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Found 118 results
  1. News Article
    A hospital trust has admitted that a young autistic boy should still be alive had they delivered the appropriate level of care. In an exclusive interview with ITV News, the day before the inquest into his death, Mattheus Vieira's heartbroken parents described him as "special", adding: "And special in a good way, not just special needs." "People may think because he was autistic he was difficult, but it's not the case, he was very easy. "He was the boss of the house, we just miss his presence." Mattheus, aged 11, was taken to King's Lynn Hospital, in Norfolk, with a kidney infection. He struggled to cope with medical staff taking observations, and his notes recorded him as "uncooperative". His dad, Vitor Vieira, told ITV News: "He doesn't like to be touched, even a plaster he doesn't like. "And they say 'Oh he does not co-operate'. He was an autistic boy, what do you expect? Mr Vieira believes staff did not understand his son's behaviour. Mattheus was non verbal and so unable to articulate his distress. Observations were dismissed as "inaccurate" by some medical staff. In fact, they were accurate and indicated that his kidney infection had developed into septic shock. He suffered a cardiac arrest and died, aged 11. Read full story Source: ITV News, 26 February 2024
  2. 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.
  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
    Morgan-Rose Hart died after she was found unresponsive while being detained under section 3 of the Mental Health Act at the Derwent Centre at the Princess Alexandra Hospital in Essex. Morgan-Rose was last clinically observed at 14.06 on 6 July 2022 and in between the last observation and when Morgan-Rose was discovered the Coroner notes that multiple failings in her care took place, including consecutive hours observations being incorrect and falsified.
  5. News Article
    The average wait for an autism diagnosis in England has hit 300 days, according to new NHS data. That is up 53% from 12 months prior and exceeds the NICE target of 91 days. The National Autistic Society described such wait times as appalling, warning "autistic people shouldn't miss out on vital support because they haven't got a timely assessment." A government spokesperson said it had made £4.2m available this year to improve services for autistic children. Rose Matthews, 63, from County Durham, said receiving an autism diagnosis had been "lifesaving - and I don't say that flippantly". Before receiving their diagnosis at the age of 59, Rose, who uses "they" and "them" as personal pronouns, said: "My life was unravelling. "My career was unravelling." They said their GP had "deeply misguided ideas about what being autistic meant" and brushed them aside. Joey Nettleton-Burrows, policy and public affairs manager for the National Autistic Society (NAS), said: "We do see lot of misunderstanding from people, and it can include health and social care staff, but I wouldn't say it is common with GPs." Read full story Source: BBC News, 15 December 2023
  6. News Article
    The NHS and a local council have been told to urgently find a home for a 28-year-old autistic man who is facing psychological and physical abuse within a mental health hospital, after an independent review of his care. Nicholas Thornton has autism and learning disabilities and is currently being held in the Rochford mental health unit, in Essex, after a decade of being locked away in places not able to care for him adequately. Now an independent safeguarding review into his care provided at the Essex hospital has ordered the local authority and NHS to find him a home in the community because his relationship with hospital staff has become so bad he is facing psychological and physical harm. He is one of the 2,045 people with learning disabilities and autism trapped within inpatient units across England. Mr Thornton has been in the unit, run by the Essex Partnership University NHS Foundation Trust (EPUT), since May this year. He is not under a mental health section, nor does he need mental health treatment, but he is unable to leave because the local authority has not agreed on a place into which he can be discharged. EPUT is currently facing a public inquiry probing the deaths of 2,000 patients following multiple reviews since 2016 from coroners, the police and health ombudsman criticising the care within the hospital. A safeguarding report into Mr Thornton’s situation, seen by The Independent and Channel Four News, revealed staff working in the Rochford hospital told investigators they cannot adequately care for Mr Thornton themselves as they are not trained in supporting patients with autism. Read full story Source: The Independent, 13 December 2023
  7. 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
  8. 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.
  9. 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."
  10. News Article
    Children are waiting years for autism and cerebral palsy treatments as NHS leaders accuse the government of ignoring warnings of a crisis in community care. The number of patients waiting for NHS community services hit more than one million in August and a new analysis has revealed one in five of those patients are children. The waits are so bad in some areas of England that a 12-year-old needing treatment might not get it until they are 16, the NHS Community Services Network warned. The analysis, by NHS Confederation and NHS Providers, also found 34,000 children have been waiting more than 18 weeks for diagnosis and care, which is the maximum time anyone should be waiting, with the backlogs growing quickly in spinal and eye care. Matthew Taylor, chief executive for NHS Confederation, which represents hospitals, community service providers and primary care, told The Independent that long waits can impact children more severely than adults because delays in treatment can have a knock-on effect on communication skills, social development and educational as well as mental wellbeing. “We have a real and growing problem with long waits in community services, but despite repeated warnings that neglect of these vital services is having a detrimental impact on patients, these warnings seem to be met with a shoulder shrug from the government. Leaders are working incredibly hard to deliver these important services for patients but are fighting a rising tide and need help,” he said. Read full story Source: The Independent, 20 October 2023
  11. News Article
    Dozens of young autistic people have died after serious failings in their care despite repeated warnings from coroners, BBC News has found. Their investigation found issues that were flagged a decade ago are still being warned about now. Two bereaved mothers said lessons had not been learned by their local health authority after the deaths of their teenage sons, two years apart. The coroner who oversaw both cases, noted a repeated failure in care. After the first death, the coroner criticised NHS Kent and Medway for "inadequate support" and said a similar incident may happen if this continued. Two years later, the second autistic teenager died under the care of the same authority. The same coroner found that had the victim received the recommended level of care, he might have got the therapy he needed. In the first piece of research of its kind, the BBC combed through more than 4,000 Prevention of Future Death (PFD) notices delivered in England and Wales over the past 10 years. Read full story Source: BBC News, 7 September 2023
  12. 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.
