Search the hub
Showing results for tags 'Health Disparities'.
Found 500 results
-
News ArticleDoctors at Department of Veterans Affairs (VA) hospitals nationwide could refuse to treat unmarried veterans and Democrats under new hospital guidelines imposed following an executive order by Donald Trump. The new rules, obtained by the Guardian, also apply to psychologists, dentists and a host of other occupations. They have already gone into effect in at least some VA medical centers. Medical staff are still required to treat veterans regardless of race, color, religion and sex, and all veterans remain entitled to treatment. But individual workers are now free to decline to care for patients based on personal characteristics not explicitly prohibited by federal law. Language requiring healthcare professionals to care for veterans regardless of their politics and marital status has been explicitly eliminated. Doctors and other medical staff can also be barred from working at VA hospitals based on their marital status, political party affiliation or union activity, documents reviewed by the Guardian show. The changes also affect chiropractors, certified nurse practitioners, optometrists, podiatrists, licensed clinical social workers and speech therapists. In making the changes, VA officials cite the president’s 30 January executive order titled “Defending Women from Gender Ideology Extremism and Restoring Biological Truth to the Federal Government”. The primary purpose of the executive order was to strip most government protections from transgender people. The VA has since ceased providing most gender-affirming care and forbidden a long list of words, including “gender affirming” and “transgender”, from clinical settings. Medical experts said the implications of rule changes uncovered by the Guardian could be far-reaching. They “seem to open the door to discrimination on the basis of anything that is not legally protected”, said Dr Kenneth Kizer, the VA’s top healthcare official during the Clinton administration. He said the changes open up the possibility that doctors could refuse to treat veterans based on their “reason for seeking care – including allegations of rape and sexual assault – current or past political party affiliation or political activity, and personal behavior such as alcohol or marijuana use”. Read full story Source: The Guardian, 16 June 2025
-
Content Article1 million people in the UK are unable to speak English well, or at all. People who speak little or no English are more likely to be in poor health, have a greater likelihood of experiencing adverse events and of developing life-threatening conditions and tend to have poorer access to and experiences of healthcare services than people who don’t have language barriers. They can struggle at all points of their journeys through healthcare. Translation and interpreting services for community languages are inconsistent across the NHS. Support for them by NHS commissioners, national programmes and NHS trusts is variable and the lack of high quality, appropriate and accessible services is stopping people from engaging with the healthcare they need. NHS organisations, including commissioners and trusts, have legal duties to provide accessible and inclusive health communications for patients and the public. This framework is designed to support the provision of consistent, high-quality community language translation and interpreting services by the NHS to people with limited English proficiency. Community languages are defined as languages used by minority groups or communities where a majority language exists (for example, English in the UK). It should be used as a framework for action across the NHS, including by NHS trusts and integrated care boards (ICBs). In primary care, it supplements the existing guidance for commissioners on interpreting and translation services and should be used alongside it.
