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Showing results for tags 'Disability'.
Found 94 results
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Content ArticleHealth inequalities are avoidable, unfair and systematic differences in health between different groups of people. Here we examine the key data on this complex and wide-ranging issue.
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Content ArticleSpina bifida develops early in the embryonic stage of pregnancy but is not usually detected until the midterm (20 week) ultrasound scan. Shine conducted a survey to assess the antenatal care experiences of parents to children with spina bifida. Volunteers were recruited via social media and 71 eligible (UK-based) responses were received, revealing numerous elements of antenatal care in need of significant improvement. Shine have published the findings and recommendations for improving antenatal diagnosis and care for spina bifida.
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Content ArticleSpina bifida is a developmental condition affecting the brain and spine, often leading to physical and cognitive impairments, and bladder and bowel issues. Widely regarded as one of the most severe conditions compatible with life, open spina bifida can result in significant morbidity, with numerous body systems and tissues affected.
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Content ArticleWellcome Collection long read on two women who battled through decades of medical paternalism: Marie Lyon, who took Primodos, and Dr Isabel Gal, the scientist who first raised the alarm.
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Content Article
We all have a right to receive information about our own health in a way we can understand. There is no excuse for poor-quality, inaccessible, information that excludes people. In this blog I will consider how these needs can be met and the implications for patient safety if they are not. I have written about accessible information in the past but in this blog, I will dig deeper into some specifics, namely: Special educational needs, learning difficulties and disabilities. Visual and hearing impairments. Dominant language. If you’re interested in accessible information, I’d strongly recommend you familiarise yourself with the Accessible Information Standard – this is a standard that the NHS and adult social care have to adhere to by law when it comes to communicating with the general public. This blog will give some tips on how you can make sure you meet this standard. -
News Article
Families of disabled people tell BBC of battle for NHS care support
Patient Safety Learning posted a news article in News
More than 100 families looking after severely disabled adults and children outside hospital, have told the BBC that the NHS is failing to provide enough vital support. The NHS says help is based on individual needs and guidelines ensure consistency across England and Wales. However, some families describe the system as adversarial. Only those living outside hospital with life-limiting conditions, or at risk of severe harm if they don't have significant support, get this help from the NHS. It is provided through a scheme called Continuing Healthcare (CHC) for adults, and its equivalent for under-18s, Children and Young People's Continuing Care. Cases in England are decided by NHS Integrated Care Boards (ICBs) - panels responsible for planning local health and care services. In Wales, they are overseen by local health boards. The BBC has heard from 105 families who described serious concerns with how the two schemes are working - with most calling for reform. One young man with 24-hour needs hasn't received any CHC help despite being eligible since February 2023 - his parents, who first applied for support on his behalf nearly two years ago, currently provide round-the-clock care Another family were told overnight care for their teenage child - who is non-verbal, has severe mobility issues and requires 24/7 support - would be reduced from seven down to three nights a week, without a reason being given. Read full story Source: BBC News, 14 February 2024 -
Content ArticleThere are around 1.3 billion people in the world with a disability, but in many settings, the understanding of reasonable adjustments among healthcare workers is inadequate to provide the same quality of care for people with disabilities as individuals without disabilities. Inclusive healthcare requires improvements in accessibility and training for healthcare professionals. Some progress is being made and medical education in some countries now includes disability, human rights and reasonable adjustments in education and training. This Lancet article outlines global examples of attempts to improve healthcare workers' understanding of disabilities and inclusion.
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Content Article
Top picks: Eight resources about disability
Patient Safety Learning posted an article in Health inequalities
The 3 December is International Day of Persons with Disabilities. More than 1.3 billion people experience significant disability today, which represents 16% of the global population. Many persons with disabilities die earlier, are at increased risk of developing a range of health conditions, and experience more limitations in everyday functioning than the rest of the population. To mark International Day of Persons with Disabilities, we are sharing eight resources, blogs and reports from the hub on improving care, treatment and outcomes for people with disabilities. -
Content ArticleThis study in the Journal of Applied Research in Intellectual Disabilities aimed to share rich detail of the emotional and physical impact on children and young people with intellectual disabilities of attending hospital, from their own and their parent's perspective. The authors found that the multiple and compounding layers of complexity surrounding hospital care of children and young people with intellectual disabilities resulted in challenges associated with loss of familiarity and routine, undergoing procedures, managing sensory overload, managing pain and having a lack of safety awareness. They concluded that an individualised approach to care is needed to overcome these issues.
