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Found 122 results
  1. News Article
    Sir Norman Lamb, chair of South London and Maudsley Foundation Trust and a former Liberal Democrat MP, has suggested the government would lose a legal challenge over its national programme for patients with learning disabilities and said the national Transforming Care programme was at the “very least a partial failure”. “I regard this as a human rights issue. We’re locking people up when we don’t need to lock them up. We’re subjecting them to force, when we shouldn’t do so, and this is how I think we need to frame it. If the government were challenged in court on this, I think there’s a very good chance, as an ex-lawyer, that they would lose.” Transforming Care was launched in 2011 following the Winterborne View scandal and aimed to discharge patients with learning disabilities and autism out of institutional inpatient units into the community. However, the most recent figures, from NHS Digital, show there were still more than 2,000 patients within inpatient units, ahead of the national programme’s expiration this month. Kevin Cleary, deputy chief inspector for hospitals and lead for learning disability and mental health services for the CQC, said: “We have allowed our patients to be placed within places like Whorlton Hall. I think the NHS provides very few services of this type, it has withdrawn from providing these services, and has become comfortable with providing that service, within the independent sector, several hundred miles away and that’s not right… absolutely not right." “We cannot say we are providing patient centred care or say we are placing the patient at the heart of everything we do and have that response from the system. We are all responsible for that.” Read full story (paywalled) Source: HSJ, 10 March 2020
  2. News Article
    The Equality and Human Rights Commission have launched a legal challenge against the Secretary of State for Health and Social Care over the repeated failure to move people with learning disabilities and autism into appropriate accommodation. Their concerns are about the rights of more than 2,000 people with learning disabilities and autism being detained in secure hospitals, often far away from home and for many years. These concerns increased significantly following the BBC’s exposure of the shocking violation of patients’ human rights at Whorlton Hall, where patients suffered horrific physical and psychological abuse. The Equality and Human Rights Commission have sent a pre-action letter to the Secretary of State for Health and Social Care, arguing that the Department of Health and Social Care (DHSC) has breached the European Convention of Human Rights (ECHR) for failing to meet the targets set in the Transforming Care program and Building the Right Support program. These targets included moving patients from inappropriate inpatient care to community-based settings, and reducing the reliance on inpatient care for people with learning disabilities and autism. Rebecca Hilsenrath, Chief Executive of the Equality and Human Rights Commission, said: 'We cannot afford to miss more deadlines. We cannot afford any more Winterbourne Views or Whorlton Halls. We cannot afford to risk further abuse being inflicted on even a single more person at the distressing and horrific levels we have seen. We need the DHSC to act now." "These are people who deserve our support and compassion, not abuse and brutality. Inhumane and degrading treatment in place of adequate healthcare cannot be the hallmark of our society. One scandal should have been one too many." Read full story Souce: Equality and Human Rights Commission, 12 February 2020
  3. Content Article
    On 11 June 2019 an investigation into the death of Brooke Martin aged 19 started. Brooke was a patient at Isla House, Chadwick Lodge, Milton Keynes and was detained under the Mental Health Act. She had been diagnosed with Emotionally Unstable Personality Disorder and Autism Spectrum Disorder. Brooke was found hanging in her room and was taken to Milton Keynes University Hospital where she died on 11 June 2019.
  4. Content Article
    This Joint Committee on Human Rights inquiry will look at human rights concerns in care settings in England, highlighting areas in which the human rights of patients, older people and others living with long-term disabilities, including learning disabilities and autism, are currently undermined or at risk.
  5. Content Article
    Although the direct effects of Covid-19 on children and young people are usually milder than for older age groups, the pandemic’s effect on the overall health and care of the youngest generation has nonetheless been extensive. This analysis from the Nuffield Trust looks at the impact Covid-19 has had on healthcare for children and young people. The review has looked at both physical and mental health services and come to the same conclusion - support has been badly disrupted and the plight of children overlooked.
