Is the US facing an epidemic of "deaths of despair"? These researchers say yes

In 2015, the Princeton economists Anne Case and Angus Deaton’s groundbreaking paper in the National Academy of Science’s magazine reported that mortality rates among a section of Americans were suddenly surging – something unheard of in previous decades. Mortality was only rising in a certain group: middle-aged non-Hispanic whites without a college degree.

Case and Deaton have returned with a new paper published last week by the Brookings Institute. It paints a grim picture of two Americas, in which one has recovered from the 2008 economic crisis and the other hasn’t. The latter, once called “blue-collar aristocrats”, consists of families who were previously able to get by with jobs not requiring college degrees. The disappearance of those jobs has been accompanied by an alarming rate of suicides, overdoses, and diseases caused by drugs and alcohol.

Case and Deaton call these “deaths of despair” – and argue they have recently reached disturbing levels. While opioids account for many of the deaths, drug abuse may only be a symptom of a larger, unseen epidemic of despair.

Dr Anne Case answered questions over email.

Could you briefly describe your original research and what this new follow-up paper adds to it?

Our 2015 paper documented a set of facts: that after a century of almost uninterrupted progress on mortality, US white non-Hispanics (WNH) in midlife were experiencing a sustained period in which mortality rates stopped falling and rose instead. This stands in contrast to the continued declines in midlife mortality in other rich countries, and to progress being made in the US by black non-Hispanics, and Hispanics, who are on average poorer than whites.

Our 2015 paper highlighted the role played by suicide, alcohol-related liver mortality, and accidental drug overdoses in pushing mortality rates higher for WNH Americans. Our latest paper allowed us to take a deeper dive, looking at mortality and morbidity in much broader perspective. We found the mortality increases are in sync with the distress midlife WNHs face in many dimensions: poorer health and mental health, social isolation, obesity, marriage (or lack of marriage), poorer labor market opportunities, and weaker attachment to the labor market.

Two additional findings stand out: using these outcomes as measures of wellbeing, there appear to be two Americas: one for people who got a four-year college degree, and one for people who didn’t. In addition, these poorer outcomes for those without a college degree become more and more pronounced the later in the 20th century.

You use the term “deaths of despair”. I’m wondering how you would define “despair” in this context?

We think of drug, alcohol and suicide deaths. In a sense, they are all suicide – either carried out quickly (for example, with a gun) or slowly, with drugs and alcohol.

How do you see religion and marriage as factors in the rise of mortality rates among WNH Americans?

There hasn’t been a decline in religion, but it appears there has been a change in the type of churches to which people report an affiliation. “Legacy” churches (eg Catholic, mainline Protestant) have given way to “seeking” churches, in which there is less structure.

I’m not sure traditional ideas of marriage have changed, but later-born birth cohorts of WNH without a college degree are substantially less likely to get married, or stay married. To be concrete, almost three-quarters of WNH men and women with less than a BA born in 1950 were married when observed at age 30; that fell to two-thirds for the cohort born in 1960 seen at age 30; and to half for the cohort born in 1980.

Scholars in sociology tell us this is closely connected to the fact that men in later-born cohorts can’t marry if they don’t have “a good job”. Those jobs – jobs with on-the-job training, jobs with benefits, jobs where, if you work hard, you can expect to move up – are harder and harder to come by now. While marriage rates fell, rates of cohabitation rose. However, unlike what one sees in many European countries, these cohabitations are fragile in the US. Taken together, this leaves less structure (in religion, in jobs, in marriage). If things go well, this is fine, but if things go poorly, this can lead to suicide.

You write that the recent decline in incomes does not completely explain the rise in “deaths of despair” among white non-Hispanics without a college degree; they also face a “cumulative disadvantage” over the course of their lives. How do you explain this?

Current household income per person doesn’t explain why those without a BA have rising mortality rates. For both those with and without a college degree, incomes rose in the 1990s and fell with the great recession. But those with a BA saw mortality rates fall throughout this period, while those without a BA saw mortality rates rise throughout.

