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Showing results for tags 'Disability'.
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Content ArticleThis article tells the story of Ruth, whose baby son was left with severe cerebral palsy and several other injuries following oxygen starvation during his birth. Ruth's labour was badly mismanaged and she found gaps, omissions and additions to her medical notes when she requested copies. Following a lengthy legal case, Kate received compensation that allowed her family to pay for her son's medical and care needs and adapt their home.
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Content ArticleThese reports by the Pharmaceutical Society of Australia look at different aspects of medication safety. Medicine safety: Take care This report details the extent of harms in Australia as a result of medicine use. It highlights that 250,000 Australians are hospitalised each year, with another 400,000 presenting to emergency departments, as a result of medication errors, inappropriate use, misadventure and interactions. At least half of these incidents could have been prevented. Medicine safety: Aged care This report provides data about the real and current medication safety problems affecting older care residents across Australia. Medicine safety: Rural and remote care This report highlights the extreme challenges patients in rural and remote Australia have in accessing health care and the impact that this has on the safe and appropriate use of medicines. Medicine safety: Disability care This report focuses on the challenges that people with disability face in using medicines safely and effectively. The report found that people with disability face challenges at all stages of medicine use–prescribing, dispensing, administration and adherence and monitoring. Medicine safety forum: Informing Australia’s 10th National Health priority area This report presents a summary of views and experiences shared at a stakeholder workshop in December 2019.
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Content ArticleThis is the report of an employment tribunal concerning claimant Terence Burke, who was employed as a caretaker for the charity Turning Point Scotland. The tribunal ruled that Mr Burke was a disabled person within the meaning of s6 of the Equality Act 2010, and therefore unfairly dismissed by Turning Point Scotland in August 2021. The tribunal found that Mr Burke was disabled as he was suffering from Long Covid. This is the first case of Long Covid being classed as a disability in an employment tribunal and the ruling is likely to have implications on future cases concerning employees with Long Covid.
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Content Article
NHS England: Stroke toolkit
Patient Safety Learning posted an article in Other conditions and diseases
Stroke is a serious life-threatening medical condition that occurs when the blood supply to part of the brain is cut off. It is the fourth largest cause of death and the leading cause of disability, with almost two thirds of stroke survivors leaving hospital with a disability in the UK. -
Content ArticleThrombectomy is a game-changing treatment for stroke. It changes the course of recovery from stroke in an instant, significantly reducing the chance of disabilities like paralysis, visual impairment and communication difficulties. It is also extremely cost-effective. Rolling out thrombectomy fully could save the UK £73 million a year, by reducing demand for rehabilitation and community support services. But thrombectomy isn’t currently available for everyone who needs it (~10% of all stroke patients). The treatment is subject to a postcode lottery and in 2020/21, nearly 80% (5,889) of patients in England who needed a thrombectomy missed out. This report from the Stroke Assoication features some of the amazing people working tirelessly to improve outcomes for stroke patients, under challenging circumstances and often at a personal cost. And most importantly, it shows how truly life-changing thrombectomy can be for patients. The Stroke Association hopes this report will galvanise action at government and ICS levels that will benefit both stroke patients and professionals. They must urgently secure access to a 24/7 thrombectomy service, for every stroke patient who needs.
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Content ArticleDisabled people's voices need to be valued and prioritised in the planning and delivery of health and care services. This long read sets out the findings of research carried out by The King's Fund and Disability Rights UK into how disabled people are currently involved in health and care system design, and what good might look like.