-
News ArticleA senior figure in the health service has criticised it for deep-seated racism after his mother “got a black service, not an NHS service” before she died. Victor Adebowale, the chair of the NHS Confederation, claimed his mother Grace’s lung cancer went undiagnosed because black people get “disproportionately poor” health service care. The NHS’s failure to detect her cancer while she was alive shows that patients experience “two different services”, based on the colour of their skin, Adebowale said. His mother, Grace Amoke Owuren Adebowale, a former NHS nurse, died in January aged 92. He highlighted her care and death during his speech this week at the NHS Confederation’s annual conference as an example of “persistent racial inequalities in NHS services”. His remarks prompted fresh concern about the stark differences between the care received by those from black and other ethnic minority backgrounds and white people. “My mum, who worked for many years as a nurse, died earlier this year at the age of 92. It was difficult. It was not the dignified death that we would have wanted for her,” Adebowale told an audience of NHS bosses. “It wasn’t the death she deserved. So it makes me clear about the need to address the inequity. I think she got a black service, not an NHS service.” Read full story Source: The Guardian, 14 June 2025
-
Content Article
.png.fe1a68a17335d8ef7091c3f048187c31.png)
NHS England has set a target that cervical cancer will be eliminated in England by 2040. Although progress has been made in detecting and treating cervical cancer, there are still many women who are reluctant to go for cervical screening, or who face barriers to accessing screening. These barriers include perceived discrimination, lack of understanding the risk of cervical cancer and unmet access needs. This contributes to persistent health inequalities amongst particular groups. Patient Safety Learning has pulled together nine useful resources shared on the hub about how to improve access and overcome barriers to cervical screening. 1. Cervical screening, my way: Women's attitudes and solutions to improve uptake of cervical screening This research by Healthwatch explored why some women are hesitant to go for cervical screening. Based on the findings of a survey of more than 2,400 women who were hesitant about screening, it makes recommendations to policymakers on how to improve uptake, including: improvements to the way data about the disability and ethnicity of people attending screening. producing an NHS-branded trauma card for affected women to bring to appointments. ensuring staff are effectively trained on accessibility and adjustments to care. looking at the possibility of home-based self-screening. 2. Exploring the inequalities of women with learning disabilities deciding to attend and then accessing cervical and breast cancer screening, using the Social Ecological Model Women with learning disabilities are less likely to access cervical and breast cancer screening when compared to the general population. In this study, the Social Ecological Model (SEM) was used to examine the inequalities faced by women with learning disabilities in accessing cervical and breast cancer screening in England. The study highlights key barriers to access for women with learning disabilities. 3. “We’re not taken seriously”: Describing the experiences of perceived discrimination in medical settings for Black women Black women continue to experience disparities in cervical cancer despite targeted efforts. One potential factor affecting screening and prevention is discrimination in medical settings. This US study in the Journal of Racial and Ethnic Health Disparities describes experiences of perceived discrimination in medical settings for Black women and explores the impact of this on cervical cancer screening and prevention. The authors suggest that future interventions should address the poor quality of medical encounters that Black women experience. 4. Top tips for healthcare professionals: Cervical screenings This article by the Royal College of Obstetricians & Gynaecologists and the My Body Back Project offers tips for healthcare professionals to make cervical cancer screening attendees feel as comfortable as possible during their appointments. Cervical screening can be very daunting for some women, and for those who have experienced sexual violence it can be triggering and cause emotional distress. The article provides tips on communication, making the environment calm and safe, sharing control and building trust with women. 5. The Eve Appeal: What adjustments can you ask for at your cervical screening? The Eve Appeal want to raise awareness of what adaptations women and people with a cervix can ask for during their screening to make the appointment more comfortable. 6. How can reframing women’s health improve outcomes? An interview with Dr Marieke Bigg Dr Marieke Bigg is the author of a 2023 book, This won’t hurt: How medicine fails women. In this interview, Marieke discusses how societal ideas about the female body have restricted the healthcare system’s approach to women’s health and describes the impact this has had on health outcomes. She also highlights areas where the health system is reframing its approach by listening to the needs of women and describes how simple changes, such as allowing women to carry out their own cervical screening at home, can make a big difference. 7. Having a smear test. What is it about? This download A4 Easy Read booklet from Jo's Cervical Cancer Trust uses simple language and pictures to talk about smear tests. It explains what a smear test is, has tips for the person having the test and has a list of words they might hear at their appointment. 8. Health Improvement Scotland: Cervical screening standards Published by Healthcare Improvement Scotland in March, the new cervical screening standards include recommendations to ensure women receive accessible letters and information about screening and healthcare professionals are trained to support women to make informed choices. 9. Cervical cancer screening in women with physical disabilities This US study explored how the cervical cancer screening experiences of women with physical disabilities (WWPD) can be improved. Interviews with WWPD indicated that access to self-sampling options would be more comfortable for cervical cancer screening participation. The authors highlight that these findings that can inform the promotion of self-sampling devices for cervical cancer screening. Have your say Are you a healthcare professional who works in women’s health or cancer services? We would love to hear your insights and share resources you have developed. Perhaps you have an experience of cervical screening or cervical cancer that you would like to share? We would love to hear from you! Comment below (register as a hub member for free first) Get in touch with us directly to share your insights -
Content ArticleDespite comprising half of the global population, women’s health issues are underreported, underrepresented, and underprioritised. Women's health research receives a disproportionate share of funding. Contrary to popular belief, obstetrics and gynaecology alone do not encompass women’s comprehensive health needs. Women’s health encompasses all aspects of health care and research. In this video, experts from various fields—health-care professionals and researchers, charity founders, and Lancet Editors—examine the disparities, frequently exacerbated by intersectionality, that impact women globally.
