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UK's long Covid patients facing postcode lottery for support

Long Covid patients have voiced growing frustration at a “postcode lottery” in clinical support for debilitating symptoms, with some areas of the UK offering no specialist clinics more than a year after coronavirus took hold.

Other sufferers said they were disappointed by long Covid clinics investigating certain symptoms only, with no comprehensive treatment plan.

Official figures suggest there are almost 700,000 Britons with Covid symptoms lasting over three months. In October, NHS England announced more than £10m for a network of clinics bringing together doctors, nurses, therapists and other NHS staff to conduct physical and psychological assessments and recommend treatments for long Covid patients.

Additional local funding would also be available to help establish a clinic in every area, the NHS England chief executive, Simon Stevens, said. By December, 69 clinics had been set up in England with a further 12 sites earmarked to launch in January.

But Louise Barnes, founder of the Post Acute Covid Syndrome 19 (Pacs19) patient advocacy group, said a survey of 200 British members revealed about 90% had not been able to access a clinic because there wasn’t one available, their GP could not refer them or they were declined without explanation. Others were disappointed by the type of services on offer.

Barnes said: “Patients in the UK have waited going on a year to get support for the multitude of symptoms they’ve been experiencing. To finally think you are going to get referred to a clinic but your GP tells you they don’t have any information, or you get there to find it’s a ‘respiratory-only clinic’ or only staffed by physiotherapists leaves them feeling despondent. For the most part, sadly, patients are coming away massively feeling let down and with no viable treatment plan offered – even a rudimentary one, whilst a treatment is found."

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Source: The Guardian, 6 April 2021

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Chronic pain sufferers should take exercise, not analgesics, says NICE

People suffering from chronic pain that has no known cause should not be prescribed painkillers, the medicines watchdog has announced, recommending such patients be offered exercise, talking therapies and acupuncture instead.

In a major change of pain treatment policy, the National Institute for health and Care Excellence (NICE) say that in future, doctors should advise sufferers to use physical and psychological therapies rather than analgesics to manage their pain.

Painkillers such as aspirin 'do more harm than good' for chronic primary pain

Medical teams can also consider prescribing antidepressants, the government health advisers suggest.

NICE’s new guidance potentially affects the way many hundreds of thousands of people in England and Wales tackle their condition because between 1% and 6% of the population of England is estimated to have chronic primary pain.

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Source: The Guardian, 7 April 2021

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One in three survivors of severe Covid diagnosed with mental health condition

One in three people who were severely ill with coronavirus were subsequently diagnosed with a neurological or psychiatric condition within six months of infection, a study has found.

The observational research, which is the largest of its kind, used electronic health records of 236,379 patients mostly from the US and found 34% experienced mental health and neurological conditions afterwards. The most common being anxiety, with 17% of people developing this.

Experts warned that healthcare systems need to be resourced to deal with patients affected by this, which could be “substantial” given the scale of the pandemic. They anticipate that the impact could be felt on health services for many years.

Neurological diagnoses such as stroke and dementia were rarer, but not uncommon in those who had been seriously ill during infection. Of those who had been admitted to intensive care, 7% had a stroke and almost 2% were diagnosed with dementia.

The study, which was published in the Lancet Psychiatry, found that these diagnoses were more common in COVID-19 patients than among those who had the flu or respiratory tract infections over the same time period.

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Source: The Guardian, 7 April 2021

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Dozens of patients seen by independent provider suffered ‘moderate or severe’ harm

Nearly 30 patients suffered severe or moderate harm due to quality issues with ultrasounds carried out by an independent provider, a review has found. 

Scans of 1,800 patients carried out by two sonographers employed by Bestcare Diagnostics were examined as part of a clinical harm review initiated by Coastal West Sussex Clinical Commissioning Group in 2019.

Papers for next week’s governing body meeting of West Sussex CCG — which has absorbed Coastal West Sussex CCG — reveal the review found 29 cases of severe or moderate harm. 

According to the NHS’ National Recording and Learning System, moderate harm is that where a patient needs further treatment or procedures but the harm is short-term. Severe harm results in permanent or long-term harm. Both require NHS bodies to exercise the duty of candour.