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News Article
'More help needed' to make patient info accessible
Patient Safety Learning posted a news article in News
People with disabilities must be helped more by health providers to access information, a report has found. Over 300 people in North Yorkshire were asked about communication from GPs, hospitals, and healthcare providers in a survey by watchdog Healthwatch. The report said there is "some good practice" but many patients are not being contacted in their preferred format. This leads to missed appointments which "costs time and money". Since 2016, the Accessible Information Standard means health and care organisations must legally provide a "consistent approach to identifying, recording, flagging, sharing, and meeting the information and communication support needs of patients, service users, carers and parents with a disability, impairment, or sensory loss," Healthwatch said. But the report said some people receive printed letters which they are unable to read meaning they have to ask for private and confidential information to be relayed. Scarborough respondent Ian said it was "amazing" that in the 21st Century many are still facing such issues. "The [GP booking] system doesn't anticipate that not everyone can use the phone," he said. "The problem is a lot of organisations haven't moved with the times". Read full storyp Source: BBC News, 21 June 2022 -
News Article
Man paralysed from neck down ‘not eligible’ for night-time care
Patient Safety Learning posted a news article in News
A quadriplegic man was told his care funding would be revoked, after NHS officials deemed him not disabled enough to qualify for support. Simon Shaw, 54, has received 24-hour care since he was left paralysed from the neck down after a car accident in 1984. He relies on carers at night to help him with everything from turning in bed to having a drink of water. They also intervene with medical aid if he develops life-threatening complications related to his paralysis, which could happen at any time, without warning. But a recent NHS assessment controversially ruled Shaw’s health needs were not severe enough to warrant full-time medical care. Local health authority officials told him he did not meet eligibility criteria and his NHS funding would be stopped from 20 June. Shaw, from Clapham, south London, said that meant there was no money for his night-time care and he would be left unsupported from 8pm to 8am for the first time in nearly four decades. “It’s frightening, to be honest,” Shaw said. “I don’t know what I’m going to do when they take my care away. “I don’t cease to exist after 8pm. I still need to get into bed, have a drink of water and use the toilet – and I can’t do any of it on my own. “There are a lot of things that can go wrong with my health and when they do, they usually need urgent attention. If there’s no one there, to be frank… it could mean death.” Mandy Jamieson, a caseworker for the Spinal Injuries Association, said: “We have noticed an increase in patients with severe disabilities being turned down for funding in recent years, particularly since the introduction of assessments via video call since the pandemic. “But I feel particularly in Simon’s case the decision that has been made is wrong. He has so many health needs that I find it incredible that they turned him down.” Read full story Source: The Guardian, 19 June 2022 -
Content ArticleThe NHS Confederation has published a new report, 'The unequal impact of COVID-19: investigating the effect on people with certain protected characteristics', which maps existing research into COVID-19 inequalities onto some of these protected characteristics, showing how the pandemic has interacted with them. The report then showcases four case studies of how different health and care systems have put in place interventions to respond to these inequalities when designing their COVID-19 response. It focuses on a number of key areas including the impact of COVID-19 on: BAME communities people with disabilities older and younger people. The report concludes with a series of recommendations for health and care systems across the UK.
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News Article
'Urgent' changes needed for child disability care
Patient Safety Learning posted a news article in News
The mothers of two teenage boys who died after failures in their care have called on the government to make "urgent improvements" to how children with disabilities are assessed. Sammy Alban-Stanley, 13, and 14-year-old Oskar Nash both died in 2020. Inquests for both boys recorded they had received inadequate care from local authorities and mental health services. The calls were made in an open letter to the secretaries of state for health and social care, and education. Patricia Alban and Natalia Nash asked Sajid Javid and Nadim Zahawi to make fundamental changes to several care areas to prevent future deaths. The pair said they both experienced problems with support for disabled children and families. Services lacked understanding of neurological conditions like autism, they said. The pair also pointed to a lack of access to children and adolescent mental health services (CAMHS), and failure to assess or review the severity of a child's developing needs. Read full story Source: BBC News, 16 June 2022 -
News Article
UK doctors with long Covid say they have been denied disability benefits
Patient Safety Learning posted a news article in News
