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Found 248 results
  1. News Article
    Throughout the pandemic, people with learning disabilities and autism have consistently been let down. A lack of clear, easy-to-understand guidance, unequal access to care and illegal “do not resuscitate” instructions have exacerbated the inequalities many people have long faced. It is crucial we do not forget those who have constantly been at the back of the queue: people with learning disabilities and autism. The impact cannot be ignored: research shows that 76% of people with learning disabilities feel they do not matter to the government, compared with the general public, during the pandemic. And data shows the danger of contracting COVID-19 for people with learning disabilities and autism is much higher than for the wider population. Public Health England has said the registered COVID-19 death rate for people with learning disabilities in England is more than four times times higher than the general population. But experts estimate the true rate is likely to be even higher, since not all deaths of people with learning disabilities are registered in the databases used to collate the findings. The reasons the pandemic has impacted people with learning disabilities so disproportionately are systemic, and a result of inequalities in healthcare services experienced for generations. Yes, some individuals are more clinically vulnerable, on account of the co-morbidities and complications associated with their learning disability. For many people, however, poorer outcomes after contracting the virus are due to non-clinical issues and inequalities in accessing healthcare services. This is inexcusable. The government must prioritise vaccinations for the 1.5 million people with learning disabilities and 700,000 with autism. Putting this long-overlooked group at the top of the vaccine queue would help address the systemic health inequalities learning disabled people face. Read full story Source: The Guardian, 15 December 2020
  2. News Article
    People with learning disabilities have been "at the back of the queue" during the coronavirus pandemic, a panel of MPs has been told. Those living in supported accommodation were left waiting weeks for guidance on testing and visits. MPs were also told long-term social factors were likely to be more important than biology when it came to ethnic divides in the virus's impact. The panel focused on what lessons could be learned. Read full story Source: BBC News, 1 December 2020
  3. News Article
    The critical finding at the inquest into Laura Booth’s death raises alarming concerns about the failing system of investigation into the deaths of people with learning disabilities. Initially, Laura’s death was said to be expected and was attributed to natural causes on the basis of a death certificate signed by a hospital doctor. Without the determination of Laura’s family and the intervention of the media, this inquest would never have happened, and the truth about her death from malnutrition and neglect would not have been uncovered. The concerns about how many other avoidable deaths have not been scrutinised because there is no one to speak up on behalf of those who died or because families are obstructed in their search for answers by the prevailing assumption that people will die early. The premature deaths of people with learning disabilities (on average 30 years before their non-disabled peers) demand robust scrutiny particularly as when inquests do take place, they so often reveal basic failings in healthcare. The way in which the Booth family were so nearly failed by the coronial system is a sharp reminder of how urgently reform of these processes is needed. Read full story Source: The Guardian, 2 May 2021
  4. News Article
    The death of a young disabled woman following a routine eye operation was partly caused by malnutrition as a result of neglect, a coroner has ruled. Laura Booth, 21, was admitted to the Royal Hallamshire hospital in Sheffield in September 2016 for a routine eye operation. She died the next month, on 19 October. Booth had a number of learning difficulties and life-limiting complications, having been diagnosed with partial trisomy 13, a rare genetic disorder, shortly after she was born. Her mother, Patricia Booth, told the inquest that her daughter stopped eating shortly after she was admitted to hospital, and that doctors ignored Laura’s attempts to communicate with them. She said her daughter consumed only rice milk and blackcurrant juice in hospital, and she kept telling doctors: “This isn’t right, she can’t survive on no food.” The coroner, Abigail Combes, concluded that Laura Booth became unwell while a patient at the hospital and, among other illnesses, “developed malnutrition due to inadequate management for her nutritional needs”. Combes said that Booth’s death “was contributed to by neglect”. Read full story Source: The Guardian, 26 April 2021
  5. News Article
