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Found 18 results
  1. News Article
    The distressing testimonies of women with sight loss have influenced new guidelines designed to make cervical screening more accessible. The Royal National Institute of Blind People (RNIB) Scotland says the more than 100,000 blind and partially sighted women in Scotland face a range of barriers in accessing cervical screening. Some women have described their experience as “rough” and “painful”, telling the charity that they feel uninformed and unsupported throughout. Kirin from Edinburgh is registered blind. Reflecting on her experience attending a cervical screening appointment, she said: “I only went once, and it went disastrously wrong. It was very painful. I didn’t know what was going to happen, or when it was going to happen. “I have not and will not go back. “The nurse took no time to explain what was going to happen; or what the procedure entailed. Having to position myself on the table with no sight was incredibly difficult.” Another woman described how distressing the process can be when communication and care are lacking: “I had my tests conducted by a nurse who was rude and rough.” “I was told not to be stupid, and that I was behaving like a child. “The nurse did not explain to me what they were doing, and this was unpleasant enough that I haven’t gone back to have another screening.” Read full story Source: Health and Care Scotland, 16 April 2025
  2. Content Article
    Patients with vision or hearing loss frequently encounter difficulties accessing vital health information, medication instructions, and effectively using medical devices. This report for the Patient Safety Commissioner for England, commissioned from Professor Margaret Watson, highlights serious gaps and deficiencies in the way that people with visual and/or hearing impairment or loss (referred to as sensory impairment) are able to access and use medicines and medical devices safely. This report presents the results of a short-term study to explore the challenges experienced by patients with sensory impairment in relation to their safe and effective access to and use of medicines and medical devices. This study was conducted from September to December 2024. The primary data that were generated were derived from three sources: Focus groups involving individuals with visual impairment or loss, including people with diabetes. Key Informant responses to an electronic survey. Medicines and Healthcare products Regulatory Agency (MHRA) Yellow Card reports. Patients reported distressing experiences due to inaccessible packaging, unreadable patient information, inadequate communication about medication changes and a lack of suitable reporting mechanisms for issues. The report makes the following recommendations: The MHRA needs to review – working alongside patients – whether their current guidance and regulations for the licencing and packaging of medicines goes as far as is possible to enable their safe use by those with sensory impairment. The Association of the British Pharmaceutical Industry (ABPI), MHRA and Department of Health and Social Care (DHSC) should work together to restart work – alongside published milestones – to digitise paper-based patient information leaflets via the existing UK Electronic Patient Information Task Force (ePIL). As part of this restart, ePIL – working with patients – should examine how to maximise the benefits of this work for patients with sensory impairment. NHS England’s Diabetes Programme Team should launch a patient reference group to assess, understand and mitigate the barriers and enablers to the safe and effective roll-out of medical devices and other education programmes for the management of diabetes (such as DAFNE) for those with sensory impairments. DHSC and NHS England need to ensure the work announced to improve and expand the NHS App in ‘Reforming elective care for patients’ includes an assessment – conducted with the input of patients – to determine whether further accessibility improvements are required, especially for people with visual impairment. In a number of other areas, the report states that the Patient Safety Commissioner wants to make observations to a number of bodies – highlighting the outcome without specifying the solutions, in keeping with the ethos of the recent Health Services Safety Investigations Body (HSSIB) report ‘Recommendations but no action: improving the effectiveness of quality and safety recommendations in healthcare.’ The report makes the following observations: A patient’s medical record needs to include a prominent flag of accessibility needs and detailed information about these needs to ensure that the healthcare professional can provide any required reasonable adjustments. All relevant healthcare professionals – including community pharmacists – must have sufficient access to these patient records and flags. Healthcare professionals, particularly community pharmacy personnel and others involved in the direct supply of medicines and medical devices, must have sufficient funding to support the additional time and resources required by to undertake assessments of patient needs and provide the required ‘reasonable adjustments’ for medicines and medical devices. With the anticipated increase in prevalence of sensory impairment amongst the general population, further guidance is required to promote evidence-based practice by health and social care professionals in terms of the medicine journey of people with sensory impairment. It is also crucial that there is provision of training to healthcare professionals (ideally within the undergraduate curricula) regarding the needs of people with sensory impairment. People with experience of sensory impairment should be included in the design of medical devices, as well as user information and instructions to accompany their supply and use. Manufacturers need to provide more resources to facilitate the demonstration of the effective use of medical devices, especially for people with visual impairment.