Doctors who worked on the frontline during the pandemic and have been left with long Covid say they have been denied financial support by the UK government, with some left with little option but to sell their house. Months or even years after an initial Covid infection some people continue to have symptoms, from fatigue to brain fog. According to the Office for National Statistics, as of 1 May an estimated 2 million people in the UK reported having long Covid, as the condition is known. Now healthcare staff in the UK have told the Guardian that despite being left with serious impairments as a result of long Covid, they have been turned down for personal independence payment (Pip), a non means-tested benefit helping people with the extra living costs of their chronic illness or disability. One respiratory consultant revealed they had been refused Pip despite reporting to the Department for Work and Pensions (DWP) that they had urinary incontinence, were unable to be on their feet for more than five to 10 minutes without a rest, and had difficulties preparing food, eating, washing, dressing or engaging with people face to face, among other problems. Speaking anonymously, as their application is under mandatory reconsideration, the consultant said they contracted Covid while working on a coronavirus ward in November 2020 and first applied for Pip in June 2021 after developing long Covid, which has left them unable to work. “I thought that I had illustrated quite clearly what my disability was,” they said. “When I got the report back, I thought ‘is this about me?’” Read full story Source: The Guardian, 13 June 2022 -
News ArticleRecord numbers of chronically ill patients living with disabilities are being denied funding for their care, The Mail on Sunday has reveal. An analysis of official figures shows only a fifth of those with disabling conditions such as Parkinson's disease, dementia and spinal injury asking for Government-funded help are being granted it this year. This is the lowest figure on record, with the exception of the pandemic years when assessments stopped altogether. Every year about 160,000 people apply for NHS funding called 'continuing healthcare', money available to those with significant medical needs. Unlike social care funding, arranged for some who need looking after, continuing healthcare is only offered to those in ill health who need regular attention from medical professionals. A decade ago, 34% of these applications were successful. Today that figure is 22%. Meanwhile, separate data seen by this newspaper reveals a sharp rise in the number of assessments that are deemed to have wrongly decided against funding at a subsequent appeal. Lisa Morgan, partner at Hugh James solicitors, which specialises in helping families fight for NHS care funding, says: 'In many cases, if [the clinical commissioning group] had made the right decision in the first place, it could have saved itself thousands of pounds.' The revelations come weeks after The Mail on Sunday told of the heartbreaking stories of desperately unwell people left utterly reliant on relatives, having been refused NHS-funded care. Some have then embarked on the lengthy and costly process of appealing the decision with legal help, to be told months or years later that they should have been granted funding all along. Read full story Source: Mail Online, 11 June 2022
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Content ArticleThe current hospital backlog has had a huge impact on many patients waiting for treatment. But if you are a woman, on a low income or from an ethnic minority background, you are more likely to have a worse experience of waiting for care. Research from Healthwatch has highlighted people were unhappy with the communications they received and the lack of support the NHS gave them to help with things like pain relief or accessing physiotherapy. These concerns were not experienced equally by all, and findings were particularly stark among disabled people, those with long term health conditions, and those on lower incomes. A new poll of 1,000 adults on NHS waiting lists shows that a poorer experience of waiting can be linked to factors such as wealth, disability, level of education, gender or ethnicity.
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News Article
NHS waiting lists: Women, low earners and ethnic minorities worst affected
Patient Safety Learning posted a news article in News
Women, low earners and ethnic minorities are faring worse on NHS waiting lists, according to research. Healthwatch, a patient watchdog, warned there was a risk that those with “more demands on their lives” such as long hours or caring responsibilities could end up at the back of the queue. It urged hospitals to be proactive in managing waiting lists and communicate with patients who might otherwise be left in limbo. The Healthwatch survey found 54% of women had waited more than four months for treatment, compared with 42% of men. They were also more likely to have had treatment delayed or cancelled, and to feel that a delay to treatment had made an impact on their ability to work. Some 54% of people on lower incomes had been waiting more than four months for hospital care, compared with 34% of higher wealth individuals. They reported a greater impact on their mental health and their ability to work. And 57% of respondents from ethnic minorities had faced a delay to or cancellation of hospital treatment, compared with 42 per cent of white British people. Louise Ansari, Healthwatch England’s national director, said the factors could have a “layering effect” that meant people had a much poorer experience, calling for “an additional specific focus on those groups” so that they do not end up “in worse and worse health”. Read full story (paywalled) Source: The Times, 8 June 2022 -
