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Found 254 results
  1. Content Article
    Learning Disability Week is the third week of June every year. The event, organised by the charity Mencap, is an opportunity to raise awareness about different learning disabilities and challenge some of the barriers people who have learning disabilities face. According to Mencap, a learning disability is a person's reduced intellectual ability, meaning they can face difficulty with everyday activities. People with a learning disability can sometimes need extra support to learn new skills, understand complicated information or interact with other people. It can be particularly challenging for people with learning disabilities and their families when accessing healthcare services. To mark Learning Disability Week, we are sharing 11 resources, blogs and reports from the hub for patients, their families and healthcare professionals on breaking down these barriers.
  2. News Article
    More hospital patients with learning disabilities will die if politicians do not tackle the “devastating collapse” in specialist nurse numbers, a leading charity and a union have warned. The number of specialist learning disability nurses working in the NHS has dropped by 44 per cent over the course of the Conservative party’s time in government, a new analysis by the Royal College of Nursing (RCN) has revealed. The nursing union found a 36 per cent drop in applicants for specialist nursing degrees, while applicants are so low some universities have stopped funding courses altogether, according to a report shared exclusively with The Independent. The RCN and the charity Mencap have warned specialist nurses are vital in keeping patients with learning disabilities in hospital safe, as they are trained to spot life-threatening illnesses, such as sepsis, which can present differently. Dan Scorer, head of policy at Mencap, said: “Learning disability nurses have that in-depth training and understanding about the complexity of how people with a learning disability can present, and about how they will show they are experiencing pain. They’ve got vital expertise and insights to make sure that we don’t miss things.” He said the government must increase the number of training places available, and warned some universities have stopped courses altogether. He added: “I think the government removing bursaries for nurse training was pretty devastating. The impact of that was really significant, and whilst that’s been partially reversed, it significantly impacted the undergraduate training capacity that was available.” Read full story Source: The Independent, 4 June 2024
  3. Content Article
    Women with learning disabilities are less likely to access cervical and breast cancer screening when compared to the general population. In this study, the Social Ecological Model (SEM) was used to examine the inequalities faced by women with learning disabilities in accessing cervical and breast cancer screening in England. The study highlighted the following barriers to access for women with learning disabilities:Women with learning disabilities may lack knowledge of cancer symptoms and cancer screening, as well as being scared about the process and getting the results. The attitudes of family and paid carers towards screening may influence women with learning disabilities' decisions as to whether screening is seen as favourable; support and training may ensure unbiased perspectives. Barriers associated with how cancer screening programmes are designed, such as postal invitations which assumes an ability to read. Screening staff need to be aware of the general needs of people with learning disabilities, such as the benefits of easy-to-read documents. Multidisciplinary working is required so reasonable adjustments can be embedded into cancer screening pathways.The authors suggest that multiple methods to reduce the inequalities faced by women with learning disabilities are needed, and that these can be achieved through reasonable adjustments. Embedding reasonable adjustments can support women with learning disabilities in making an informed decision and accessing screening if they choose to. This may result in women with learning disabilities getting a timely cancer diagnosis.
  4. Content Article
    Psychotropic medicines are medications that act on the brain. They are used for mental health conditions but are sometimes also given to people because their behaviour is seen as challenging, such as people with learning disabilities or cognitive impairment. This standard produced by the Australian Commission on Safety and Quality in Healthcare provides guidance to clinicians, healthcare services, patients, families and carers on the safe and appropriate use of psychotropic medicines. It contains: Eight quality statements describing safe and appropriate care. A set of indicators to support monitoring and quality improvement.
  5. Content Article
    Clive Treacey, who had a learning disability, epilepsy and complex mental health needs, died in 2017 aged 47, having spent his adult life in residential social care and inpatient settings. In 1993, he was placed by Staffordshire County Council into the David Lewis Centre in the borough of Cheshire East, where it is alleged he was sexually abused by a member of staff. Cheshire East Safeguarding Adults Board (CESAB) and Staffordshire and Stoke-on-Trent Adults Safeguarding Partnership Board (SSASPB) jointly commissioned a Discretionary Safeguarding Adults Review (D-SAR) to look at Clive's case. Authored by Professor Michael Preston-Shoot, the review relates to historical incidents of abuse and examines what is now in place to protect adults at risk since adult safeguarding became a statutory duty under the Care Act in 2014. The SAR makes 14 recommendations to the boards.
  6. Content Article
    Around 1.3 million people in England have a learning disability and may need more support to stay in good health. But are they able to get access to the services they are entitled to in order to prevent illness? This Nuffield Trust report looks at a set of five key preventive healthcare services and functions to understand whether they are working as they should for people with a learning disability.