We are working with a model of “cumulative disadvantage” to help us make sense of the rise in despair. You can think of everyone born in a given year (say, 1960 or 1970) as being handed a weight that they have to carry with them. The heavier the weight, the harder it is to carry, and the longer you carry it, the worse things become. That weight may be the kinds of jobs a person can get with a high school degree (measured in wages and opportunities for advancement), and it appears that weight is heavier for each successive birth cohort. The quality of the labor market may affect whether a person marries, and the stability of their personal lives, and whether they risk their health at work.

What current policies, if enacted, could prolong or deepen or halt the epidemic?

Addiction and mental health programs are essential. Working to stop the over-prescription of opioids is essential. Policies that make available educational opportunities for people who don’t want a college degree – that allow people to develop the skills that will be rewarded in the 21st-century economy – would make a big difference.

You suggest that Europeans don’t see the same rise in death rates due in part to a stronger social safety net. Could you see an argument for such a social safety net in America?

This might be more difficult than it sounds. Americans like to think of themselves as individuals who can look after themselves and their families, and expect the same of their neighbors. A stronger safety net may not be politically feasible. The difference between a “helping hand” and a “handout” may be in the eye of the beholder.

• In the US, the National Suicide Prevention Hotline is 1-800-273-8255. In the UK, the Samaritans can be contacted on 116 123. In Australia, the crisis support service Lifeline is on 13 11 14. Hotlines in other countries can be found here
  

Is the US facing an epidemic of "deaths of despair"? These researchers say yes

NHS delays leave thousands facing long wait for wheelchairs

Thousands of disabled people face long delays to receive an NHS wheelchair, the first official figures on the subject show.

One in five children who need a wheelchair are being forced to wait beyond the supposed maximum 18 weeks, as are almost one in six adults. Campaigners say the figures reveal a “postcode lottery” in provision across England.

Some 7,200 people who received a wheelchair between October and December had waited at least 19 weeks, despite the NHS Constitution guaranteeing access to one within 18 weeks.

NHS England does not record how long over the 18-week threshold patients have waited for a wheelchair. But the charity Muscular Dystrophy UK says it knows of young adults who within the past year had waited more than eight months.

The NHS England figures obtained by the Health Service Journal (HSJ) show that those with the greatest need for the equipment can face the longest waits.

Nic Bungay, director of campaigns at Muscular Dystrophy UK, told HSJ that long waits for a wheelchair appropriate for their needs were stopping young people “going out independently … and accessing university, work and friends”.

An estimated one in 50 Britons is believed to use a wheelchair to go to work or school, get to the shops, look after their children or undertake other tasks. The Wheelchair Alliance, led by Paralympic champion Lady Grey-Thompson, claims “great variation in ability to access assessment and obtain service provision”, as well as delays in receiving equipment and having it repaired, were affecting too many people.

The campaign group is urging the NHS to ensure equality of access for everyone who needs a wheelchair, which “would prevent confusion and disadvantage when education needs mean a user moving to another area or changing their GP [and put] an end arbitrary age discrimination. This is especially the case where very young children may or may not be provided with chairs depending solely on where they live.”

Almost 40% of adults with high or specialist wheelchair needs, who are defined as “fully dependent on their wheelchair for all mobility needs”, wait more than nine weeks for the NHS to decide what kind of wheelchair they need. A further 37% wait more then nine weeks to then receive their equipment. Slightly smaller numbers of children with the same level of need have to wait the same lengths of time, the HSJ discovered.

The data also shows that waits for wheelchairs lengthened significantly between April and June and the last three months of 2016, especially for adults.

NHS England said it accepted that some local NHS clinical commissioning groups needed to get wheelchairs to those in need more quickly.

“While the majority of children and adults get their wheelchairs within a few weeks, there are parts of the country where local services are not sufficiently responsive and we fully agree that needs to change,” a spokesman said.

The organisation has pledged to halve the number of children waiting more than 18 weeks by April 2018 and eliminate overly long waits for anybody by April 2019.

NHS delays leave thousands facing long wait for wheelchairs

Plight of child workers facing cocktail of toxic chemicals exposed by report

Children as young as eight, working in the tanneries of Bangladesh producing leather that is in demand across Europe and the USA, are exposed to toxic chemical cocktails that are likely to shorten their lives, according to a new report.

