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Hospital criticised for ‘poor’ and ‘defensive’ investigations

A hospital trust has been criticised for its “poor” and “defensive” investigations into three deaths, which a coroner has linked to care by a single surgeon. 

Heidi Connor, senior coroner for Berkshire, investigated three deaths that occurred within three months at Royal Berkshire Foundation Trust. Each death followed surgery by consultant colorectal surgeon Daniel McGrath, whose “management” of each case was criticised by experts cited by the coroner. 

The coroner’s prevention of future deaths report about the death of Lorraine Parker, who died most recently of the three on 30 March 2024, was published last week and examined the trust’s death investigations processes across each of the three cases.

Ms Connor found the trust’s structured judgement reviews - which investigate care failings following a patient death - to be “at best, poor” and “at worst, defensive”, and warned the trust that its overall death investigation process “is not working well”. 

In addition, the coroner questioned “whether the trust has done enough to deal with the concerns about this particular surgeon” following the three deaths. 

There is no note of a restriction on Mr McGrath’s practice according to the General Medical Council register. However, Royal Berkshire told HSJ it has “worked closely with the coroner and the GMC” on measures to oversee his work. He has also been removed from surgical duties.

Looking at how the trust handled investigations into the three deaths, the coroner’s report noted the trust did not carry out a “detailed [Patient Safety Incident Response Framework] report”, which supports responses to patient safety incidents, into any of the deaths. 

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Source: HSJ, 1 May 2025

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Stark social divides in infectious disease admission rates in England, study finds

People 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.”

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Source: The Guardian, 2 May 2025

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NHSE reorganisation plans delayed

The first draft of a “high-level plan” for merging NHS England into the Department of Health and Social Care has been delayed, officials have acknowledged.

NHSE’s new leaders Sir Jim Mackey and Penny Dash told staff a month ago they wanted the restructure to move quickly.

They had hoped to deliver an initial picture of “what the new organisation might look like by the end of April”, but “this is taking slightly longer than we’d hoped”, according to a note to staff today.

The internal message said: “We expect to run an all staff briefing for NHS England and DHSC later in May [with an update].” 

HSJ understands NHSE and DHSC have also so far failed to recruit a national transition director to oversee the merger. They had hoped to quickly bring in a senior and experienced manager, but discussions with at least one potential recruit have fallen through.

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Source: HSJ, 1 May 2025

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‘Profound disappointment’ as ICBs are allowed to cut safety funding

A leading midwife and chair of government maternity inquiries has cited “significant concern about safety and wellbeing” following a substantial cut to nationally ring-fenced funding.

The concerns follow more than £90m of service development funding being cut from maternity allocations and transferred into core integrated care board budgets in 2025-26, as revealed by HSJ this week.

NHS England said “maternity care remains a top priority” and it was “misleading” to suggest otherwise. But leading maternity safety campaigners and royal colleges expressed concerns that funding will now be lost because of deficits and competing demands.

NHSE 2025-26 planning guidance says organisations must still “improve safety in maternity and neonatal services, delivering the key actions of the ‘three-year delivery plan’”, as well as “paying particular attention to challenged and fragile services, including maternity and neonatal”.

Donna Ockenden, a former senior midwife,  who chaired a government-commissioned review into maternity failings in Shropshire and is currently leading its inquiry into Nottingham Hospitals, said on social media site X: “Talking to colleagues across perinatal services, the sense of disappointment is profound, with everyone I’ve spoken to tonight expressing significant concern about safety and the wellbeing of children and mental health.”

Influential safety campaigner James Titcombe said the move was “pulling in the opposite direction to promises health and social care secretary Wes Streeting had made to families failed by poor maternity care”.

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Source: HSJ, 1 May 2025

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Popular weight loss drugs are sending Americans to the ER

While millions of Americans have turned to popular weight loss drugs to shed pounds in recent years, taking them isn’t without some risks.

Now, research led by the scientists at the Centers for Disease Control and Prevention has found that tens of thousands of Americans have ended up in the emergency room after taking semaglutide: the active ingredient in GLP-1 drugs, including drugmaker Novo Nordisk’s Ozempic and Wegovy. The findings may be an indicator that more patient education is necessary when it comes to taking the drugs.

“We found that it’s very infrequent that semaglutide leads to very serious adverse events that would land a patient in the hospital, but that they do occur,” Dr. Pieter Cohen, an associate professor of medicine at Harvard Medical School, told Health.