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Source: HSJ, 6 April 2021

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Consultant ‘cliques’ and ‘unacceptable behaviours’ put patients at risk

Deep-rooted relationship problems between consultants in a major trust’s neurosurgery department distracted from patient care, according to a review leaked to HSJ.

A review by the Royal College of Surgeons (RCS) into neurosurgery services at University Hospitals Birmingham FT last year found serious concerns over consultant “cliques” and relationship problems across the department.

It comes as a new review has been launched into the care of 23 patients in the deep brain stimulation service, which is a sub-speciality in the department.

According to the RCS report, which was completed in May last year, there have been wide-ranging problems within the department for several years.

The report said: “Poor team working and inter-relational difficulties, which had been deep-rooted and recognised to have existed for some time, have had the potential to compromise patient care and will be likely to continue to do so if these issues remain unresolved.”

It suggested some consultant neurosurgeons had prioritised their personal or professional differences over patient care, with the relationship issues being “amplified” within the wider surgical workforce.

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Source: HSJ, 7 April 2021

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Russells Hall Hospital: NHS trust charged over patients' deaths

An NHS trust has been charged over the deaths of two patients.

The Care Quality Commission alleges Natalie Billingham, 33, and Kaysie-Jane Bland were exposed to "significant risk of avoidable harm" at Dudley's Russells Hall Hospital.

The regulator has brought the charges against Dudley Group NHS Foundation Trust over two alleged breaches of the Health and Social Care Act.

This relates to the trust's duty to ensure safe care and treatment.

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Source: BBC News, 6 April 2021

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People with eating disorders in England denied help as 'BMI not low enough'

Growing numbers of women and men in England with eating disorders are being denied support because they are not considered to be thin enough to warrant it, a leading psychiatrist and other experts have warned in a briefing shared with ministers.

Against the backdrop of a fourfold rise in people admitted to hospital with eating disorders during the Covid pandemic, doctors said body mass index (BMI) was too often used as a blunt measure to decide whether someone should get treatment.

In some cases, women have not received an eating disorder diagnosis despite their periods stopping due to overexercising or restrictive eating.

BMI uses height and weight to calculate a healthy weight score. A normal body weight is considered to be between 18.5 and 24.9, and some doctors consider anything below this a signifier of an eating disorder.

Dr Agnes Ayton, the chair of the Royal College of Psychiatrists eating disorders faculty, and the mental health campaigner Hope Virgo shared a briefing paper with the Department of Health and Social Care (DHSC) urging funding to meet demand and “as a direct result of an increase in the number and severity” of patients during the pandemic. The paper, seen by the Guardian, said there had been a significant increase in eating disorders among ethnic minorities and men.

Concern has been raised about “a state of emergency” for eating disorders, the briefing paper said. Hospital admissions have seen a fourfold increase in the last year without extra investment in specialist eating disorder inpatient services during this time, it added.

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Source: The Guardian, 5 April 2021

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'A truly frightening backlog': ex-NHS chief warns of delays in vital care

Patients could be waiting as much as two years for vital operations by the time of the next election due to a “truly frightening” backlog of care caused by the pandemic, the NHS’s former boss has said.

Lengthening delays in getting treatment in England are will become a major political problem for Boris Johnson and pose a risk to patients’ health, Sir David Nicholson told the Guardian.

“The backlog is truly frightening. We can very easily get to the next election with people waiting over two years. It’s easy to do that,” said Nicholson, citing an explosion in the number of people waiting at least a year since the start of the COVID-19 crisis.

“The whole issue of access [to care] is a greater threat to the NHS than privatisation because poor access undermines confidence amongst those people who fund the service – taxpayers,” he added.

The widespread suspension of normal NHS diagnostic tests and surgery during the pandemic as hospitals prioritised Covid care has left the service in England with a record 4.59 million people waiting for hospital treatment.

That number is set to rise to what the NHS Confederation believes could be as much as 6.9m cases by the end of the year as people on a “hidden waiting list” – who put off seeking help after discovering symptoms of illness – finally visit a GP.

According to the most recent figures, the number of people who have been waiting for at least a year has rocketed from 1,613 before the pandemic struck to 304,044.

