted to the inpatient unit on 13 March 2019. She died less than a month later on 6 April 2019 at Milton Keynes Hospital, where she was taken after collapsing on Willow Ward at the centre. An inquest concluded she died of a pulmonary embolism, caused when a blood clot travels to the lungs. In a Prevention of Future Deaths Report, Mr Osborne said the centre failed to carry out a risk assessment and there was a delay in administering a drug resulting in "her mania not being brought under control". His report said the "failure to recognise how seriously ill she had become" had "resulted in lost opportunities to treat her appropriately that may have prevented her death". He said her death suggested the NHS was "unable to provide a place of safety for those who are suffering from Asperger's syndrome" or other forms of autism "when they are also suffering additional mental health problems such as bipolar". Read full story Source: BBC News, 4 December 2020 -
Content ArticleNow called Right support, right care, right culture, the guidance (published on 8 October 2020), outlines three key factors that CQC expects providers to consider if they are, or want to care for autistic people and/or people with a learning disability: Right support: The model of care and setting should maximise people's choice, control and independence Right care: Care should be person-centred and promote people's dignity, privacy and human rights Right culture: The ethos, values, attitudes and behaviours of leaders and care staff should ensure people using services lead confident, inclusive and empowered lives
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After scandals like Winterbourne View, why is basic decency still remarkable?
Patient Safety Learning posted a news article in News
In late July 2019, Sara Ryan tweeted asking families with autistic or learning disabled children to share their experience of “sparkling” actions by health and social care professionals. She was writing a book about how professionals could make a difference in the lives of children and their families. "These tweets generated a visceral feeling in me, in part because of the simplicity of the actions captured. Why would you not ring someone after a particularly difficult appointment to check on them? Isn’t remembering what children like and engaging with their interests an obvious way to generate good relationships? Telling a parent their child has been a pleasure to support is commonplace, surely?" Sara's own son, Connor, was left to drown in an NHS hospital bath while nearby staff finished an online Tesco order. "Certain people, children and adults, in our society are consistently and routinely positioned outside of 'being human', leading to an erasure of love, care and thought by social and healthcare professionals. They become disposable." What has become clear to Sara is how much the treatment of people and their families remains on a failing loop, despite extensive research, legislative and policy change to make their lives better, and potentially transformative moments like the exposure of the Winterbourne View scandal. At the heart of this loop are loving families and a diverse range of allies, surrounded by a large cast of bystanders who, instead of fresh eyes, have vision clouded by ignorance and sometimes prejudice. "To rehumanise society, we need more people with guts and integrity who are prepared to step up and call out poor practice, and to look afresh at how we could do things so much better with a focus on love and brilliance." Read full story Source: The Guardian, 27 October 2020 Sara Ryan's book: Love, learning disabilities and pockets of brilliance: How practitioners can make a difference to the lives of children, families and adults -
Content ArticleI believe all clinicians should read this latest report. There is so much to be learned and so many changes in clinical practice that can be made right away. Since 2018, I have been teaching using Oliver's tragic story to promote reflection on best practice in prescribing and in implementing the Mental Capacity Act. I could write a lot here; however, I believe this is a report all clinicians, and especially all prescribers, need to read in full. A summary of how I see this (or indeed how any individual sees it) it will not be adequate.
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Content ArticleSummary of recommendations Taking the learning from good practice, the CQC want to see tangible progress on four key areas. Below is a summary of the CQC's recommendations. People with a learning disability and or autistic people who may also have a mental health condition should be supported to live in their communities. This means prompt diagnosis, local support services and effective crisis intervention.People who are being cared for in hospital in the meantime must receive high-quality, person-centred, specialised care in small units. This means the right staff who are trained to support their needs supporting them along a journey to leave hospital.There must be renewed attempts to reduce restrictive practice by all health and social care providers, commissioners and others. We have seen too many examples of inappropriate restrictions that could have been avoided. We know in absolute emergencies this may be necessary, but we want to be clear – it should not be seen as a way to care for someone.There must be increased oversight and accountability for people with a learning disability, and or autistic people who may also have a mental health problem. There must be a single point of accountability to oversee progress in this policy area.
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News ArticleThe Care Quality Commission (CQC) has called for ‘ministerial ownership’ to end the ‘inhumane’ care of patients with learning difficulties and autism in hospital – after finding some cases where people had been held in long-term segregation for more than 10 years. Following its second review into the uses of restraint and segregation on people with a learning difficulty, autism and mental health problems, the CQC has warned it “cannot be confident that their human rights are upheld, let alone be confident that they are supported to live fulfilling lives”. The review was ordered by health and social care secretary Matt Hancock in late 2018 in response to mounting concerns about the quality of care in these areas. According to the report, published today, inspectors found examples people being in long-term segregation for at least 13 years, and in hospital for up to 25 years. It also found evidence showing the proportion of children from a black or black British background subjected to prolonged seclusion on child and adolescent mental health wards was almost four times that of other ethnicities. Looking at care received in hospital the CQC found many care plans were “generic” and “meaningless” and patients did not have access to any therapeutic care. Reviewers also found people’s physical healthcare needs were overlooked. One women was left in pain for several months due to her provider failing to get medical treatment. The regulator also reviewed the use of restrictive practices within community settings. While it found higher quality care, and the use of restrictive practices was less common, it said there was no national reporting system for this sector. Read full story (paywalled) Source: HSJ, 22 October 2020
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News ArticleAn independent review found that commissioners’ investigation of a young boy’s death was ‘mismanaged’, and heard allegations that the person who coordinated it was bullied over the contents. The independent review, commissioned by NHS England, has published its final report following an investigation into Bristol, North Somerset and South Gloucestershire clinical commissioning group’s LeDer review into the death of Oliver McGowan. Chaired by Fiona Ritchie, the independent review was commissioned last year after evidence emerged that the CCG had rewritten earlier findings of the review, removing suggestions his death at North Bristol Trust in 2016 was avoidable. Oliver died in November 2016 after being given anti-psychotic medication against his own and his parents’ wishes and despite medical records showing he had an intolerance to anti-psychotics. He developed severe brain swelling because of the drugs and died.A local LeDer review — part of a programme aimed at improving care based on deaths among people with learning disabilities — was launched in 2017, seven months after his death, by the CCG (then operating as three separate organisations), then published in 2018. In 2018, a coroner concluded Oliver’s care prior to his death was “appropriate” and made no recommendations. His death is also currently the subject of a police investigation. The lead reviewer (Ms A) stated in her panel interview that during the time she was undertaking this LeDeR she had felt bullied, overworked and overly stressed by the demands placed on her by the various correspondences with solicitors and her line management. The fact that Ms A believed she was isolated and unsupported during this review illustrates evident failures in the CCG assurance and management processes at the time. In a final report by the subsequent independent review, published today, the panel led by Ms Ritchie “unanimously” agreed Oliver’s death was “potentially avoidable”. Read full story (paywalled) Source HSJ, 20 October 2020
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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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‘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 -
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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 -
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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 -
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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 -
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Autism Act 2009
Claire Cox posted an article in Legal matters
The Act did two key things: Put a duty on the Government to produce and regularly review an autism strategy to meet the needs of autistic adults in England. The first ever strategy for autistic people in England, Fulfilling and rewarding lives, was published in 2010 with a commitment to review this strategy three years later. The new strategy, Think Autism, was published in April 2014. Put a duty on the Government to produce statutory guidance for local authorities to implement the strategy locally.
