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Found 96 results
  1. News Article
    The NHS’s leading wheelchair provider has been told to urgently improve its complaints system by the health service ombudsman amid concerns disabled people are waiting up to two years for chairs. The parliamentary and health service ombudsman (PHSO) took the unusual step of writing to AJM Healthcare after a sharp rise in complaints from wheelchair users. Most related to people not receiving new wheelchairs or the correct parts. The waits range from a month to two years, the ombudsman said. Read full story Source: Guardian 21 May 2024
  2. Content Article
    Psychotropic medicines are medications that act on the brain. They are used for mental health conditions but are sometimes also given to people because their behaviour is seen as challenging, such as people with learning disabilities or cognitive impairment. This standard produced by the Australian Commission on Safety and Quality in Healthcare provides guidance to clinicians, healthcare services, patients, families and carers on the safe and appropriate use of psychotropic medicines. It contains: Eight quality statements describing safe and appropriate care. A set of indicators to support monitoring and quality improvement.
  3. Content Article
    Health 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.
  4. Content Article
    Spina 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. 
  5. Content Article
    Spina 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.
  6. Content Article
    Wellcome 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.
  7. 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. 
  8. News Article
    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
  9. Content Article
    There 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.
  10. Content Article
    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.
  11. Content Article
    This 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.
  12. News Article
    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
  13. News Article
    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
  14. News Article
    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
  15. News Article
    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
  16. News Article
    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
  17. News Article
    The 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
  18. News Article
    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
  19. News Article
    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
  20. News Article
    The 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
  21. News Article
    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
  22. News Article
    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
  23. News Article
    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
  24. News Article
    Record 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
  25. News Article
    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
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