  3. Content Article
    In this BMJ article, Anna Tylor describes the assumptions she faces as someone who is visually impaired, and how healthcare professionals can make information accessible for blind and partially sighted people.
  4. News Article
    A patient was left with permanent sight loss after a hospital failed to spot the signs of a blood vessel blockage for several months. The person referred to only as Mr L, visited the emergency department at one of Wales' hospitals in January, 2018, but medics failed to consider the possibility he had suffered a watershed stroke. Details of how it took nine months before Mr L was offered a scan to consider this diagnosis have been described in a report from the Public Service Ombudsman detailing the care under Betsi Cadwaldr University Health Board. The Ombudsman, Michelle Morris, also slammed the health board for its failure to act promptly with the complaints process. She said she "cannot fail to be shocked by the fact that, although Mr L first complained to the health board in June, 2019, it took until February, 2023 for it to recognise any failings." The report details how between January and September, 2018, the health board failed to promptly and appropriately identify, investigate and treat a blockage of blood vessels in his neck (a condition called carotid artery stenosis, where the blockage restricts the blood flow to the middle of the brain, face and head). Mr L also complained that when the issue was eventually identified in September, there was a delay in getting the treatment (surgery) until November. Read full story Source: Wales Online, 2 November 2023
  5. News Article
    Doctors missed a man’s stroke which led him to suffer another one and go temporarily blind. The man said that the experience had changed him from ‘an outgoing social person, to a sheltered man living in fear that he is not being looked after competently’. The 75-year-old visited his GP in Darlington complaining of dizziness, light-headedness, and a numb foot. He had experienced a stroke and should have been immediately sent to hospital. But doctors missed the signs, diagnosed him with a ‘dropped foot’ and requested an urgent MRI scan. However, due to an administrative error the referral wasn’t made and the scan never happened. A month after visiting the GP, the man suffered a blinding headache and diminished vision. He saw an ophthalmologist who referred him to a specialist team. He had suffered another stroke. He also paid for a private scan which confirmed the first stroke happened a month earlier. Distressingly, the man lost vision in his right eye, which he was told could be permanent. Fortunately, his sight returned eight weeks later. His daughter, who described the experience as ‘horrendous’, complained to the Parliamentary and Health Service Ombudsman (PHSO) about her father’s care. The PHSO found that the initial symptoms were signs of a problem with nerve, spinal cord, or brain function. Doctors should have suspected a stroke and immediately sent him to hospital. If that had happened, the second stroke and sight loss would likely have been avoided. Ombudsman Rob Behrens said: “Having a stroke and then being told you could be permanently blind must have been incredibly frightening. The impact on the man, and his family who supported him through the ordeal, will have been deep and long-lasting. “Mistakes like these need to be recognised and acted upon so that they are not repeated.” Read full press release Read case file Source: PHSO, 4 October 2023
  6. Content Article
    Blind and partially sighted people have a legal right to receive accessible health and care information. The RNIB has launched the #MyInfoMyWay campaign, and how to request information in a format you can read. Accessible health and care information allows people with sight loss to manage their health and care with the same level of independence and privacy as everyone else. RNIB accessible health and care information guide Find out how to request accessible information from your NHS or social care provider, and how to complain if you don't receive it. Resources for health and care professionals Information and resources for health and care professionals, to support implementation of accessible information for blind and partially sighted patients and service users.