  13. Content Article
    In her first blog as Interim Director of People with a Learning Disability and Autistic People, Rebecca Bauers talks about the importance of listening to the voices of people with lived experience; about how we have been gathering insight to shape our priorities, and how we intend to use our new powers to assess integrated care systems and local authorities.
  14. Content Article
    Rizwana Dudhia shares in the Pharmaceutical Journal how a project she initiated to prevent the prescribing of inappropriate medication improved the quality of life for patients with learning disabilities and autism.
  15. News Article
    Campaigners are planning to launch legal action after NHS chiefs in North Yorkshire placed limits on which adults can get referrals for autism and attention deficit hyperactivity disorder (ADHD) assessments. North Yorkshire and York Health and Care Partnerships introduced a pilot programme in March in which adults seeking an NHS assessment for autism or ADHD are triaged via an online screening tool. NHS chiefs say this screening process prioritises those with the most severe needs, rather than processing referrals in chronological order. These priority needs reportedly include the patient being at risk of immediate self-harm or harming others, at risk of being unable to have lifesaving hospital treatment or care placement, or an imminent risk of family court decisions being determined on diagnosis. Those who do not meet the criteria are given guidance and signposted to other support networks. But campaigners say that in practise that means that most people cannot get a referral for an assessment – GPs can no longer make referrals themselves. Read full story Source: The Big Issue, 19 July 2023 Related reading on the hub: Long waits for ADHD diagnosis and treatment are a patient safety issue
  16. News Article
    Children with suspected ADHD and autism are waiting as long as seven years for treatment on the NHS, as the health service struggles to manage a surge in demand during a crisis in child mental health. Experts said “inhumane” waits are putting a generation of neurodiverse children at risk of mental illness as they are “pushed to the back of a very long queue” for children and adolescent mental health services (Camhs). UK children with suspected neurodevelopmental conditions faced an average waiting time of one year and four months for an initial screening in 2022, more than three times longer than the average wait for all Camhs services, according to research carried out by the House magazine and shared with the Guardian. Half of all trusts responding to a freedom of information request had an average wait of at least a year, and at one-sixth of trusts it was more than two years. The NICE guidance for autism and mental health services stipulates that no one should wait longer than 13 weeks between being referred and first being seen. Read full story Source: The Guardian, 17 July 2023 Related reading on the hub: Long waits for ADHD diagnosis and treatment are a patient safety issue
  17. 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.
  18. Content Article
    Improving experiences and outcomes for children and adults who are autistic or have a learning disability, their families and carers Ask Listen Do resources are designed to: support organisations to listen, learn from and improve the experiences of children and adults who are autistic or have a learning disability, their families and carers make it easier for people, families and paid carers to give feedback, raise concerns and complain.
  19. Content Article
    This webpage outlines how the Care Quality Commission regulates providers supporting autistic people and people with a learning disability to enable the right support, right care and right culture.
