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EventuntilThe purpose of this event is to update anyone working to support people with learning disabilities and autistic people about the progress to date on the work currently taking place with partners to design, develop, trial and develop the training. It will allow stakeholders the opportunity to highlight issues arising from the trial. Who should attend? Anyone working to support people with learning disabilities and autism, including: Self advocates and user led groups Campaigners Health and social care employers Self-advocacy groups Training providers Commissioners of learning disability and autism services Register here
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Content ArticleThe COVID-19 pandemic has exposed huge problems with the way Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) decisions are made, understood and communicated with people with learning disabilities and their families and carers. There have been reports of unlawful blanket decision-making and of DNACPR orders noted without discussion with the people involved. In this webinar, the Palliative Care for People with Learning Disabilities (PCPLD) Network focus on some of the questions that have been raised over the past year. What exactly is DNACPR? Why are the terms DNR or DNAR unhelpful, confusing and potentially dangerous? In what circumstances is CPR not a good option, and DNACPR therefore appropriate? How should those decisions be made? Who should be involved? What if the person lacks capacity for a DNACPR decision – how can we make decisions based on best interest?
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Content ArticleOur Impact Films presents a feature short film on Autism in the London Borough of Sutton. Film maker Mohammed captures a very powerful message through this film that was represented from the perspective of young autistic participants. He highlights the importance of communication of young autistic people from diverse backgrounds. Through this film, the hope is to give the audience the chance to understand what life can be like being autistic and really celebrate the fact that differences don’t separate people but in-fact makes the diversity of society all the more valuable.
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Content ArticleThis policy aims to set out for the first time for the NHS the core aims and values of the LeDeR programme and the expectations placed on different parts of the health and social care system in delivering the programme from June 2021.
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Content ArticleThis webinar, organised by the Palliative Care for People with Learning Disabilities (PCPLD) Network, looks at lessons learnt from avoidable deaths of people with learning disabilities or autism. Drawing on the harrowing stories, of Oliver McGowan and Richard Handley, they discuss what can be done to prevent future deaths.
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Content ArticleHealth Education England and Skills for Care are working in partnership on the Oliver McGowan Mandatory Training trials in Learning Disability and Autism. This video tells Oliver’s Story and why the training is taking place.
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EventuntilPeople with learning disabilities are at risk of dying too young, and dying unnecessarily. The Learning Disability Mortality Review (LeDeR) in England has found that too often, those deaths are a result of failings within health and social care provision. Reflecting on this has never been more important – during the pandemic, the inequalities that many people with learning disabilities face have been put into stark focus. Today we focus on the stories of Oliver’s and Richard's deaths, and on what lessons we can all learn from this. Oliver McGowan died in 2016. He was 18 years old. Oliver had mild learning disabilities and autism. A recent independent LeDeR review concluded Oliver’s death was avoidable. Richard Handley died in 2012 at the age of 33, from complications arising from constipation. He had Down syndrome and mental health problems. The inquest into his death concluded that their had been “gross failures” in his care and treatment. Paula McGowan and Sheila Handley share the stories of their sons’ lives, and of the healthcare failings that contributed to their deaths. Oliver’s and Richard’s stories are profoundly important and profoundly moving. Register
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Content ArticleA free book about the experiences of people with learning disabilities and/or autism during the pandemic – ‘Peter and Friends talk about Covid-19 and having a learning disability and/or autism‘. From an idea from Peter Cronin, London South Bank University, Oxleas NHS Trust and the Foundation for People with Learning Disabilities drew together stories about the experiences of people with learning disabilities and/or autism during the pandemic in the UK and across the world.
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Content ArticleMany families and autistic individuals have raised concerns over early deaths in autistic people. Research now confirms the true scale of the mortality crisis in autism: autistic people die on average 16 years earlier than the general population. For those with autism and learning disabilities, the outlook is even more appalling, with this group dying more than 30 years before their time. Yet there is still very limited awareness and understanding of the scale of premature mortality for the 700,000 autistic people in the UK and hence very little action to date to reduce it. This hidden crisis demands a national response.
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Community Post
Landmark reform of mental health laws - what are your views?
Steve Turner posted a topic in Mental health
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The recent press release from the UK Government outlines a White Paper which contains the reforms: "Major reform of Mental Health Act will empower individuals to have more control over their treatment and deliver on a key manifesto commitment. Reforms will deliver parity between mental and physical health services and put patients’ views at the centre of their care. Plan will tackle mental health inequalities including disproportionate detention of people from black, Asian and minority ethnic (BAME) communities, the use of the act to detain people with learning disabilities and autism, and improve care for patients within the criminal justice system..." The report covers: "A package of reforms has been set out in a wide-ranging new Reforming the Mental Health Act white paper, which builds on the recommendations made by Sir Simon Wessely’s Independent Review of the Mental Health Act in 2018. At the heart of the proposed reforms to the Mental Health Act is greater choice and autonomy for patients in a mental health crisis, ensuring the act’s powers are used in the least restrictive way, that patients receive the care they need to help them recover and all patients are viewed and treated as individuals. These reforms aim to tackle the racial disparities in mental health services, better meet the needs of people with learning disabilities and autism and ensure appropriate care for people with serious mental illness within the criminal justice system." Do you work for Mental Health services? Are you someone who uses Mental Health services? What are your views? -
Content ArticleThe Care Quality Commission (CQC) has published the second report of Professor Glynis Murphy’s independent review of its regulation of Whorlton Hall between 2015 and 2019. CQC commissioned Professor Murphy to conduct an independent review to look at whether the abuse of patients at Whorlton Hall could have been recognised earlier by the regulatory process and to make recommendations for how CQC can improve its regulation of similar services in the future. In addition, CQC asked Professor Murphy to conduct a review of international research evidence to look at how abuse is detected within services for adults with a learning disability and autistic people and how such detection can be improved. The first report of Professor Murphy’s review made a number of recommendations for CQC to strengthen its inspection and regulatory approach for mental health, learning disability and/or autism services. This second report outlines the progress that CQC has made to implement the recommendations. This includes publication of the final report of its review of restraint, seclusion and segregation; work on closed cultures and the development of a tool for rating support plans.
