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Found 245 results
  1. Content Article
    This animation aims to help staff and employers across health and social care understand Oliver's Training and why it is so vitally important. It was co-designed and co-produced with autistic people and people with a learning disability. Oliver McGowan died aged 18 in 2017 after being given antipsychotic medication to which he had a fatal reaction. He was given the medication despite his own and his family's assertions that he could not be given antipsychotics, and the fact that this was recorded in his medical records. The animation tells his story and highlights the increased risks facing people with learning disabilities and autism when accessing healthcare.
  2. Content Article
    In my 15 years focusing on developing drink thickening solutions for dysphagia patients, the intersection of dysphagia management and patient safety has become increasingly apparent. Dysphagia, or difficulty swallowing, presents not only as a significant health challenge but also as a critical patient safety issue. The condition's underdiagnosis, particularly in vulnerable populations, heightens the risk of severe complications, including choking, aspiration pneumonia, dehydration and the profound fear of choking that can lead to malnutrition.
  3. Content Article
    This document from the Department of Health and Social Care (DHSC) sets out how health and care systems should work together to support discharge from all mental health and learning disability and autism inpatient settings for children, young people and adults. It sets out best practice on: how NHS bodies and local authorities should work closely together to support the discharge process and ensure the right support in the community, and provides clarity in relation to responsibilities  patient and carer involvement in discharge planning.
  4. Content Article
    This animation was created to highlight the specific issues for people with learning disabilities in relation to psychological trauma.
  5. News Article
    One of Britain’s three high-security hospitals – where notorious people including Ian Huntley and Charles Bronson have been detained – is so understaffed that neither workers nor patients are safe, a damning new report has found. Rampton Hospital in Nottingham faces severe staff shortages, leading workers to restrain patients and lock them away in their rooms and putting patients at risk of self harm, according to the Care Quality Commission. In a report looking into the hospital, inspectors – who rated the hospital as inadequate – said there were around half the staff needed on one ward. In one example of those at the hospital being at risk, a patient self-harmed with glass from their watch, while another was able to harm themselves with a CD while they were confined to their room. One deaf patient was secluded several times on another ward for “being loud”, according to the CQC. “We spoke with people in the learning disabilities services who told us they sometimes get locked in their room from dinner time until the next morning,” the report said. “They told us that they don’t like being locked in their rooms.” Read full story Source: The Independent, 17 January 2024
  6. Content Article
    The framework has been produced to guide organisations providing residential or supported living accommodation to adults with a learning disability who may have been impacted by a trauma history. Whilst it can be difficult to assess the impact of trauma for many people with a learning disability, particularly those with a more severe/profound learning disability, it is important to recognise the possibility of the impact of psychological trauma. Providing care practices that are trauma informed, person-centred and growth promoting are less likely to be re-traumatizing for those already exposed to trauma.
  7. Content Article
    This study published in BMJ Quality & Safety identified factors acting as barriers or enablers to the process of healthcare consent for people with intellectual disability and to understand how to make this process equitable and accessible. The study found that multiple reasons contribute to poor consent practices for people with intellectual disability in current health systems. Recommendations include addressing health professionals’ attitudes and lack of education in informed consent with clinician training, the co-production of accessible information resources and further inclusive research into informed consent for people with intellectual disability. Related reading on the hub: Accessible patient information: a key element of informed consent
  8. Content Article
    In this article for the Byline Times, Saba Salman highlights the results of the latest NHS-funded annual review of deaths among people with learning disabilities. The report lays bare how people with learning disabilities are less likely to survive health problems that are preventable and treatable than those without learning disabilities. Researchers at King’s College London, the University of Central Lancashire and Kingston University London reviewed the deaths of 3,648 people with a learning disability. Overall, almost half died an avoidable death, compared to two in 10 in the general population. The median age of death in was 63 years, which is around 20 years less than for people without learning disabilities.
  9. Content Article
    The 2022 LeDeR report seeks to investigate and learn from the avoidable deaths of people with a learning disability in England. The report, which is produced for NHS England, was led by researchers from the Institute of Psychiatry, Psychology & Neuroscience (IoPPN) at King’s College London, the University of Central Lancashire, and Kingston University London. Researchers found: gentle but continuous improvement in the median age of death for people with a learning disability in 2022. In 2018, the median age of death for adults with a learning disability was 61.8 years but has since risen to 62.9 in 2022. If children are included, the age at death increased from 60.1 years in 2018 to 62.7 in 2022. a drop in the number of avoidable deaths since 2021 – 42% of deaths were deemed “avoidable” for people with a learning disability in 2022 compared to 50% in 2021. a sharp drop in the number of deaths due to Covid-19 – from 24% of all causes of death in 2020 to 19% in 2021 and 6% in 2022 for adults with a learning disability. "While there are positives, it’s also clear that more work still needs to be done. People from ethnic minority groups died younger, and there is a need to improve access to care pathways to improve prevention and better manage some conditions in people with a learning disability, such as cancer, lung, heart and circulatory conditions. We also identified a concerning effect on excess deaths of people with a learning disability during heatwaves. This means care homes and hospitals looking after people with a learning disability need to be better prepared for weather events in the light of climate change. Improvements during 2022 should certainly be celebrated, but we shouldn’t overlook how much we still don’t know." Professor Andre Strydom, Chief Investigator and Professor in Intellectual Disabilities at King’s IoPPN. Read the full report via the link below.
