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Showing results for tags 'Autism'.
Found 122 results
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News Article
Met investigates 'stem-cell autism cure' claim
Patient Safety Learning posted a news article in News
The Met Police has launched an investigation over concerns about stem-cell injections being offered to children as a cure for autism. The Royal Borough of Greenwich told BBC London it was aware of concerns surrounding "experimental procedures" on autistic children. The Met said it was investigating "a reported fraud relating to the provision of medical services". The National Autistic Society said there was no "cure" for autism. Greenwich Council said it issued a warning to schools and nurseries in the borough after it became aware of concerns. A spokesperson said the authority had recently been made aware of concerns that "an individual claiming to be a doctor plans to visit the UK to offer dangerous, experimental procedures on children with autism". "We understand that this person is proposing the transfer of bone marrow and spinal fluid to the brain by injection," the spokesperson said. "This unlicensed procedure poses a significant threat to life and there is no evidence of any benefits. "The safety and welfare of our children and young people is of the utmost importance." Read full story Source: BBC News, 17 April 2024 -
News Article
NHS faces ‘avalanche’ of demand for autism and ADHD services, thinktank warns
Patient Safety Learning posted a news article in News
The NHS is experiencing an “avalanche of need” over autism and attention deficit hyperactivity disorder (ADHD), but the system in place to cope with surging demand for assessments and treatments is “obsolete”, a health thinktank has warned. There must be a “radical rethink” of how people with the conditions are cared for in England if the health service is to meet the rapidly expanding need for services, according to the Nuffield Trust. The thinktank is calling for a “whole-system approach” across education, society and the NHS, amid changing social attitudes and better awareness of the conditions. It comes days after the NHS announced a major review of ADHD services. Thea Stein, the chief executive of the Nuffield Trust, said: “The extraordinary, unpredicted and unprecedented rise in demand for autism assessments and ADHD treatments have completely overtaken the NHS’s capacity to meet them. It is frankly impossible to imagine how the system can grow fast enough to fulfil this demand. “We shouldn’t underestimate what this means for children in particular: many schools expect an assessment and formal diagnosis to access support – and children and their families suffer while they wait.” Read full story Source: The Guardian, 4 April 2024 -
Content ArticleLong waiting times for autism and attention deficit hyperactivity disorder (ADHD) assessments can prevent people from getting the vital care and medication they need. Health and education support often relies on a formal diagnosis, without which there can be severe negative consequences. Estimates show that there might be as many as 1.2 million autistic people and 2.2 million people with ADHD in England, and providing them with the right support is no small task. Recent news reports have highlighted a huge rise in demand for autism and ADHD diagnoses amid increased awareness and understanding of neurodiversity. Exploring referrals and waits for autism and ADHD assessments is a key first step to understanding the scale of the issue, which can then be used to drive improvements and change. This blog from the Nuffield Trust looks at what the data is telling us.
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News ArticleA 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
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Content ArticleThis 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.
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Content ArticleThis 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.
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Content ArticleMorgan-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.
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News Article
Autism diagnosis wait times hit 300 days
Patient Safety Learning posted a news article in News
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 -
News ArticleThe 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
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News ArticleTwo 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
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Content ArticleIn 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.
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Content ArticleThe 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."
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News ArticleChildren 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
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News Article
Young autistic people still dying despite coroner warnings over care
Patient Safety Learning posted a news article in News
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 -
Content ArticleRebecca 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.
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Content ArticleIn 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.
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Content ArticleRizwana 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.
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News Article
ADHD and autism campaigners plan legal action against NHS over referral limits
Patient Safety Learning posted a news article in News
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 -
News Article
UK children waiting 16 months on average for ADHD and autism screening
Patient Safety Learning posted a news article in News
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 -
Content ArticleThis 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.
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Content ArticleImproving 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.
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Content ArticleThis 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.
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Content ArticleThis NICE guideline covers services for children, young people and adults with a learning disability (or autism and a learning disability) and behaviour that challenges. It aims to promote a lifelong approach to supporting people and their families and carers, focusing on prevention and early intervention and minimising inpatient admissions.
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News Article
Government launches consultation on minimum standards for GP autism training
Patient Safety Learning posted a news article in News
The Government is consulting on a draft code of practice which will ensure health and care staff, including GPs, receive training on learning disabilities and autism ‘appropriate to their role’. Since July last year, all CQC-registered health and social care providers including GP practices in England have been required to provide training for their staff in learning disability and autism, including how to interact with autistic people and people who have a learning disability. The legal requirement was introduced by the Health and Care Act 2022, but the Government has now launched a consultation on the Oliver McGowan Code of Practice, which outlines how providers can meet the new requirement. The BMA’s GP Committee last month said that the Act does not specify a training package or course for staff and that the CQC ‘cannot tell practices specifically how to meet their legal requirements in relation to training’. The Government’s draft code says that CQC-registered providers must ensure that all staff, regardless of role or level of seniority, have ‘the right attitude and skills to support people with a learning disability and autistic people’ and will need to demonstrate to the CQC how their training meets or exceeds the standards set out in the code. Read full story Source: Pulse, 29 June 2023 -
Content ArticleThis report by the charity INQUEST, which provides expertise on state related deaths and their investigation to bereaved people, highlights that families are facing persistent challenges following the death of a loved one in mental health services. Based on conversations at one of INQUEST’s Family Consultation Days, the report shows that families face numerous hurdles during investigations and inquests into their loved ones’ deaths, and that processes are not delivering the change required. The Family Consultation Day heard from 14 family members who were bereaved by deaths in the care of mental health services or settings for people with learning disabilities and/or autism, and had faced or were going through inquests and investigations.