  6. Content Article
    Hannah Royle was a sixteen-year-old girl on the autism spectrum. Her parents had contacted the NHS 111 service on 20 June 2020 after she became unwell with vomiting and diarrhoea, but they were not advised to go to hospital. Three hours later as her conditioned worsened they phoned again, and the call handler, who took advice from a clinical adviser, opted not to call an ambulance and instead told her parents to make their own way to hospital. She died following a cardiac arrest as she was driven to hospital by her parents. In her findings the Coroner states that the NHS 111 service failed to provide the appropriate triage for Hannah on the information provided to them by her parents. This resulted in a cardio-respiratory arrest arising from an avoidable delay in being adequately resuscitated either by prompt attendance of the emergency services or through earlier admission into hospital.
  7. Content Article
    Our Impact Films presents a feature short film on Autism in the London Borough of Sutton. Film maker Mohammed captures a very powerful message through this film that was represented from the perspective of young autistic participants. He highlights the importance of communication of young autistic people from diverse backgrounds. Through this film, the hope is to give the audience the chance to understand what life can be like being autistic and really celebrate the fact that differences don’t separate people but in-fact makes the diversity of society all the more valuable.
  8. Content Article
    A free book about the experiences of people with learning disabilities and/or autism during the pandemic – ‘Peter and Friends talk about Covid-19 and having a learning disability and/or autism‘. From an idea from Peter Cronin, London South Bank University, Oxleas NHS Trust and the Foundation for People with Learning Disabilities drew together stories about the experiences of people with learning disabilities and/or autism during the pandemic in the UK and across the world.
  9. Event
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    The 2023 Mental Health Network Annual Conference and Exhibition will bring together over 130 senior leaders from the mental health, learning disability and autism sector for lively discussions on the future of services, to share good practice, horizon scan, and network with their peers. The next year brings a range of opportunities and challenges for mental health providers. Organisations are continuing to deliver services whilst facing unprecedented community need, workforce shortages and with the cost of living risking eroding the mental wellbeing of the wider population. Even with these challenges, 2023 presents a year of opportunities. This includes funding secured to continue to deliver the NHS Long Term Plan, a new landscape of integrated care, significant community transformation work underway, and key bills passing through parliament aimed at improving the policy environment mental health providers operate in. The Network’s members will once again come together to focus on the challenges and opportunities the mental health sector faces within the changing context. Register
  10. Event
    To share the learning and resources from the award-winning (The Royal Society of Public Health - Arts in Health 2022) community partnership programme between Tameside and Glossop Integrated Care NHS FT, Made By Mortals CIC (arts organisation) and over 50 patients with a broad range of lived experience- including mental ill health, learning disability, autism, English not as their first language, and people that identify as non-binary. The project used immersive audio case studies coproduced by patients, including the use of music, sound effects, and drama, together with an interactive workshop that challenged volunteers and staff at the hospital to take a walk in the patient’s shoes. The experiential community-led training raised awareness of the challenges that people with protected characteristics and additional needs face. This work supported Tameside and Glossop Integrated Care NHS FT ongoing approach to quality and diversity and supported attendees to adapt their behaviours to create an empathetic and person-centred environment. Register
  11. Community Post
    The recent press release from the UK Government outlines a White Paper which contains the reforms: "Major reform of Mental Health Act will empower individuals to have more control over their treatment and deliver on a key manifesto commitment. Reforms will deliver parity between mental and physical health services and put patients’ views at the centre of their care. Plan will tackle mental health inequalities including disproportionate detention of people from black, Asian and minority ethnic (BAME) communities, the use of the act to detain people with learning disabilities and autism, and improve care for patients within the criminal justice system..." The report covers: "A package of reforms has been set out in a wide-ranging new Reforming the Mental Health Act white paper, which builds on the recommendations made by Sir Simon Wessely’s Independent Review of the Mental Health Act in 2018. At the heart of the proposed reforms to the Mental Health Act is greater choice and autonomy for patients in a mental health crisis, ensuring the act’s powers are used in the least restrictive way, that patients receive the care they need to help them recover and all patients are viewed and treated as individuals. These reforms aim to tackle the racial disparities in mental health services, better meet the needs of people with learning disabilities and autism and ensure appropriate care for people with serious mental illness within the criminal justice system." Do you work for Mental Health services? Are you someone who uses Mental Health services? What are your views?