Under the NHS Constitution, 92% of people waiting are meant to be treated within 18 weeks. However, a third of the 4.59 million people have already waited longer than that.

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Source: The Guardian, 2 April 2021

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Mental health: More help for new and expectant mothers in England

Mental health "hubs" for new, expectant or bereaved mothers are to be set up around England.

The 26 sites, due to be opened by next April, will offer physical health checks and psychological therapy in one building. NHS England said these centres would provide treatment for about 6,000 new parents in the first year.

Five years ago, 40% of areas in England had no dedicated maternal mental health services.

Things have improved since then with some specialist services available in each of the 44 local NHS areas in England. But in the NHS's Long Term Plan, published in 2019, the health service pledged to offer more "evidence-based" support, including to partners and families through these hubs or "outreach clinics".

The NHS hopes to offer services to people with moderate-to-severe difficulties, whereas earlier investment focused on the most acutely unwell mothers.

These clinics will "integrate maternity, reproductive health and psychological therapy for women experiencing mental health difficulties directly arising from, or related to, the maternity experience," NHS England said.

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Source: 5 April 2021

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Strain on NHS as tens of thousands of staff suffer long Covid

Intense pressures on the already overstretched NHS are being exacerbated by the tens of thousands of health staff who are sick with Long Covid, doctors and hospital bosses say.

At least 122,000 NHS personnel have the condition, the Office for National Statistics disclosed in a detailed report that showed 1.1 million people in the UK were affected by the condition. That is more than any other occupational group and ahead of teachers, of whom 114,000 have it.

Patient care is being hit because many of those struggling with Long Covid are only able to work part-time, are too unwell to perform their usual duties, or often need time off because they are in pain, exhausted or have “brain fog”.

“Ongoing illness can have a devastating impact on individual doctors, both physically and by leaving them unable to work. Furthermore, it puts a huge strain on the health service, which was already vastly understaffed before the pandemic hit,” said Dr Helena McKeown, the workforce lead at the British Medical Association, which represents doctors.

“With around 30,000 sickness absences currently linked to Covid in the NHS in England, we cannot afford to let any more staff become ill. Simply put, if they are off sick, they’re unable to provide care and patients will not get the care and treatment they need.

“In the longer term, if more staff face ongoing illness from past COVID-19 infection, the implications for overall workforce numbers will be disastrous.”

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Source: The Guardian, 3 April 2021

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Ban on care home residents taking trips faces legal challenge

Campaigners have started legal action against the government over guidance that bans care home residents in England aged 65 and over from taking trips outside the home.

John's Campaign, of residents and their loved ones, says the ban is unlawful. They are also challenging the requirement for residents to self-isolate for 14 days after such visits.

The government said its guidance provides a "range of opportunities" for visitors to spend time with loved ones.

Nearly all residents have now had at least one dose of the vaccine, and care homes have been cautiously reopening, allowing indoor visits with designated family or friends.

But the government guidance, updated on 8 March, says trips to see family or friends "should only be considered" for under-65s while national Covid restrictions apply because they increase the risk of bringing Covid into a home.

Visits out for residents, whatever their age, "should be supported in exceptional circumstances such as a visit to a friend or relative at the end of their life", it adds - but on returning to the home, the resident must self-isolate for two weeks.

The legal letter sent to the Department of Health and Social Care by John's Campaign says the decision whether someone can go on a visit outside a care home should be based on individual risk assessments.

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Source: BBC News, 2 April 2021

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Maternity services at risk as midwives plan to quit over pandemic stress

Maternity services are at risk because demoralised midwives are planning to quit the NHS, healthcare leaders have warned.

A new report, carried out by the Institute for Public Policy Research, suggests 8,000 midwives may depart due to the “unprecedented pressure” of the coronavirus pandemic.

Researchers, who surveyed about 1,000 healthcare professionals from around the country in mid-February, discovered that two-thirds reported being mentally exhausted once a week or more.

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Source: The Independent, 31 March 2021

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Mysterious ailment, mysterious relief: Vaccines help some COVID long-haulers

An estimated 10% to 30% of people who get COVID-19 suffer from lingering symptoms of the disease, or what's known as "long COVID."