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Content ArticleThe information that care homes submit to CQC about the deaths of people in their care is published on a weekly basis as part of the Office for National Statistics (ONS) reporting on deaths. The ONS data is not broken down by whether the person who died had a disability. Supported by ONS, the Care Quality Commission (CQC) has completed a targeted piece of analysis to better understand the impact of coronavirus (COVID-19) on people with a learning disability, some of whom may also be autistic, and how the number of deaths during this period compares to the number of deaths last year. This analysis looked at all deaths notified to CQC between 10 April and 15 May from providers registered with CQC who provide care to people with a learning disability and/or autism (including providers of adult social care, independent hospitals and in the community), and where the person who died was indicated to have a learning disability on the death notification form.
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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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News Article
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 ArticleThe Care Quality Commission (CQC) has revised its “Registering the right support” guidance to make it clearer for providers who support autistic people and/or people with a learning disability. Following feedback from people who use services CQC has updated its guidance so it has a stronger focus on outcomes for people including the quality of life people are able to experience and the care they receive.
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News Article
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 ArticleThis is a book written to celebrate the humanity of people, and to share experiences of what brilliant care and support can look like for families with learning disabled or autistic children and adults. Sara Ryan steers clear of jargon and 'doublespeak' to conjure authentic experiences of families. Speaking with families and professionals, she conveys the love, laughter and joy which binds families and the harsh realities many face; of separation from loved ones, substandard care and frustration and helplessness in the face of inflexible services. From their experiences, Sara looks to capture those pockets of brilliance that families have encountered, and which outstanding practitioners have pioneered, for us all to learn from. We know so much about what support and services should look like in order to enable flourishing lives - this book aims to help families and professionals to achieve it, together.
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Content ArticleThis report, from the Care Quality Commission, looks at the use of restraint, seclusion and segregation in care services for people with a mental health condition, a learning disability or autistic people.
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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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Content ArticleA report by Fiona Ritchie OBE, Chair on behalf of Oliver’s Independent Panel for NHS England and NHS Improvement, has been published following an investigation into Bristol, North Somerset and South Gloucestershire clinical commissioning group’s Learning Disability Mortality Review (LeDeR) review into the death of Oliver McGowan.
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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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Content Article
Oliver's Campaign
Patient Safety Learning posted an article in Learning disabilities
Paula McGowan is a Multi Award-winning Activist who following the preventable death of her teenage son Oliver, has dedicated her life to campaigning for equality of Health and Social Care for Learning Disabled people and Autistic people. She is an Ambassador for several charities and organisations. Paula launched a parliamentary petition asking for all doctors and nurses to receive mandatory training in Learning disability and Autism awareness. She ferociously argued that autism must be included. On 22 October 2018, her petition was debated and gained cross party support. As a direct consequence Government announced that all NHS and Social Care Staff would receive The Oliver McGowan Mandatory Training in Learning Disability and Autism. On the Oliver's Campaign website you can find support, resources and blogs. -
News ArticleTen workers at a mental health unit have been suspended amid claims patients were "dragged, slapped and kicked". Inspectors said CCTV footage recorded at the Yew Trees hospital in Kirby-le-Soken, Essex, appeared to show episodes of "physical and emotional abuse". The details emerged in a Care Quality Commission (CQC) report after the unit was inspected in July and August. A spokeswoman for the care provider said footage had been passed to police. The unannounced inspections were prompted by managers at Cygnet Health Care, who monitored CCTV footage of an incident on 18 July. At the time, the 10-bed hospital held eight adult female patients with autism or learning difficulties. The CQC reviewed 21 separate pieces of footage, concluding that 40% "included examples of inappropriate staff behaviour". "People who lived there were subjected not only to poor care, but to abuse," a CQC spokesman said. Workers were captured "physically and emotionally abusing a patient", and failing to use "appropriate restraint techniques", the report said. It identified "negative interactions where staff visibly became angry with patients" and two cases where staff "dragged patients across the floor". "We witnessed abusive, disrespectful, intimidating, aggressive and inappropriate behaviour," the inspectors said. Read full story Source: BBC News, 23 September 2020
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Content ArticleBased on extensive interviews with the leaders of seven trusts in the NHS providing good or outstanding care to people with a learning disability and people with autism, and broader ongoing engagement with trusts providing these services, this report from NHS Providers sets out in detail the common themes behind high-quality care, offering detailed case studies of how these services have succeeded.
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News Article