Using national surveillance data collected at dozens of hospitals, they estimated that semaglutide had been a contributing factor in nearly 25,000 emergency room visits from 2022 to 2023. More than 82 percent of those visits occurred in 2023, and the reason was usually gastrointestinal complications. Patients experienced nausea, vomiting, stomach pain, and diarrhoea.

Some people also came into emergency rooms with allergic reactions and hypoglycemia, which is also known as low blood sugar. A handful of patients were diagnosed with pancreatitis and just four were diagnosed with biliary disease, which impacts the gallbladder.

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Source: The Independent, 1 May 2025

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Warning cuts to STI clinics will make target to end HIV in England by 2030 ‘impossible’

Cuts to sexual health clinics could make eliminating new HIV cases in England by 2030 “impossible”, politicians have warned.

A report on HIV services in the capital by the London Assembly Health Committee showed there were 6,008 new case in England in 2023 – almost double the amount in 2019, when 3,859 people were diagnosed.

Although much of the increase can be attributed to new testing in emergency departments, the figures show that even when these are excluded there has still been an increase over that period. Before that time, new cases had been falling.

Labour’s Krupesh Hirani, chair of the committee, told The Independent it would be “impossible” to hit the 2030 targets if public health budgets, that support testing and public outreach programs to target at-risk groups, aren’t protected and continue to be cut.

He said: “The importance of testing with HIV is well documented and well evidenced and the obvious outcome and benefit of testing is to make sure we identify people who may be living with HIV but also it will help if people know what their status is in terms of what action they can take.”

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Source: The Independent, 30 April 2025

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Resident doctors condemn court ruling on gender

Resident doctors have criticised a recent Supreme Court ruling on gender, calling it scientifically unfounded and harmful to transgender and gender-diverse people.

Medics at the British Medical Association’s (BMA) resident doctors conference in London passed a motion which states that “attempting to impose a rigid binary has no basis in science or medicine”.

The court declared that the words “woman” and “sex” in the Equality Act refer to a biological woman and biological sex.

The Department of Health and Social Care said on Tuesday that “following the Supreme Court ruling, it is clear healthcare should be based on biology”.

However, the union’s resident doctors conference passed a motion which states: “This meeting condemns the Supreme Court ruling defining the term ‘woman’.”

The motion adds: “We recognise as doctors that sex and gender are complex and multifaceted aspects of the human condition and attempting to impose a rigid binary has no basis in science or medicine while being actively harmful to transgender and gender-diverse people.”

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Source: Medscape, 29 April 2025

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Once-daily pill for endometriosis approved for use on the NHS

A new at-home treatment option offers hope for women suffering from endometriosis.

The NHS has approved linzagolix, also known as Yselty, a once-daily pill designed to alleviate the debilitating symptoms of the condition.

Endometriosis affects an estimated 1.5 million women in the UK, causing tissue similar to the womb lining to grow elsewhere in the body. This can lead to a range of painful and disruptive symptoms, including severe pelvic pain, heavy periods, exhaustion, and fertility problems.

The current diagnostic process can be lengthy, with NICE reporting an average nine-year delay between the onset of symptoms and diagnosis.

Linzagolix offers a new approach to managing endometriosis by blocking specific hormones that contribute to the condition's symptoms.

This new oral medication is expected to benefit up to 1,000 women annually, providing a more convenient and accessible treatment option.

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Source: The Independent, 1 May 2025

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Lack of access to antibiotics is driving spread of superbugs, finds research

Less than 7% of people with severe drug-resistant infections in poorer countries get the antibiotics they need, a new study suggests, with researchers warning that not only is this causing suffering and deaths, but is also likely to be driving antimicrobial resistance (AMR).

With AMR forecast to cause 1.9m deaths a year by 2050, they are calling for urgent action, akin to the fight earlier this century to get HIV drugs to Africa’s virus hotspots.

“The stark reality is that most people with highly drug-resistant infections are not getting access to the antibiotics they need,” said Dr Jennifer Cohn, a senior author of the study.

AMR is a process whereby bacteria and other pathogens evolve resistance to treatments typically used against them. One driver is the overuse of antibiotics, with greater exposure to drugs offering bacteria more chances to learn how to evade them.