Judy Dodd, who lives in New York City, is one of them. She spent nearly a year plagued by headaches, shortness of breath, extreme fatigue and problems with smell, among other symptoms.

She says she worried that this "slog through life" was going to be her new normal.

Everything changed after she got her COVID-19 vaccine.

"I was like a new person, it was the craziest thing ever," says Dodd, referring to how many of her health problems subsided significantly after her second shot.

And she's not alone. As the U.S. pushes to get people vaccinated, a curious benefit is emerging for those with this post-illness syndrome: Their symptoms are easing and, in some cases, fully resolving after they get vaccinated.

Judy Dodd suffered lingering symptoms of COVID-19 for nearly a year, until she got her vaccine.

It's the latest clue in the immunological puzzle of long COVID, a still poorly understood condition that leaves some who get infected with wide-ranging symptoms months after the initial illness.

The notion that a vaccine aimed at preventing the disease may also be a treatment has sparked optimism among patients, and scientists who study the post-illness syndrome are taking a close look at these stories.

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Source: NPR, 31 March 2021

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Covid: Fewer than a quarter with symptoms request test, study finds

Fewer than a quarter of people who develop coronavirus symptoms request a test, new research has suggested.

The study into adherence to the UK’s test, trace, and isolate system also found only half of those who had symptoms were fully self-isolating towards the end of January, when the latest data is from.

Experts, including from the Public Health England (PHE) behavioural science team at Porton Down in Wiltshire, found that only half of people could identify the main coronavirus symptoms, which include a cough, high temperature and loss of taste or smell.

The research – based on responses from more than 53,800 UK adults to surveys across the pandemic – said: “Adherence to each stage of test, trace, and isolate is low but improving slowly.”

The most common reasons for not requesting a test were thinking the symptoms were not Covid-related, symptoms had improved or were mild and not having had contact with anyone with Covid-19.

Men, younger people and those with young children were less likely to self-isolate, as were those from more working-class backgrounds, people experiencing greater financial hardship, and those working in key sectors.

Common reasons for not fully self-isolating included to go to the shops or work, for a medical need other than Covid-19, to care for a vulnerable person, to exercise or meet others, or because symptoms were only mild or got better.

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Source: The Independent, 1 April 2021

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Contaminated blood inquiry: Some patients used as 'guinea pigs'

A public inquiry into the infected blood scandal has been told some patients were used as "guinea pigs" at Belfast's Royal Victoria Hospital.

The inquiry is looking at how haemophilia patients across the UK were treated with Hepatitis C infected blood or HIV in the 1970s and 1980s.

Among the correspondence presented to the inquiry this week was a letter, dated 1988, sent by Dr Elizabeth E Mayne, consultant/director at the Department of Haematology in the Royal Victoria Hospital, to Professor Ludlam at the Royal Infirmary in Scotland.

The letter was part of discussions about a potential switch between an NHS product and a commercial product, Profilate Factor 8.

Dr Mayne explained that "complications may arise with this product or indeed a safer product may become available".

She added: "I am happy for us to try this arrangement as long as the treatment of the children here and the small number of other patients is safeguarded."

She concluded "It would be interesting to see the reactions of the patients to this change over and to see if the number of units consumed is reduced."

After the letter was read into the record of the inquiry, the chairman, Sir Brian Langstaff, said: "There is also the implicit suggestion there that the patients will not have been asked in advance.

"It is going to be given to them and they wait to see what the reaction is."

Counsel to the inquiry, Jenni Richards QC, replied "Yes, there doesn't appear to have been an element of choice."

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Source: The Independent, 1 April 2021

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Long Covid: More than 1 million experiencing symptoms in UK

More than one million people in the UK are suffering from signs of Long Covid, the Office for National Statistics has said.

This is a significant increase in previous estimates of persistent and debilitating symptoms and follows the January surge in coronavirus infections across the UK.

The ONS said a total of 1.1 million people in the UK reported experiencing Long Covid symptoms lasting beyond four weeks after infection with COVID-19 that were not explained any something else.

Long Covid can include chronic fatigue, shortness of breath, so called ‘brain fog’ as well as serious organ damage to the kidneys, heart and lungs. The ONS found the symptoms were impacting on the day to day lives of 674,000 people, with almost 200,000 people reporting their ability to carry out normal activities had been severely limited.