-
Content ArticleDiabetes UK has launched their new ‘10 Year Vision: For diabetes prevention, care and treatment’, setting out a clear plan for the UK government about how it can improve health outcomes and tackle inequality for people living with diabetes by 2035. The UK government will publish its 10 Year Health Plan in June, which will set out how the health service can make a shift from sickness to preventing ill health. If the government is to succeed with this aim, diabetes must be at the heart of its plans. The ‘10 Year Vision’ gives the government a clear plan for how it can improve health outcomes and tackle inequalities for people living with diabetes, and how this can be achieved by 2035. This vision involves: Stemming the rise in type 2 diabetes – improving our food environment and delivering high-quality support to help people reduce their risk of type 2 diabetes. Ensuring early and accurate diagnosis - which is key to setting people up to manage their diabetes and, in turn, preventing serious complications. Transforming diabetes care and treatment – to help people with diabetes live well. Most diabetes complications can be prevented with simple interventions like annual checks, access to the right treatments and technology, and a focus on reducing health inequalities. Accelerating innovation – Investing in diabetes research and ensuring new treatments and technologies are available to people with diabetes quickly.
-
News ArticleWomen, people from minority ethnic backgrounds, and those living in the most deprived areas of England are less likely to receive treatment after a diagnosis of a deadly heart disease, according to one of the largest studies of its kind. Researchers at the University of Leicester analysed data from almost 155,000 people diagnosed with aortic stenosis – a narrowing of the valve between the heart’s main pumping chamber and the main artery – between 2000 and 2022 across England, from a database of anonymised GP records. The study found that patients living in the most deprived areas were 7% less likely to be referred for secondary care after their diagnosis compared with patients in the least deprived areas, and 4% less likely to undergo a procedure to replace their aortic valve. The analysis, funded by the National Institute for Health and Care Research (NIHR) and presented at the British Cardiovascular Society conference in Manchester, also found that women were 11% less likely to be referred to secondary care, such as a hospital specialist, after their diagnosis than men. Women were also 39% less likely to have a procedure to replace their aortic valve. The study also found that black patients were 48% less likely to undergo a procedure to replace their aortic valve than white patients, with south Asian patients being 27% less likely. Both groups were more likely to be referred to secondary care, although the researchers say that this could reflect referrals for other heart issues not related to their aortic stenosis. Read full story Source: The Guardian, 5 June 2025
-
Content ArticleThis report from the National Federation of Women’s Institutes looks at the ways in which the UK dentistry crisis disproportionately affects women, based on a survey that obtained over 960 responses. The central theme of the report is that dental health is a feminist issue. This is partly a matter of biology: for example, in pregnant women, hormonal changes can lead to gingivitis – an inflammation of the gums. It is also because women take a disproportionate amount of the caring responsibility for children and ageing parents. The report states that with NHS dental appointments becoming harder to obtain, women are bearing financial, temporal, physical, and mental health burdens for not only themselves but also their loved ones. Pregnant women and children are entitled to free NHS dental healthcare. But survey respondents reported being unable to find a dentist taking NHS patients to treat them. So some women are turning to private dentistry but are then finding that they are required to pay high bills. The report makes the point that the lack of available NHS dental healthcare, and the financial burden of private dental care, forces women to choose between their own health and the well-being of their families, further exacerbating inequalities in access to dental healthcare.