  7. News Article
    The lives of thousands of blind and partially sighted people are being put at risk by delays in vital care that they have a legal right to after being assessed as visually impaired, according to a report. More than a quarter of English councils are leaving people who have just been diagnosed as blind waiting more than a year for vision rehabilitation assessments and potentially life-saving support, the report by the RNIB revealed. It cited the example of one person who died while waiting for council help. The Guardian can reveal that the case involved a woman from Church Stretton in Shropshire who had been waiting 18 months for an assessment when she tripped on a pothole and died later from head injuries. She had been trying to teach herself how to use a white cane, without any support or training, despite getting a certificate of visual impairment. Councils are obliged to provide such help for those coping with a recent visual impairment under the 2014 Care Act. The support involves helping people cope practically and mentally with visual impairment at a critical time after a diagnosis. The social care ombudsman recommends that councils should provide these services within 28 days of someone receiving a certificate of visual impairment. But the RNIB report, which is based on freedom of information requests to councils in England, found that 86% were missing this 28-day deadline. The report, Out of sight – The hidden scandal of vision rehabilitation warned that the delays uncovered in the figures were dangerous. Read full story Source: The Guardian, 10 March 2024
  8. News Article
    A surgeon sacked by a hospital after raising safety concerns has accused the trust of a cover-up after a patient was partially blinded during an operation. Juanita Graham, 41, lost the sight in her left eye during an operation at Bath's Royal United Hospital (RUH) in 2019. She is now suing the trust. Serryth Colbert said he was put down as the lead author on an investigation into the incident, but said he "did not write a word" of it. Mr Colbert has described the hospital investigation into Mrs Graham's operation as "deeply flawed". The surgeon, who specialises in the head, neck, face and jaw, has made several serious allegations about patient safety at the RUH, and believes these claims led to him being regarded as a troublemaker and dismissed in October 2023. Mrs Graham, from Trowbridge, said she was still traumatised by the operation on her eye. "I remember coming round, seeing the time and felt like a gush and I couldn't see," she said. "The next time I remember waking up again, I thought it was my partner but it was a surgeon and he was crying. I said 'what's gone wrong?'". After the operation, a Root Cause Analyses (RCA) report produced by the trust said the hospital was not to blame, although it did say the risks could have been explained more clearly to Mrs Graham. Mr Colbert, whose name was added as the lead investigator, said his only involvement in the report was when he was called on the phone by a nurse, who he said did the RCA, to explain what the operation involved. The 48-year-old surgeon said: "I have been put down here to my amazement as the lead author on this. "That is not correct. I did not write a word of this. "The conclusion is the root cause of the complication was down to a bit of paperwork which could have been performed a bit better. "The root cause was not down to paperwork. It was all covered up... that was indefensible." Read full story Source: BBC News, 29 February 2024
  9. News Article
    A woman has become blind after her monthly eye injections were delayed for four months during lockdown. Helen Jeremy, 73, said everything she enjoyed doing has "gone out of the window" after losing her eyesight. She has glaucoma and was diagnosed with age-related macular degeneration four years ago. Monthly injections controlled the condition and meant she could still drive and play the piano. However, her appointments were cancelled when the pandemic struck and her eyesight deteriorated. "I was panicking. It was terrifying. Because I'm a widow I'm on my own and it was awful," she said. "Suddenly my eyesight was basically gone. By the time of my next appointment I was told there was no point in going on with these injections because the damage had been done to the back of my eye." Thousands more people in Wales are at risk of "irreversible sight loss" because of treatment delays, RNIB Cymru warns. The Welsh Government said health boards are working to increase services. Read full story Source: BBC News, 27 November 2020
  10. News Article
    Diabetes patients have been warned that non-attendance at eye-test appointments puts them at greater risk of developing unnecessary sight loss. The Royal National Institute for the Blind (RNIB) has described the attendance rates at clinics in Northern Ireland as "alarmingly low" . It said 20% to 40% of patients were not showing up for their appointments on any given day. Prof Tunde Peto, clinical lead for the NI Diabetic Eye Screening Programme, said the most common of many complications caused by diabetes was diabetic eye disease. Diabetes can cause cataracts early on but it can also affect the retina at the back of the eye, "which will eventually lead to sight loss if not treated on time," Prof Peto explained. "Diabetic retinopathy causes no symptoms until it can be just about too late to treat," she said. Ian Catlin from Ballymoney has experienced sight loss due to diabetic retinopathy. He has had Type 1 diabetes since childhood and became aware of problems with his eyesight in his mid-30s. Mr Catlin said he put off asking for medical help because of the fear of what he would be told."I did eventually go, but you're scared and you put your head in the sand," he said.Read full story Source: BBC News, 15 June 2022
