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Found 247 results
  1. Event
    until
    The Patient Safety Incident Response Framework (PSIRF) encourages investigations across the NHS to apply SEIPS. This 3 hour masterclass will focus upon using SEIPS in Learning Disability. The SEIPS trainer Dr Dawn Benson has extensive experience of using and teaching SEIPS, as a Human Factors tool, in health and social care safety investigation. She will be joined in these masterclass sessions by clinical subject experts. Register
  2. Content Article
    Constipation can be a life–threatening issue for people with a learning disability who are at heightened risk from complications if it is left untreated. This campaign has been developed by NHS England to support people with a learning disability, their carers and people who work in primary care to recognise the signs of constipation. Resources have been co–created with input from the Down’s Syndrome Association, Mencap and Pathways Associates to ensure that they are fit for purpose. The resources aim to: Drive awareness of the seriousness of constipation Help people recognise the signs of constipation at an early stage Empower people to take action and ensure that people with a learning disability experiencing constipation get the right health support straight away Raise awareness of the steps which can be taken to prevent constipation.
  3. 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.
  4. Content Article
    This policy sets out a framework describing how the Trust and its staff will respond to and learn from deaths that occur under their care.It will provide guidance for all staff involved in the mortality review process ensuring clarity on roles, responsibilities and expectations. Reviewing mortality can help make improvements to the quality of care received by patients at the Trust by identifying care related issues. This enables the identification of learning themes and provides evidence of a high standard of care. Mortality is a fundamental component of clinical effectiveness, one of the three dimensions of quality described by Lord Darzi in High Quality Care for all (2008). The Trusts aims are to: Have continuous improvement of our Hospital Standardised Mortality Ratios (HSMR) and the Trusts Standardised Hospital-Level Mortality Index (SHMI) Achieve a year-on-year reduction in avoidable mortality  Improve learning from mortality reviews Ensure robust and timely governance processes regarding mortality outcomes and reviews Provide assurance of mortality processes in the Trust.
  5. 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
  6. 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
  7. News Article
    An independent investigation into the death of a man with autism and learning difficulties in NHS care may never be published in full as his sister has rejected several drafts as inaccurate, telling NHS England they were ‘totally unethical’. Anthony Dawson died from a burst gastric ulcer in Ashmount, a residential care home run by Surrey and Borders Partnership Foundation Trust, in May 2015. The jury at an inquest into his death found there were gross failings in his care and his death was contributed to by neglect. NHS England commissioned an independent investigation into the incident from Sancus Solutions in June 2017. But seven years after Mr Dawson’s death the investigation’s report has yet to be published, despite several reports being submitted. His sister, Julia Dawson, has written to NHS chief executive Amanda Pritchard in recent weeks saying: “The investigation has not had my brother at its heart which we were assured would be the case” and that its reports had been “totally unethical”. Ms Dawson has asked that only the executive summary of the latest draft of the investigation be published, alongside a statement saying that she feels it has inaccuracies and misses out important points. She says that successive drafts have misrepresented her brother’s situation and failed to address what she believes was the real cause of his death – the frequent use of NSAIDs (ibuprofen) without any measures taken to protect his stomach. This ultimately led to the undiagnosed gastric ulcer bursting. An expert witness told the inquest into his death that treatment with proton pump inhibitors and stopping NSAIDs would have eradicated the ulcer. Read full story (paywalled) Source: HSJ, 4 April 2022
  8. 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
  9. News Article
    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
  10. News Article
    Hospital passports need to be more consistently used across the NHS to better support patients with communication difficulties, a learning disability nurse says. Support for patients with communication needs and learning disabilities, as well as the nurses caring for them, is often ‘inconsistent’, according to RCN professional lead for learning disabilities Jonathan Beebee. Coupled with the current system-wide pressure of patient backlogs and high staff vacancy rates it means patients often do not have their communication needs met. A hospital passport, which contains vital information about a patient’s health condition, learning disability and communication needs, would help address this, Mr Beebee told Nursing Standard. "There has got to be better consistency in how we are identifying people with communication needs, how they are getting flagged and how nurses are being pointed to that from the second that someone is admitted to the ward," he said. Mr Beebee says ensuring a standardised approach would improve patient experience and ultimately nurses’ relationship with patients. Read full story Source: Nursing Standard, 27 July 2022
