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Elizabeth Dixon was a child with special health needs. She had been born prematurely at Frimley Park Hospital on 14 December 2000. Following treatment and care at Great Ormond Street Hospital and a children’s hospice she was nursed at home under a care package. As a result of a failure to clear a tracheostomy tube she asphyxiated and was pronounced dead at Frimley Park hospital on 4 December 2001. The investigation chaired by Dr Bill Kirkup looked at the events surrounding the care of Elizabeth and makes a series of recommendations in respect of the failures in the care she received from the NHS. The report which set out the findings and recommendations of this investigation, The life and death of Elizabeth Dixon: a catalyst for change, was published on the 26 November 2020. This policy paper details the UK Government’s response each of the report’s recommendations. It also highlights a number of areas where action is being taken by government departments, arm’s length bodies and other organisations in response to the investigations recommendations.- Posted
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Elizabeth Dixon death inquiry 'exposes 20-year cover-up' of mistakes
Patient Safety Learning posted a news article in News
The death of a premature baby in 2001 led to a "20-year cover-up" of mistakes by health workers, an independent inquiry has found. Elizabeth Dixon, from Hampshire, died due to a blocked breathing tube shortly before her first birthday. The government, which ordered the inquiry in 2017, said the mistakes in her care were "shocking and harrowing". The inquiry report by Dr Bill Kirkup said some of those involved had been "persistently dishonest". Elizabeth, known as Lizzie, died from asphyxiation after suffering a blockage in her tracheostomy tube while under the care of a private nursing agency at home. Dr Bill Kirkup, who was appointed by the government to review the case, said her "profound disability and death could have been avoided". He said: "There were failures of care by every organisation that looked after her, none of which was admitted at the time, nor properly investigated then or later." "Instead, a cover-up began on the day that she died, propped up by denial and deception." Read full story Source: BBC News, 26 November 2020 Patient Safety Learning's statement on the Dixon Inquiry report- Posted
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Government acts after claims covid deaths of disabled people are being 'ignored'
Patient Safety Learning posted a news article in News
Deaths of those with learning disabilities and autism fromCOVID-19 are to be analysed by Public Health England (PHE), HSJ can reveal. Several senior sources have confirmed PHE has put together a group, which includes independent experts, to analyse mortality data. They had previously not been included in the government’s inquiry into the over-representation of some groups among covid fatalities. The news comes amid mounting concerns from major charities over the of lack transparency in data collected centrally on the deaths of people from these these groups during the pandemic. In a letter yesterday , seen by HSJ, Labour’s shadow secretary for social care Liz Kendall, urged Department of Health and Social Care minister Helen Whately to publish data on deaths reported to the Learning Disabilities Mortality Review Programme (LeDer). Earlier this week NHS England and NHS Improvement told HSJ the weekly data it is receiving from the national learning disability morality review programme (LeDer) on suspected and confirmed deaths of those with learning disabilities and autism from COVID-19 would not be published until next year. In her letter Ms Liz Kendall said the Government should “immediately” release the deaths notifications being provided by LeDer along with a “retrospective” analysis from the beginning of the pandemic. Read full story Source: HSJ, 7 May 2020 -
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Coronavirus: Special needs parents in 'survival mode'
Patient Safety Learning posted a news article in News
A father has described the "huge impact" of losing respite care for his young daughter who has complex special needs. Tim Clarke and his wife Ana look after their six-year-old daughter Molly at home in Worcester. The family normally receives a few hours of outside care and educational help a week, but that ended with the coronavirus pandemic. Molly has been diagnosed with autism and also has medical issues including a cyst on her brain. One charity worker from the Pathological Demand Avoidance (PDA) Society, a condition which is on the autism spectrum, described parents of children with special needs as being in "survival mode". Watch video Source: BBC News, 1 April 2020 -
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Coronavirus: 'Frailty score' plan angers special needs parents
Patient Safety Learning posted a news article in News
New guidelines for assessing people with coronavirus who go to hospital were amended after an outcry from parents of children with special needs. The emergency guidelines published by the National Institute for Health and Care Excellence (NICE) are designed to help determine how much treatment a patient will receive. Those deemed "completely dependent for personal care for whatever reason" will be offered end-of-life care rather than restorative treatment. This now excludes people with learning difficulties or cerebral palsy. In a statement NICE said the system was "not perfect" but was designed to support hospital medics "during this very difficult period of intense pressure". "We welcome the recent clarification that the Clinical Frailty Score should not be used in certain groups," it said. The updated guidelines now state that it "may not perform as well in people with stable long-term disability" and suggests that it is not used in those cases. Read full story Source: BBC News, 26 March 2020 -
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Death review backlog still growing despite NHSE commitment
Patient Safety Learning posted a news article in News
A backlog of thousands of deaths of people with learning disabilities awaiting official review has grown further, despite NHS England committing in spring last year to “address” the buildup. Information obtained by HSJ shows the number of incomplete reviews increased slightly between May and November last year – from 3,699 to 3,802. The “national learning disabilities mortality review” programme – known as LeDeR – was launched in 2016 and is meant to review all deaths of people aged four and over. Mencap head of policy and public affairs, Dan Scorer, said: “It is unacceptable that thousands of deaths have still not been reviewed despite NHS England announcing further funding to make sure all reviews were carried out quickly and thoroughly. These latest figures show that little progress has been made; the programme is still failing to address outstanding reviews as well as keep pace with incoming referrals." “Behind these figures are families whose loved ones’ deaths may have been potentially avoidable and they have a right to know that health and care services are learning and acting on LeDeR reviews’ recommendations.” Read full story (paywalled) Source: HSJ, 8 January 2020- Posted