  11. Content Article
    Thousands of people with sight loss remain 'Out of Sight' in the hidden scandal of vision rehabilitation. Life changes after sight loss, sometimes overnight, often in dramatic ways. Done well, vision rehabilitation equips people with new ways to stay independent: to get out and about, adapt their work, shop and enjoy hobbies. However, the reality is stark. 86% of local authorities in England miss the 28-day recommended deadline to explore a person’s needs. Threadbare services mean people wait without the support they’re entitled to, at risk of physical accidents and injuries as well as mental health crises. The RNIB are calling on all UK political parties to commit to ensuring blind and partially sighted people get the support they need, when they need it. RNIB research shows that across England in 2022-23 blind and partially sighted people are missing out on services they are legally entitled to: A quarter (26%) of local authorities had people left waiting more than a year for a vision rehabilitation assessment and subsequent support. 86% of local authorities did not complete vision rehabilitation assessments within the ombudsman recommended 28 days, meaning nearly half (48%) of blind and partially sighted people did not receive their assessment in this timeframe. Nearly a quarter (22%) of local authorities have ongoing vacancies for specialist staff, and some areas have no vision rehabilitation specialists at all. A quarter (26%) of local authorities are using non-specialists to undertake vital assessments. Local authorities acknowledge they are struggling to accommodate the rise in demand for rehabilitation services and have uncertainty around the future of its provision. Key recommendations The RNIB is calling on the Secretary of State for Health and Social Care to ensure all blind and partially sighted people can access the support they need to live life to the full. We need national oversight of services to ensure they are consistently delivered to the required standard. To achieve this, the RNIB are asking: Commission the National Institute for Health and Care Excellence to develop guidelines and quality standards, with local authorities having to report on these to government and publish annually. Subject vision rehabilitation services to the same regulation and monitoring as other adult social care services. This could be done within the current legislative framework and by extending the remit of the Care Quality Commission. Recognise the skill and expertise of Vision Rehabilitation Specialists (and Qualified Habilitation Specialists) by making Vision Rehabilitation Specialists a regulated profession. Encourage better integration of services through strengthened links between secondary and social care settings, with a guaranteed route in to vision rehabilitation for everyone who needs it, whilst ensuring blind and partially sighted people are made aware of their rights and the services they can expect to receive.
  12. News Article
    Popular weight-loss jabs have been linked to an eye condition that can cause blindness. People with diabetes prescribed semaglutide (brand names Wegovy and Ozempic) were more than four times more likely to be diagnosed with a condition called non-arteritic anterior ischemic optic neuropathy (NAION), according to a new study. Meanwhile, people who were overweight or obese prescribed the drugs were more than seven times as likely to develop the condition as those on other weight-loss medicines. NAION, which is uncommon, occurs from a lack of sufficient blood flow to the optic nerve. People typically suffer sudden vision loss in one eye, without any pain, and patients often notice the issue on waking up. There are no current treatments for NAION and vision often does not improve. The new study, published in JAMA Ophthalmology, was led by Joseph Rizzo, a professor of ophthalmology at Harvard Medical School in the US. He said: “The use of these drugs has exploded throughout industrialised countries and they have provided very significant benefits in many ways, but future discussions between a patient and their physician should include NAION as a potential risk. “It is important to appreciate, however, that the increased risk relates to a disorder that is relatively uncommon.” Read full story Source: The Independent, 5 July 2024
  13. Content Article
    For people who have sensory impairments or learning disabilities, understanding complex medical information presents a barrier to access. The Accessible (AIS) Information Standard, introduced in 2016, gives disabled people and people with sensory loss the legal right to receive health and social care information and communications in a format that works for them. In 2018, two years after the AIS became law, Karl, who is blind and relies on braille and assistive technologies to access information and communication about his healthcare and appointments, contacted his local Healthwatch to tell them he was having ongoing issues accessing his healthcare information and communications. This case study tells Karl's story and highlights why considering patients' individuals accessibility needs is so important.
