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Showing results for tags 'Disability'.
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Event
HoPE Storytelling Festival - Bounce Back Boy
Sam posted an event in Community Calendar
untilJosh Cawley was 22 when he finally died from catastrophic injuries inflicted on him by his birth parents. These resulted in his inability to speak or to move from his wheelchair, but it didn’t dampen his positive and cheeky spirit. This is his story. Josh was adopted by Lynn Cawley, a campaigning Methodist Minister whose devotion to Josh ensured that he lived his short life as positively and ‘normally’ as possible. Lynn couldn’t just be his loving mum though. She was expected to be his palliative care consultant, his nurse, his campaigner for compensation and she had to fight the ongoing battles with the system .The play explores their real story: having to accept that Josh’s needs were too ‘complex’ for the hospice; and dealing with Josh’s transition from boy, to teenager to adult - and being his full-time interpreter. .Professional actor Joseph Daniel-Taylor performs the play and gives the voice to Josh - the voice that he never had. Register -
Content ArticleThere is a well-established case for involving communities and people with lived experience in health and care policy, service design and delivery. NHS England guidance on working in partnership with communities highlights the financial benefits and improvements to quality and health outcomes that working with local communities brings. But could this involvement go further? In this article, Loreen Chikwira, Researcher at The King's Fund looks at the arguments for the use of intersectional approaches in understanding people’s lived experience of care in tackling ethnic health inequalities. These intersectional approaches help health and care providers shift their focus from people’s behaviours to also identifying and addressing ways of working that create and reinforce inequalities and poor experiences of care.
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Content ArticleThis study looked at nursing within the UK and The Netherlands' health sectors, which are both highly regulated with policies to increase inclusiveness. It aimed to investigate the interplay between employment conditions and policy measures at sectoral level, in order to identify how these both facilitate and limit employment participation for disabled workers.
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Content ArticleThe Safe Care at Home Review is an important reminder that people with care and support needs may experience abuse and neglect, sometimes under the guise of ‘care’. Older people, or people with disabilities, may be particularly vulnerable to harm because of their dependence on others and the complexity of their care needs. They might rely on other people for physical, mental or financial support, and may face difficulties recognising or reporting harm. The review draws on a range of evidence, including the Home Office funded Vulnerability Knowledge and Practice Programme, which has highlighted that one in six domestic homicides involved people who were cared for by, or caring for, the suspect.
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Content ArticleNew research showed how a national quality improvement programme called PReCePT (Preventing Cerebral Palsy in Pre Term labour) accelerated maternity units’ use of Magnesium sulphate for pre-term labour. The programme could serve as a blueprint for future efforts to get clinical guidelines into practice in other areas of care. The quality improvement programme involved training staff on the benefits of magnesium sulphate, and having a local midwife dedicated to encouraging and monitoring use of the medicine at their maternity unit. The programme was supported by Academic Health Science Networks (a regional and national organisation that encourages improvement and innovation in healthcare). This article from the National Institute for Health and Care Research provides a plain English summary and short film about the project.
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Content ArticleGetting a GP appointment is often a challenge at the moment, but for many disabled people, access to their GP has long been a problem. The King's Fund explored disabled people’s experiences of involvement in health and care design, their experiences accessing health and care, as well as of involvement in service design. Some participants described the significant difference a GP could make: those who made someone feel listened to and validated, compared with GPs who dismissed concerns or spoke to a person’s personal assistants rather than directly to them.
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Content ArticleUnpaid carers provide significant levels of support to family or friends–equivalent to four million paid care workers. Carers often need support with their own health and wellbeing, but they are not always able to access this. Researchers from The King's Fund interviewed commissioners and providers of support to unpaid carers, ran focus groups with unpaid carers in four areas of England, spoke to national stakeholders and reviewed existing literature and national data sets, in order to understand the current picture of local support available for unpaid carers in England.
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Content ArticleWhen something goes wrong in health or care, patients need to understand their rights to complain and seek resolution. The Equality Advisory Support Service Helpline (EASS) supports individuals who wish to achieve an informal resolution when they feel they have experienced discrimination or want to understand their human rights. This article, written by the EASS for The Patients Association, explains an individual's rights under the Equality Act 2010 and what to do if you believe they’ve been violated.
