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Found 122 results
  1. News Article
    NHS England will ask GP practices to make ‘reasonable adjustments’ for patients with a learning disability or autism such as giving them ‘priority appointments’. They could also be asked to provide ‘easy-read appointment letters’ to the group, the Department of Health and Social Care (DHSC) said yesterday in a new strategy on strengthening support for autistic people and those with a learning disability. It said the measures aim to support Government plans to reduce reliance on mental health inpatient care, with a target to reduce the number of those with a learning disability or autism in specialist inpatient care by 50% by March 2024 compared with March 2015. The policy paper said: ‘We know that people experience challenges accessing reasonably adjusted support which may prevent them from having their needs met.’ It added: ‘To make it easier for people with a learning disability and autistic people to use health services, there is work underway in NHS England to make sure that staff in health settings know if they need to make reasonable adjustments for people." NHS England is also developing a ‘reasonable adjustments digital flag’ that will signal that a patient may need reasonable adjustments on their health record, it said. It plans to make this flag, which is currently being tested, available across all NHS services, it added. Read full story Source: Pulse 15 July 2022
  2. Content Article
    The LeDeR programme, funded by NHS England and NHS Improvement, was established in 2017 to improve healthcare for people with a learning disability and autistic people. LeDeR aims to: Improve care for people with a learning disability and autistic people. Reduce health inequalities for people with a learning disability and autistic people. Prevent people with a learning disability and autistic people from early deaths. LeDeR summarises the lives and deaths of people with a learning disability and autistic people who died in England in annual reports. The 2021 reports were made by researchers at King’s College London collaborating with academic partners at the University of Central Lancashire and Kingston-St George’s University, London, copies of which can be accessed from the link below along with a video summary of the findings and “TakeHome” posters.
  3. News Article
    An ‘outstanding’ rated mental health trust has been criticised by the Care Quality Commission (CQC) for ‘unsafe’ levels of staffing and inadequate monitoring of vulnerable patients. The CQC said an inpatient ward for adults with learning disabilities and autism run by Cumbria Northumberland Tyne and Wear Foundation Trust “wasn’t delivering safe care”, and some staff were “feeling unsafe due to continued short staffing”, following an unannounced inspection in February. The inspection into Rose Lodge, a 10-bed unit in South Tyneside, took place after the CQC received concerns about the service. Inspectors highlighted a high use of agency staff, with some shifts “falling below safe staffing levels”, which meant regular monitoring of patients with significant physical health issues “was not always taking place”. They said the trust had “implemented a robust action plan” following the inspection. The CQC did not issue a rating. The trust’s overall rating for wards for people with a learning disability remains as “good”, and its overall rating remains “outstanding”. Read full story (paywalled) Source: HSJ, 8 July 2022
  4. Content Article
    The poor treatment of autistic people and people with learning disabilities has been a long-standing problem for the NHS and care system. Although successive governments have focused on supporting autistic people and people with learning disabilities to live independent and fulfilled lives in the community, over 2,055 people remain in secure institutions where they are unable to live fulfilled lives and are often subject to unacceptable and inhumane treatment. This report by the Health and Social Care Select Committee chaired by Jeremy Hunt MP outlines the finding of the committee's Inquiry into the treatment of autistic people by health and care services.
  5. Content Article
    In 2016, 18 year-old Oliver McGowan died after being inappropriately prescribed antipsychotic medications. Oliver had high functioning autism, mild hemiplegia and epilepsy, and had experienced previous well-documented adverse reactions to these medications. On admission to hospital, both Oliver and his parents had been clear about the fact that he should not be given any form of antipsychotic. In this interview for Woman's Hour, Oliver's mum Paula talks about Oliver and the events that led to his death, as well as discussing new mandatory training for all health and social care staff that was passed into law as part of the Health and Care Act 2022 - The Oliver McGowan Mandatory Training in Learning Disability and Autism. This will ensure that all staff working health and social care receive learning disability and autism training appropriate for their role, which will in turn improve outcomes for people with learning disabilities. The interview can be found at 34 minutes 10 seconds into the programme.
  6. 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
  7. 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
  8. 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
  9. 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
  10. 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
  11. 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
  12. 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.
