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Found 47 results
  1. Content Article
    This guidance supports trusts and community providers in enabling frontline staff to fulfil their legal requirements under the Mental Capacity Act (MCA) 2005, specifically when supporting people with a learning disability. A Health Services Safety Investigations Body Report in 2023, on the care of acute hospital inpatients with a learning disability in England, found variation in staff understanding and application of the MCA in the care of people with a learning disability. Leadership within Trusts have been asked to ensure they understand the guidance, take the actions indicated and make these resources available to all frontline staff.
  2. Content Article
    Allied health professionals (AHPs) in inpatient mental health, learning disability and autism services work in cultures dominated by other professions who often poorly understand their roles. Furthermore, identified learning from safety incidents often lacks focus on AHPs and research is needed to understand how AHPs contribute to safe care in these services. A rapid literature review was conducted on material published from February 2014 to February 2024, reporting safety incidents within adult inpatient mental health, learning disability and autism services in England, with identifiable learning for AHPs. The review found that misunderstanding of AHP roles, from senior leadership to frontline staff, led to AHPs being disempowered and excluded from conversations/decisions, and patients not getting sufficient access to AHPs, contributing to safety incidents. A central thread ‘organisational culture’ ran through five subthemes: (1) (lack of) effective multidisciplinary team (MDT) working, evidenced by poor communication, siloed working, marginalisation of AHPs and a lack of psychological safety; (2) (lack of) AHP involvement in patient care including care and discharge planning, and risk assessment/management. Some MDTs had no AHPs, some recommendations by AHPs were not actioned and referrals to AHPs were not always made when indicated; (3) training needs were identified for AHPs and other professions; (4) staffing issues included understaffing of AHPs and (5) senior management and leadership were found to not value/understand AHP roles, and instil a blame culture. A need for cohesive, well-led and nurturing MDTs was emphasised.
  3. 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." The report focuses on people with a learning disability and/or autistic people who are detained in mental health and specialist learning disability hospitals. The Independent Care (Education) and Treatment Review (IC(E)TR) programme reviewed the care and treatment of 191 people who were detained in long-term segregation between November 2019 and March 2023. The programme was established because of serious concerns about the use of long-term segregation, and in particular about lengthy stays and difficulties in discharging people from long-term segregation. The aim was to identify the blocks to discharge and to assess whether independently chaired Care (Education) and Treatment Reviews (C(E)TRs) would be more effective than commissioner chaired C(E)TRs in developing the right support for each person detained in long-term segregation. The Oversight Panel found a lack of urgency in addressing the many systemic issues that were identified through the IC(E)TR reviews. International consensus across various sectors and disciplines on the harms caused by enforced isolation are scientifically evidenced and compelling, and the consensus is that enforced isolation has no therapeutic benefit. Members are unanimous in recommending that all instances of enforced social isolation, including seclusion and long-term segregation, should be renamed ‘solitary confinement’. The panel recommends that its use with children and young people under the age of 18 should be ended with immediate effect, and that the use of solitary confinement for people with a learning disability and/or autistic people should be severely curtailed and time limited. Minimum standards for the use of solitary confinement should be introduced urgently through amendments to the Mental Health Act 1983: Code of Practice.
  4. News Article
    A man with Down’s Syndrome and dementia died in hospital after not being fed for nine days. The 56-year-old was admitted to Poole hospital with a hip fracture after falling over at a Bournemouth care home, where he had been receiving care. On admittance, he was taken to the trauma and orthopaedics ward, where he was listed as ‘nil by mouth’, as he had trouble swallowing. Nine days later, he died of pneumonia after a ‘series of errors’ at the hospital. Now, the man’s father has been given £22,500 in compensation, after an incident investigation at the hospital. Allegations made against the hospital included a failure to feed the patient for nine days, causing "his subsequent severe deterioration and death". The hospital failed to adequately monitor and investigate his condition, while failing to provide senior doctors, it was alleged. This left unsupervised junior doctors who did not have access to senior staff or any way to escalate their concerns, allegations said. This, it was claimed, was not done when the patient was still nil by mouth after nine days, despite the fact he was suffering from pneumonia. Read full story Source: Yahoo News, 9 February 2024
  5. News Article