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News Article
Covid: Lack of ventilator supplies 'hit' disabled people
Patient Safety Learning posted a news article in News
Some disabled people in the UK have been struggling to obtain essentials such as medication and breathing equipment during the Covid pandemic, research for the BBC suggests. Some 60% of those who rely on social care told a YouGov survey they were finding it hard to obtain at least one of their necessities. Charity WellChild said people felt more "forgotten than they ever have been". But ministers say the needs of disabled people were being considered. The Department of Health and Social Care says it has sufficient stocks and patients should contact their local care provider. Like one in 20 of those survey respondents who receive social care, Fi Anderson, a mother of two with muscular dystrophy from Bolton in Greater Manchester, said she has faced problems obtaining breathing apparatus. Her local hospital told her to re-use the filter for her portable ventilator, recommending she boil it, because supplies were so short. Disabled people who rely on social care - which funds equipment and other support to allow them to live independent lives - also said they had struggled to obtain personal protective equipment (PPE) such as face masks. Many of them receive funding directly to employ carers in their home, so they also need to provide them with PPE during the coronavirus crisis. The survey, which the BBC commissioned to mark the 25th anniversary of the Disability Discrimination Act, asked more than 1,000 people about life in the UK with a disability and how it has changed in the shadow of a pandemic. More than 65% felt their rights had regressed, and 71% said disabled people's needs had been overlooked. The Coronavirus Act, which granted the government emergency powers, gave local councils the ability to reduce care, education and mental health provision for disabled people if it became necessary during the pandemic. According to the latest figures from the Office for National Statistics, nearly six out of 10 deaths from COVID-19 were of disabled people. Read full story Source: BBC News, -
News Article
After scandals like Winterbourne View, why is basic decency still remarkable?
Patient Safety Learning posted a news article in News
In late July 2019, Sara Ryan tweeted asking families with autistic or learning disabled children to share their experience of “sparkling” actions by health and social care professionals. She was writing a book about how professionals could make a difference in the lives of children and their families. "These tweets generated a visceral feeling in me, in part because of the simplicity of the actions captured. Why would you not ring someone after a particularly difficult appointment to check on them? Isn’t remembering what children like and engaging with their interests an obvious way to generate good relationships? Telling a parent their child has been a pleasure to support is commonplace, surely?" Sara's own son, Connor, was left to drown in an NHS hospital bath while nearby staff finished an online Tesco order. "Certain people, children and adults, in our society are consistently and routinely positioned outside of 'being human', leading to an erasure of love, care and thought by social and healthcare professionals. They become disposable." What has become clear to Sara is how much the treatment of people and their families remains on a failing loop, despite extensive research, legislative and policy change to make their lives better, and potentially transformative moments like the exposure of the Winterbourne View scandal. At the heart of this loop are loving families and a diverse range of allies, surrounded by a large cast of bystanders who, instead of fresh eyes, have vision clouded by ignorance and sometimes prejudice. "To rehumanise society, we need more people with guts and integrity who are prepared to step up and call out poor practice, and to look afresh at how we could do things so much better with a focus on love and brilliance." Read full story Source: The Guardian, 27 October 2020 Sara Ryan's book: Love, learning disabilities and pockets of brilliance: How practitioners can make a difference to the lives of children, families and adults -
News ArticleThousands of stroke patients have suffered avoidable disability because NHS care for them was disrupted during the pandemic, a report claims. Many people who had just had a stroke found it harder to obtain clot-busting drugs or undergo surgery to remove a blood clot from their brain, both of which need to happen quickly. Rehabilitation services, which are vital to help reduce the impact of a stroke, also stopped working normally as the NHS focused on Covid, the Stroke Association said. It is concerned “many could lose out on the opportunity to make their best possible recovery”. Juliet Bouverie, the charity’s chief executive, said: “Strokes didn’t stop because of the pandemic. Despite the tireless efforts of frontline clinicians who have gone to herculean efforts to maintain services under extremely difficult conditions, some treatments still became unavailable and most stroke aftercare ground to a halt. This means more stroke survivors are now living with avoidable, unnecessary disability.” Read full story Source: The Guardian, 17 September 2020
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News Article
‘If we catch Covid, we die’: UK shielders reflect on still feeling unsafe
Patient Safety Learning posted a news article in News
Sarah Spoor and her two adult sons have spent the past 14 months shielding in a one-bedroom apartment, with no garden, in west London. Her youngest sleeps in the bedroom, his brother has a pull-out bed in the kitchen, while Spoor takes the living room in another fold-out bed. All three have complex medical conditions that leave them vulnerable to Covid, and despite the strain of living in such close quarters, they don’t feel safe leaving home any time soon. “If we catch it, we die; it’s that simple. In the 14 months, I have probably been out about four times, and that’s usually in some dire emergency,” said Spoor, who provides round-the-clock care for her sons, 20 and 24, after their medical team decided it was too risky for their usual carers to continue visiting. The family has yet to be vaccinated as their medical conditions, which include type 1 diabetes, adrenal insufficiency, pernicious anemia and thyroid failure, mean they are likely to experience a severe reaction leading to hospital admission, and they are concerned about the risk of catching Covid in hospital when cases are still prevalent. Spoor is not alone in fearing a return to life after lockdown, with disability charity Scope estimating 75% of disabled people plan to continue shielding until after their second vaccine dose, and some for longer. “I think there is a potential long-term impact that groups of people become squirrelled away and it’s potentially easy for governments and local authorities to forget about them,” said James Taylor, executive director of strategy and social change at Scope. “We’re really worried that, in the long-term, lots of the rights that disabled people have fought for, the visibility, the recognition of disabled people as equal, that all falling away and going backwards.” Read full story Source: The Guardian, 19 April 2021 -
