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Found 118 results
  1. Content Article
    A 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.
  2. Content Article
    The 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.
  3. Content Article
    In the summer of 2019, following a televised Panorama programme showing abusive care of people with learning disabilities and/or autism in Whorlton Hall (an independent hospital in the north of England), the Care Quality Commission (CQC) requested an independent review of its inspections of Whorlton Hall. Professor Glynis Murphy was appointed to conduct the review.
  4. Content Article
    There is little research focusing on how bereaved families experience NHS inquiries and investigations. Despite this gap, there is a consistent assumption that these processes provide families with catharsis. Drawing on her personal experiences of NHS investigations over a five‐year period after the death of her son, Connor Sparrowhawk, the author suggests the assumption of catharsis is misplaced and works to erase the considerable emotional ‘accountability’ labour that families undertake during these processes. She further question whether inquiries or investigations are an effective way of holding stakeholders to account. She concludes with two points: first, qualitative research is needed to better understand bereaved family experiences of inquiries and investigations and second, the ‘lessons learned’ objective underpinning inquiries should be replaced with ‘leading to demonstrable change’, which is what families typically want.
  5. Content Article
    What is the Autism Act? The Autism Act 2009 was the result of two years of active campaigning, with thousands of National Autistic Society members and supporters persuading their MPs to back Cheryl Gillan MP’s Private Members Bill. It is the only act dedicated to improving support and services for one disability.
  6. Content Article
    People with a learning disability have higher rates of morbidity and mortality than the general population and die prematurely. At least 41% of them die from respiratory conditions. They have a higher prevalence of asthma and diabetes, and of being obese or underweight in people. All these factors make them more vulnerable to coronavirus. There is evidence that people with autism also have higher rates of health problems throughout childhood, adolescence, and adulthood, and that this may result in elevated risk of early mortality. This guide, from NHS England, states the following key points should be addressed when assessing and treating a patient with a learning disability or with autism who is suspected of having or is known to have coronavirus: Be aware of diagnostic overshadowing Pay attention to healthcare passports Listen to parents/carers Make reasonable adjustments Understanding behavioural responses to illness/pain/discomfort Mental Capacity Act Ask for specialist support and advice if necessary Mental wellbeing and emotional distress. Please download the full guide for further detail.
  7. Content Article
    A list of guides that help to explain the coronavirus outbreak in an easy read format. Resources include those specifically designed for people with Downs Syndrome and learning disabilities. These guides and posters will help families, care providers and hospital staff communicate messages inclusively. 
  8. Content Article
    An NHS-Led Provider Collaborative is a group of providers of specialised mental health, learning disability and autism services who have agreed to work together to improve the care pathway for their local population. They will do this by taking responsibility for the budget and pathway for their given population. The Collaborative will be led by an NHS Provider who remains accountable to NHS England and NHS Improvement for the commissioning of high-quality, specialised services. These Collaboratives aim to ensure that people with specialist mental health, learning disability and autism needs experience high quality, specialist care, as close to home as appropriately possible. They seek to enable specialist care to be provided in the community to prevent people being in hospital if they don’t need to be, and to enable people to leave hospital when they are ready. This webpage explains the role of NHS-Led Provider Collaboratives and includes case studies that demonstrate how they are helping to transform specialised mental health services.
  9. Content Article
    This non-statutory guidance from the UK Government aims to support education, health and care settings and services in putting in place measures which will help them: understand the needs of children and young people, including the underlying causes of and triggers for their behaviour. develop strategies and plans to meet those needs and regularly review them as children change. adapt the environments in which children and young people are taught and cared for so as better to meet their needs. provide appropriate support for children and young people whose behaviour challenges, without the use of restraint or restrictive intervention. It sets out relevant law and guidance and provides a framework of core values and key principles to support: a proactive approach to supporting children and young people whose behaviour challenges. a reduction in the need to use restraint and restrictive intervention.
  10. Content Article
    This 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.
  11. Content Article
    Rizwana Dudhia shares in the Pharmaceutical Journal how a project she initiated to prevent the prescribing of inappropriate medication improved the quality of life for patients with learning disabilities and autism.
  12. Content Article
    Improving experiences and outcomes for children and adults who are autistic or have a learning disability, their families and carers Ask Listen Do resources are designed to: support organisations to listen, learn from and improve the experiences of children and adults who are autistic or have a learning disability, their families and carers make it easier for people, families and paid carers to give feedback, raise concerns and complain.
  13. Content Article
    This webpage outlines how the Care Quality Commission regulates providers supporting autistic people and people with a learning disability to enable the right support, right care and right culture.
  14. Content Article
    This NICE guideline covers services for children, young people and adults with a learning disability (or autism and a learning disability) and behaviour that challenges. It aims to promote a lifelong approach to supporting people and their families and carers, focusing on prevention and early intervention and minimising inpatient admissions.