Of those reporting symptoms, almost 700,000 reported having a Covid infection in the previous three months, but 70,000 said it was over a year since their infection.

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Source: The Independent, 1 April 2021

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Supporting women injured by mesh

A bill has been proposed to enable women who paid for mesh removal surgery to be refunded.

Subject to the outcome of the Scottish Parliament election, new legislation will be introduced to allow the Scottish Government to meet the travel, medical and other reasonable expenses of those who had mesh removal surgery outwith NHS Scotland.  Currently the law does not allow for such payments to be made from public funds.

NHS Scotland is also inviting tenders to allow suitably qualified surgeons to perform free mesh removal, where this surgery is clinically appropriate and where patients wish it to take place outside of NHS Scotland. 

Health Secretary Jeane Freeman said: “The Scottish Government halted the implantation of transvaginal mesh in 2018, and is committed to keeping this halt in place."

“We absolutely recognise the serious distress which may have led to women using their own funds to pay for private surgery. As the Scottish Government does not currently have the legal power to refund these past costs we propose introducing legislation in the next parliament, subject to the outcome of the election."

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Source: Scottish Government, 24 March 2021

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PRSB to develop a new nursing standard

Nurses are a crucial part of care across a wide range of sectors, with patients and other professionals often reliant on their expertise. That’s why the Professional Records Standard Body (PRSB) has been asked to develop a new nursing standard by NHSx for use across all the different health and social care settings. 

The standard aims to improve quality and safety of care in key nurse-led areas, including care planning. It will reflect best practice and standardise documentation across different nursing settings, to free nurses and give them more time to care. For example, it will standardise information that a district nurse in a care home setting can access and share in the same way as a mental health or hospital nurse, with a focus on the person’s overall wellbeing. 

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Source: PRSB, 30 March 2021

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Hospitals and labs told to prioritise Covid testing for mental health patients

Coronavirus tests for patients in mental health hospitals should be couriered to testing labs and prioritised for results to prevent patients being forced to self-isolate for longer than is necessary, according to new guidance.

NHS England has told mental health hospitals they need to use dedicated couriers for urgent swabs and tests should be specifically labelled for mental health patients so they can be turned around faster.

Health bosses are worried thousands of patients in mental health wards could deteriorate ifare forced to self-isolate in their rooms for longer periods.

More than 14,000 patients were being detained in hospital under the Mental Health Act in January 2021, with patients needing to be tested on admission to wards and if they show symptoms.

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Source: The Independent, 30 March 2021

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Stop Cancer at Work Campaign calls on the European Commission to work with the Parliament and Council to legislate now to prevent workplace cancer

The European Parliament voted by 95% to support the Stop Cancer at Work campaign’s demands for:

  • Legislative action - not just guidance – now, not next year or the year after. 
  • Specifically, the European Commission should include hazardous drugs (hazardous medicinal products or HMPs) in Annex I, and reprotoxins, in the Carcinogens and Mutagens Directive (CMD).
  • This legislative action should be supported by new guidance to ensure that effective prevention measures are put in place and implemented across Europe.

The Stop Cancer at Work Campaign believes that the European Commission should now get on with including hazardous drugs, reprotoxins and other improvements to the Carcinogens and Mutagens Directive (CMD) passed by the Parliament without any further delay. Legislation to include hazardous drugs is not only supported by the Parliament but also the majority of the Member States that make up the European Council.

As a coalition of essential workers, professionals and cancer patients, the Campaign is demanding action from policymakers and political leaders to stop further preventable deaths. The European Commission’s own research shows that at least 40% of cancer cases are avoidable - but we have yet to see meaningful change and very little on preventing workplace cancer in Europe’s Beating Cancer Plan.

The scale of the problem is vast: it is estimated that 100,000 new deaths each year of work related cancer from occupational exposure to hazardous substances, the biggest killer in the EU.  The European Commission’s own research shows that at least 40% of cancer cases are avoidable.  The protective equipment, safer technology and proper practices are available and not costly but employers are unlikely to universally introduce them unless they are required to do so.