-
News Article
UK cancer survival rate doubles since 1970s amid ‘golden age’
Patient Safety Learning posted a news article in News
The proportion of people surviving cancer in the UK has doubled since the 1970s amid a “golden age” of progress in diagnosis and treatment, a report says. Half of those diagnosed will now survive for 10 years or more, up from 24%, according to the first study of 50 years of data on cancer mortality and cases. The rate of people dying from cancer has fallen by 23% since the 1970s, from 328 in every 100,000 people to 252. But cancer remains the UK’s biggest killer, the report by Cancer Research UK (CRUK) says. Progress has not been equal across all cancers, and women have not reaped as many benefits as men. There have been greater improvements in survival for men since the 1970s but survival remains higher in women. Sustained pressure in the NHS means patients wait too long to get diagnosed and start treatment. In England, only about half of cancers are diagnosed at an early stage, and this proportion has not improved for almost a decade. The CRUK chief executive, Michelle Mitchell, said: “Over the last 50 years, the proportion of the population dying from cancer has fallen by more than a fifth because of life-saving research into new ways to prevent people developing the disease, detect it earlier when they do and develop new cutting-edge treatments. “Yet cancer remains the UK’s biggest killer, causing around one in four deaths in the UK – far more than other disease groups. For people affected by cancer, this means lost time and fewer precious moments with loved ones. “As this report sets out, it is a time of both optimism and realism. We’re in a golden age for cancer research, with advances in digital, genomics, data science and AI reimagining what’s possible and bringing promise for current and future generations. “However, despite the best efforts of NHS staff, patients are waiting too long for diagnosis and treatment, and cancer survival is improving at its slowest rate in the last 50 years. This is not acceptable.” Read full story Source: The Guardian, 3 June 2025 -
Content ArticleThe annual Cancer in the UK report summarises key data across the cancer pathway, including prevention, diagnosis, treatment and outcomes. It looks at where progress is being made and what challenges remain in the UK. Evidence in this report shows that improvements can be made across the cancer pathway – preventing cancers, diagnosing patients earlier and ensuring patients have access to the best treatment options – to attain outcomes that are among the best in the world. The report concludes by setting out the priority actions that are vital to addressing challenges faced by cancer services and lays out how data-led insights can strengthen our ability to beat cancer
-
News ArticleThe UK is becoming “the sick person of the wealthy world” because of the growing number of people dying from drugs, suicide and violence, research has found. Death rates among under-50s in the UK have got worse in recent years compared with many other rich countries, an international study shows. While mortality from cancer and heart disease has decreased, the number of deaths from injuries, accidents and poisonings has gone up, and got much worse for use of illicit drugs. The trends mean Britain is increasingly out of step with other well-off nations, most of which have had improvements in the numbers of people dying from such causes. The increase in drug-related deaths has been so dramatic that the rate of them occuring in the UK was three times higher in 2019 – among both sexes – than the median of 21 other countries studied. The findings are contained in a report by the Health Foundation thinktank, based on an in-depth study of health and death patterns in the 22 nations by academics at the London School of Hygiene and Tropical Medicine (LSHTM). “The UK’s health is fraying,” they concluded. Read full story Source: The Guardian, 20 May 2025
-
Content ArticleThis briefing from the Health Foundation compares trends in mortality within the UK and with 21 high-income countries, based on new research by the London School of Hygiene and Tropical Medicine. The findings are stark, underlining deep inequalities in health between different parts of the UK and a worrying decline in UK health compared with international peers. Key points: Improvements in UK mortality rates slowed significantly in the 2010s, more than in most of the other countries studied. By 2023, the UK female mortality rate was 14% higher than the median of peer countries and the UK male mortality rate was 9% higher. For both, the gap to the median widened significantly after 2011, and the UK’s ranking relative to peer countries has now worsened. Improvements in mortality rates slowed across all UK nations and regions in the 2010s – but there are significant geographic inequalities. Scotland, Wales and Northern Ireland all have higher mortality rates than England. Scotland is performing particularly poorly – of the countries studied, in 2021 only the US had a worse mortality rate. In 2021, mortality rates were 20% higher in the North East and North West of England than in the South West. People aged 25–49 have seen a particularly pronounced relative worsening of mortality rates. In 2023, UK female mortality rates for this age group were 46% higher than the median of peer countries, while male rates were 31% higher. Of the other countries studied, only Canada and the US experienced a similar worsening of mortality rates among this age group over the 2010s. This worsening of mortality rates is a sign of ill health in the working-age population, acting as a drag on economic growth. Of the main three causes of death for people aged 25–49, mortality rates for cancers and circulatory diseases improved between 2001 and 2019, but rates worsened for deaths from external causes. Deaths from external causes explain between 70% and 80% of the divergence in UK mortality rates compared with the median of peer countries over this period. While in the 2010s alcohol-related mortality rates for people aged 25–49 plateaued or declined and mortality rates for suicide (and undetermined intent) slightly increased, the rate of drug-related deaths rose sharply. In contrast, rates of drug-related deaths continued to decline for peer countries. As a result, the drug-related mortality rate in the UK was more than three times higher in 2019 than the median of peer countries. Geographic inequalities in drug-related deaths are stark among people aged 25–49. In 2019, the drug-related mortality rate in Scotland was around 4 times higher than in England. Within England, the drug-related mortality rate in the North East was 3.5 times higher for men and almost 4 times higher for women than in London. With the UK comparing poorly with many other high-income countries, improvement is both possible and urgently needed. This will require long-term action for economic recovery in areas of long run industrial decline; a strong focus on prevention; investment in public health services and action to address risk factors such as smoking, alcohol and poor diet; and a concerted effort to tackle drug-related deaths. These actions should be brought together in a clear strategy for tackling health inequalities. The UK government’s health mission promised just such an approach, but progress so far has been slow. This needs to change or the UK’s health will fall further behind its international peers.
-
Content ArticleObesity was once devalued in most areas of health policy but has recently taken centre stage in policy circles. Unfortunately, this renewed focus is not due to recognition of the increasing prevalence or a sudden appreciation of this issue. Instead, obesity has been thrust into the limelight because of the emergence of tirzepatide and other dual GIP and GLP-1 receptor agonists for weight loss. Partha Kar, a consultant in diabetes and endocrinology, looks at the policy and the wider issues and challenges in rolling it out.
-
News ArticlePeople from minority ethnic backgrounds in the most deprived areas of England are up to three times more likely to need emergency treatment for asthma than their white counterparts, analysis has found. Analysis of NHS statistics conducted by the charity Asthma and Lung UK found that Asian people with asthma from the most deprived quintile in England are almost three times more likely to have an emergency admission to hospital than their white counterparts. Black people with asthma in the most deprived quintile are more than twice as likely than their white counterparts to be admitted to hospital. People with chronic obstructive pulmonary disease (COPD) aged between 45 and 54 in the most deprived quintile are nine times more likely to be admitted as an emergency than those in the least deprived quintile, according to the analysis. Sarah Sleet, the charity’s chief executive, said the figures highlighted “shocking health inequalities in our society”. Sleet said: “The UK has the worst death rate in Europe for lung conditions and they are more closely linked to inequality than any other major health condition. The fact that people from the most deprived communities and from ethnic minority backgrounds are much more likely to reach crisis point is yet another wake-up call. “Social disadvantages – including poor housing, mould, damp and air pollution – can both cause chronic lung conditions and make them worse. And it’s the poorest in society and those in ethnic minority communities who are more likely to be living in low-quality housing and in areas with high levels of air pollution.” Read full story Source: The Guardian, 12 May 2025
-
News Article
‘Concerning’ lack of female-only medical trials in UK, say health experts
Patient Safety Learning posted a news article in News