  15. Content Article
    This report by the charity INQUEST, which provides expertise on state related deaths and their investigation to bereaved people, highlights that families are facing persistent challenges following the death of a loved one in mental health services. Based on conversations at one of INQUEST’s Family Consultation Days, the report shows that families face numerous hurdles during investigations and inquests into their loved ones’ deaths, and that processes are not delivering the change required. The Family Consultation Day heard from 14 family members who were bereaved by deaths in the care of mental health services or settings for people with learning disabilities and/or autism, and had faced or were going through inquests and investigations.
  16. Content Article
    The LeDeR programme, funded by NHS England and NHS Improvement, was established in 2017 to improve healthcare for people with a learning disability and autistic people. LeDeR aims to: Improve care for people with a learning disability and autistic people. Reduce health inequalities for people with a learning disability and autistic people. Prevent people with a learning disability and autistic people from early deaths. LeDeR summarises the lives and deaths of people with a learning disability and autistic people who died in England in annual reports. The 2021 reports were made by researchers at King’s College London collaborating with academic partners at the University of Central Lancashire and Kingston-St George’s University, London, copies of which can be accessed from the link below along with a video summary of the findings and “TakeHome” posters.
  17. Content Article
    In 2016, 18 year-old Oliver McGowan died after being inappropriately prescribed antipsychotic medications. Oliver had high functioning autism, mild hemiplegia and epilepsy, and had experienced previous well-documented adverse reactions to these medications. On admission to hospital, both Oliver and his parents had been clear about the fact that he should not be given any form of antipsychotic. In this interview for Woman's Hour, Oliver's mum Paula talks about Oliver and the events that led to his death, as well as discussing new mandatory training for all health and social care staff that was passed into law as part of the Health and Care Act 2022 - The Oliver McGowan Mandatory Training in Learning Disability and Autism. This will ensure that all staff working health and social care receive learning disability and autism training appropriate for their role, which will in turn improve outcomes for people with learning disabilities. The interview can be found at 34 minutes 10 seconds into the programme.
  18. Content Article
    This document outlines the UK Government's response to the Health and Social Care Select Committee report on the treatment of autistic people and people with learning disabilities, published in July 2021. It contains responses to three main areas of interest raised by the Committee's report: Community support: reducing the number of autistic people and people with learning disabilities in inpatient facilities, and the benefits of the Trieste model The use of restrictive practices in inpatient facilities and wider concerns relating to the appropriateness and continued use of such facilities The wellbeing of and accountability for autistic people and people with learning disabilities including the creation of a new role: the Intellectual Disability Physician, and the need for independent reviews into the deaths of autistic people and people with learning disabilities
  19. Content Article
    The poor treatment of autistic people and people with learning disabilities has been a long-standing problem for the NHS and care system. Although successive governments have focused on supporting autistic people and people with learning disabilities to live independent and fulfilled lives in the community, over 2,055 people remain in secure institutions where they are unable to live fulfilled lives and are often subject to unacceptable and inhumane treatment. This report by the Health and Social Care Select Committee chaired by Jeremy Hunt MP outlines the finding of the committee's Inquiry into the treatment of autistic people by health and care services.
  20. Content Article
    People with a learning disability and autistic people should have the right support in place to live an ordinary life and fulfil their aspirations, in their own home. This action plan from the Department of Health and Social Care (DHSC) aims to strengthen community support for people with a learning disability and autistic people, and reduce reliance on mental health inpatient care. This action plan outlines the government's policy to achieve this by: strengthening community support. reducing the overall reliance on specialist inpatient care in mental health hospitals. improving the experiences of people with a learning disability and autistic people across public services such as health, social care, education, employment, housing and justice. It brings together the commitments that have been made by different organisations to realise these aims, and aims to drive long-term change for people with a learning disability and autistic people.
  21. Content Article
    This report by the Care Quality Commission (CQC) looks what people with a learning disability and autistic people experience when they need physical health care and treatment in hospital. People with a learning disability face huge inequalities when accessing and receiving health care, and initiatives to try and improve people’s experiences have not brought about improvement at the speed or scale needed. The consequences of this are serious, as when people do not get care and support that meets their individual needs, it can lead to avoidable harm and premature death. Equity for people with a learning disability and autistic people is therefore a critical patient safety issue.
  22. Content Article
    Lifelong and persistent sensory sensitivities are a diagnostic characteristic of autism. As public transport, waiting areas and other clinical settings are more likely to be inaccessible to autistic people, they may reach crisis before receiving healthcare. Inpatient settings without adaptations for autistic people’s sensory needs may risk autistic people being distracted or overwhelmed during therapy and/or excluded and segregated from the ward environment. Environments that are not ‘autism friendly’ can: impede the effectiveness, or hamper the delivery of, therapeutic intervention exacerbate poor mental health lead to the use of restrictive practices such as restraint, seclusion or segregation. NHS England provides this resource pack to improve the sensory environment throughout healthcare.
  23. Content Article
    Autistic 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.
  24. Content Article
    This 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.
  25. Content Article
    The 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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