  12. Content Article
    This service model brings together the good practice taking place in local areas, and that  which has previously been described for this group of people. It recognises that improvements  are typically underpinned by visionary leadership, a focus on human rights based approaches,  workforce development, co-production and a preparedness to reflect and learn. It aims to support  commissioners across health and social care to work together to commission the range of services  and support required to meet the needs of this diverse group.
  13. News Article
    Three mothers whose sons have been locked in hospital psychiatric units in Scotland for years have spoken to the BBC because they’re desperate to get them out. The three young men did not break the law but have autism and learning disabilities. Jamie has autism and was sectioned after becoming distressed at 19. Although he was free to go after 3 months there was no where for him to go so he has lived in hospital units since then. He is now 24. The Scottish government said it was unacceptable to hold people with complex needs in hospital when they could be cared for in the community. "He's left to rot", says his mother. Watch video Source: BBC News, 9 February 2022
  14. News Article
    NHS England is urging health systems to ramp up physical health checks for people with severe mental illnesses to address a widening life expectancy gap caused by covid, according to a letter seen by HSJ. In a letter circulated to integrated care system leads, chairs, mental health and community trust executives on Wednesday, national commissioners warn the impact of the pandemic may widen current gaps in life expectancy for people with SMI and learning disabilities even further, without “decisive and proactive action”. The letter, circulated by national mental health director Claire Murdoch, learning disability and autism director Tom Cahill and inequalities director Bola Owolabi, quotes NHS data suggesting people with SMI are five-and-a-half times more likely to die prematurely and those with learning disabilities three times more likely to die from an avoidable cause of death. It says: ”The health inequalities faced by people living with SMI and people with a learning disability are stark… The impacts of the pandemic will widen this gap further unless we take decisive and proactive action to address inequalities… These checks are a key lever to address the reduced life expectancy for both groups.” It calls on primary care teams, already delivering thousands of covid vaccinations as part of the booster programme, to prioritise annual physical health checks alongside the rollout, “even as we continue with a level 4 national incident” caused by the omicron variant. Read full story (paywalled) Source: HSJ, 14 January 2022
  15. News Article
    A whistle-blower in the case of an autistic man who has been detained in hospital since 2001 says he feels complicit in his "neglect and abuse". A BBC investigation found 100 people with learning disabilities have been held in specialist hospitals for 20 years or more, including Tony Hickmott. His parents are fighting to get him rehoused in the community. A support worker at a hospital where Mr Hickmott has been detained said he was the "loneliest man in the hospital". Mr Hickmott was sectioned under the Mental Health Act in 2001. His parents, Pam and Roy Hickmott, were told he would be treated for nine months, and then he would be able to return home. He is now 44 - and although he was declared "fit for discharge" by psychiatrists in 2013, he is still waiting for authorities to find him a suitable home with the right level of care for his needs. Following the report, Phil Devine, who worked in the hospital as a cleaner and a support worker, came forward to talk about conditions at the hospital. Mr Devine said only Mr Hickmott's basic needs were met. "Almost like an animal, he was fed, watered and cleaned. If anything happened beyond that, wonderful, but if it didn't, then it was still okay." In 2020, the hospital was put into special measures because it did not always "meet the needs of complex patients". A report highlighted high levels of restraint and overuse of medication, a lack of qualified and competent staff and an increase of violence on many wards. The hospital has now been taken out of special measures but still "requires improvement", according to the Care Quality Commission. Read full story Source: BBC News,
  16. News Article
