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Found 250 results
  1. 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
  2. Content Article
    Calculating nurse staffing in the acute hospital has become a key issue but solutions appear distant. Community, mental health and areas such as learning disability nursing have attracted less attention and remain intractable. This review from Leary and Punshon aimed to examine current approaches to the issue across many disciplines.
  3. 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
  4. Event
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    The 2023 Mental Health Network Annual Conference and Exhibition will bring together over 130 senior leaders from the mental health, learning disability and autism sector for lively discussions on the future of services, to share good practice, horizon scan, and network with their peers. The next year brings a range of opportunities and challenges for mental health providers. Organisations are continuing to deliver services whilst facing unprecedented community need, workforce shortages and with the cost of living risking eroding the mental wellbeing of the wider population. Even with these challenges, 2023 presents a year of opportunities. This includes funding secured to continue to deliver the NHS Long Term Plan, a new landscape of integrated care, significant community transformation work underway, and key bills passing through parliament aimed at improving the policy environment mental health providers operate in. The Network’s members will once again come together to focus on the challenges and opportunities the mental health sector faces within the changing context. Register
  5. Content Article
    Mandy Anderton is a Clinical Nurse specialising in learning disability and a hub Topic Leader. Last month we asked her how GP practices can help improve health outcomes for people with learning disabilities. In this new blog, Mandy talks in depth about the cross-system programme they launched in Salford to improve the health of people with learning disabilities and reduce inequalities across primary care. Mandy shares their award-winning poster (attached), summarising the programme’s activities and outcomes, and gives her top tips for delivering a successful patient safety improvement project.
  6. Content Article
    Peter Seaby had Down's Syndrome and autism and was cared for at home by members of his family for 62 years. However, in 2017, Peter was removed from the home he shared with his sister Karen, who was his full time carer, and placed in a care home. Karen and Peter's brother Mick were not told by social services why Peter was moved. Within six months of being in the home, Peter choked on a carrot and died. Karen and Mick found the subsequent inquest into Peter's death in July 2021 to be inadequate and launched a Judicial Review challenge which was successful in quashing the findings of the initial inquest. A new inquest was held in February 2023 Journalist George Julian has been following and reporting on Peter's second inquest and has written several blog posts about the case, highlighting serious failings in his care that led to his death: Peter Seaby’s 2nd inquest – how he came to be in the care of the Priory Group Peter Seaby’s 2nd inquest “I have stood on my own in this” Peter Seaby’s 2nd inquest – the SALT plan Peter Seaby’s 2nd inquest – record keeping and decision making Peter Seaby’s 2nd inquest – April 2018 Peter Seaby’s 2nd inquest – May 2018 Peter Seaby’s 2nd Inquest – Conclusion
  7. Content Article
    This report is aimed at people who are working with those who have a learning disability, in the role of commissioners or providers of services. It was produced on behalf of the Hampshire Safeguarding Adults Board by a multi-agency group and seeks to understand why people with a learning disability are at greater risk of choking, looking at what can be done locally in Hampshire to improve outcomes for people who are at risk of choking, in any care setting. The report makes a number of recommendations based on common sense and good practice.
  8. Content Article
    Dysphagia is the medical term for swallowing problems. There are different causes and types of dysphagia, and difficulties in any of the main stages of the eating, drinking and swallowing process can be called dysphagia. This guidance from Public Health England provides information on different aspects of making reasonable adjustments for people at risk of dysphagia including: Assessment of dysphagia Management of dysphagia Consent and capacity The attached PDF includes an easy-read summary of the guidance.
  9. Content Article
    Difficulty in swallowing—known as dysphagia—is a serious problem for some adults with learning disabilities and, in serious instances, can lead to death. Improving the safety of people with dysphagia is essential, and introducing individual patient management guidelines can reduce the risks associated with this potentially life-threatening condition. This document from the NHS National Patient Safety Agency outlines the issues facing adults with learning disabilities who have dysphagia and introduces support materials that can provide practical help for these people. The tools can be adapted for local use and for any adult who has dysphagia.
  10. 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
  11. 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
  12. Content Article
    This report details the findings of a thematic review of Safe and wellbeing reviews (SWRs) between October 2021 and May 2022. SWRs are undertaken for children, young people and adults that are autistic and/or have a learning disability who are being cared for in a mental health inpatient setting.  SWRs are part of the NHS response to the safeguarding adults review concerning the tragic deaths of Joanna, Jon, and Ben at Cawston Park Hospital, who were each detained for a long period of time and did not receive appropriate care.