    The mother of a man who died after suffering neglect said she felt "extreme distress and anger" at a critical new report into his care home. James Delaney, 37, died while he was a resident at Sapphire House in Bradwell, Norfolk, in July 2018. After an inadequate rating by the Care Quality Commission (CQC), Mr Delaney's mother said she felt lessons had not been learned from her son's death. A spokeswoman for operator Crystal Care said it had "addressed all concerns". Mr Delaney, who died of a diabetes-related illness, was required to take insulin twice a day, but, despite staff noting he had not taken insulin for three days, they failed to take action. Jacqueline Lake, senior coroner for Norfolk, said at his inquest in 2019 there had been "a gross failure" by the care home to provide "basic medical attention". The home, which houses up to five people who have a learning disability or autistic spectrum disorder, was inspected in January and February 2021 after two whistleblowers alleged that abusive practices were taking place - a claim which is being investigated by the local safeguarding team. CQC inspectors found "people were not safe and were at risk of avoidable harm", and while risk assessments for diabetes, medicines and behaviour management existed, information was often "lacking or inaccurate". After reading the report, Mr Delaney's mother, Roberta Conway, said her reaction was one of "extreme distress and anger". She said the coroner had "pointed out what needed to be done, and it hasn't been done". "It cost my son his life and I don't want to see anybody else's life being wasted," she added. Read full story Source: BBC News, 21 April 2021
  6. News Article
    Seven individuals face prosecution for alleged ill-treatment and wilful neglect of patients at a hospital for people with severe learning disabilities. The alleged offences took place at the psychiatric intensive care unit at Muckamore Abbey Hospital in County Antrim, Northern Ireland. Prosecution follows ongoing police inquiries A police investigation into claims of abuse at the hospital has been ongoing since 2018, following reports of inappropriate behaviour and alleged physical abuse of service users by staff. Read full story Source: Nursing Standard, 19 April 2021
  7. News Article
    A child was twice given double the "safe" dose of a rapid tranquilizer at a hospital run by a troubled NHS trust. The child was put at "significant risk of harm" at Telford's Princess Royal Hospital, said inspectors. Rating children's services inadequate, they said Shrewsbury and Telford Hospital NHS Trust (SaTH) must halt seeing under 18s for acute mental health needs. The trust, in special measures, was working to "urgently address concerns". The Care Quality Commission (CQC) carried out a targeted inspection on 24 February prompted by "concerning information" about treatment at the service run by SaTH. The trust is currently at the centre of the largest ever inquiry into NHS maternity care. Staff told inspectors they had seen an increase in the number of young people with "significant mental health issues" and learning disabilities over the past year. But the services, which were rated as "requiring improvement" in November 2019, were deemed "inadequate" in four of five areas tested - for being safe, effective, responsive and well-led. Read full story Source: BBC News. 19 April 2021
  8. News Article
    A flagship government programme to improve care for people with learning disabilities has had an ‘unclear’ and ‘limited’ impact after six years, an NHS England report has found. A report into the national learning disability mortality review programme (LeDer) has criticised it for failing to impact improvement of services both nationally and locally. The national LeDer programme was launched in 2015 after high profile failures by Southern Health Foundation Trust to investigate the deaths of patients with learning disabilities. Since its launch, the programme has consistently struggled to carry out the number of reviews required, with the backlog growing to 3,800 last year. The news follows a year of increasing concern over the disproportionate death rate for those with learning disabilities during the pandemic. Read full story (paywalled) Source: HSJ, 24 March 2021
  9. News Article
    The unlawful or inappropriate use of “do not attempt cardiopulmonary resuscitation” (DNACPR) orders by some clinicians risks undermining the care of terminally ill patients, almost 40 leading doctors, nurses and charities have warned. During the coronavirus pandemic repeated examples of unlawful decisions have emerged including widespread blanket orders on care home residents and patients with learning disabilities. Now the charity Compassion in Dying along with Marie Curie, Hospice UK and Sue Ryder, as well as more than 30 GPs, nurses and doctors, are warning more must be done to listen to patients and their families. In a joint statement, signed by more than 30 clinicians, they warn: “There have been examples of poor practice in relation to DNACPR decision-making during the pandemic, and the distressing impact this has had on patients and families cannot be