  10. Content Article
    This guidance was developed by the Mental Health and Learning Disability Nurse Directors Forum in collaboration with experts by experience and the Care Quality Commission.Four key themes were identified:Co-design evidence-based approach ligature harm reduction planning: Incorporate local expertise through collaborations with staff and experts by experience when reviewing ligature harm risks.Therapeutic environment: Consider the balance of safety versus privacy and dignity when assessing and controlling for potential ligature harm, including the extent to which restrictions may impact on patient recovery.Individualised risk assessment: Focus on individualised approaches to risk assessment rather than tools to predict future suicide risk and treatment. Minimise use of blanket restrictions to manage known risks to aid reduction in institutional dependence.Integration into other aspects of treatment and care planning: Consider the role of other aspects of treatment and support (for example, levels of observations) and how risk assessment should be integrated into care planning and therapeutic risk assessment and co-produced safety planning, where possible.Read the full guidance via the link below.
  11. Content Article
    This study in the Journal of Applied Research in Intellectual Disabilities aimed to  share rich detail of the emotional and physical impact on children and young people with intellectual disabilities of attending hospital, from their own and their parent's perspective. The authors found that the multiple and compounding layers of complexity surrounding hospital care of children and young people with intellectual disabilities resulted in challenges associated with loss of familiarity and routine, undergoing procedures, managing sensory overload, managing pain and having a lack of safety awareness. They concluded that an individualised approach to care is needed to overcome these issues.
  12. News Article
    Two young people facing mental health crises were left on paediatric wards for months while different agencies across a health system struggled to find appropriate placements. The patients – who were both autistic and had learning disabilities, with special educational needs – were admitted to Maidstone and Tunbridge Wells Trust (MTW) last year after attending emergency departments more than 10 times within a two-month period. They were left on a paediatric ward – one of the patients for four months – as this was the “only available place of safety as opposed to the optimum setting to meet their needs,” according to Kent and Medway Integrated Care Board’s “learning review” of children and young people with complex needs, which the two cases prompted. The review, which HSJ obtained under a Freedom of Information request, revealed several problems with joint working, despite a multidisciplinary team meeting regularly to discuss the young patients’ needs. Since the review, a new escalation process has been introduced, urgent mental health risk assessments in the community have been enhanced and a three-month pilot of a self-harm service has been implemented at Tunbridge Wells Hospital, part of MTW. Read full story (paywalled) Source: HSJ, 17 November 2023
  13. Content Article
    People with learning disabilities are more likely to be taking multiple medicines, but labels are not designed with them in mind. This article in the Pharmaceutical Journal looks at a project run by a team at Leeds and York Partnership NHS Foundation Trust in 2021, which came from a person with learning disabilities requesting medicine labelling with “the name of the tablets in big letters so I know what tablets I’m taking."
  14. Content Article
    In the windowless room where he spends 24 hours a day, lying in the bed he cannot leave, Nicholas Thornton reaches for his laptop and begins to type. It is the only way he can communicate. For more than 10 years, this 28-year-old has been trapped in dementia care units and A&E wards, abused by nurses and held in padded rooms. In all this time, he’s never had the care he needs. The 28-year-old is bedbound, unable to move and unable to speak, the effects of more than 10 years trapped in hospitals and units that cannot care for his needs. Nicholas, who is autistic and has a learning disability, has been moved again and again since he was first sectioned aged 16, ferried between units hundreds of miles from his family’s home in Essex. His story comes as a four-year-long independent inquiry, led by House of Lords peer Sheila Hollins, condemns the government for failing to address the “systemic” failures that have led to people with learning disabilities being locked away in hospitals in solitary confinement for up to 20 years.
  15. Content Article
    The Department of Health and Social Care has published a letter, final report with recommendations, and a proposed code of practice framework from Baroness Hollins on the use of long-term segregation for people with a learning disability and/or autistic people. In her scathing report, Baroness Shelia Hollins said: “My heart breaks that after such a long period of work, the care and outcomes for people with a learning disability and autistic people are still so poor, and the very initiatives which are improving their situations are yet to secure the essential funding required to continue this important work."