Content Article
Patients “taking back control” (BMJ, 13 May 2022)
Patient Safety Learning posted an article in Patient-centred care
BMJ opinion piece from BMJ Chair Richard Smith. -
News Article
Alarm after EHRC says long Covid should not be treated as disability
Patient Safety Learning posted a news article in News
People suffering from long Covid have reacted with alarm to comments by government’s equalities watchdog that the condition should not be treated as a disability. Under the Equalities Act, anyone with a physical or mental impairment that has lasted for longer than 12 months and substantially impacted their ability to carry out normal day-to-day activities qualifies as disabled and is entitled to protection to ensure that they aren’t discriminated against in the workplace. This includes requesting that their employer makes “reasonable adjustments”, such as flexible working hours or home working, to ensure that they can continue working. In a tweet posted on Sunday night, the Equalities and Human Rights Commission (EHRC), which was set up to promote and enforce equality and non-discrimination laws said: “Discussions continue on whether ‘long Covid’ symptoms constitute a disability. Without case law or scientific consensus, EHRC does not recommend that ‘long Covid’ be treated as a disability.” The statement prompted immediate concern and confusion from long Covid support groups and unions. Dr Jenny Ceolta-Smith, an employment advocate for Long Covid Support and co-founder of Occupational Therapy for Long Covid, said: “There is already disbelief of workers’ long Covid symptoms within the workplace, and this harmful announcement by the EHRC may make it much harder for workers to gain the support that they need from colleagues and line managers. It may even mean more jobs are lost.” Read full story Source: The Guardian, 9 May 2022 -
News Article
Thousands of long Covid patients feared to be missing out on disability benefits
Patient Safety Learning posted a news article in News
Thousands of people unable to work because of the effects of Long Covid are feared to be missing out on financial support, with patients struggling to access and apply for the government’s disability benefits scheme. More than 300,000 people in the UK have been left with debilitating, persistent symptoms after catching the virus – but figures show only a tiny fraction of these have successfully claimed benefits. Politicians and campaign groups warn not enough has been done to remove barriers to applying for financial aid. “A vast number of severely impaired people are simply not getting the help they need and are entitled to,” said Dr Jo House, a spokesperson for Long Covid Support, which has around 50,000 members, the majority of whom are in the UK. Jenny Ceolta-Smith, of Long Covid Support’s employment group, said there were “multiple barriers in place” when applying for the disability benefit. She said the assessment process failed to take into account the episodic and fluctuating nature of the condition. “They might be able to perform a one-off activity, but then not do so later in the day,” she said. Read full story Source: The Independent,19 April 2022 -
Content ArticleThis Joint Committee on Human Rights inquiry will look at human rights concerns in care settings in England, highlighting areas in which the human rights of patients, older people and others living with long-term disabilities, including learning disabilities and autism, are currently undermined or at risk.
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News Article
Long Covid could create a generation affected by disability, expert warns
Patient Safety Learning posted a news article in News
Long Covid could create a generation affected by disability, with people forced out of their homes and work, and some even driven to suicide, a leading expert has warned. In an exclusive interview with the Guardian, Prof Danny Altmann – an immunologist at Imperial College London – said that the UK’s current approach to Covid fails to take the impact of infections sufficiently seriously, adding that more needs to be done to aid diagnosis and treatment of Long Covid. “It’s kind of an anathema to me that we’ve kind of thrown in the towel on control of Omicron wave infections and have said ‘it’s endemic, and we don’t care any more, because it’s very benign’,” he said. “It just isn’t. And there are new people joining the long Covid support groups all the time with their disabilities. It’s really not OK, and it’s heartbreaking.” According to data from the Office for National Statistics, by the end of January this year about 1.5 million people – or 2.4% of the population – in the UK said they were experiencing ongoing symptoms more than four weeks after their first suspected Covid infection, with 45% reporting that infection was a year or more ago. The findings chime with a recent UK study that found only around one in three patients who had ongoing Covid symptoms after being hospitalised with the disease reported feeling fully recovered a year later. Asked whether Long Covid could lead to a generation affected by disability, Altmann agreed. “Totally,” he said. Read full story Source: The Guardian, 23 March 2022 -