  14. News Article
    Premature babies across England will be offered a sight-saving drug, the NHS has announced. Retinopathy of prematurity (ROP) is an eye disease that can occur among babies who are born early or those born with a low birth weight. The NHS routinely screens these babies for the condition, which affects blood vessels in the retina, creating damaging scar tissue and causing blindness. Traditionally the condition is treated with laser eye surgery but some babies are too unwell or fragile to have the treatment. Now the NHS is offering new “life-changing” drug ranibizumab to babies with ROP across England who are unable to receive traditional treatment. NHS chief executive Amanda Pritchard said: “The impacts of vision loss can be absolutely devastating, particularly for children and young people, so it’s fantastic that this treatment will now give families across the country another life-changing option to help save their child’s precious sight." Read full story Source: The Independent, 4 July 2023
  15. News Article
    Blind people are being put “at risk” when the NHS provides them with “inaccessible” information about their health, a charity has warned. People with sight loss have missed appointments, cancer screenings or been unable to use home test kits because of a lack of clear instructions in an accessible format, according to the sight loss charity RNIB. It warned that denying people access to their information can also “cause embarrassment and loss of dignity”. Linda Hansen, from Bradford, who is severely sight-impaired, said that she needed to get her daughter to read her the results of a medical exam which was sent to her in print format. Ms Hansen, 62, said: “I can get my bank statement or a gas bill in accessible formats, but yet I still receive health information that I can’t read. What could be more personal than your health status?” A new RNIB campaign – My Info My Way – has been launched calling for all blind and partially sighted people to be given accessible information. The charity said that a failure to provide information in an accessible format is putting blind and partially sighted people “at risk”. Read full story Source: The Independent, 16 May 2023
  16. News Article
    The backlog for ophthalmology appointments in England is the second-largest in the NHS, with UK eye doctors concerned about the number of patients losing sight unnecessarily. Their shock is palpable. How this could be happening in a rich country such as Britain? There are treatments for common blindness-causing conditions such as macular degeneration, but to get them patients must be able to access the service. And right now the NHS doesn’t have the capacity to deliver them in a timely way. As junior doctors’ unions – and possibly those of consultants and nurses – proceed with strike action, it’s easy to attack medical professionals with the question: “How many people are dying because of your actions?” The truth is that the entire system has been struggling, and people have been dying anyway because of system failures. Now add to this people living with disabilities that were preventable, such as going blind. When Labour was in power, it made a real effort, including with financial allocation, to reduce waiting-list times for non-emergency care. But since the Tories were elected in 2010, years of austerity and public-sector neglect – and the shifting of resources and wealthy patients into a lucrative and growing private sector – has meant that the NHS has been transformed from a robust, preventive healthcare service into an acute one. Its basic offering is now: “If you’re dying, we will save you.” Read full story Source: The Guardian, 19 April 2023
  17. Content Article
    This 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. The 'Your Care, Your Way' campaign webpage features: Opportunities to share positive and negative experiences of care Information on rights under the Accessible Information Standard Stories from 6,200 people about their experiences of healthcare information Healthwatch's findings around whether NHS organisations are meeting the Accessible Information Standard Recommendations on how to fix the issues.
  18. News Article
    Tees, Esk and Wear Valleys NHS FT has launched a deaf digital inclusion project, to find the best practice for communicating with deaf and deafblind patients. The project will look at the barriers faced by the patients around digital communications, and how to help the staff become more deaf aware. The deaf and deafblind patients supported by the trust, their carers, staff, and members of deaf wellbeing groups and networks, are taking part in the project to help provide the best digital communications support to meet deaf patients’ needs. The project is led by the trust’s deaf services team which provides a range of support to deaf and deafblind people aged 18 and over, who mainly use British Sign Language (BSL) to communicate, who also have mental health problems. Emmanuel Chan, Clinical Nurse Specialist for the deaf services team, :explained: “People who are oral and require lip reading can find video appointments a challenge if others on the call are not fully deaf aware and talk over one another. Alongside our project, our team aims to help our staff become more deaf aware to avoid this happening.” Read full story Source: NHE, 26 April 2021
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