  13. Content Article
    The STOMP and STAMP programme of work is about making sure children and young people with a learning disability, autism or both are only prescribed the right medication, at the right time and for the right reason. This leaflet produced by Royal College of Paediatrics and Child Health and NHS England provides information to parents about psychotropic medicines.
  14. Content Article
    In July the Health and Care Act 2022 introduced a requirement that regulated service providers ensure their staff receive training on learning disability and autism which is appropriate to the person’s role.  The Oliver McGowan Mandatory Training on Learning Disability and Autism is the standardised training that was developed for this purpose and is the government's preferred and recommended training for health and social care staff to undertake. It is named after Oliver McGowan, whose death shone a light on the need for health and social care staff to have better training. It is the only training with permission to include Paula McGowan OBE, telling Oliver's story and explaining why the training is taking place.  An elearning package is the first part of both Tier 1 and Tier 2 of the Oliver McGowan Mandatory Training and is now live. Everyone will need to do the elearning no matter where they work and what tier they need to complete. The next part is either a live one hour online interactive session for those needing Tier 1,or, a 1-day face to face training for people who require Tier 2. 
  15. Event
    To share the learning and resources from the award-winning (The Royal Society of Public Health - Arts in Health 2022) community partnership programme between Tameside and Glossop Integrated Care NHS FT, Made By Mortals CIC (arts organisation) and over 50 patients with a broad range of lived experience- including mental ill health, learning disability, autism, English not as their first language, and people that identify as non-binary. The project used immersive audio case studies coproduced by patients, including the use of music, sound effects, and drama, together with an interactive workshop that challenged volunteers and staff at the hospital to take a walk in the patient’s shoes. The experiential community-led training raised awareness of the challenges that people with protected characteristics and additional needs face. This work supported Tameside and Glossop Integrated Care NHS FT ongoing approach to quality and diversity and supported attendees to adapt their behaviours to create an empathetic and person-centred environment. Register
  16. 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. 
  17. 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.
  18. Content Article
    Think Local Act Personal (TLAP) is a national partnership of more than 50 organisations committed to transforming health and care through personalisation and community-based support. TLAP developed the Making It Real framework to support good personalised care for providers, commissioners and people who access services. These "I" statements are part of Making It Real, and they articulate what good care and support looks like if you are someone who accesses services.
  19. Content Article
    This report by the Care Quality Commission (CQC) looks what people with a learning disability and autistic people experience when they need physical health care and treatment in hospital. People with a learning disability face huge inequalities when accessing and receiving health care, and initiatives to try and improve people’s experiences have not brought about improvement at the speed or scale needed. The consequences of this are serious, as when people do not get care and support that meets their individual needs, it can lead to avoidable harm and premature death. Equity for people with a learning disability and autistic people is therefore a critical patient safety issue.
  20. Content Article
    This series of short guides aims to help providers and commissioners better understand the use of patient insight and to use it effectively in delivering local services. These topics are covered in the guides: Seeking feedback in distressing or highly emotional situations Writing an effective questionnaire Building greater insight through qualitative research Helping people with a learning disability to give feedback How and when to commission new insight and feedback Insight – what is already available? The National Patient Reported Outcome Measures (PROMS) programme
  21. News Article
    Patients are not always getting the care they deserve, says the head of NHS England. Amanda Pritchard told a conference the pressures on hospitals, maternity care and services caring for vulnerable people with learning disabilities were of concern. She even suggested the challenge facing the health service now was greater than it was at the height of the pandemic. Despite making savings, the NHS still needs extra money to cope, she said. Next year the budget will rise to more than £157bn, but NHS England believes it will still be short of £7bn. Ms Pritchard told the King's Fund annual conference in London that demand was rising more quickly than the NHS could cope with. "I thought that the pandemic would be the hardest thing any of us ever had to do," she said. "Over the last year, I've become really clear.... it's the months and years ahead that will bring the most complex challenges." Read full story Source: BBC News, 2 November 2022
  22. 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
  23. Content Article
    'State of Care' is the Care Quality Commission's annual assessment of health care and social care in England. The report looks at the trends, shares examples of good and outstanding care, and highlights where care needs to improve.
  24. Content Article
    People with a learning disability are more than twice as likely to die from avoidable causes than the rest of the population. Actor Tommy Jessop and BBC Panorama investigated some of the stories of families who say they were let down by their medical care.
  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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