    People with learning disabilities are dying of coronavirus at more than six times the rate of the general population, according to “deeply troubling” figures that have prompted a government review. A report from Public Health England (PHE) found that 451 in every 100,000 people registered as having learning disabilities died after contracting Covid-19 in the first wave of the pandemic, when the figures were adjusted for age and sex. Because not all Covid deaths among people with learning disabilities are registered as such, the true figure is likely to be 692 in every 100,000, or 6.3 times the UK average, the report estimated. Campaigners said the figures showed the government had failed to protect the most vulnerable. The report found that Covid deaths among those with learning disabilities were also more widely spread across age groups, with far greater mortality rates among younger adults. Those aged 18-34 were 30 times more likely to die with the virus than their counterparts in the general population. The higher death rate is likely to reflect the greater prevalence of health problems such as diabetes and obesity among those with learning disabilities, the report said. It also noted that some learning disabilities, such as Down’s syndrome, can make people more vulnerable to respiratory infections. People with learning disabilities are also likely to have difficulty recognising symptoms and following advice on testing, social distancing and infection prevention, the report said. It may also be harder for those caring for them to recognise symptoms if these cannot be communicated, it added. Read full story Source: The Guardian, 12 November 2020
  6. News Article
    In late July 2019, Sara Ryan tweeted asking families with autistic or learning disabled children to share their experience of “sparkling” actions by health and social care professionals. She was writing a book about how professionals could make a difference in the lives of children and their families. "These tweets generated a visceral feeling in me, in part because of the simplicity of the actions captured. Why would you not ring someone after a particularly difficult appointment to check on them? Isn’t remembering what children like and engaging with their interests an obvious way to generate good relationships? Telling a parent their child has been a pleasure to support is commonplace, surely?" Sara's own son, Connor, was left to drown in an NHS hospital bath while nearby staff finished an online Tesco order. "Certain people, children and adults, in our society are consistently and routinely positioned outside of 'being human', leading to an erasure of love, care and thought by social and healthcare professionals. They become disposable." What has become clear to Sara is how much the treatment of people and their families remains on a failing loop, despite extensive research, legislative and policy change to make their lives better, and potentially transformative moments like the exposure of the Winterbourne View scandal. At the heart of this loop are loving families and a diverse range of allies, surrounded by a large cast of bystanders who, instead of fresh eyes, have vision clouded by ignorance and sometimes prejudice. "To rehumanise society, we need more people with guts and integrity who are prepared to step up and call out poor practice, and to look afresh at how we could do things so much better with a focus on love and brilliance." Read full story Source: The Guardian, 27 October 2020 Sara Ryan's book: Love, learning disabilities and pockets of brilliance: How practitioners can make a difference to the lives of children, families and adults
  7. News Article
    The Care Quality Commission (CQC) has called for ‘ministerial ownership’ to end the ‘inhumane’ care of patients with learning difficulties and autism in hospital – after finding some cases where people had been held in long-term segregation for more than 10 years. Following its second review into the uses of restraint and segregation on people with a learning difficulty, autism and mental health problems, the CQC has warned it “cannot be confident that their human rights are upheld, let alone be confident that they are supported to live fulfilling lives”. The review was ordered by health and social care secretary Matt Hancock in late 2018 in response to mounting concerns about the quality of care in these areas. According to the report, published today, inspectors found examples people being in long-term segregation for at least 13 years, and in hospital for up to 25 years. It also found evidence showing the proportion of children from a black or black British background subjected to prolonged seclusion on child and adolescent mental health wards was almost four times that of other ethnicities. Looking at care received in hospital the CQC found many care plans were “generic” and “meaningless” and patients did not have access to any therapeutic care. Reviewers also found people’s physical healthcare needs were overlooked. One women was left in pain for several months due to her provider failing to get medical treatment. The regulator also reviewed the use of restrictive practices within community settings. While it found higher quality care, and the use of restrictive practices was less common, it said there was no national reporting system for this sector. Read full story (paywalled) Source: HSJ, 22 October 2020
  8. News Article
    The care model run by independent sector mental health and learning disability hospitals is ‘inherently risky’, a Care Quality Commission (CQC) chief inspector has warned. Speaking at the NHS Providers conference, Ted Baker, chief inspector of hospitals for the Care Quality Commission, unveiled the regulator’s plans to change how it inspects health and care services. When asked by HSJ how its new “streamlined” approach would be applied to inpatient units run by the independent sector for people with mental health and learning disability, Professor Baker said: ”One of the things we’ve been doing during the pandemic, and will continue in our transitional approach, is target risk. And one of the risks we have been targeting is exactly this, patients with learning disability and/or autism in some of these small units that have got closed cultures." “I think we do recognise that model of care is an inherently risky model of care and so we have been inspecting many of those under this risk driven model and taking action against many of them. But there is ongoing concern about that model of care and in a few weeks’ time we will be publishing a report on our assessment of that model of care and the importance of it being changed for the benefit of the people being looked after. The model of care needs to be improved but we need to make sure we are tackling the risk.” The chief’s comments come ahead of the regulator’s state of care report, which is due to be published next week. In its report published last year the CQC highlighted a concern regarding the quality and safety of independent learning disability and autism units. In particular it warned these were at a higher risk of developing closed cultures. Read full story (paywalled) Source: HSJ, 7 October 2020)