  20. 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
  21. News Article
    "I knew I always felt different, but I didn't know I was autistic." For Rhiannon Lloyd-Williams, it would take until she was 35 to learn just why she felt different. Now research by Swansea University has found it takes on average six years longer to diagnose autism in women and girls than in males. A study of 400 participants found that 75% of boys received a diagnosis before the age of 10 - but only 50% of girls. It also found the average age of diagnosis in girls was between 10 and 12 - but between four and six for boys. Now charities in Wales are calling for greater investment into services to help better understand autism in females and speed up a diagnosis. "The parents responding to the study said there was a marked impact on the girls mental health while waiting for a diagnosis," said Steffan Davies, who carried out the research. "Girls represented in the study had a lot more pre-existing diagnosis, which suggests they are being misdiagnosed with anxiety disorders, eating disorders, and that tends to defer from the root diagnosis which tends to be autism." Autism UK said this gender gap has long been an issue and is the down to the diagnosis criteria and research used, which has been focused around young boys. "Many girls end up missing out on education, because the environment they're expected to learn in is just too overwhelming, while accessing healthcare can be difficult. Women are often not believed," said executive director Willow Holloway. Read full story Source: BBC News, 23 May 2022
  22. 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
  23. News Article
    "I thought she would be safe at Chadwick Lodge,” said Natasha Darbon, recalling how she felt in April 2019 when her 19-year-old daughter, Brooke Martin, was admitted to the mental health hospital in Milton Keynes. Eight weeks later, Brooke took her own life. The jury at the inquest found that Brooke’s death could have been prevented and that the private healthcare provider Elysium Healthcare, which ran the hospital, did not properly manage her risk of suicide. It also found that serious failures of risk assessment, communication and the setting of observation levels contributed to her death. Elysium accepted that had she been placed on 24-hour observations, Brooke would not have died. In 2018, Brooke, who was autistic, was repeatedly sectioned under the Mental Health Act because of her escalating self-harm and suicide attempts. After a spell in an NHS facility in Surrey she moved to Chadwick Lodge, which specialises in treating personality disorders. After a few weeks there, Brooke was doing well and staff were pleased with her progress. She was due to move to Hope House, a separate unit at the hospital, to start more specialist therapy for emotionally unstable personality disorder, and was keen to make the switch. But then the teenager’s mental health deteriorated again. On 5 June 2019 she tried to kill herself. Five days later she was seen twice that evening secretly handling potential ligatures, but no appropriate action was taken. A few minutes later she was found unresponsive in her room. She received CPR but died the next day in Milton Keynes university hospital. After hearing the evidence about the care Brooke received in her final days, Tom Osborne, the coroner at the inquest, took the unusual step of issuing a prevention of future deaths notice. He sent it to Sajid Javid, the health secretary, and to Elysium Healthcare, as the owner of Chadwick Lodge. It set out the detailed criticisms that the jury had made of Elysium’s interaction with Brooke after her attempt to take her own life on 5 June. They cited the hospital’s failures to communicate information regarding Brooke’s suicide attempt, to search her room after she was found handling potential ligatures on the night she died, and to place Brooke on constant observations afterwards. Read full story Source: The Guardian, 24 April 2022
  24. News Article
    A 14-year-old autistic girl was unlawfully detained in hospital and restrained in front of scared young patients, a high court judge has found. On one occasion last month the teenager managed to break into a treatment room where a dying infant was receiving palliative care. She was restrained there by three security guards, Mr Justice MacDonald said in a judgment in the family court that ordered Manchester city council (MCC) to find the girl a suitable community care placement instead of what he described as the “brutal and abusive” and “manifestly unsuitable” hospital environment. Nurses witnessed the girl screaming “very loudly” and sounding “very scared” when repeatedly held down on her hospital bed so that she could not move her legs, arms or head, before being tranquillised. Other children on the ward were frightened to witness the frequent battles between the girl and security guards, the judge said. The judge noted that the teenager made “regular and determined” efforts to run away, sometimes using screwdrivers to try to unlock doors and windows, and running away from her family on walks. He described the teenager as having an autistic spectrum disorder and a learning disability. She demonstrated “complex and extreme behaviour” that could not be controlled even within a school environment involving six adults to one child supervision, he added. Despite this, the council and NHS trust decided to have the girl be detained in hospital on a general paediatric ward “solely as a place of safety”, without applying for the necessary court order to do so, the judge found. She did not require any medical treatment, the judge said. Read full story Source: The Guardian, 5 April 2022
  25. News Article
    Children are having to wait up to five years for an NHS autism appointment, according to figures obtained by the Observer that lay bare the crisis in children’s mental health services. Figures acquired under the Freedom of Information Act show that 2,835 autistic children referrals at Coventry and Warwickshire Partnership NHS Trust have still not had a first appointment an average of 88 weeks after being referred. The longest wait at the time the response was sent in January stood at 251 weeks – nearly five years. Meanwhile, 1,250 children with attention deficit hyperactivity disorder (ADHD) referrals at the trust have yet to have a first appointment, having waited an average of 46 weeks – and 195 weeks in the worst case. Across 20 NHS trusts that provided figures, children with outstanding autism referrals have waited nearly six months on average for their first appointment. Cathy Pyle’s daughter, Eva, spent 20 months waiting for an autism assessment from her local NHS child and adolescent mental health services (CAMHS) in Surrey, having already had to wait 11 months for a mental health assessment after she became increasingly distressed during her first year of secondary school, culminating in self-harm. “The sensory aspects of her autism are really significant,” Pyle told the Observer. “So she found the crowding in the corridors, the jostling, being pushed and shoved – she found the noises really, really unbearable.” Dr Rosena Allin-Khan MP, Labour’s shadow cabinet minister for mental health, said: “The NHS does an incredible job with the resources that it has, however, long waits for treatment have a considerable impact on patients and families. It’s unacceptable that a six-month wait has become the standard for autism referrals, with many others waiting years to be seen, on the Conservatives’ watch. Waiting so long for treatment will have a detrimental impact on a child’s development.” Read full story Source: The Guardian, 4 April 2022
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