underestimated. It is essential to thoroughly understand and learn from these cases to ensure that they do not happen again." “We are aware that the benefits of DNACPR decisions can be easily undone if they are not accompanied by honest, open and sensitive communication with a person’s healthcare team. To ensure that everybody who encounters a DNACPR discussion has a positive experience, we need to do more to listen to individuals and their families; their wishes must be sought and documented, their questions answered and their feelings acknowledged. “A DNACPR decision must always involve the person, or those close to them, and should be part of a wider conversation about what matters to that individual.” Read full story Source: The Independent, 8 March 2021
  10. News Article
    Patients with learning disabilities were pushed and dragged across the floor while others had their arms trapped in doors by staff working at a private hospital, the care watchdog has found. The Care Quality Commission said instances of abuse caught on CCTV had now been reported to police and staff working at St John’s House, near Diss in Norfolk, have been suspended. Police have said no further action will be taken. The regulator has rated the home, part of The Priory Group, inadequate and put it into special measures after inspectors found a string of failures at the 49-bed home during an inspection in December. According to the CQC’s report, inspectors reviewed CCTV footage of seven patient safety incidents between August and December last year. This showed “issues such as prolonged use of prone restraint, a patient being dragged across the floor despite attempting to drop their weight, a patient being pushed over and the seclusion room door trapping a patients arm and making contact with a patient’s head when closed”. The report said that although some staff had been suspended the hospital had not reported all the incidents to the police or the local council. It added: “Following CQC raising this as a concern, the provider has now reported incidents to the police, the safeguarding team and has suspended further staff pending investigation.” Read full story Source: The Independent, 5 March 2021
  11. News Article
    Bereaved families have been left feeling like their efforts to improve patient safety have been ‘in vain’ as progress of a government programme instigated by Jeremy Hunt appears to have ‘stalled’. The Learning from Deaths programme board, which was set up in 2017 to develop guidance for trusts working with families on investigations of deaths, has not met since June 2019. Josephine Ocloo and David Smith, two bereaved family members who were on the board, have written to HSJ, saying the programme’s progress has “stalled”. They added many of the issues it was set up to consider have not yet been addressed, including the need for a national inquiry into unresolved historical cases, the independence of the NHS’ investigatory systems, lack of effectiveness of the duty of candour, and the disproportionate impact on ethnic minorities and those with mental ill-health or learning disabilities. They said: “We now have serious concerns that what these families went through [in November 2017] in recalling — and effectively reliving — their experiences, in order to ensure the terrible things that happened to them could not happen to others, was in vain… “If [the issues] are not to be addressed by the new board, the families will have every right to feel betrayed and to feel as if they have been used as pawns in a political game. Once again, harmed and let down by a system that has used us and then cast us aside.” Read full story (paywalled) Source: HSJ, 26 February 2021
  12. News Article
    All adults with a learning disability will be offered the vaccine against coronavirus after new advice from government experts warned they were at greater risk from the virus. The decision is a major win for disability charities and campaigners. The decision will mean as many as 150,000 more people could be offered the vaccine. The government’s Joint Committee on Vaccination and Immunisation (JCVI) has issued new advice saying any adult on GP Learning Disability Register should be prioritised for vaccination along with adults with related conditions such as cerebral palsy. The JCVI had previously said only those were severe learning disabilities and those living in care homes should be prioritised for vaccinations. Disability rights campaigners and charities warned this left vulnerable people at increased risk from the virus. Read full story Source: The Independent, 24 February 2021
  13. News Article
