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Found 247 results
  1. Content Article
    Mandy Anderton is a Clinical Nurse specialising in learning disability and a hub Topic Leader. Last month we asked her how GP practices can help improve health outcomes for people with learning disabilities. In this new blog, Mandy talks in depth about the cross-system programme they launched in Salford to improve the health of people with learning disabilities and reduce inequalities across primary care. Mandy shares their award-winning poster (attached), summarising the programme’s activities and outcomes, and gives her top tips for delivering a successful patient safety improvement project.
  2. 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.
  3. 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.
  4. Content Article
    In 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. 
  5. Content Article
    The 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?
  6. Content Article
    Many 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.
  7. Content Article
    The 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.
  8. Content Article
    This 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.
  9. Content Article
    This 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.
  10. Content Article
    Clinically focused presentation on Oliver's story from Steve Turner, given to the NICE Medicines & Prescribing Associates on 1 May 2019.
  11. Content Article
    The Learning Disabilities Mortality Review (LeDeR) Programme is a world-first. It is the first national programme of its kind aimed at making improvements to the lives of people with learning disabilities. The University of Bristol is one of the partners in the programme, which is funded and run by NHS England. Reviews of deaths are being carried out with a view to improve the standard and quality of care for people with learning disabilities. People with learning disabilities, their families and carers have been central to developing and delivering the programme. Further information and useful resources can be found on the University of Bristol's website.
  12. Content Article
    Health 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.
  13. Content Article
    If you have a relative with a learning disability who is at risk of behaviour that challenges, you may want to find out more about Positive Behavioural Support (PBS). PBS provides support for a person, their family and friends to help people lead a meaningful life and learn new skills without unnecessary and harmful restrictions. It is not simply about getting rid of challenging behaviour, but with the right support at the right time the likelihood of behaviour that challenges is reduced. The Positive Behavioural Support Resource for Family Carers has been developed with The Challenging Behaviour Foundation.
  14. Content Article
    Positive Behavioural Support is a way of helping people with learning disabilities who are at risk of behaviour that challenges to have the best quality of life they can. If you have a learning disability and behaviour which others may call challenging behaviour, these booklets have been designed to help you think about what having a good life means for you.
  15. Content Article
    The PBS Academy is a collective of organisations and individuals in the UK who are working together to promote Positive Behavioural Support (PBS) as a framework for working with children and adults with learning disabilities who are at risk of behaviour that challenges. Developing local capacity and the competence of everyone involved in the delivery of evidence-based and high-quality supports to people with a learning disability and challenging behaviours is critical to the successful implementation of PBS. The following standards have been developed to guide practice and training. They are, in part, in direct response to the final report of the post Winterbourne consultation examining services in the UK for people with learning disabilities and/or autism published in February 2016, Time for change: The challenge ahead. This report acknowledges PBS as the recommended framework for working with people with learning disabilities at risk of behaviour that challenges.
  16. Content Article
    Developed by David Havard, this poster shows a number of ways in which reasonable adjustments can easily be made for patients with a learning disability.
  17. Content Article
    This annual report from the University of Bristol provides information about the deaths of people with a learning disability aged four years and over notified to the programme.
  18. Content Article
    Sinead Heneghan is a GP based in the North West of England with a passion for reducing health inequalities. In this interview for Patient Safety Learning, Sinead tells us how she made sure COVID-19 vaccinations were prioritised for people with learning disabilities, when national guidance advised otherwise. She also explains how they took the opportunity locally to combine these face-to-face immunisation appointments with annual health checks, identifying unmet health needs that needed addressing.
  19. Content Article
    Authors of this study, published in BMJ Open, conclude that people with learning disabilities appear to experience poorer patient safety outcomes in hospital. The involvement of family and carers, and understanding and effectively meeting the needs of people with learning disabilities may play a protective role. Promising interventions and examples of good practice exist, however many of these have not been implemented consistently and warrant further robust evaluation.
  20. Content Article
    This 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.
  21. Content Article
    This study in the International Journal for Equity in Health aimed to understand the care experiences of people with learning disabilities, and explore the potential patient safety issues that they and their carers raised. The authors examined the lived experience of care for people with learning disabilities through focus groups and narratives posted on the public platform Care Opinion. The study identified a series of safety inequities and gaps in systems affecting people with learning disabilities. The authors recommend considering interventions to protect against these inequities at a policy and organisational level and highlight that policy needs to span both health and social care.
  22. Content Article
    The 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.
  23. Content Article
    A Virtual Clinic was set up at an acute general hospital in the Mid-Essex area with the specific aim to co-ordinate the care of adults diagnosed with intellectual disabilities (ID) coupled with two or more long term conditions. This is one of the National Institute for Health and Care Excellence (NICE) shared learning case studies. NICE has over 800 examples showing how our guidance and standards can improve local health and social care services.
  24. Content Article
    Presentation 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.
  25. Content Article
    The UK Positive Behavioural Support (PBS) Competence Framework provides a detailed framework of the things that you need to know and the things that you need to do when delivering best practice PBS to people with learning disabilities who are at risk of behaviour that challenges. The objectives of the framework are that: More individuals with learning disabilities and behaviours that challenge will benefit from high-quality, evidence-based support delivered by competent professionals working as part of a multi-disciplinary team. Practitioners will benefit from professional development and occupational standards. Organisations supporting individuals with learning disabilities and behaviours that challenge will be able to employ practitioners with a greater degree of certainty about competence and quality. Commissioners will have a greater understanding of the nature and use of PBS in practice. Practice based research will contribute to the growing evidence base for PBS.
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