News Article
Disabled woman who died in Sheffield hospital ‘ignored’, parents tell inquest
Patient Safety Learning posted a news article in News
The parents of a young disabled woman who died after she went into hospital for a routine eye operation have told a coroner that doctors ignored their daughter’s attempts to communicate. Laura Booth, 21, stopped eating after she was admitted to the Royal Hallamshire hospital in Sheffield, her mother told an inquest hearing in the city on Monday. Patricia Booth, from Sheffield, said her daughter was ignored by clinicians after she went into the hospital in October 2016 despite her being able to communicate to some extent, including using Makaton signing. She said this was in contrast to her treatment at the Children’s hospital in the city. Sitting next to her husband, Ken, on a remote link, Booth told the inquest: “They never discussed anything with Laura. They just ignored her. She couldn’t speak but she could understand everything.” Booth explained how her daughter could make herself understood to her family and would hold her hands out to the doctors, but did not get a response. “They never gave her a chance,” she said. “They never spoke to her. “It’s really heartbreaking. Laura was trying to communicate with them but they just wouldn’t listen … It just upset Laura that the doctors ignored her.” Read full story Source: The Guardian, 12 April 2021 -
News Article
Social care charges: Disabled and vulnerable adults hit by steep rises
Patient-Safety-Learning posted a news article in News
BBC News Research has revealed disabled and vulnerable adults in England will face a steep rise in the amount they have to pay towards their care, with Directors of council services blaming years of government funding cuts. One woman, Saskia Granville earlier this year was shocked when she found her care charges had increased from £92 to £515 per month. A sum of almost £1,500 was also taken out of Saskia's bank account as a backdated payment, in March, leaving her in debt. Her mother, Bobbie, says: "Without my intervention, she wouldn't have had any food that week. She wouldn't have been able to pay her gas, electricity or water bills." Read full story. Source: BBC News, 24 August 2021 -
News Article
Abuse of disabled patients forces watchdog to close hospital
Patient-Safety-Learning posted a news article in News
The Care Quality Commission has closed mental health hospital, Eldertree Lodge, in Staffordshire after inspectors saw evidence of patients being abused. The hospital, which looked after 40 adults with learning disabilities and autism, was found to have unprofessional and abusive staff members, with incidents being recorded on CCTV where staff slammed doors on patients. Staff were also found to pull or drag a patient in an attempt to move them to a ward seclusion room. Commenting on the latest report, Debbie Ivanova, CQC deputy chief inspector for people with a learning disability and autistic people, said, “In some cases, people were subjected to abuse and interactions that lacked compassion, dignity or respect. This is unacceptable and people deserved better. Additionally, the environment was unhygienic and poorly maintained, as well as blighted by blind spots, which undermined staff observation of patients. Read full story. Source: The Independent, 11 August 2021 -
News Article
Long-term effects of Covid-19 can be considered a disability says Biden
Patient-Safety-Learning posted a news article in News
US President Biden has said people suffering from long-term effects if Covid-19 could be considered a disability under federal civil rights laws. The administration does make clear however that having long covid doesn't automatically mean disability and that an individual assessment may be needed to determine whether a person’s long-term symptoms “substantially limits a major life activity.” President Biden has said the classification of long covid as a possible disability would “help Americans grappling with long-term effects of covid-19 that doctors call long covid.” Read full story. Source: The Washington Post, 26 July 2021 -
News Article
BBC research reveals people with disabilities forgotten during pandemic
Patient-Safety-Learning posted a news article in News
Research by the BBC finds thousands of people with disabilities had been forgotten about during the pandemic, revealing most participants experienced worsening of their disability and many said their vital appointments had been cancelled. The research found some reported attempting suicide due to the sudden changes, being isolated or not being able to access their care or support networks. Scope, one of the UK's biggest disabilities charities have said the research conducted by the BBC confirms the government failed to support people with disabilities during the pandemic. Read full story. Source: BBC, 30 June 2021 -
News Article
Medical treatment denied to sick and disabled people in hotel quarantine
Patient-Safety-Learning posted a news article in News
It has been reported that people in quarantine due to having flown in from overseas, were denied medical treatment when they needed it. Among them, included a baby needing urgent treatment and was stopped from going to Accident and Emergency and a man who had suffered a heart attack. In what has been described as a breach of the law, people quarantined in the hotels in the London area were denied basic facilities and medical treatment. After legal intervention, the government has issued an order to release certain individuals from the hotel after it was found their health was impacted by the quarantine. Read full story. Source: The Independent, 20 June 2021 -
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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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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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. -
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.