  9. News Article
    Ten workers at a mental health unit have been suspended amid claims patients were "dragged, slapped and kicked". Inspectors said CCTV footage recorded at the Yew Trees hospital in Kirby-le-Soken, Essex, appeared to show episodes of "physical and emotional abuse". The details emerged in a Care Quality Commission (CQC) report after the unit was inspected in July and August. A spokeswoman for the care provider said footage had been passed to police. The unannounced inspections were prompted by managers at Cygnet Health Care, who monitored CCTV footage of an incident on 18 July. At the time, the 10-bed hospital held eight adult female patients with autism or learning difficulties. The CQC reviewed 21 separate pieces of footage, concluding that 40% "included examples of inappropriate staff behaviour". "People who lived there were subjected not only to poor care, but to abuse," a CQC spokesman said. Workers were captured "physically and emotionally abusing a patient", and failing to use "appropriate restraint techniques", the report said. It identified "negative interactions where staff visibly became angry with patients" and two cases where staff "dragged patients across the floor". "We witnessed abusive, disrespectful, intimidating, aggressive and inappropriate behaviour," the inspectors said. Read full story Source: BBC News, 23 September 2020
  10. News Article
    NHS England and Improvement have launched an independent review into the care and death of a man with learning disabilities, following concerns raised by HSJ. The regulator has appointed Beverley Dawkins to carry out an independent review of the case of Clive Treacy, as part of the learning disability mortality review programme. Clive, who died in 2017, had previously been denied a review under LeDer and, according to emails seen by HSJ, his death was never officially recorded by the programme, which is meant to record all deaths of people with a learning disability. NHS England and Improvement overturned the decision earlier this year after HSJ presented evidence of a series of failures in his care between 2012 and 2017. Today, it was confirmed to us that Ms Dawkins has been commissioned to carry out the review, and that it would review his care throughout his life, as well as his death. Read full story Source: HSJ, 23 July 2020
  11. News Article
    A low secure unit for people with learning disabilities and autism has been put into special measures after inspectors found the use of restraint and segregation affected the quality of life for some patients. Cedar House, in Barham near Canterbury, houses up to 39 people and had been rated “good” by the Care Quality Commission early last year. But at an inspection in February this year inspectors rated the service – run by the Huntercombe Group — “inadequate,” saying it was not able to meet the needs of many of the patients at the unit. It was issued with three requirement notices. One patient had been subject to prolonged restraint 65 times between September and February. Each time he was restrained by between two and 19 staff, for an average of nearly two hours. On one occasion, this restraint lasted for eight hours. But the inspectors were told that in the six months before the inspection 29 staff had been injured during these restraints, and the hospital had been trying to refer the patients to a more secure environment. “The impact of this inappropriately placed patient was considerable for both the patients and the hospital,” the report said. “The staff who were regularly involved in restraining the patient were tired and concerned about the welfare and dignity of the patient.” Read full story (paywalled) Source: HSJ, 21 July 2020
  12. News Article
    The latest annual report into the deaths of people with learning disabilities has criticised the “insufficient” national response to past recommendations and called for “urgent” policy changes. The national learning disabilities mortality review programme has criticised the response from national health bodies to its previous recommendations. To date, just over 7,000 deaths have been notified to the programme and reviews have been completed for just 45%. There have been four annual reports for programme to date, and in the latest published today, the authors warned: “The response to these recommendations has been insufficient and we have not seen the sea change required to reassure [families] that early deaths are being prevented." “It is long over-due that we should now have concerted national-level policy change in response to the issues raised in this report and previous others. A commitment to take forward the recommendations in a meaningful and determined way is urgently required.” The latest report also warns that black, Asian and ethnic minority children with learning disabilities die “disproportionately” younger compared to other ethnicities. It also found system problems and gaps in service provision were more likely to contribute to deaths in BAME people with learning disabilities. Read full story Source: HSJ, 16 July 2020
  13. News Article