But a focus on overuse has meant access has been neglected, the experts warn.

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Source: The Guardian, 30 April 2025

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NHS managers must undergo ‘cultural intelligence training’ says watchdog

NHS managers should receive “cultural intelligence training” to tackle issues such as “the legacy of the British Empire” and improve the experience of overseas recruits, the National Guardian’s Office has recommended.

The NGO’s report examined the experience of international recruits to the NHS, with a particular focus on their willingness to speak out about concerns.

It found overseas staff face disproportionately higher scrutiny, are given limited support and are often penalised before they have had time to settle into their role. International recruits often felt “invisible”, the report concluded.

The report states the responsibility for adapting, including the implications for speaking up, was often on overseas-trained staff and “a lack of cultural intelligence” was a “repeated theme”, according to the body which leads, trains and supports a network of Freedom to Speak Up Guardians in England. It said this highlighted the need for better understanding and outreach by employers.

The NGO calls for “a meaningful approach to cultural competence” which goes “beyond superficial gestures like cultural exchange days”.

It stated that: “A two-way process of cultural intelligence is needed, where organisations actively seek to understand and adapt to the experiences and perspectives of overseas-trained workers.”

Most FTSU Guardians said training on speaking up was available in their organisations, however, only 16.9% surveyed said their organisations provided training to managers on how to support overseas-trained workers. More than half said they did not know if any such training existed.

The report recommends NHS England includes “cultural intelligence training” for NHS staff, managers and leaders as part of its Leadership and Management Framework programme by April 2026.

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Source: HSJ, 1 May 2025

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Patient suffered diagnosis delay after junior doctor missed 'red flags' in A&E

A patient suffering from a perforated bowel had their diagnosis delayed after a junior doctor missed “red flags” during an assessment in A&E.

After arriving at the emergency department of an NHS Forth Valley hospital, the patient was initially assessed by a junior doctor who ordered various tests and investigations.

They were later moved to the acute assessment unit and diagnosed with a perforated bowel. The patient developed sepsis after undergoing emergency surgery.

The patient’s child complained to the Scottish Public Services Ombudsman (SPSO) about their parent’s treatment.

Specifically, they complained about the delay in identifying their parent’s condition, which they believe led to a worse outcome.

NHS Forth Valley acknowledged that a more senior doctor may have identified the cause quicker, but that the care provided was reasonable, and that the complaint had led to learning and ongoing development.

In putting together their report, the SPSO took independent advice from an emergency medicine consultant.

It found that there were “a number of red flags” when the patient was admitted and that it did “not appear” they had been reviewed by a senior clinician.

Issues were also found in the patient’s documentation; no intimate examination was recorded, and there was a “lack” of documentation around the interpretation of an X-ray.

Overall, the report concluded that the initial assessment delayed diagnosis of the perforated bowel and was likely to have had a “significant effect” on the patient’s outcome.

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Source: STV News, 29 April 2025

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Suspects detained by police denied essential insulin, cancer and epilepsy drugs, damning report claims

Drugs for diabetes, cancer, epilepsy and mental illness are being denied to people held in police cells after they are arrested, according to a shocking new report.

Suspects detained in custody suites are even having emergency care withheld as a “form of punishment”, according to the study shared exclusively with The Independent.

The report has sparked calls for healthcare for those in custody to be brought under the remit of the NHS, amid claims that basic standards are not being met by the private companies that currently provide it.

Deborah Coles, chief executive of the charity Inquest, which represents families whose loved ones have died in custody, said the report is “deeply concerning” and urged ministers to respond before the situation results in “catastrophe”.

“This is about the denial of life-protecting medication,” she said. “There is the ever-present risk of death and harm. It shines a light on the standards of healthcare in police custody suites.

“This report lays bare many of the concerns Inquest has had for decades around the standards of care afforded to detainees in police custody. The reality of this, denying people medication that is life-protecting, does hold the risk of death and serious harm.”

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Source: The Independent, 30 April 2025

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Government accused of misleading claim on health hubs

Most integrated care systems lack a women’s health hub offering full services — contrary to government claims — according to research seen by HSJ.

In spring last year, the government and NHS England said all systems were expected to have at least one operational women’s health hub in place by the end of December 2024. They were required to provide clinical support and consultations/triaging in eight “core” services.