Health experts are calling for more UK clinical trials to focus on finding new treatments for women, as “concerning” data reveals they are severely under-represented, with 67% more male-only studies than female-only. Details of thousands of studies were collected by the Medicines and Healthcare products Regulatory Agency (MHRA) and the University of Liverpool. The evidence shows the UK is a hub for pioneering research, with one in eight trials testing humans for the first time, and cutting-edge treatments such as gene therapies becoming a new growth area. But a review of the data by the Guardian found that women were significantly under-represented. Both sexes were included in most trials (90%), but male-only trials (6.1%) were nearly twice as common as female-only studies (3.7%). Pregnant and breastfeeding women were especially under-represented – involved in just 1.1% and 0.6% of trials respectively. Women’s health experts expressed alarm over the figures, which they said meant women and their doctors were having to make decisions about whether to take a drug in a “vacuum of evidence”. Some areas of research are dominated by men at all levels – funders, researchers, consultants and patients – and as a result there could be a “reluctance” to fund female-only trials, the experts added. Dr Amy Brenner, an assistant professor in the clinical trials unit at the London School of Hygiene & Tropical Medicine (LSHTM), said: “It is particularly concerning that there are more male-only trials than female-only trials as, while they may be disease-specific, it is certainly not true that there are more male-only than female-only diseases.” The gender gap had serious implications, Brenner said. “This under-representation means there is a lack of evidence on the safety and effectiveness of many interventions in women.” There was an “urgent need” to correct the disparity in order to improve women’s health outcomes, she added. Read full story Source: The Guardian, 7 May 2025 Further reading on the hub: Medicines, research and female hormones: a dangerous knowledge gap -
Content Article
WHO World report on social determinants of health equity confirms that our health and wellbeing depends on much more than our genes and access to health care. To reduce these avoidable and unjust health gaps we must address the non-medical root causes that shape most of our health and wellbeing. Unacceptable gaps persist in how long people can expect to live healthy lives depending on where they live, the communities they belong to, their education level, their race and ethnicity, their income and wealth, their gender and whether they have a disability. The social determinants of health equity - that is, the conditions in which people are born, grow, live, work, and age, and people’s access to power, money, and resources—have a powerful influence on these avoidable and unjust health gaps. This comprehensive World report on social determinants of health equity, as requested by resolution WHA74.16, reviews the insufficient progress on meeting the Commission on Social Determinants of Health’s targets on achieving health equity and focuses the narrative and action agenda on what produces and reproduces health inequities and what proven policy remedies are available. The report includes 14 specific recommendations for action within four action areas. Country examples throughout the report showcase actions and diverse strategies for actioning the report’s recommendations across different contexts. The report aims to inform global, national and local policymaking, providing a foundation for coordinated action and investment in social determinants of health equity. The report was developed with input from scientific and policy advisory groups, commissioned papers and evidence reviews, extensive internal contributions across the three levels of WHO, and consultation with Member States through the Executive Board and World Health Assembly. -
News ArticlePeople in the most deprived areas of England are almost twice as likely to be admitted to hospital as a result of infectious diseases than their least deprived counterparts, according to a major study. The report, by the UK Health Security Agency (UKHSA), analysed NHS and government data to look at the state of health inequalities in England due to infectious diseases and environmental health hazards. The analysis found a stark regional divide across England: those living in the north-west of the country were 30% more likely to be admitted to hospital for an infectious disease, with 3,600 admissions for every 100,000 people between September 2023 and August 2024, compared with the average for England, which stood at 2,800 for every 100,000. The study found that inequality was highest in the case of respiratory infections, with an estimated additional 260,000 admissions due to inequalities associated with deprivation. People living in the 20% most deprived areas of England were twice as likely to be admitted to hospital for respiratory diseases, seven times as likely for tuberculosis and six times for measles, than their counterparts from the least deprived areas. Prof David Taylor-Robinson, an academic co-director at Health Equity North and professor of public health and policy at the University of Liverpool, said: “This report echoes past research showing that deprived communities, typically in the North of England, bear the brunt of health inequalities. “It is particularly troubling to see the high number of hospital admissions due to infectious diseases, especially as some of these are preventable diseases.” Read full story Source: The Guardian, 2 May 2025