  11. News Article
    Nearly half (49%) of all deaths of people with a learning disability in 2021 were deemed to be avoidable, a major annual report has found. By comparison, just 22% of deaths were classified as avoidable among the overall general population in 2020. A new report, led by King’s College London and produced for NHS England – identified that of those avoidable deaths among people with learning disabilities, 65.5% died in hospital. The learning from life and death reviews programme (LeDeR) report also revealed that the Midlands and North West showed the greatest difference in avoidable to unavoidable deaths at 53%, compared to 48% in London. And when looking at individual long-term conditions, 8% of avoidable deaths were related to cancer, 17% to diabetes, 14% to hypertension, and 17% to respiratory conditions. It also found that: More than 50% of people with a learning disability died in areas rated as some of the most deprived in England Around six out of 10 people with a learning disability die before age 65, compared to 1 in 10 from the general public On average, men with a learning disability die 22 years younger than men from the general population. Read full story Source: Healthcare Leader, 18 July 2022
  12. 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
  13. News Article
    When Susan Sullivan died from Covid-19, her parents’ world fell quiet. But as John and Ida Sullivan battled the pain of losing their eldest, they were comforted by doctors’ assurance that they had done all they could. It was not until more than a year later, when they received her medical records, that the family made a crushing discovery. These suggested that, despite Susan being in good health and responding well to initial treatments, doctors at Barnet hospital had concluded she wouldn’t pull through. When Susan was first admitted on 27 March 2020, a doctor had written in her treatment plan: “ITU (Intensive therapy unit) review if not improving”, indicating he believed she might benefit from a higher level of care. But as her oxygen levels fell and her condition deteriorated, the 56-year-old was not admitted to the intensive unit. Instead she died in her bed on the ward without access to potentially life-saving treatment others received. In the hospital records, seen by the Observer, the reason Susan was excluded is spelled out: “ITU declined in view of Down’s syndrome and cardiac comorbidities.” A treatment plan stating she was not to be resuscitated also cites her disability. For John, 79, a retired builder, that realisation was “like Susan dying all over again”. “The reality is that doctors gave her a bed to die in because she had Down’s syndrome,” he said. “To me it couldn’t be clearer: they didn’t even try.” Susan is one of thousands of disabled people in Britain killed by Covid-19. Last year, a report by the Learning Disabilities Mortality Review Programme found that almost half those who died from Covid-19 did not receive good enough treatment, including problems accessing care. Of those who died from Covid-19, 81% had a do-not-resuscitate decision, compared with 72% of those who died from other causes. Read full story Source: The Guardian, 10 July 2022
  14. 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
  15. News Article
    Vulnerable patients cared for in secure mental health units across England could miss out on vital medications due to a shortage of learning disability nurses, the Healthcare Safety Investigation Branch (HSIB) has warned. The report into medication omissions in learning disability secure units across the country highlights problems with retaining learning disability nurses, with the number recruited each year matching those leaving. Figures quoted in the report suggest the number of learning disability nurses in the NHS nearly halved from 5,500 in 2016 to 3,000 in 2020. The HSIB launched a national investigation after being alerted to the case of Luke, who spent time in NHS secure learning disability units but was not administered prescribed medication for diabetes and high cholesterol on several occasions. At Luke’s facility, which included low and medium secure wards, HSIB investigators considered that the quality and style of care provided to patients had been directly impacted by a lack of nurses with required skill sets. Findings from HSIB’s wider national investigation link a shortfall of learning disability nurses to instances of patients missing their medication, with the report’s authors describing a “system in which medicines omissions were too common and prevention, identification and escalation processes were not robust”. Read full story (paywalled) Source: HSJ, 23 June 2022
  16. News Article