Health minister Karin Smyth told Parliament at the start of this year the objective had been met in 39 out of 42 integrated care systems.

But research by the Menstrual Health Coalition found only 14 integrated care boards had established hubs offering all eight core services, as required. The services are: menstrual problems assessment and treatment; menopause assessment and treatment; contraceptive counselling and provision of all methods; preconception care; breast pain assessment; pessary fitting and removal; cervical screening; and screening and treatment for sexually transmitted infections and HIV.

The coalition, an alliance of patient and advocate groups, collected information from all ICBs between October and December.

Its co-chair Anne Connolly, a GP specialising in gynaecology, said: “Our findings challenge the narrative that women’s health hubs have been successfully implemented nationwide.

“While figures suggest that hubs are in place, the reality is that many do not provide the full range of services women were promised… There is now an urgent need for transparency alongside the rollout of women’s health services, particularly as the current funding is short term and lacks the necessary commitment to future-proofing these services.”

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Source: HSJ, 30 April 2025

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Poor mental health a 'common phenomenon' in healthcare staff

A charity set up to help doctors and healthcare professionals with their mental health in Great Britain has extended its services to Northern Ireland.

Doctors In Distress was established by Amandip Sidhu in 2019, when his consultant cardiologist brother took his own life due to "overwhelming work pressure and burnout".

Mr Sidhu said he came to learn that this is "a common phenomenon" within healthcare professions.

Figures, published by the British Medical Association (BMA) NI show that 62% of doctors in Northern Ireland report "higher than normal levels fatigue or exhaustion".

Speaking to the BBC's Good Morning Ulster programme on Wednesday, Dr Alan Stout from the BMA said the figures show that the problem is "more acute in Northern Ireland".

Mr Stout welcomed the charity's services to Northern Ireland, but said "we need to go further", and "a dedicated health service for doctors in Northern Ireland" is required.

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Source: BBC News, 30 April 2025

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GMC approves 36 courses to teach more than 1,000 NHS physician associates

More than 1,000 physician associates (PAs) could begin their careers in the NHS every year after regulators approved dozens of courses to teach them.

The General Medical Council (GMC) said it had given 36 courses formal approval to teach PAs and anaesthesia associates (AAs).

Overall, these courses had capacity for up to 1,059 PAs and 42 AAs to qualify each year.

The GMC said approving training courses would mean that “patients, employers and colleagues can be assured that PAs and AAs have the required knowledge and skills to practise safely once they qualify”.

Prof Colin Melville, the GMC’s medical director and director of education and standards, said: “This is an important milestone in the regulation of PAs and AAs and will provide assurance, now and in the future, that those who qualify in these roles have the appropriate skills and knowledge that patients rightly expect and deserve.

“As a regulator, patient safety is paramount, and we have a robust quality assurance process for PA and AA courses, as we do for medical schools. We have been engaging with course providers for several years already, and we only grant approval where they meet our high standards.”

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Source: The Guardian, 30 April 2025

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NHSE budget cuts hit maternity, children and prevention

Maternity, prevention, mental health, and children’s services are the national budgets seeing the biggest cuts after government and NHS England decided to slash ringfenced allocations, HSJ analysis reveals.

The move has seen national “services development funding” (SDF) – money earmarked for national initiatives – slashed from £4.3bn in 2024-25 to just £500m (so far confirmed) for 2025-26. This year’s SDF is expected to grow as more funding is decided in coming months, but to nowhere near the levels seen in recent years.

Mental health has lost £1bn of ringfenced funding, although ICBs are still expected to increase spend in line with total spending growth under the mental health investment standard. 

Lost SDF bundles in mental health include £215m for children and young people (including eating disorders), £275m for mental health support teams in schools, and £540m split between adult community and adult crisis services – all of which have been moved to ICB allocations.

Maternity services received £95m overall in 2024-25 – which is reduced to just £2m this year, with three separate pots cut. Notably, this includes £22m for “Ockenden II workforce”. Funding following Donna Ockenden’s report into maternity failings at Shrewsbury and Telford Hospital Trust was largely earmarked for workforce expansions, and safety improvement work.

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Source: HSJ, 29 April 2025

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Coroner expresses concerns over NHS menopause care after death of teacher

A coroner has expressed wide-ranging concerns about how the NHS cares for women during menopause after the death of a 54-year-old teacher who killed herself after a decline in her mental health.