  13. News Article
    Tens of thousands more women tested themselves for autism last year with numbers seeking tests now far outstripping men, new data shows. Statistics seen by The Independent show around 150,000 women took an online test verified by health professionals to see if they have autism last year, up from about 49,000 in 2020. Health professionals said the increase was a consequence of women not being diagnosed with the neurodevelopmental disorder as children and teens due to autism wrongly being viewed as a male disorder. Experts told The Independent autistic women and girls are routinely overlooked and neglected by health services due to them being more likely to conceal or internalise symptoms. Data from Clinical Partners, one of the UK’s leading mental health care providers which works closely with the NHS, shows women made up 56 per cent of those using their autism tests last year. This is substantially higher than the 46 per cent of women testing themselves for autism in 2020. Hannah Hayward, neurodevelopmental specialist at Clinical Partners, who provided the exclusive data, explained: “Diagnosis is crucial – without which, women and men can be susceptible to symptoms of mental health conditions including anxiety and depression and it is common for them to be misdiagnosed with or develop other conditions such as anxiety, anorexia, depression or Borderline Personality Disorder,” Read full story Source: The Independent, 23 March 2022
  14. News Article
    Members of the House of Lords have passed an amendment to the Health and Care Bill to enshrine mandatory training for health and care staff on learning disabilities and autism in law. The Oliver McGowan Mandatory Training in Learning Disabilities and Autism programme is being developed by Health Education England in partnership with organisations such as Skills for Care and the Department of Health and Social Care, and alongside Oliver’s family. “It means that organisations have no choice but to free up their staff to attend this training” The training is named after Oliver whose death shone a light on the need for health and social care staff to have better training on learning disabilities and autism, and has been campaigned for by his parents Paula and Tom McGowan who believe his death was avoidable. The 18-year-old, who had mild hemiplegia, focal partial epilepsy, a mild learning disability and high-functioning autism, died in November 2016 after he was given antipsychotic medication even though he and his family warned it could be harmful to him. Following campaigning efforts and a consultation on training proposals for health and care staff, in November 2019, the government committed to developing a standardised training package. It draws on existing best practice, the expertise of people with autism, people with a learning disability and family carers and subject matter experts. Read full story Source: Nursing Times, 18 March 2022
  15. 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.
  16. News Article
    Thomas Hebbron is one of the forgotten victims of the pandemic. He was diagnosed with leukaemia in February 2019 - a year before Covid hit the UK. The eight-year-old, from Leeds, has been treated with chemotherapy which has continued throughout the pandemic, but his health has suffered in other ways - and his mother believes the unrelenting focus on the virus is to blame. Pre-pandemic he was seen in person by doctors every two weeks. But that changed to monthly video calls, and liver and urinary problems went undetected. His treatment also affected his fine motor skills and has weakened his legs, but he has not seen an occupational therapist since before the pandemic. "I want to take this pain away from him," says his mother, Gemma. "I don't want to sit and watch him in this pain, but I can't do anything. I just feel completely helpless." Thomas's story is not unique. An analysis by the Nuffield Trust and Health Foundation has for the first time laid bare how access to core health services in England has been squeezed, threatening to leave behind a generation of 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. The Nuffield Trust and Health Foundation have been joined by the Royal College of Paediatrics and Child Health (RCPCH) in calling for a dedicated plan for children to help them recover from the pandemic. Dr Camilla Kingdon, RCPCH president, said the figures "do not take into account the many other 'hidden' waiting lists of children waiting for community therapies and diagnostic assessments, especially for autism". She added that children are "struggling" and, despite services being stretched, no-one should be deterred from speaking to a health professional. Read full story Source: BBC News, 18 February 2022
  17. 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
  18. Content Article
    This non-statutory guidance from the UK Government aims to support education, health and care settings and services in putting in place measures which will help them: understand the needs of children and young people, including the underlying causes of and triggers for their behaviour. develop strategies and plans to meet those needs and regularly review them as children change. adapt the environments in which children and young people are taught and cared for so as better to meet their needs. provide appropriate support for children and young people whose behaviour challenges, without the use of restraint or restrictive intervention. It sets out relevant law and guidance and provides a framework of core values and key principles to support: a proactive approach to supporting children and young people whose behaviour challenges. a reduction in the need to use restraint and restrictive intervention.
  19. 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
  20. 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,
  21. Content Article
    This paper in the Journal of Intellectual Disabilities and Offending Behaviour describes the nature and impact of a restraint reduction strategy implemented within a secure learning disability service in response to the national Positive and Safe programme. Once the programme was completed, the following results were achieved: prone restraint was eliminated mechanical restraint was eliminated 42% reduction in general use of restraint 42% reduction in use of seclusion 52% reduction in rapid tranquilisation.
  22. 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
  23. 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.
  24. 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.
  25. 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
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