    Local groups of GPs have decided to prioritise all patients with learning disabilities for COVID-19 vaccination, after fresh evidence showed that disabled patients were at much higher risk from the disease. Latest figures from the Office for National Statistics1 showed that 60% of people in England who died from covid-19 from January to November 2020 (30 296 of 50 888) had a disability. This week an extra 1.7 million people in England—including some with severe learning disabilities—are being added to the list of people identified as clinically extremely vulnerable to COVID-19, although this does not include people with mild or moderate learning disabilities. But some clinical commissioning groups (CCGs) have deviated from national guidance and said that they will prioritise all patients with learning disabilities for vaccination given the disproportionate impact on them. In a statement published on its website, Kent and Medway CCG said that it had decided to include all adults with learning disabilities in the current priority phase for vaccination delivery. “Given the evidence of covid-19 inequalities increasing deaths amongst people with learning disabilities, the NHS in Kent and Medway has agreed to prioritise vaccinating the 9500 people on GP learning disability registers,” it said. Oxfordshire CCG was also praised by local campaigners for adjusting its priority list so that everybody with a learning disability is included in priority group 6, regardless of its severity. Read full story Source: BMJ, 19 February 2021
  14. News Article
    People with learning disabilities have been given do not resuscitate orders during the second wave of the pandemic, in spite of widespread condemnation of the practice last year and an urgent investigation by the care watchdog. Mencap said it had received reports in January from people with learning disabilities that they had been told they would not be resuscitated if they were taken ill with COVID-19. The Care Quality Commission (CQC) said in December that inappropriate Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) notices had caused potentially avoidable deaths last year. DNACPRs are usually made for people who are too frail to benefit from CPR, but Mencap said some seem to have been issued for people simply because they had a learning disability. The CQC is due to publish a report on the practice within weeks. The disclosure comes as campaigners put growing pressure on ministers to reconsider a decision not to give people with learning disabilities priority for vaccinations. There is growing evidence that even those with a mild disability are more likely to die if they contract the coronavirus. Read full story Source: The Guardian, 13 February 2021
  15. News Article
    Nearly 6 out of every 10 people who died with coronavirus in England last year were disabled, figures suggest. Some 30,296 of the 50,888 deaths between January and November were people with a disability, Office for National Statistics (ONS) data shows. It also suggests the risk of death is three times greater for more severely disabled people. Charities have called for urgent government action, describing the data as "horrifying and tragic". The ONS figures suggest disabled people were disproportionately affected by the pandemic - accounting for 17.2% of the study population but nearly 60% of coronavirus deaths. Among women, the risk of death involving coronavirus was 3.5 times greater for more-disabled women - defined as having their day-to-day activities "limited a lot" by their health - compared with non-disabled women. For less-disabled women, defined as having their day-to-day activities "limited a little", the risk was two times greater. Compared to non-disabled men, the data showed that the risk was 3.1 times greater for more-disabled men, and 1.9 times greater for less-disabled men. Looking at people with a medically diagnosed learning disability, the risk of death involving Covid was 3.7 times greater for both men and women compared with people who did not have a learning disability. Read full story Source: BBC News, 11 February 2021
  16. News Article
    People with a learning disability must be urgently prioritised for the coronavirus vaccine, charities have warned as new data shows they are almost twice as likely to die from the virus than the general population. The latest data for learning disability deaths shows 80% of deaths in the week to 22 January were linked to COVID-19. This compares to just 45% in the general population. The charity Mencap said everyone with a learning disability should be prioritised for the vaccine. According to its analysis of deaths reported to the Office for National Statistics and the national Learning Disabilities Mortality Review programme, the proportion of deaths among the learning disabled has been increasing every week since November when it was just above 35%. Harry Roche, an ambassador at Mencap who has a learning disability, said: “The death rate for 18- to 34-year-olds with a learning disability is 30 times higher than the rest of the population. I’m 32 years old and have a learning disability – this statistic scares me. I’m calling on Boris Johnson and Matt Hancock to rethink and prioritise everyone with a learning disability. We are too often forgotten, don’t ignore us now.” Read full story Source: The Independent, 3 February 2021
  17. News Article