Jacqueline Anne Potter took her own life during overnight leave from an acute psychiatric unit in Somerset where she was being looked after because of mental health issues exacerbated by menopause.

In a prevention of future deaths report, senior coroner Samantha Marsh said she was concerned about the “lack of importance” given to menopausal care available on the NHS.

She said: “Women who are not fortunate enough to be able to access private clinics and facilities may not be able to access the services and expertise they need at a very crucial transitional phase in their lives. Menopause is not a lifestyle choice, it is an unavoidable part of a woman’s natural biological cycle.”

The coroner said: “Given her presentation it would appear that her underlying anxiety had been slowly building; possibly since 2008 but much more so since 2017.”

She started HRT but in September 2022 declined again and the following month agreed to a voluntary admission to an acute psychiatric unit after she was found wandering in traffic. She was detained there under the Mental Health Act.

Last month an inquest jury concluded that Potter’s death was suicide and said menopause “contributed to her mental health decline and exacerbated her underlying anxiety”. The jury also said that her family “did not receive appropriate information to assist them in keeping Anne safe for an overnight stay”.

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Source: The Guardian, 29 April 2025

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One in ten patient safety incidents in hospitals due to poor communication

Patients’ lives are being put at risk by poor communication from healthcare professionals in hospitals worldwide, according to new research.

The analysis included 46 studies, published between 2013 and 2024, involving over 67,000 patients across Europe, North and South America, Asia and Australia. And the findings are alarming. The authors discovered that poor communication was the sole cause of patient-safety incidents in over one in ten cases and contributed to causing incidents in one in four cases.

These aren’t just statistics, they represent real people harmed by preventable errors.

In one documented case, a doctor accidentally shut off a patient’s Amiodarone drip (a drug to treat heart arrhythmias) while silencing a beeping pump. The doctor failed to tell the nurse, and the patient’s heart rate spiked dangerously.

In another example, a patient died after a nurse failed to tell a surgeon that the patient was experiencing abdominal pains following surgery and had a low red blood cell count – clear indicators of internal bleeding. The patient later died from a haemorrhage that could have been prevented with adequate communication.

These findings confirm what many healthcare professionals have long suspected: communication breakdowns directly threaten patient safety. What’s particularly concerning is that these incidents cut across different healthcare systems worldwide.

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Source: The Conversation. 28 April 2025

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Urgent care worse than pre-pandemic, think tank says

A leading health think tank says urgent and emergency care in England is performing "far worse" than before the pandemic.

The Health Foundation argues that the NHS was "in distress" this winter with A&E waiting times reaching a record high.

The group says it would be wrong just to blame relatively high levels of flu.

The government is due to publish an urgent and emergency care plan soon. The Department for Health and Social Care said that hospitals were "feeling the strain" but that it was taking "decisive action" to prevent winter crises.

The Health Foundation report on the recent winter says that the number of people waiting 12 hours or more in A&E after a decision to admit to a ward was the highest since modern records began. It topped 60,000 in January, or 11% of emergency admissions.

The report says that a familiar problem remains as acute as ever – delays discharging patients from hospital who are fit to leave. This, it says, made bottlenecks worse in A&E and for ambulances trying to hand over patients and that delays for those handovers were worse than in previous winters.

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Source: BBC News, 28 April 2025

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Scientists fear Trump administration cuts to NIH could impact the health of Americans for generations

Earlier this month, a Trump administration plan to cut the National Institutes of Health budget by more than 40% was leaked to the press. 

The preliminary budget sent shockwaves through the nation's health agency but also, the wider scientific community that relies on the NIH to fund research.

Since January, 1,300 NIH employees have been fired and more than $2 billion in research grants cancelled.

It's all part of the administration's effort to shrink the federal government, an effort led by the Department of Government Efficiency (DOGE).

Dr. Francis Collins, the long-time director of the agency who left the NIH said "When you're talking about medical research, when you're talking about people's lives, when you're talking about clinical trials for Alzheimer's disease or cancer that may take 3 or 4 years, you can't just go in and decide, 'I'm going to shut those down and maybe I'll try something else.' Those are people's lives at risk." 

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Source: CBS News, 27 April 2025

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Prescription charges frozen in England

Prescription charges in England will be frozen this year – for the first time since 2022.

The charge for a single item will remain at £9.90 in 2025-26, the government has announced.