    One hundred people with learning disabilities and autism in England have been held in specialist hospitals for at least 20 years, the BBC has learned. The finding was made during an investigation into the case of an autistic man detained since 2001. Tony Hickmott's parents are fighting to get him housed in the community near them. Mr Hickmott's case is being heard at the Court of Protection - which makes decisions on financial or welfare matters for people who "lack mental capacity". Senior Judge Carolyn Hilder has described "egregious" delays and "glacial" progress in finding him the right care package which would enable him to live in the community. He lives in a secure Assessment and Treatment Unit (ATU) - designed to be a short-term safe space used in a crisis. It is a two-hours' drive from his family. This week, Judge Hilder lifted the anonymity order on Mr Hickmott's case - ruling it was in the public interest to let details be reported. She said he had been "detained for so long" partly down to a "lack of resources". Like many young autistic people with a learning disability, Mr Hickmott struggled as he grew into an adult. In 2001, he was sectioned under the Mental Health Act. He is now 44. In addition to the 100 patients, including Mr Hickmott, who have been held for more than 20 years - there are currently nearly 2,000 other people with learning difficulties and/or autism detained in specialist hospitals across England. In 2015, the Government promised "homes not hospitals" when it launched its Transforming Care programme in the wake of the abuse and neglect scandal uncovered by the BBC at Winterbourne View specialist hospital near Bristol. But data shows the programme has had minimal impact. Read full story Source: BBC News, 24 November 2021
  17. News Article
    Throughout the pandemic, people with learning disabilities and autism have consistently been let down. A lack of clear, easy-to-understand guidance, unequal access to care and illegal “do not resuscitate” instructions have exacerbated the inequalities many people have long faced. It is crucial we do not forget those who have constantly been at the back of the queue: people with learning disabilities and autism. The impact cannot be ignored: research shows that 76% of people with learning disabilities feel they do not matter to the government, compared with the general public, during the pandemic. And data shows the danger of contracting COVID-19 for people with learning disabilities and autism is much higher than for the wider population. Public Health England has said the registered COVID-19 death rate for people with learning disabilities in England is more than four times times higher than the general population. But experts estimate the true rate is likely to be even higher, since not all deaths of people with learning disabilities are registered in the databases used to collate the findings. The reasons the pandemic has impacted people with learning disabilities so disproportionately are systemic, and a result of inequalities in healthcare services experienced for generations. Yes, some individuals are more clinically vulnerable, on account of the co-morbidities and complications associated with their learning disability. For many people, however, poorer outcomes after contracting the virus are due to non-clinical issues and inequalities in accessing healthcare services. This is inexcusable. The government must prioritise vaccinations for the 1.5 million people with learning disabilities and 700,000 with autism. Putting this long-overlooked group at the top of the vaccine queue would help address the systemic health inequalities learning disabled people face. Read full story Source: The Guardian, 15 December 2020
  18. News Article
    Staff at a mental health unit missed "multiple opportunities" to realise a woman had become unwell before she died, a coroner has said. Sian Hewitt, 25, died at Milton Keynes Hospital last year after collapsing at the nearby Campbell Centre. Coroner Tom Osborne said there was "a failure to start effective CPR". A spokesman for the centre said changes have been made to how care is delivered. Ms Hewitt, who had Asperger's syndrome and bipolar disorder, was admitted to the inpatient unit on 13 March 2019. She died less than a month later on 6 April 2019 at Milton Keynes Hospital, where she was taken after collapsing on Willow Ward at the centre. An inquest concluded she died of a pulmonary embolism, caused when a blood clot travels to the lungs. In a Prevention of Future Deaths Report, Mr Osborne said the centre failed to carry out a risk assessment and there was a delay in administering a drug resulting in "her mania not being brought under control". His report said the "failure to recognise how seriously ill she had become" had "resulted in lost opportunities to treat her appropriately that may have prevented her death". He said her death suggested the NHS was "unable to provide a place of safety for those who are suffering from Asperger's syndrome" or other forms of autism "when they are also suffering additional mental health problems such as bipolar". Read full story Source: BBC News, 4 December 2020
  19. 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
  20. 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
  21. News Article