    An ‘outstanding’ rated acute trust has been served with a warning notice by the Care Quality Commission (CQC) and told to make ‘significant and immediate improvements’ to its mental health and learning disabilities services. The CQC said staff at Newcastle upon Tyne Hospitals Foundation Trust had not always carried out mental capacity assessments when people presented with mental health needs. And this included when decisions were made to restrain patients in the emergency department. A CQC warning notice, published alongside a report of an inspection between 30 November and 1 December last year, says the trust must make “significant and immediate improvements in the quality of care being provided” to people with mental health issues, learning disabilities or autism. The warning notice also says the trust must ensure people with a learning disability and autistic people “receive care which meets the full range of their needs”. The trust’s records “did not show evidence that staff had considered patients’ additional needs,” the regulator said. Read full story (paywalled) Source: HSJ, 24 February 2023
  17. News Article
    Nearly half of NHS patients with a learning disability or autism are still being kept inappropriately in hospitals, several years into a key programme to reduce inpatient care, a national review reveals. The newly published review by NHS England suggests 41% of inpatients, assessed over an eight-month period to May 2022, should be receiving care in the community. Reasons given for continued hospital care in the NHSE review included lack of suitable accommodation, with 19% having needs which could be delivered by community services; delays in moving individuals into the community with appropriate aftercare; legal barriers, with one region citing “ongoing concerns for public safety” as a barrier for discharge; and no clear care plans. In some cases, individuals were placed in psychiatric intensive care units on a long-term basis, because “there was nowhere else to go”, while another instance cited a 20-year stay in hospital. Other key themes included concerns about staff culture, particularly “institutionalisation” and suggestions that discharge delays were not being sufficiently addressed. The report adds: “While the process around discharge can be time consuming, staff may perpetuate this by accepting such delays as necessary or inevitable.” Read full story (paywalled) Source: HSJ, 22 February 2023
  18. News Article
    A police investigation is under way into allegations of abuse at an NHS-run home for men with severe learning disabilities and autism, it has emerged. Several staff from the home have already been “removed” from the site by Surrey and Borders Partnership Foundation Trust, although the trust would not comment on whether any disciplinary action has been taken against them. The home – Oakwood, in Caterham, Surrey – will close at the end of the summer in response to the failings, the trust said. No one has been charged in relation to the allegations, which HSJ understands focus on coercive behaviour and unnecessary deprivation of liberty, with no allegations of violent or sexual behaviour. Read full story (paywalled) Source: HSJ, 9 June 2023
  19. News Article
    One of the first studies to examine the full lifespan of people living with Down syndrome (DS) has provided evidence in support of health guidelines specifically for people with the condition. Life expectancy for people with DS had increased dramatically over the last 80 years or so, yet people with the condition still died at an earlier age than people in the general population or those with other intellectual disabilities, said the authors of a new study, published in The Lancet. This meant that there was an "opportunity to improve health outcomes for this minority", they said. There continued to be disparities in surveillance, diagnosis, and treatment of common health conditions in people with intellectual disabilities, including those with DS, highlighted the authors, with ongoing premature mortality and excess morbidity identified in these groups. In April 2022, the Down Syndrome Act was introduced in England, which stipulated that the Government must provide information to the NHS and local councils on how to provide the most appropriate care and support for people with DS. Read full story Source: Medscape, 26 May 2023
  20. News Article
    The Government’s “blanket erasure” of older people with learning disabilities is leaving a growing population unsupported and piling further pressure on family carers, new research will warn. Byline Times has seen early findings from a forthcoming national study which outlines the urgent need to avoid a crisis by creating a government strategy for this unacknowledged community. With around 1.5 million people with learning disabilities in the UK, Manchester Metropolitan University (MMU)’s ‘Growing Older Planning Ahead‘ research lays bare the Government’s short-sighted approach to learning disability support. The study estimates around 81,000 over-50s within this population in England alone, many of whom are not in contact with services. In addition, figures show that between 2012 and 2030 in England, the number of learning disabled people needing social care will have increased by almost 70% (from more than 140,000 to 235,000). Sara Ryan, MMU Professor of Social Care who led the three-year project, said: “Ageing opens up all sorts of different things, you turn down the dial on some things and up on others. If you’re lucky enough, you have a lot to look forward to – but for people with learning disabilities, there’s a blanket erasure of age.” Read full story Source: Byline Times, 3 May 2023
  21. News Article