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News Article
Covid inquiry: Ex-minister challenged on plan for disabled people
Patient Safety Learning posted a news article in News
An ex-minister has defended the government's approach to disabled people during the pandemic, following claims they were "largely disregarded". Justin Tomlinson, a former minister for disabled people, told the Covid inquiry the government recognised this group was at greater risk from the virus. He added that work had been done "at pace" to address this. The inquiry has previously been told that disabled people's views were not properly heard ahead of key decisions. Nearly six out of 10 people who died with coronavirus in England from January to November 2020 were disabled, according to the Office for National Statistics (ONS). In a witness statement published earlier this month, chief executive of charity Disability Rights UK, Kamran Mallik, said: "From the statements, decisions and actions of the UK government throughout the crisis, considerations relating to disabled people appeared to be largely disregarded." In his evidence earlier this month, Mr Mallik of Disability Rights UK said there was a "shocking disregard" when it came to providing information in alternative formats for disabled people, including letters on shielding for clinically vulnerable groups. He said his charity had also raised concerns about protections for care home residents, and help for disabled people who were not shielding but still needed support accessing food and essentials. Mr Mallik added that there had been no consultation to allow the views of charities or disabled people to be "properly heard before decisions were made". Read full story Source: BBC News, 8 November 2023 -
News Article
Wheelchairs and weight: 'I haven't been able to weigh myself for 22 years'
Patient Safety Learning posted a news article in News
Weight management is a sensitive topic. Nevertheless, the measurement is often used as a marker to inform medical decisions or for someone's personal interest. But for many wheelchair users, accessing scales has proved near impossible. "The last time I was weighed was about 22 years ago, " Lizzie tells the BBC podcast, Access All. "I think I was about 15." As a result, now aged 37, Lizzie has been through three successful pregnancies, all without knowing how her body was adapting or how her baby was growing. Based in Devon, she has a degenerative muscle-related impairment and uses a wheelchair. This makes weighing herself on traditional bathroom scales, which require you to stand still and independently on a small platform, a challenge. There is equipment out there to help wheelchair users, like Lizzie. Chair scales enable someone to sit on a seat which records their weight and there are similar bed and hoist versions too. There are also wheel-on scales which are very large and involve subtracting the weight of the chair afterwards. But none of these seem widely available. Dr Georgie Budd, who is based in Merthyr Tydfil, says this worries her. A wheelchair user herself she appreciates how difficult it can be for people to access scales. "There's a lot of things that we use weight for in health - anaesthetics and drug dosing - and just to keep an eye on it as well for someone's general health. During pregnancy for example, if someone was losing weight I, as a GP, would actually be really quite concerned," she says. Neither NHS England nor the government have guidance for doctors nor advice on what equipment to use and no figures are kept on how many hospitals have access to such equipment and where they are. The National Institute for Health and Care Excellence (NICE) previously considered the issue in 2014 and requested more research be carried out. But so far nothing has been started. Read full story Source: BBC News, 13 October 2023 -
Content ArticleThe Disability Royal Commission held Public hearing 33 in Brisbane from 8 to 10 May 2023. Public hearing 33 was a case study about two young men, brothers Kaleb and Jonathon. Their names have been changed to protect their identity. The brothers have disability and the hearing examined their experience of violence, abuse, neglect and deprivation of human rights. They held the hearing to ask why and how it happened. In total 13 witnesses gave evidence. This video is a summary of the report.