  16. Event
    The Patient Safety Incident Response Framework (PSIRF) encourages investigations across the NHS to apply SEIPS. This 3 hour masterclass will focus upon using Systems Engineering Initiative for Patient Safety (SEIPS) in Learning Disability, Social Care and Mental Health. SEIPS trainer Dr Dawn Benson has extensive experience of using and teaching SEIPS, as a Human Factors tool, in health and social care safety investigation. She will be joined in these masterclass sessions by clinical subject experts. The masterclass will be limited to a small group to ensure in-depth learning. Register
  17. News Article
    The safety of people with learning disabilities in England is being compromised when they are admitted to hospital, a watchdog says. The Health Services Safety Investigations Body (HSSIB) reviewed the care people receive and said there were "persistent and widespread" risks. It warned staff are not equipped with the skills or support to meet the needs of patients with learning disabilities. The watchdog launched its review after receiving a report about a 79-year-old who died following a cardiac arrest two weeks after being admitted to hospital. As part of its investigation, HSSIB also looked at the care provided in other places to people with learning disabilities. It warned systems in place to share information about them were unreliable, and that there was an inconsistency in the availability of specialist teams - known as learning disability liaison services - that were in place in hospitals to support general staff. It also said general staff had insufficient training - although it did note a national mandatory training programme is currently being rolled out. Senior investigator Clare Crowley said: "If needs are not met, it can cause distress and confusion for the patient and their families and carers, and raises the risk of poor health outcomes and, in the worst cases, harm." Read full story Source: BBC News, 2 November 2023
  18. Content Article
    The aim of this investigation and report is to help improve the inpatient care of adults with a known learning disability in acute hospital settings. It focuses on people referred urgently for hospital admission from a community setting, such as a person’s home or residential home. In undertaking this investigation, the Health Services Safety Investigations Body (HSSIB) looked to explore the factors affecting: The sharing of information about people with a learning disability and their reasonable adjustment needs following admission to an acute hospital. How ward-base staff are supported to delivery person-centred care to people with a learning disability.
  19. News Article
    No senior NHS England director is prepared to take responsibility for ADHD services — which are facing waits of up to a decade and severe medication shortages — HSJ has discovered. Despite soaring demand for assessments and widespread drug shortages recently triggering a national patient safety alert, responsibility for attention-deficit/hyperactivity disorder services does not sit within any NHS England directorate. HSJ understands that none of NHSE’s mental health, learning disability, or autism programmes have been given any resources for ADHD. It is also claimed that the medical and long-term conditions teams “are not very interested” in taking responsibility, and “assumed someone else was doing it”. A senior source, very close to the issue, told HSJ that no NHS senior director had taken “ownership” of the issue, and there was a widespread misapprehension that responsibility for ADHD services was part of the autism remit given to the mental health directorate. “We haven’t got the attention we need around ADHD,” said the source, “we need a [dedicated] neurodiversity programme.” Read full story (paywalled) Source: HSJ, 26 October 2023
  20. Content Article
    World Hospice and Palliative Care Day takes place on 14 October 2023.  Patient safety in hospice and palliative care involves ensuring that every patient is able to access the services, support and pain relief that they need when they reach the end of life. It is also vital that families and carers are given relevant and timely support and information by healthcare services during their loved one’s hospice or palliative care, and following their death.
  21. Content Article
    In this webinar recording, Alex RK, a barrister, writer and educator, takes stock of the mental capacity and mental health law and policy landscape as at August 2023. It primarily focuses on England & Wales, but also includes developments in the UK and further afield, including thinking about the implications of the French language version of Article 19 CRPD providing not for ‘living independently’, but ‘autonomie de vie’.
  22. Content Article
    In April 2023, National Voices held a workshop with members, supported by The Disrupt Foundation, on the unequal impact of the Covid-19 pandemic. It explored how communities and groups were affected differently by both the virus itself and the measures brought in to control it.   It painted a grim picture of the ways in which the pandemic response exacerbated existing, deep-rooted inequalities across the UK and compounded the disadvantages experienced by people from minoritised communities, by disabled people and by people living with long term conditions.  Just some examples include people who are immunocompromised, who were asked to go into isolation for huge periods of time and still feel completely overlooked as control measures have been lifted. Or the use of DNRs (Do Not Resuscitate orders) which were disproportionately applied to people with learning disabilities.  With the Covid-19 Inquiry underway, it is imperative that we capture the lessons learnt from the pandemic, and use them to suggest action for the future.
  23. Content Article
    Rebecca Bauers, Interim Director for People with a Learning Disability and Autistic People, and Chris Dzikiti, Director for Mental Health, talk about CQC’s new cross-sector policy position statement on restrictive practice, what it means for providers, and what people receiving healthcare services have the right to expect. As well as sharing the new policy, they discuss what forms restrictive practices can take, and explain how the use of blanket restrictions diminishes the therapeutic power of person-centred, trauma-informed care.
  24. Event
    The Patient Safety Incident Response Framework (PSIRF) encourages investigations across the NHS to apply SEIPS. This 3 hour masterclass will focus upon using SEIPS in Learning Disability. The SEIPS trainer Dr Dawn Benson has extensive experience of using and teaching SEIPS, as a Human Factors tool, in health and social care safety investigation. She will be joined in these masterclass sessions by clinical subject experts. Register
  25. Content Article
    Constipation can be a life–threatening issue for people with a learning disability who are at heightened risk from complications if it is left untreated. This campaign has been developed by NHS England to support people with a learning disability, their carers and people who work in primary care to recognise the signs of constipation. Resources have been co–created with input from the Down’s Syndrome Association, Mencap and Pathways Associates to ensure that they are fit for purpose. The resources aim to: Drive awareness of the seriousness of constipation Help people recognise the signs of constipation at an early stage Empower people to take action and ensure that people with a learning disability experiencing constipation get the right health support straight away Raise awareness of the steps which can be taken to prevent constipation.
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