Three-month and annual prescriptions prepayment certificates will also be frozen and existing exemptions will continue. Charges only apply in England as prescriptions are free in the rest of the UK.

Nearly nine in 10 prescriptions in England are already dispensed free of charge, with children, over 60s, pregnant women, people with certain medical conditions and those on lower incomes exempt from paying.

Rachel Power, chief executive of Patients Association which campaigns for improvements in health and social care, said freezing the charges was a "positive step".

But she warned that it did little to tackle the "deep inequalities" in what she described as an outdated system.

She said the medical exemption criteria had remained virtually unchanged since the late 1960s, with nearly three million people in England living with long-term conditions not eligible for an exemption because they were not recognised 60 years ago or people rarely survived into adulthood.

Conditions which are not currently on the medical exemption list include Parkinson's disease, cystic fibrosis and motor neurone disease.

"We urge the government to go further - to commit to a full review of the medical exemption list and prescription charges," Ms Power added.

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Source: BBC News, 28 April 2025

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Mental health inquiry chair vows to 'seek out' truth

The chair of England's first public inquiry into mental health deaths vowed to "seek out the truth" - despite difficulties getting documents from the NHS.

The first key evidence sessions in the Lampard Inquiry - examining more than 2,000 deaths at NHS inpatient units in Essex between 2000 and 2023 - have begun in London.

Baroness Lampard said although the hearing was "breaking new ground", 21 legal notices had been issued to NHS organisations to force them to submit evidence.

"We will seek out the truth," she said, adding she would not hesitate to use her legal powers "to the fullest extent necessary to compel the production of evidence where it's not provided".

Counsel to the inquiry, Nicholas Griffin KC, said: "We have been unimpressed with a significant number of requests for deadline extensions... and the number of occasions where providers have not given the material expressly asked for."

He said there were problems with the condition of paper records, "missing documents" and providers, including private ones, sending information late.

Mr Griffin said it was a criminal offence to suppress, conceal, alter, or destroy relevant evidence and said providers should be properly resourced to respond to the inquiry.

He said the inquiry should not be delayed because of it.

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Source: BBC News, 28 April 2025

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Male workers should be able to carry out mammograms, experts say

Male health workers should be allowed to perform breast screening examinations to help relieve staff shortages, say experts.

X-rays called mammograms are offered to women between the age of 50 and 71 every three years to check for signs of cancer, but can currently only be performed by female staff.

The Society of Radiographers (SoR) has called for a change in policy due to "critical" staff shortages among radiographers who specialise in this area.

Sally Reed, 67, who had two mastectomies after mammograms revealed breast cancer, told the BBC that "if something can save your life you should go for it" - whether it's administered by a woman or man.

But Sally also admits women who already don't want to go for breast screening "would definitely be turned off by a man".

According to radiographers, the vacancy rate among mammographers who specialise in breast exams is 17.5%.

Changes to staffing were being discussed at the annual SoR conference, with discussions also taking place over whether transgender men should be included in the NHS breast screening programme.

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Source: BBC News, 29 April 2025

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NHS leaving some patients with rare diseases to ‘fall through the cracks’, damning report finds

The 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”.

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Source: The Independent, 29 April 2025

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We’re ‘fundamental’ to future ICBs, say pharmacists

Medicines management teams should not be targeted by imminent cost cuts and must remain a “fundamental component” of the new model for integrated care boards, NHS England has been told.

An open letter sent on behalf of ICB chief pharmacists to the new NHS England leadership last week stressed the need to keep tight control of the service’s £20bn medicines spend. ICBs have been told they must cut their running costs in half by October, and there is considerable debate at local and national level over where the axe should fall. 

The letter said: “Prescribing is one of the most volatile expenditures in the NHS, and we are collectively keen to work with you to maintain grip on the management of this precious resource.”

The letter’s authors claim ICB medicines management teams made savings worth £500m in 2024-25. Reducing spend on medicines - which is the second-largest area of NHS expenditure after staffing - features prominently in ICB cost improvement plans across the country. 

The letter continues: “We recognise that we need to continue to transform how the system and individual people use medicines effectively (including alternatives to prescribing).” This requires, it suggested, “professional pharmacy leadership in all sectors” to “navigate the conflicting complexities of supporting financial balance”.

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Source: HSJ, 25 April 2025

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