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Found 24 results
  1. Content Article
    I 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.
  2. Content Article
    Summary 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.
  3. News Article
    The 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
  4. News Article
    An 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
  5. News Article
    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
  6. News Article
    Figures 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
  7. News Article
    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
  8. News Article
    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
  9. News Article
    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
  10. News Article
    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
  11. News Article
    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
  12. Content Article
    Easy read guides and advice on Coronavirus: Mencap – Information about coronavirus Down’s Syndrome Association – Coronavirus. What is it? How to stay safe? Inclusion International – COVID 19: Our members resources and processes Inclusion North- Easy read information guide about coronavirus BBC – Coronavirus information: What should I do? (Infographics) Easy read posters Photosymbols set of easy read posters about coronavirus (UK) including: Poster 1 - How to stay safe Poster 2 - Health issues Poster 3 - What if you get ill? Poster 4 - Staying at home Poster 5 - Please don't spread it Poster 6 - You must stay at home
  13. Content Article
    The investigation identified: There is an opportunity to clarify the consent requirements for diagnostic imaging facilitated by a general anaesthetic. There is variation in the information given to patients regarding anaesthesia at the point of referral for an MRI scan under general anaesthetic. The observations and examinations to be routinely performed in pre-anaesthetic assessment are not defined nationally. The investigation found variation in the hospitals it visited. Children coming into hospital for an MRI scan who had been assessed as fit for anaesthetic were perceived as “well” by ward staff. Children with autism, learning disabilities and/or learning difficulties often find clinical environments distressing, which may be reflected in their physiological observations. This may result in diagnostic overshadowing, where problems such as autism (or a medical condition) are attributed as the cause of other new problems, rather than considering other underlying causes, thereby leaving other co-existing conditions potentially undiagnosed. Children with autism, learning disabilities or learning difficulties may benefit from reasonable adjustments being made when attending hospital. Electronic flagging systems can help staff identify patients who may benefit from reasonable adjustments. Hospital passports provide valuable information to assist with implementation of these adjustments. The model of care for learning disability nursing teams is not standardised nationally. There is an opportunity to enhance the existing published guidance available to assist clinicians involved in general anaesthetics to prepare for adverse events in the MRI scanning environment. Professional networks for anaesthetists provide the opportunity for shared learning and consensus regarding best practice. It is challenging to comply fully with the existing published standards for anaesthetic equipment used in MRI environments.
  14. News Article
    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
  15. Content Article
    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.
  16. News Article
    The 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
  17. Content Article
    Small differences can lead to big changes which can escalate if carried out by many people on numerous occasions. Big 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. Blair et al identified the following simple steps: Take time to be with the person and their families to understand their lived experiences. Pick up not only on what is said, but also what is not said, and avoid hurrying the interaction. It is essential to remember that every interaction counts and each contact matters. Health professionals only spend a fraction of time with a person, so it is vital to gain as much insight as possible from the person and those who know them best, and to consider all that is being relayed, verbally and non-verbally. In doing so, healthcare practitioners can refocus how they interpret what they see and develop their understanding that what is seen superficially is not all that there is.
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