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Content Article
University of Bristol LeDeR annual report 2020
Patient-Safety-Learning posted an article in Learning disabilities
This annual report from the University of Bristol provides information about the deaths of people with a learning disability aged four years and over notified to the programme. -
Content Article
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Sinead Heneghan is a GP based in the North West of England with a passion for reducing health inequalities. In this interview for Patient Safety Learning, Sinead tells us how she made sure COVID-19 vaccinations were prioritised for people with learning disabilities, when national guidance advised otherwise. She also explains how they took the opportunity locally to combine these face-to-face immunisation appointments with annual health checks, identifying unmet health needs that needed addressing. -
News Article
Calls for urgent action to prevent learning disability deaths
Patient-Safety-Learning posted a news article in News
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 -
News Article
Trust to move people with learning disabilities up waiting lists
Patient Safety Learning posted a news article in News
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 -
News Article
Annual checks can lengthen life
Patient Safety Learning posted a news article in News
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 -
Content ArticleAuthors of this study, published in BMJ Open, conclude that people with learning disabilities appear to experience poorer patient safety outcomes in hospital. The involvement of family and carers, and understanding and effectively meeting the needs of people with learning disabilities may play a protective role. Promising interventions and examples of good practice exist, however many of these have not been implemented consistently and warrant further robust evaluation.
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News Article
Deaths of people with learning disabilities deserve proper scrutiny
Patient Safety Learning posted a news article in News
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 -
News Article
Inquest finds neglect contributed to woman’s hospital death
Patient Safety Learning posted a news article in News
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 -
News Article
'Anger' over report into neglect death care home
Patient Safety Learning posted a news article in News
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 -
News Article
'Urgent action' over children's mental health care
Patient Safety Learning posted a news article in News
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 -
News ArticleSeven 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
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Content ArticleThe COVID-19 pandemic has exposed huge problems with the way Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) decisions are made, understood and communicated with people with learning disabilities and their families and carers. There have been reports of unlawful blanket decision-making and of DNACPR orders noted without discussion with the people involved. In this webinar, the Palliative Care for People with Learning Disabilities (PCPLD) Network focus on some of the questions that have been raised over the past year. What exactly is DNACPR? Why are the terms DNR or DNAR unhelpful, confusing and potentially dangerous? In what circumstances is CPR not a good option, and DNACPR therefore appropriate? How should those decisions be made? Who should be involved? What if the person lacks capacity for a DNACPR decision – how can we make decisions based on best interest?
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Content Article
The theme for this year’s World Health Day (7 April) is building a fairer and healthier world for everyone. Making sure all patients can access and understand healthcare information is absolutely key to this. In this interview, anaesthetist Rachael Grimaldi tells us about CardMedic, the organisation she founded to empower staff and patients to communicate across any barrier. Rachael explains how their tools can be used to support vulnerable groups and reduce inequalities. -
Content ArticleThis policy aims to set out for the first time for the NHS the core aims and values of the LeDeR programme and the expectations placed on different parts of the health and social care system in delivering the programme from June 2021.
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EventuntilThe COVID-19 pandemic has exposed huge problems with the way Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) decisions are made, understood and communicated with people with learning disabilities and their families and carers. There have been reports of unlawful blanket decision-making and of DNACPR orders noted without discussion with the people involved. This webinar will focus on some of the questions that have been raised over the past year. What exactly is DNACPR? Why are the terms DNR or DNAR unhelpful, confusing and potentially dangerous? In what circumstances is CPR not a good option, and DNACPR therefore appropriate? How should those decisions be made? Who should be involved? What if the person lacks capacity for a DNACPR decision – how can we make decisions based on best interest? Register
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Content ArticleThis webinar, organised by the Palliative Care for People with Learning Disabilities (PCPLD) Network, looks at lessons learnt from avoidable deaths of people with learning disabilities or autism. Drawing on the harrowing stories, of Oliver McGowan and Richard Handley, they discuss what can be done to prevent future deaths.
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News Article
Flagship death review programme had ‘unclear and limited’ impact
Patient Safety Learning posted a news article in News
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 -
Content ArticleIn my tweets and posts I have suggested that patients themselves need to take more responsibility for the medicines they are prescribed. But what about vulnerable groups who may depend on decisions being made for them, and in their best interests? Whilst there are circumstances where antipsychotic (psychotropic) medicines are an appropriate option for people with autism and learning disabilities, these occasions are limited. In all cases the patient matters most, and any decision to prescribe must be part of a team based, patient-led decision, which is regularly reviewed.
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Content ArticleHealth Education England and Skills for Care are working in partnership on the Oliver McGowan Mandatory Training trials in Learning Disability and Autism. This video tells Oliver’s Story and why the training is taking place.
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News ArticleThe 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
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EventuntilPeople with learning disabilities are at risk of dying too young, and dying unnecessarily. The Learning Disability Mortality Review (LeDeR) in England has found that too often, those deaths are a result of failings within health and social care provision. Reflecting on this has never been more important – during the pandemic, the inequalities that many people with learning disabilities face have been put into stark focus. Today we focus on the stories of Oliver’s and Richard's deaths, and on what lessons we can all learn from this. Oliver McGowan died in 2016. He was 18 years old. Oliver had mild learning disabilities and autism. A recent independent LeDeR review concluded Oliver’s death was avoidable. Richard Handley died in 2012 at the age of 33, from complications arising from constipation. He had Down syndrome and mental health problems. The inquest into his death concluded that their had been “gross failures” in his care and treatment. Paula McGowan and Sheila Handley share the stories of their sons’ lives, and of the healthcare failings that contributed to their deaths. Oliver’s and Richard’s stories are profoundly important and profoundly moving. Register
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News ArticlePatients 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
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Content ArticleA free book about the experiences of people with learning disabilities and/or autism during the pandemic – ‘Peter and Friends talk about Covid-19 and having a learning disability and/or autism‘. From an idea from Peter Cronin, London South Bank University, Oxleas NHS Trust and the Foundation for People with Learning Disabilities drew together stories about the experiences of people with learning disabilities and/or autism during the pandemic in the UK and across the world.
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Content ArticleMany families and autistic individuals have raised concerns over early deaths in autistic people. Research now confirms the true scale of the mortality crisis in autism: autistic people die on average 16 years earlier than the general population. For those with autism and learning disabilities, the outlook is even more appalling, with this group dying more than 30 years before their time. Yet there is still very limited awareness and understanding of the scale of premature mortality for the 700,000 autistic people in the UK and hence very little action to date to reduce it. This hidden crisis demands a national response.
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News Article
Jeremy Hunt’s safety programme has stalled, say bereaved families
Patient Safety Learning posted a news article in News
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
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