    Figures released by the Office for National Statistics show that about two-thirds of fatalities from this disease during its peak from start of March to mid-May were people with disabilities. That is more than 22,000 deaths. Then dig down into the data. It indicates women under 65 with disabilities are more than 11 times more likely to die than fellow citizens, while for men the rate is more than six times higher. Even for older people the number of deaths was three times as high for women and twice as high for men. There are some explanations for such alarming figures, although they tend to reveal other profound concerns. Yet the report showed even when issues such as economic status and deprivation are taken into account, people with disabilities died at about twice the rate of their peers. So where was the fury over this obvious and deep inequality, even in death? Where was the fierce outcry over persistent failures that left many citizens and their families at risk, lacking even the most basic advice, support or protection from the state? Chris Hatton, the dedicated professor of public health and disability at Lancaster University, delved into all available data. He found people with autism and learning disabilities were in reality at least four times more likely to die at the peak of pandemic than other citizens. They also died at far younger ages. “Information released about deaths of autistic people and people with learning disabilities has been minimal, grudging and seems deliberately designed to be inaccessible,” he says. This adds up to one more shameful episode in the scandal of how Britain treats such citizens. Read full story Source: iNews, 5 July 2020
  14. News Article
    NHS England and NHS Improvement have ordered urgent reviews into the deaths of people with a learning disability and autism during the pandemic, HSJ has learned. In May, the regulators said the COVID-19 death rates among this population were broadly in line with the rest of the population. But in early June, the Care Quality Commission published data which suggested death rates of people with learning disabilities and/or autism had doubled during the pandemic. In an announcement posted on a social media group for Royal College of Nursing members last week, NHSE/I said they were “urgently seeking clinical reviewers with experience in learning disability”. The message to the private Facebook group, seen by HSJ, added: “The effects of coronavirus are having a far-reaching impact on all our lives. As we learn more about the virus, we are taking steps to make changes to safeguard our well-being. “For people with a learning disability, the number of deaths has doubled during the covid pandemic. (compared to data on the number of deaths recorded during the same period last year). As a result, we have a large number of deaths of people with a learning disability who have died during the pandemic whose deaths we want to review.” Read full story (paywalled) Source: HSJ, 1 July 2020
  15. News Article
    Police in Bristol have launched investigations into the circumstances that led to the death of a teenager with autism and learning disabilities. Avon and Somerset Police told HSJ they are investigating the circumstances behind the death of Oliver McGowan in 2016, at North Bristol Trust. They said: “As part of the enquiry [officers] will interview a number of individuals as they seek to establish the circumstances around Oliver’s death before seeking advice from the Crown Prosecution Service.” Oliver died in 2016 at Bristol’s Southmead Hospital after being admitted following a seizure. He had mild autism, epilepsy and learning difficulties. During previous hospital spells he experienced very bad reactions to antipsychotic medications, prompting warnings in his medical records that he had an intolerance to these drugs. Despite this Oliver was given anti-psychotic medication by doctors at Southmead against his own and his parents’ wishes. This led him to suffer a severe brain swelling which led to his death. His death has since prompted a national training programme for NHS staff on the care of people with autism and learning disabilities. Read full story (paywalled) Source: HSJ, 1 July 2020
  16. News Article
    Unlawful 'do not resuscitate' orders are being placed on patients with a learning disability during the coronavirus pandemic without families being consulted. National charities have successfully challenged more than a dozen unlawful do not resuscitate orders (DNRs) that were put in place because of the patient’s disability rather than due to any serious underlying health risk. Turning Point said it had learned of 19 inappropriate DNRs from families while Learning Disability England said almost one-fifth of its members had reported DNRs placed in people’s medical records without consultation during March and April. In one example, a man in his fifties with sight loss was admitted to hospital after a choking episode and was incorrectly diagnosed with coronavirus. He was discharged the next day with a DNR form giving the reason as his “blindness and severe learning disabilities”. Marie-Anne Peters, whose brother Alistair has epilepsy but no other health conditions, overturned a DNR on her brother which included instructions for him not to be taken to hospital. Both charities fear other people with learning disabilities who are vulnerable could be wrongly denied life-saving treatment. They have now launched a new checklist for families and care workers to challenge illegal DNRs. Read full story Source: The Independent, 13 June 2020
  17. News Article
    Young people with learning disabilities are being driven to self-harm after being prevented from seeing their families during the coronavirus lockdown in breach of their human rights, a new report finds. The Joint Committee on Human Rights warned that the situation for children and young people in mental health hospitals had reached the point of “severe crisis” during the pandemic due to unlawful blanket bans on visits, the suspension of routine inspections and the increased use of restraint and solitary confinement. The report concluded that while young inpatients' human rights were already being breached before the pandemic, the coronavirus lockdown has put them at greater risk – and called on the NHS to instruct mental health hospitals to resume visits. It highlighted cases in which young people had been driven to self-harm, including Eddie, a young man with a learning disability whose mother, Adele Green, had not been able to visit him since 14 March. “When the lockdown came, it was quite quick in the sense that the hospital placed a blanket ban on anybody going in and anybody going out,” said Ms Green. “Within a week, with the fear and anxiety, he tried to take his own life, which really blew us away. We were mortified.” The Committee is urging NHS England to write to all hospitals, including private ones, stating they must allow visits unless there is a specific reason relating to an individual case why it would not be safe, and said the Care Quality Commission (CQC) should be responsible for ensuring national guidance is followed. Read full story Source: The Independent, 12 June 2020