The Commission has still not published an independent report which was completed last year and supports legislation to include hazardous drugs (HMPs), in the current revision of the CMD.  This would be in combination with, but not replaced by, new non- legislative EU guidance and a regular review of a list of HMPs based on an agreed definition. The independent report is based on a year-long consultation with Member States, experts, professionals, patients, employers and workers in healthcare and justifies and delivers a consensus, impact assessment and blueprint to legislate now and prevent exposure of workers and patients to hazardous drugs which cause cancer and reproductive problems.

Source: Stop Cancer at Work, 26 March 2021

European Parliament votes to stop cancer at work and include hazardous drugs and reprotoxins in the Carcinogens and Mutagens Directive (CMD) 25.03.21.docx

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One in four NHS workers more likely to quit than a year ago, survey finds

A quarter of NHS workers are more likely to quit their job than a year ago because they are unhappy about their pay, frustrated by understaffing and exhausted by COVID-19, a survey suggests.

The findings have prompted warnings that the health service is facing a potential “deadly exodus” of key personnel just as it tries to restart normal care after the pandemic.

A representative poll of 1,006 health professionals across the UK by YouGov for the IPPR thinktank found that the pandemic has left one in four more likely to leave than a year ago. That includes 29% of nurses and midwives, occupations in which the NHS has major shortages.

Ministers must initiate a “new deal” for NHS staff that involves a decent pay rise, better benefits, more flexible working and fewer administrative tasks, the IPPR said.

“The last 12 months have stretched an already very thin workforce to breaking point. Many are exhausted, frustrated and in need of better support. If the government does not do right by them now, more many leave their jobs,” said Dr Parth Patel, an NHS doctor and IPPR research fellow who co-wrote its new report on how the NHS can retain and recruit more staff.

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Source: The Guardian, 30 May 2021

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Shielding coming to an end for millions

Today marks the last day that about four million of the most clinically vulnerable people in England and Wales are advised to shield at home.

Letters have been sent out to the group in the last few weeks. They are still being advised to keep social contacts at low levels, work from home where possible and stay at a distance from other people.

The change comes amid falling Covid cases and hospital admissions. According to NHS Digital, there are 3.8 million shielded patients in England and 130,000 in Wales.

Scotland and Northern Ireland are expected to lift their restrictions later in April.

People affected by shielding included Rob Smith, from Hull, who has muscular dystrophy.

Shielding for more than a year has been a "nightmare", he told BBC Breakfast.

"Where I was able to go out, I didn't feel I wanted to. I didn't feel confident to face people again," he said. "I've always been sociable.... It's had a massive impact."

Mr Smith now says he feels anxious about the future and believes for many people who have been shielding, it will "take time to get used to being out there again".

He is also wary of the risk of mixing with others again.

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Source: BBC News, 31 March 2021

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New NHS model needed for adoption of innovative medical devices

The system for introducing new medical technologies into the NHS remains complex, crowded, and difficult to manage, according to a new report by the Medical Technology Group (MTG).

The paper also calls for innovative treatments with medical devices to be given the same support as new pharmaceutical medicines.

Current NHS mechanisms to support the uptake and use of innovative technology are severely limited in scope and are focused on ‘picking winners’ rather than the broad system-wide adoption of new technology, the report states.

It points to the Accelerated Access Pathway, for instance, which supports fewer than 10 technologies each year; and the lack of a clear mechanism to support the widespread uptake of innovative products across the NHS.

And the absence of a broad, national commissioning policy means patients sometimes miss out on the benefits of established technology due to a regional variation in access.

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Source: BBH, 24 March 2021

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COVID-19: patient dies after catching virus in Brighton ward where beds not distanced

A CORONER has slammed a hospital trust after a vulnerable patient caught Covid-19 on a ward where beds were not socially distanced.

Senior coroner for Brighton and Hove, Veronica Hamilton-Deeley, has sent a rare Regulation 28 report for the prevention of future deaths to the Royal Sussex County Hospital, following the death of 78-year-old Brian Button last October.

The grandfather-of-three from Pevensey was admitted to hospital after a fall, but contracted coronavirus on the Catherine James ward within the Acute Respiratory Unit.

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