  7. News Article
    Doctors made do-not-resuscitate orders for elderly and disabled patients during the pandemic without the knowledge of their families, breaching their human rights, a parliamentary watchdog has said. In a new report on breaches of the orders during the pandemic, the Parliamentary Health Service Ombudsman (PHSO) found failings from at least 13 patient complaints. The research, carried out with the charity Dignity in Dying, found “unacceptable” failures in how end-of-life care conversations are held, and in particular with elderly and disabled patients. Following a review of complaints in 2019 and 2020 the PHSO found evidence in some cases that doctors did not even inform the patient or their family that a notice had been made and so breached their human rights. The report calls for health services in Britain to improve the approach by medics in talking about death and end-of-life care. In examples of cases reviewed, the PHSO revealed the story of 58-year-old Sonia Deleon who had schizophrenia and learning disabilities and a notice which was wrongly applied during the pandemic. In 2020, she was admitted to Southend University Hospital after contracting Covid-19 at age 58. On three occasions a notice was made but her family were never informed. Following Sonia’s death her family found out the reasons given by doctors for the DNAR which “included frailty, having a learning disability, poor physiological reserve, schizophrenia and being dependent for daily activities.” Sonia’s sister Sally-Rose Cyrille said: “I was devastated, shocked and angry. The fact that multiple notices had been placed in Sone’s file without consultation with us, without our knowledge, it was like being hit with a sledgehammer. Read full story Source: The Independent, 14 March 2024
  8. Content Article
    A change in how British people and health professionals talk about death is needed to avoid delays in crucial conversations about end-of-life care, resulting in traumatic consequences for patients and their families, the Parliamentary and Health Service Ombudsman (PHSO) has warned. In a new report, End of life care: improving ‘do not attempt CPR’ conversations for everyone, PHSO has called for urgent improvements to the process and communication surrounding do not attempt cardiopulmonary resuscitation (DNACPR), so doctors, patients, and their loved ones can make informed choices about their care.
  9. 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.
  10. 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.
  11. 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.
  12. Content Article
    This animation was created to highlight the specific issues for people with learning disabilities in relation to psychological trauma.
  13. 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
  14. 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.
  15. 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
  16. 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.
  17. 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.
  18. 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.
  19. 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.
  20. 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
  21. 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."
  22. 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.
  23. 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."
  24. News Article
    The parents of a girl who died after failings by NHS 111 said they were horrified to learn coroners had already warned about similar shortcomings. Hannah Royle, 16, died in 2020 after the NHS phone service failed to realise she was seriously ill. BBC News found concerns had been raised about the call centre triage software in 2019 after three children died. The NHS said it had learnt lessons from each case, but said it had not established a link between the deaths. Hannah, who was autistic, had a cardiac arrest as she was driven to East Surrey Hospital by her parents. She had suffered a twisted stomach, but call handlers believed she had gastroenteritis. A coroner's report said NHS 111 staff failed to consider her "disabilities and inability to verbalise" when using the triage software. Known as NHS Pathways, the algorithm relies on answers being given over the phone to a set series of questions. The system guides call handlers, who are not medically qualified, to direct patients to other parts of the NHS for further assessment and treatment. In 2019, three coroners issued reports "to prevent future deaths" after serious abdominal illness in Myla Deviren, Sebastian Hibberd, Alexander Davidson and were missed by NHS 111. In all cases, coroners raised concerns about the ability of children to understand call handlers' questions or articulate their symptoms. Read full story Source: BBC News, 24 May 2022
  25. News Article
    Fourteen patients with autism or learning disabilities have died since 2015 while detained in psychiatric facilities in Scotland, figures reveal. The statistics were released for the first time by Public Health Scotland (PHS) following a parliamentary question by Scottish Conservative MSP Alexander Burnett, who has campaigned to end the “national scandal” of otherwise healthy people being locked up for months or years due to a lack of community-based support. The PHS report does not detail the causes of death, but does show that seven of the deaths occurred in patients who had been resident at an inpatient psychiatric facility for between 91 and 365 days, with six (43%) in patients whose stay had exceeded at least one year. Rob Holland, acting director of the National Autistic Society Scotland, said the data was a “step forward in understanding the experience of autistic people and people with a learning disability within inpatient psychiatric facilities”. He added: “While it does not shine a light on the reasons for the deaths it does highlight how almost all of those that died had been within institutional care for more than 30 days with 6 people having been there for more than a year. “Hospitals are not homes and it adds further impetus to the Scottish Government’s ‘Coming Home’ strategy to reduce delayed discharge and support people to live in homes of their own choosing.” Read full story Source: The Herald, 18 May 2022
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