  18. News Article
    The Care Quality Commission (CQC) have looked at how the number of people who have died during the coronavirus outbreak this year compares to the number of people who died at the same time last year. They looked at information about services that support people with a learning disability or autism in the 5 weeks between 10 April to 15 May in 2019 and 2020. These services can support around 30,000 people. They found that in that 5 weeks this year, 386 people with a learning disability, who may also be autistic, died. Data for the same 5 weeks last year found that 165 people with a learning disability, who may also be autistic, died. This information shows that well over twice as many people in these services died this year compared to last year. This is a 134% increase in the number of death notifications this year. This new data should be considered when decisions are being made about the prioritisation of testing at a national and local level. Kate Terroni, Chief Inspector of Adult Social Care at the Care Quality Commission (CQC) said: "Every death in today's figures represents an individual tragedy for those who have lost a loved one." "While we know this data has its limitations what it does show is a significant increase in deaths of people with a learning disability as a result of COVID-19. We already know that people with a learning disability are at an increased risk of respiratory illnesses, meaning that access to testing could be key to reducing infection and saving lives." "These figures also show that the impact on this group of people is being felt at a younger age range than in the wider population – something that should be considered in decisions on testing of people of working age with a learning disability." Read full story Source: Care Quality Commission, 2 June 2020
  19. News Article
    NHS England has said disabled and vulnerable patients must not be denied personalised care during the coronavirus pandemic and repeated its warning that blanket do not resuscitate orders should not be happening. In a joint statement with disabled rights campaigner and member of the House of Lords, Baroness Jane Campbell, NHS England said the COVID-19 virus and its impact on the NHS did not change the position for vulnerable patients that decisions must be made on an individualised basis. It said: “This means people making active and informed judgements about their own care and treatment, at all stages of their life, and recognises people’s autonomy, as well as their preferences, aspirations, needs and abilities. This also means ensuring reasonable adjustments are supported where necessary and reinforces that the blanket application of do not attempt resuscitation orders is totally unacceptable and must not happen.” Read full story Source: The Independent, 26 May 2020
  20. News Article
    More than 460 people with a learning disability have died from coronavirus in just eight weeks since the start of the outbreak in England. New data shows between the 16 March and 10 May 1,029 people with a learning disability died in England, with 45 per cent, 467, linked to coronavirus.Overall the number of deaths during the eight weeks is 550 more than would be expected when compared to the same period last year. The charity Mencap warned people with a learning disability were “being forgotten in this crisis” and called for action to tackle what it said could be “potentially discriminatory practice.” It highlighted the percentage of Covid-19 related deaths among learning disabled people was higher than those in care homes, where the proportion of Covid-19 deaths was 31 per cent for the same period. The data has been published after an outcry over the lack of transparency about the impact of Covid-19 on mental health patients and people with a learning disability or autism. Read full story Source: The Independent, 19 May 2020
  21. 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.
  22. 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. The PBS resource includes: 1. What is Positive Behavioural Support? 2. What should Positive Behavioural Support look like? 3. Questions to ask to check whether Positive Behavioural Support is being used well 4. Family carers using Positive Behavioural Support 5. Practical tools Developing a behaviour support plan for your relative is a crucial step in delivering effective Positive Behavioural Support. In this updated resource you can find out about the key components of a behaviour support plan and how it can be used.
  23. 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. Book 1 – will help you to understand more about Positive Behavioural Support. Book 2 – will help you to think about what you need to have a good life. These things need to be in your positive behaviour support plan. Supporters Guide – if you need someone to help you look at these books and write things down, this guide has been written for your supporter to explain what to do. What is behaviour and PBS?
  24. 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. The standards: Improving the quality of Positive Behavioural Support (PBS): The standards for service providers and teams Improving the quality of Positive Behavioural Support (PBS): The standards for training Improving the quality of Positive Behavioural Support (PBS): The standards for individual practitioners All three sets of standards are independent of the establishment of an accreditation process. There is currently no accreditation body responsible for the accreditation of PBS. Establishing standards is a first and necessary step of any accreditation infrastructure and it is anticipated that any organisation offering accreditation in the future will base the accreditation process upon these standards.
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