-
Content ArticleThe most recent Labour Party manifesto made a promise: “Never again will women’s health be neglected. Labour will prioritise women’s health as we reform the NHS”. This report takes that promise as a backdrop to an examination of inequalities in women’s sexual and reproductive health. It starts with the observation that women’s reproductive health has historically been overlooked by policy makers, with only 2% of medical research funding spent on pregnancy, childbirth and female reproductive health. This, it says, “leaves stark evidence gaps about female-specific health”. There are also “acute variations of women’s access to local reproductive health services due to the fragmented way the system is designed and delivered”. According to the authors, these variations deepen inequalities. Problems include the following: Care pathways that are disjointed, difficult to navigate and create artificial divisions between contraception, sexual and reproductive health. A lack of ethnicity reporting, leading to disparities in care and outcomes. Cuts to Public Health Grant funding, with real terms spending on contraception falling by 29% between 2015/16 and 2022/23, and with big reductions in the availability of specialist sexual and reproductive health clinics. These cuts “tend to be greater in more deprived areas, which compounds and entrenches existing health inequalities”. There are further recommendations, at both the national and the local and regional levels. The report’s authors are clear that 'sexual and reproductive health forms a central part of women’s health', and call on the government to deliver on its manifesto promise.
-
News ArticleThe NHS is “not working” for people in the UK with rare diseases as they are left to “fall through the cracks,” a damning new report has claimed. Nearly three in ten (30%) people with certain uncommon conditions say they are waiting for five years between symptoms starting and being diagnosed with their condition. Many are still facing “poor care co-ordination” after their diagnoses, the report by the Rare Autoimmune Rheumatic Disease Alliance (RAIRDA) finds, alongside difficulties accessing information and support. Geographical factors also make too big a difference, the authors add, with where people live making a drastic difference to the level of care they can expect to receive. The report claims that the UK health system has had an “increasing focus” on major and common conditions, but people with these rare conditions are being left to “fall through the cracks”. Read full story Source: The Independent, 29 April 2025
-
Content ArticleThe Rare Autoimmune Rheumatic Disease Alliance (RAIRDA) has launched a report revealing that individuals living with rare autoimmune rheumatic diseases (RAIRDs) experience stark variations in their care and treatment. The report, developed in partnership with Ipsos, draws on survey responses from over 1,300 people across the UK and paints a concerning picture: nearly one in three respondents waited more than five years for a diagnosis, with the average wait time standing at two and a half years. Key findings from the report include: 86% of those who waited over five years for a diagnosis said it negatively impacted their ability to complete everyday tasks. 73% reported a negative effect on their mental health. 66% of working individuals said their condition impacted their ability to work effectively. Only 16% of respondents felt they had sufficient access to information and support. Just 26% had confidence in their GP’s understanding of their condition. RAIRDA is calling for urgent action. The report sets out a series of practical policy recommendations, including: The introduction of clear and measurable targets for timely referrals and treatment. A named care coordinator for every person with a RAIRD. Increased investment in research to improve diagnostic pathways.
-
Content ArticleIt’s nearly 30 years since the Food and Drug Administration (FDA) Modernization Act of 1997, when Congress instructed the US Health and Human Services (HHS) secretary to consult with the National Institutes of Health (NIH) director and the pharmaceutical industry to “review and develop guidance, as appropriate, on the inclusion of women and minorities in clinical trials." In this JAMA article, Rita Rubin examines concerns that the Trump administration’s dismantling of diversity, equity, and inclusion (DEI) efforts at the FDA and NIH will result in a reversion back to the days when new treatments were tested mainly in cisgender White men—and not even all shapes and sizes of them.