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Content ArticleThe Australian Disability Royal Commission was established in April 2019 in response to community concern about widespread reports of violence against, and the neglect, abuse and exploitation of, people with disability. These incidents might have happened recently or a long time ago. The Disability Royal Commission will investigate: preventing and better protecting people with disability from experiencing violence, abuse, neglect and exploitation. achieving best practice in reporting, investigating and responding to violence, abuse, neglect and exploitation of people with disability. promoting a more inclusive society that supports people with disability to be independent and live free from violence, abuse, neglect and exploitation. The Disability Royal Commission gathers information through research, public hearings, the personal experiences people tell us about and submissions, private sessions, and other forums. It will deliver a final report to the Australian Government by 29 September 2023.
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Content ArticleThis is one of a series of 'Learning from safety incidents' resources published by the Care Quality Commission (CQC). Each one briefly describes a critical issue—what happened, what the CQC and the provider have done about it, and the steps you can take to avoid it happening in your service. This edition is about ensuring the safety of people using wheelchairs in health and social care. The CQC recently prosecuted a care home provider for exposing someone using their service to a significant risk of avoidable harm, which resulted in a life-changing injury.
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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 ArticleThis national data collection project has been commissioned by NHS England (NHSE) and is run by the NHS Benchmarking Network (NHSBN). The aim of the project is to understand the extent to which organisations are complying with the NHSE Learning Disability Improvement Standards, and to identify improvement opportunities. Compliance with these standards requires organisations to assure themselves that they have the necessary structures, processes, workforce and skills to deliver the outcomes that people with learning disabilities and their families and carers, expect and deserve. This project aims to collect data from a number of perspectives to understand the overall quality of care across Learning Disability services. Read summary reports from previous years of the NHS England Learning Disability Improvement Standards project.
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News Article
Men on epilepsy drug may have higher risk of children with disabilities
Patient Safety Learning posted a news article in News
Men who take the epilepsy drug sodium valproate could beat increased risk of having children with disabilities, research has found. A study ordered by the European Medicines Agency (EMA) has suggested a link between fathers taking the drug three months before babies are conceived and a small increased likelihood that the children will have neurodevelopmental disorders. The drug manufacturer Sanofi has not published the full results, leading to confusion among patients and doctors. Sodium valproate, sold in the UK as Epilim, is prescribed to treat epilepsy, bipolar disorder and migraines. It is known to cause deformities in one in ten babies exposed to it in the womb because their mothers are taking the drug. Four in ten babies suffer developmental delays. Read full story (paywalled) Source: The Times, 2 July 2023 -
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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News ArticleThe Home Office has been accused of abandoning 55 asylum seekers with a range of severe disabilities and life-limiting conditions at a former care home in an Essex seaside town. The asylum seekers, who fled various conflict zones including Sudan and Afghanistan, are struggling with a range of health conditions they have suffered from since childhood or life-changing injuries suffered in war zones. One told the Guardian: “Everybody is suffering in this place. It used to be a care home but now there is no care. We are free to come and go but to me, this place feels like an open prison. We have just been left here and abandoned.” Those living in the former care home are struggling with health conditions including loss of limbs, blindness, deafness and mobility issues requiring a wheelchair – although not all have been able to access one. At least eight are paraplegic. They were placed in the former care home, which opened in November, by Home Office officials. It is staffed like a standard Home Office asylum seeker hotel with security guards and reception staff but does not have trained care workers or nurses there as part of the contract. Read full story Source: The Guardian, 23 June 2023
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News ArticleThousands of disabled adults and children, including those with the highest and most complex needs, are having to wait more than four months for an NHS wheelchair, official health figures show. In one part of the country more than two-thirds of patients referred to the wheelchair service face waits of more than 18 weeks, or roughly four months, to get the help they need. Besides preventing them from getting around independently, and the mental health problems that can come from the resulting social isolation, a leading disability charity says disabled people can also be left with physical pain if forced to use poorly fitting or unsuitable chairs while they wait for upgrades and adaptations. Data published by NHS England shows 16.5% of patients – one in six – were waiting longer than the NHS target time of 18 weeks for a wheelchair, equipment for a wheelchair, or wheelchair modifications between October and December last year. This represents more than 6,000 adults and almost 1,600 children, of which thousands were registered as having high or specialist needs. The figures include new patients as well as re-referred patients whose needs may have changed or whose current equipment needs adjusting or modified. Read full story Source: National World, 21 March 2023
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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.