    The care watchdog is investigating possible safeguarding failures at an NHS trust after a documentary uncovered figures showing there were 24 alleged rapes and 18 alleged sexual offences in just three years at one of its mental health hospitals. The Care Quality Commission (CQC) told Disability News Service (DNS) that it had suspended the trust’s ratings for wards for people with learning difficulties and autistic people while it carried out checks. The figures were secured by the team behind Locked Away: Our Autism Scandal, a film for Channel 4’s Dispatches, which revealed the poor and inappropriate treatment and abuse experienced by autistic people in mental health units. None of the alleged rapes at Littlebrook Hospital in Dartford, Kent, led to a prosecution, with allegations of 12 rapes and 15 further sexual offences dropped because of “evidential difficulties” and investigations into 12 other alleged rapes and two sexual offences failing to identify a suspect. A CQC spokesperson said: “Sexual offences are a matter for the police in the first instance. “However, we take reports of sexual offences seriously and review them all, and raise these issues directly with the trust. “We do this alongside involvement from police and local authority safeguarding teams’ own investigations and monitor any actions and outcomes taken by the trust to ensure people are kept safe." Read full story Source: 30 March 2023
  22. Content Article
    This prevention of future deaths report looks at the death of Ben King, who died of acute respiratory failure, obesity hypoventilation syndrome and use of sedative medication. Ben had Down's Syndrome and obstructive sleep apnoea and had been detained under the Mental Health Act at Jeesal Cawston Park (JCP) from 2018. Ben’s weight as at June 2019 was recorded at 85.2 kg which had risen to 106 kg by June 2020. He was given the sedative Promethazine after becoming agitated and found unresponsive on 29 July 2020. He died later that day at  Norfolk and Norwich University Hospital.
  23. Content Article
    The average life expectancy for people with a learning disability is significantly lower than for the general population. Sadly, many of these premature deaths are avoidable.  Mandy Anderton is a Clinical Nurse specialising in learning disability. In this interview she explains some of the barriers people with a learning disability face in accessing safe care and how adjustments can be made within GP practices to improve outcomes.  Mandy ends with a list of national improvements that she believes would reduce health inequalities in this area. 
  24. News Article
    Mandatory training for treating people with autism and learning disabilities is being rolled out for NHS health and care staff after a patient died. It comes after Oliver McGowan, 18, from Bristol, died following an epileptic seizure. At the time, in November 2016, he had mild autism and was given a drug he was allergic to despite repeated warnings from his parents. His mother Paula lobbied for mandatory training to potentially "save lives". A spokesman for the NHS said the training had been developed with expertise from people with a learning disability and autistic people as well as their families and carers. The first part of the Oliver McGowan Mandatory Training is being rolled out following a two-year trial involving more than 8,300 health and care staff across England. Mark Radford, chief nurse at Health Education England said: "Following the tragedy of Oliver's death, Paula McGowan has tirelessly campaigned to ensure that Oliver's legacy is that all health and care staff receive this critical training. "Paula and many others have helped with the development of the training from the beginning. "Making Oliver's training mandatory will ensure that the skills and expertise needed to provide the best care for people with a learning disability and autistic people is available right across health and care." Read full story Source: BBC News, 2 November 2022
  25. News Article
    New research led by Queen Mary University of London (QMUL) and King's College London (KCL) has shown that children with Down Syndrome (DS) are up to 10 times more likely to be diagnosed with diabetes. Although elevated rates of both type 1 diabetes and obesity in DS were already recognised, this is the first time that the incidence of these comorbidities has been mapped across the life span, in one of the biggest DS cohorts in the world. The authors concluded: "Our study shows that patients with DS are at significantly increased risk of diabetes at a younger age than the general population, with more than four times the risk in children and young adults and more than double the risk in patients aged 25–44 years." They added: "The underlying mechanisms for this increased susceptibility for diabetes in DS still need further investigation. A combination of factors, including genetic susceptibility, predisposition to auto- immunity, mitochondrial dysfunction, increased oxidative stress, and cellular dysfunction, are thought to contribute to this risk." Corresponding author Andre Strydom, professor in intellectual disabilities at KCL, said: "This is the largest study ever conducted in Down Syndrome patients to show that they have unique needs with regards to diabetes and obesity, and that screening and intervention – including a healthy diet and physical activity – at younger ages is required compared with the general population. "The results will help to inform the work of NHSE's LeDeR programme to reduce inequalities and premature mortality in people with Down Syndrome and learning disabilities." Read full story Source: Medscape UK, 5 October 2022
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