-
Content ArticleThis call for evidence is seeking the views of the public, as well as health and social care professionals, academics, employers and stakeholder organisations to inform a Men’s Health Strategy for England. This call for evidence closes at 11:59pm on 17 July 2025. This call for evidence will inform the development of a Men’s Health Strategy for England. It seeks the views of the public, as well as health and social care professionals, academics, employers and stakeholder organisations. We’re particularly interested in the lived experience of all those directly affected by men’s health issues. We know that men face unique challenges throughout their lives. Men are disproportionately affected by a number of health conditions, including cancer, cardiovascular disease and type 2 diabetes. Life expectancy data also shows that men live on average 4 years fewer than women (79.1 versus 83.0 years in England, respectively). Rather than a formal consultation on specific proposals, this call for evidence is a request for ideas and evidence that the government can build upon and discuss further with key interests. The call for evidence is only available to individuals aged 16 and over living in England and organisations that operate or provide services in England.
-
Content Article
Doctors for America Annual Report (2024)
Patient Safety Learning posted an article in International patient safety
Doctors for America advocates are involved in activities at the local, state and federal level. Doctors for America's 2024 Impact report showcase their achievements, challenges, and milestones improving access to affordable care, community health and prevention, and health justice and equity. -
News Article
Over 150,000 more people in England have ME than previously thought, study finds
Patient Safety Learning posted a news article in News
More than 150,000 more people in England are living with chronic fatigue syndrome (CFS) than was previously estimated, according to a study that highlights the “postcode lottery” of diagnosis. The research, published in the peer-reviewed journal BMC Public Health, involved researchers from the University of Edinburgh analysing NHS data from more than 62 million people in England to identify people who had been diagnosed with myalgic encephalomyelitis (ME)/chronic fatigue syndrome or post-viral fatigue syndrome. The data was examined by gender, age and ethnicity, and grouped by different areas of England. ME, also known as chronic fatigue, is a long-term condition with its main symptoms being extreme fatigue, brain fog, and issues with sleep. The condition’s key feature is known as post-exertional malaise, which is a delayed dramatic worsening of these symptoms following minor physical effort. There is currently no diagnostic test or cure for the disease and its causes are unknown. The findings showed that the lifetime prevalence of chronic fatigue for women and men in England may be as high as 0.92% of the population for women, and 0.25% for men. This is equivalent to about 404,000 people overall. The study also revealed stark ethnic inequalities relating to chronic fatigue diagnoses rates. White people with ME in England were almost five times more likely to be diagnosed with the condition than other ethnic groups. People from Black and Asian backgrounds were least likely to be diagnosed with the condition, with rates between 65% and 90% lower than their white counterparts. Read full story Source: The Guardian, 22 April 2025 Related reading on the hub: Exploring the barriers that impact access to NHS care for people with ME and Long Covid -
Content ArticlePeople with Myalgic Encephalomyelitis (ME/CFS; sometimes referred to as chronic fatigue syndrome) experience poor health-related quality of life and only rarely recover. ME/CFS has no curative treatment, and no single diagnostic test. Public health and policy decisions relevant to ME/CFS require knowledge of its prevalence and barriers to diagnosis. The research, published in BMC Public Health, analysed NHS data from more than 62 million people in England to identify people who had been diagnosed with myalgic encephalomyelitis (ME)/chronic fatigue syndrome or post-viral fatigue syndrome. The data was examined by gender, age and ethnicity, and grouped by different areas of England. The findings showed that the lifetime prevalence of chronic fatigue for women and men in England may be as high as 0.92% of the population for women, and 0.25% for men. This is equivalent to about 404,000 people overall.
.png.fe1a68a17335d8ef7091c3f048187c31.png)
