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Showing results for tags 'Autism'.
Found 122 results
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Content ArticleAutistic patients trapped in mental health units tell their stories, revealing a system of poor treatment, abuse and long stretches inside with their symptoms only getting worse.
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Content ArticleThis report details the findings of a thematic review of Safe and wellbeing reviews (SWRs) between October 2021 and May 2022. SWRs are undertaken for children, young people and adults that are autistic and/or have a learning disability who are being cared for in a mental health inpatient setting. SWRs are part of the NHS response to the safeguarding adults review concerning the tragic deaths of Joanna, Jon, and Ben at Cawston Park Hospital, who were each detained for a long period of time and did not receive appropriate care.
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Content ArticleThe STOMP and STAMP programme of work is about making sure children and young people with a learning disability, autism or both are only prescribed the right medication, at the right time and for the right reason. This leaflet produced by Royal College of Paediatrics and Child Health and NHS England provides information to parents about psychotropic medicines.
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Content ArticleIn July the Health and Care Act 2022 introduced a requirement that regulated service providers ensure their staff receive training on learning disability and autism which is appropriate to the person’s role. The Oliver McGowan Mandatory Training on Learning Disability and Autism is the standardised training that was developed for this purpose and is the government's preferred and recommended training for health and social care staff to undertake. It is named after Oliver McGowan, whose death shone a light on the need for health and social care staff to have better training. It is the only training with permission to include Paula McGowan OBE, telling Oliver's story and explaining why the training is taking place. An elearning package is the first part of both Tier 1 and Tier 2 of the Oliver McGowan Mandatory Training and is now live. Everyone will need to do the elearning no matter where they work and what tier they need to complete. The next part is either a live one hour online interactive session for those needing Tier 1,or, a 1-day face to face training for people who require Tier 2.
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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 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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Content ArticleThe mortality rates for people with autism spectrum disorder (ASD) are double those of the general population and researchers believe unmet mental health needs may be a factor. The researchers’ results were derived from an Australian-first University of New South Wales (UNSW) study, which analysed linked data sets on death rates, risk factors and cause of death for 36,000 people on the autism spectrum. While cancer and circulatory diseases are the leading cause of deaths in the general population, injury and poisoning – including accidents, suicide and deaths related to self-harm – were the most common causes for people with ASD. GP and autism advocate Dr James Best told newsGP he was not surprised by the results, but that they did confirm people with ASD have a different set of health risk factors.
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Content ArticleThis survey from Kopecky et al. assessed the in-hospital needs of patients diagnosed with autism spectrum disorders (ASDs).
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Content ArticlePatient safety is the number one priority in health care as safety is considered at every level of a healthcare organisation (e.g., building, equipment, communication, processes for medications, treatments, and surgical procedures). Addressing the welfare of patients can be challenging, yet for some of the most vulnerable patients (e.g., special needs, disabilities and mental and social health issues), even the most routine nursing requests can put them at a safety risk. Simulations provide an opportunity for nursing students and professional nurses with realistic experiences caring for individuals with unique needs, especially when safety is a major concern.
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Content ArticleAs the number of Pennsylvanians diagnosed with autism spectrum disorder (ASD) continues to grow, healthcare facilities are seeing an increase in the number of these individuals seeking care. Negative interactions with the healthcare system and concerns about the quality of care provided to this population have been reported by individuals with ASD, their families, and healthcare providers. The Pennsylvania Patient Safety Authority received 138 reports of events involving patients with ASD from July 2004 through August 2014. Qualitative analysis of event report narratives revealed 12 patient safety concern themes involving patients with ASD. Injury to self or potential injury to self was identified as the most frequently reported concern (n = 75), followed by interference or lack of cooperation with care (n = 30). Other events included aggressive behavior and/or injury to others, use of chemical or physical restraints, patient communication difficulties, and caregiver communication difficulties and/or consent issues. The patient safety concerns commonly encountered by ASD patients and their families as reported to the Authority are consistent with the concerns cited in the published literature. Resources such as those developed by the Western Pennsylvania Autism Services, Education, Resources, and Training Collaborative are available to help healthcare facilities improve care for this population.
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Content 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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Content ArticleThis paper in the Journal of Intellectual Disabilities and Offending Behaviour describes the nature and impact of a restraint reduction strategy implemented within a secure learning disability service in response to the national Positive and Safe programme. Once the programme was completed, the following results were achieved: prone restraint was eliminated mechanical restraint was eliminated 42% reduction in general use of restraint 42% reduction in use of seclusion 52% reduction in rapid tranquilisation.
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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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Content ArticlePresentation from Steve Turner at a NICE Associates Meeting on over prescribing of medication to patients with learning disabilities and reasonable adjustments. He highlights the death of Oliver McGowan and the lessons learnt.
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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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Content ArticleSignificant changes in how autistic people with a learning disability access and experience healthcare can and should be informed by stakeholders, including the patient and their family. This article, published by the University of Hertfordshire, provides different examples and suggestions from experts by parental experience.
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Content 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. -
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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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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Content Article
Our son’s final days
Claire Cox posted an article in Patient stories
NHS investigators are to meet the family of a young, autistic man - left starving and desperately thirsty in hospital while waiting for a delayed operation. Mark Stuart spent five days in agony and died following a catalogue of failings by NHS staff. His parents say they have been battling for answers for four years. These are the harrowing events that came days before the needless, avoidable death of Mark Stuart. Mark was a young man with autism.