News ArticleThe carer who admitted the manslaughter of Adelaide woman Ann Marie Smith, who had cerebral palsy, has been jailed for at least five years and three months for her criminal neglect. Sentencing Rosa Maria Maione in the Supreme Court, Justice Anne Bampton said the 70-year-old was grossly negligent, with her care for Smith falling well short of the standard expected. “You did not mobilise her from the chair in which she was found. You did not toilet her properly and you did not clean her properly,” she told Maione on Friday. “You did not feed her a nutritional diet or monitor her intake. You knew you were not capable of properly supporting her and you did not seek assistance in providing for Ms Smith’s needs." “Despite the deterioration in Ms Smith’s health, you did not seek assistance from your supervisor or medical professionals until it was too late.” Justice Bampton said Maione had absolutely no insight into Smith’s physical condition leading up to her death. “Your incompetence, lack of training, lack of assertiveness and lack of supervision produced an environment where you failed to provide appropriate care,” she said. “Every person living with a disability, every person who requires support, every parent, carer and support worker of persons living with a disability, I have no doubt shudders with fear when they hear of the utter lack of care and human dignity afforded to Ms Smith in those last months of her life.” Read full story Source: The Guardian, 18 March 2022
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Content ArticleWhile inequalities in health have always been a problem, the Covid-19 pandemic has shone a spotlight on inequalities, and created an opportunity for change. In this long read by The King's Fund, the authors look at the importance of developing a long-term approach to tackling health inequalities. They examine at historical attempts to tackle health inequalities and argue that we need an enduring national mission to tackle inequality. They highlight that action is needed at national and local levels if this mission is to succeed.
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News Article
USA: Covid long-haulers face grueling fights for disability benefits
Patient Safety Learning posted a news article in News
Deepa Singh, 30, of Louisville, USA, has been seriously ill for two years, racked with extreme fatigue, racing heartbeat and memory problems from Long covid that she says prevent her from working. Adding to her distress, she says, has been a grueling — and so far unsuccessful — battle for disability payments. Singh, who worked as a project manager, is among a cohort of Long Covid patients who have been denied disability benefits, either by private insurance companies, which operate benefit plans offered by employers, or by the Social Security Administration, which manages government disability benefits. Tasked with sorting legitimate health claims from fraudulent or marginal ones, these gatekeepers now face a novel challenge as the coronavirus pandemic drags on: a flood of claims citing a post-infection syndrome that is poorly understood by the medical community and difficult to measure. Patients cite a litany of symptoms that defy verification through basic medical tests. They become exhausted at the merest exertion. They can’t remember simple words. Their hearts feel like they are fluttering. Yet neurological exams, ECGs and chest X-rays come back clean. Doctors said in interviews they are treating Long Covid patients who are clearly too sick to work but who have difficulty meeting the evidence threshold insurers demand: objective medical test results showing an inability to perform work. Specialized tests can measure a few Long Covid-related problems, such as a central nervous system disorder called dysautonomia, which affects the body’s ability to regulate itself. But there are months-long waiting lists for the tests, doctors and patients said. The challenges are similar to those faced for years by people claiming disabilities based on chronic fatigue syndrome. But the pandemic has given rise to such claims on a far greater scale. Read full story (paywalled) Source: The Washington Post, 8 March 2022 -
Content ArticleInfluenza, polio and more have shown that infections can change lives even decades later. So why the complacency over possible long-term effects of COVID-19 writes Laura Spinney in this Nature article.
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Content ArticleThis campaign by the independent statutory body Healthwatch aims to help make sure more people get healthcare information in the way they need it. Patients need clear, accessible information in order to make informed decisions about their health and care. The Accessible Information Standard gives disabled people and people with a sensory loss the legal right to get health and social care information they can understand and communications support if they need it. 'Your Care, Your Way' is asking whether the standard is being delivered by services, and whether it goes far enough. The campaign aims to: Find out how well health and care services are delivering the Accessible Information Standard. Make sure that, if the standard covers you, you know your rights. Find out who else has problems understanding information about their healthcare and needs to be covered by the standard.
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Content ArticleThis report by the user-led non-profit organisation Shaping Our Lives examines the results of a 2021 survey that explored people’s experiences of service user involvement. This research shows the current picture of involvement and explores the barriers that deaf and disabled people face when wanting to share their lived experience. The report contains recommendations for organisations that want to run truly inclusive, meaningful involvement to shape and improve their services.