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Muckamore Abbey Hospital: Inquiry into alleged patient abuse begins
Patient Safety Learning posted a news article in News
A public inquiry into allegations of abuse of patients at Muckamore Abbey Hospital is under way. The hospital is run by the Belfast Health Trust and provides facilities for adults with special needs. With the terms of reference agreed, the inquiry panel will begin trying to establish what happened between residents and some members of staff, and also examine management's role. Seven people are facing prosecution. There have been more than 20 arrests. It was announced in June 2021 that the inquiry will be chaired by Tom Kark QC, who played a key role in the 2010 inquiry into avoidable deaths at Stafford Hospital in England. Speaking on Monday, Mr Kark said it was a "significant date for all those patients and families who have been affected by the issues under examination by the inquiry, many of whom have campaigned very hard to ensure this inquiry takes place". "I want to reassure you that a thorough and impartial investigation will be carried out by the Muckamore Abbey Hospital Inquiry," he added. Read full story Source: BBC News, 12 October 2021- Posted
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Elizabeth Dixon was a child with special health needs. She had been born prematurely at Frimley Park Hospital on 14 December 2000. Following treatment and care at Great Ormond Street Hospital and a children’s hospice she was nursed at home under a care package. As a result of a failure to clear a tracheostomy tube she asphyxiated and was pronounced dead at Frimley Park hospital on 4 December 2001. The investigation chaired by Dr Bill Kirkup looked at the events surrounding the care of Elizabeth and makes a series of recommendations in respect of the failures in the care she received from the NHS. Recommendations Hypertension (high blood pressure) in infants is a problem that is under-recognised and inconsistently managed, leading to significant complications. Its profile should be raised with clinicians; there should be a single standard set of charts showing the acceptable range at different ages and gestations; and a single protocol to reduce blood pressure safely. Blood pressure should be incorporated into a single early warning score to alert clinicians to deterioration in children in hospital. Community care for patients with complex conditions or conditions requiring complex care must be properly planned, taking into account and specifying safety, effectiveness and patient experience. The presence of mental or physical disability must not be used to justify or excuse different standards of care. Commissioning of NHS services from private providers should not take for granted the existence of the same systems of clinical governance as are mandated for NHS providers. These must be specified explicitly. Communication between clinicians, particularly when care is handed over from one team or unit to another, must be clear, include all relevant facts and use unambiguous terms. Terms such as palliative care and terminal care may be misleading and should be avoided or clarified. Training in clinical error, reactions to error and responding with honesty, investigation and learning should become part of the core curriculum for clinicians. Although it is true that curricula are already crowded with essential technical and scientific knowledge, it cannot be the case that no room can be found for training in the third leading cause of death in western health systems. Clinical error, openly disclosed, investigated and learned from, must not be subject to blame. Conversely, there should be zero tolerance of cover up, deception and fabrication in any health care setting, not least in the aftermath of error. There should be a clear mechanism to hold individuals to account for giving false information or concealing information relating to public services, and for failing to assist investigations. The Public Authority (Accountability) Bill drawn up in the aftermath of the Hillsborough Independent Panel and Inquests sets out a commendable framework to put this in legislation. It should be re-examined. The existing haphazard system of generating clinical expert witnesses is not fit for purpose. It should be reviewed, taking onto account the clear need for transparent, formalised systems and clinical governance. Professional regulatory and criminal justice systems should contain an inbuilt ‘stop’ mechanism to be activated when an investigation reveals evidence of systematic or organisational failures and which will trigger an appropriate investigation into those wider systemic failures. Scrutiny of deaths should be robust enough to pick up instances of untoward death being passed off as expected. Despite changes to systems for child and adult deaths, concern remains that without independent review such cases may continue to occur. The introduction of medical examiners should be reviewed with a view to making them properly independent. Local health service complaints systems are currently subject to change as part of wider reform of public sector complaints. Implementation of a better system of responding to complaints must be done in such a way as to ensure the integration of complaints into NHS clinical governance as a valuable source of information on safety, effectiveness and patient experience. The approaches available to patients and families who have not been treated with openness and transparency are multiple and complex, and it is easy to embark inadvertently on a path that is ill-suited to deliver the answers that are being sought. There should be clear signposting to help families and the many organisations concerned. Ministerial Statement Patient Safety Learning's statement on the Dixon Inquiry report- Posted
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Coronavirus: My disabled son is on his own without any help
Anonymous posted an article in Blogs
Ten days ago, *Mark developed a mild headache, minor fever and sore throat. He is in Denver and we are in Mexico. We Face timed him every day and his aid, *Sandy, was coming to see him every other day. But then Sandy's husband became ill and as she has been exposed to whatever her husband has, she has to now self-isolate at home with her husband. Mark has had no helper now for 7 days. Mark has access to the US government assistant programme, but unfortunately there are no other aids available right now. So we are trying to get him home as soon as possible, but we can’t until he is symptom free. I am getting ready to jump on a plane. Being isolated and without an aid has caused him periods of considerable paranoia and anxiety. Disabled people at home who rely on home healthcare are now at risk of no help. Fortunately Mark is very good at ordering out food for delivery and is able to walk with his walker to the pharmacy for his medication, but I worry about all the other disabled people who may inadvertently get abandoned in this pandemic due to low workforce. *Names have been changed in this blog to ensure confidentiality.- Posted
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