    With the first phase of the UK’s vaccination programme now fully under way, the government’s self-congratulatory tone suggests all clinically vulnerable groups are soon in line for protection. There’s certainly reason to be positive: millions of people are on their way to safety. But look a little closer and many high-risk people are struggling to access the vaccine. When the vaccine was first introduced last year, the Joint Committee on Vaccination and Immunisation (JCVI) put shielders – or the “clinically extremely vulnerable” (CEV) – as low as sixth on the priority list, behind older people with no underlying health conditions. It resulted in the baffling situation where a marathon-running 65-year-old was given priority for the vaccine over a 20-year-old with lung disease who needs oxygen support. The government U-turned after pressure, moving CEV people up to fourth spot behind healthy over-75s. These are complex calculations, but there are still fears some will miss out. Some young disabled people who don’t meet the government’s narrow criteria of CEV and are worried they won’t be prioritised at all. Shielders – many of whom are of working age and live with children – also have extra risk factors compared with older people. As the British Medical Association said this month, we need a more sophisticated vaccine delivery that takes into account circumstantial factors such as race, health inequality and employment. I’ve received many messages from shielders who are terrified of being forced out to work, or of schools reopening before they get their vaccine. There are also those with learning disabilities to consider. Currently, only older people with a learning disability, those who have Down’s syndrome or people who are judged as having a severe learning disability are on the priority list. This means that people with a mild or moderate learning disability aren’t prioritised at all. This is despite the fact all people with learning disabilities have a death rate six times higher than the general population. Young adults with a learning disability are 30 times more likely to die of Covid than young adults in the general population. Read full story Source: The Guardian, 3 February 2021
  18. 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
  19. News Article
    The deaths of three adults with learning disabilities at a failed hospital should prompt a review to prevent further "lethal outcomes" at similar facilities, a report said. The report looked at the deaths of Joanna Bailey, 36, and Nicholas Briant, 33, and Ben King, 32, between April 2018 and July 2020. It found here were significant failures in the care of the patients at Jeesal Cawston Park, Norfolk. Ms Bailey, who had a learning disability, autism, epilepsy and sleep apnoea, was found unresponsive in her bed and staff did not attempt resuscitation, while the mother of Mr King said he was "gasping and couldn't talk" when she last saw him. Mr Briant's inquest heard he died following cardiac arrest and obstruction of his airway after swallowing a piece of plastic cup. The report found: "Excessive" use of restraint and seclusion by unqualified staff. Concerns over "unsafe grouping" of patients. Overmedication of patients. High levels of inactivity and days of "abject boredom". Relatives described "indifferent and harmful hospital practices" and said their questions and "distress" were ignored Joan Maughan, who commissioned the report as chairwoman of the Norfolk Safeguarding Adults Board, said: "This is not the first tragedy of its kind and, unless things change dramatically, it will not be the last." Read full story Source: BBC News, 9 September 2021
  20. News Article
    A trial, which took place at the start of 2020 but had to be cut short due to the coronavirus pandemic, has found having learning disability nurses involved in the delivery of annual health checks at GP practices can help improve uptake. Despite the trial being cut short, it was still considered a success with a second trial being launched. “This project highlighted that the specialist expertise, knowledge and skills of the learning disability nurses working with the GPs, can help improve the assessment process of the annual health checks and overall positive health outcomes for people with a learning disability.” said Lisa Harrington, specialist community matron in learning disabilities, a nurse on the project. Read full story. Source: Nursing Times, 3 August 2021
  21. News Article
    An urgent call for action has been issued in order to help prevent learning disability deaths. Life expectancy among people with learning disabilities is at least 25 years less than the rest of the population. A report comparing data found that while life expectancy had increased, inequality was still an issue. Data findings have showed there was a higher incidence of death among those with learning disabilities during the pandemic, with April 2020 showing 59% of all deaths were due to the virus. Moreover, the pandemic has seen further access to healthcare inequalities, in one such instance the father of a man with Down's Syndrome was told by a doctor that should his son require the use of a ventilator, access would be denied. Read full story. Source: BBC News, 12th June 2021