    An independent review found that commissioners’ investigation of a young boy’s death was ‘mismanaged’, and heard allegations that the person who coordinated it was bullied over the contents. The independent review, commissioned by NHS England, has published its final report following an investigation into Bristol, North Somerset and South Gloucestershire clinical commissioning group’s LeDer review into the death of Oliver McGowan. Chaired by Fiona Ritchie, the independent review was commissioned last year after evidence emerged that the CCG had rewritten earlier findings of the review, removing suggestions his death at North Bristol Trust in 2016 was avoidable. Oliver died in November 2016 after being given anti-psychotic medication against his own and his parents’ wishes and despite medical records showing he had an intolerance to anti-psychotics. He developed severe brain swelling because of the drugs and died.A local LeDer review — part of a programme aimed at improving care based on deaths among people with learning disabilities — was launched in 2017, seven months after his death, by the CCG (then operating as three separate organisations), then published in 2018. In 2018, a coroner concluded Oliver’s care prior to his death was “appropriate” and made no recommendations. His death is also currently the subject of a police investigation. The lead reviewer (Ms A) stated in her panel interview that during the time she was undertaking this LeDeR she had felt bullied, overworked and overly stressed by the demands placed on her by the various correspondences with solicitors and her line management. The fact that Ms A believed she was isolated and unsupported during this review illustrates evident failures in the CCG assurance and management processes at the time. In a final report by the subsequent independent review, published today, the panel led by Ms Ritchie “unanimously” agreed Oliver’s death was “potentially avoidable”. Read full story (paywalled) Source HSJ, 20 October 2020
  22. 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
  23. News Article
    A care home in Birmingham has been heavily criticised by the care watchdog after it found physical and verbal abuse of residents with learning disabilities and autism had become “normal”. The Care Quality Commission (CQC) said it had put urgent restrictions on Summerfield House, in Birmingham, to stop any more people being admitted there. The home was looking after four residents with disabilities in August when CQC inspectors found a string of concerns. Records revealed episodes of physical, verbal and emotional abuse of the residents with staff making threats to cancel activities or threatening to call the police. The CQC found staff were not able to recognise abuse, citing an example where inspectors saw a person being hit on the head by another person with no action being taken. The watchdog’s report said abuse was happening between residents and staff. Debbie Ivanova, CQC deputy chief inspector for people with a learning disability and autistic people, said: “Our latest inspection of Summerfield House found a truly unacceptable service with a poor culture where abuse and people being placed at harm had become normal, with no action taken to prevent incidents from happening or reoccurring." Read full story Source: The Independent, 28 September 2021
  24. Event
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    The purpose of this event is to update anyone working to support people with learning disabilities and autistic people about the progress to date on the work currently taking place with partners to design, develop, trial and develop the training. It will allow stakeholders the opportunity to highlight issues arising from the trial. Who should attend? Anyone working to support people with learning disabilities and autism, including: Self advocates and user led groups Campaigners Health and social care employers Self-advocacy groups Training providers Commissioners of learning disability and autism services Register here
  25. Event
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    People with learning disabilities are at risk of dying too young, and dying unnecessarily. The Learning Disability Mortality Review (LeDeR) in England has found that too often, those deaths are a result of failings within health and social care provision. Reflecting on this has never been more important – during the pandemic, the inequalities that many people with learning disabilities face have been put into stark focus. Today we focus on the stories of Oliver’s and Richard's deaths, and on what lessons we can all learn from this. Oliver McGowan died in 2016. He was 18 years old. Oliver had mild learning disabilities and autism. A recent independent LeDeR review concluded Oliver’s death was avoidable. Richard Handley died in 2012 at the age of 33, from complications arising from constipation. He had Down syndrome and mental health problems. The inquest into his death concluded that their had been “gross failures” in his care and treatment. Paula McGowan and Sheila Handley share the stories of their sons’ lives, and of the healthcare failings that contributed to their deaths. Oliver’s and Richard’s stories are profoundly important and profoundly moving. Register
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