  22. News Article
    A hospital trust has decided to prioritise people with learning disabilities for elective treatment, after analysis showed they were disproportionately affected by lengthy waits for care, along with some people who have a minority ethnic background. The decision forms part of wider analysis at Calderdale and Huddersfield Foundation Trust of how the impact of covid, and work to recover from it, can exacerbate health inequalities and how this can be addressed. The FT said in a board paper it would “initially prioritise [people with a learning disability] for treatment after cancer and urgent patients”. Papers said it wanted to prioritise patients “around health inequalities and need based” rather than chronologically, as part of its covid elective recovery work. It made the decision about people with a learning disability as they have a shorter average life expectancy “and therefore the impact of waiting for treatment can both further reduce this as well as disproportionately impact on their quality of life whilst waiting,” according to trust board papers. Read full story (paywalled) Source: HSJ, 4 June 2021
  23. News Article
    A group set-up following the Winterbourne View scandal is urging more people with learning disabilities to attend their annual health check-up. Healthwatch South Gloucestershire said regular health checks could prevent people from dying unnecessarily. It formed after BBC Panorama exposed abuse of patients at Winterbourne View hospital 10 years ago. Only about 36% of people with learning difficulties are believed to have an annual GP health check-up. The Local Democracy Reporting Service (LDRS). said the lack of regular, medical observations contributed to them having a life expectancy of 20 years lower than in the wider population. Healthwatch South Gloucestershire, a regional, independent health and social care champion, has created a checklist to encourage more people to attend appointments to help them improve their life expectancy. Vicky Marriott from the group said: "It is our unrelenting mission to listen and share people's lived experience so that the information informs how health and social care services improve. "We recently listened to people with learning disabilities and their families and developed with them an accessible info-sheet packed full of easy-to-read explanations about the lifesaving benefits of annual health checks." Read full story Source: BBC News, 1 June 2021
  24. Event
    In this conversation, James Munro, CEO of Care Opinion, will speak with Dr Lauren Paige Ramsey of the University of Leeds. They will be talking about the safety of people with learning disabilities in care settings, and what we can learn about that from feedback shared on Care Opinion. Here is the research we will be discussing: Systemic safety inequities for people with learning disabilities: a qualitative integrative analysis of the experiences of English health and social care for people with learning disabilities, their families and carers Do join us for this conversation: everyone is welcome. You don't need any academic or research experience. You don't even have to read the paper! Each conversation will last about 15 minutes, followed by time for questions. Once you register for this event you will be able to post comments and questions, in advance or during the conversation. You can also share the event, or post questions, on Twitter using the hashtag #corc The conversation will be recorded and available here immediately after the event, or later via the Care Opinion blog.
  25. Event
    until
    In this webinar from Learning Disability Today, Alexis Quinn, autistic woman and author; Dr Jeremy Tudway, Clinical Director for Dimensions, and Max Green, Ambassador for the National Autistic Society, talk about how communication is key to providing good care to people with a learning disability and/or autism. It looks at how professionals communicate with the people they are supporting, what they do and don’t say, and how they say it. This webinar is for: GPs Psychiatrists Practice managers Professionals working with people with a learning disability and/or autism People with a learning disability and/or autism The panellists will discuss how communication is essential to improve the care and quality of life of people with a learning disability and/or autism. In the first part of this talk, Alexis Quinn talks about her experience in an Assessment and Treatment Unit (ATU) where she was over-medicated and subjected to restraint and seclusion. She will also discuss how support in the community could have prevented her hospital stay. In the second part of the talk, Dr Jeremy Tudway, Clinical Director for Dimensions, and Max Green, Ambassador for the National Autistic Society, will talk about how communication is key, looking at how professionals communicate with the people they are supporting, what they do and don’t say, and how they say it. Register
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