Approximately 90% of those who live and work in the overcrowded urban slums of Hazaribagh and Kamrangirchar, where hazardous chemicals are discharged into the air, streets and river, die before they reach 50, according to the World Health Organisation.

Their plight spurred the volunteer doctors of Médicines Sans Frontières (MSF) to set up clinics in the area to diagnose and treat those who are the victims of their workplace. It is, says a paper published in BMJ Case Reports, “the first time they have intervened in an area for reasons other than natural disasters or war”.

MSF’s intervention was triggered by “the widespread industrial negligence and apathy of owners of tanneries and other hazardous material factories” towards the more than 600,000 largely migrant population who have no access to government-funded healthcare.

MSF set up and ran four main clinics for 5,000 workers in 2015, located in the centre of communities involved in four different manufacturing processes at factories for tanning, plastics recycling, garment-making and metals.

The hazards of the 250 or so tanneries in Hazaribagh – which are 30 to 35 years old and discharge 6,000 cubic metres of toxic effluent and 10 tonnes of solid waste every day – are best known. In 2012, Human Rights Watch produced a report called “Toxic Tanneries” which revealed the flouting of Bangladesh’s own laws as well as international law in the employment of children under 18 in work that is harmful or hazardous.

The factories douse animal skins in cauldrons of chemicals as part of the processing of “Bengali black” leather, which is exported to European leather goods manufacturers in Italy, Spain and elsewhere.

“Apart from heavy metals like chromium, cadmium, lead and mercury, a conglomerate of chemicals are discharged by the tanneries into the environment,” says the paper. “Workers aged eight and older are soaked to the skin, breathing the fumes for most of the day and eat and live in these surroundings throughout the year. Personal protective equipment [is] not provided.”

Child workers clad in no more than loin cloths and wellington boots are exposed to chemicals including formaldehyde, hydrogen sulphide and sulphuric acid, write Venkiteswaran Muralidhar, associate professor at the Sri Balaji Medical college in Chennai, and colleagues.

The other factories– for plastics recycling, garments and metals – are in Kamrangirchar, an urban slum which is not officially part of Dhaka city. “In these, there are complex risk hazards from cotton dust, heavy metals and chemicals like mercury, phthalates, acids and dioxins and ergonomic hazards,” says the paper.

Chronic skin and lung diseases are common, say the authors. Within six months of the setting up of the clinics, 3,200 of the 5,000 eligible workers had come forward for at least one consultation. Among them, 468 (14.6%) were diagnosed with suspected work-related diseases, and 30 (0.9%) had work-related injuries.

The figures do not reflect the overall harm to the population, however, said Muralidhar. Those who are severely injured by chemicals or accidents would not go to one of the clinics. “They will probably be taken by rickshaw to a hospital in Dhaka,” he told the Guardian. And the clinics were only open four days a week, during the daytime, and workers needed the owner’s permission to go for a consultation.

He feels strongly that a hospital should be set up in the slum to help its people. “They are the most horrible conditions you can imagine,” he told the Guardian. “I work in this area. I have never seen anything as bad as this.”

Plight of child workers facing cocktail of toxic chemicals exposed by report

NHS finances facing "nasty hangover" after bid to avert winter crisis

The NHS’s already precarious finances are facing a “nasty hangover” after hospitals cancelled tens of thousands of operations recently in a bid to avert a full-blown winter crisis, experts have said.

Handing large numbers of operations over to private providers and hiring extra staff to cope with extra demand during December and January has also dealt a big blow to NHS trusts’ efforts to balance their books, the King’s Fund said.

The backlog of patients needing non-urgent surgery as a result of the widespread postponement of procedures this winter will also force patients to wait even longer for their operation, Richard Murray, its director of policy, said.

“Increasing spending on agency staff, outsourcing work to the private sector and suspending planned treatment may have helped to relieve pressure in the short term but are likely to result in a nasty hangover as hospital finances take a hit and waiting times increase further,” said Murray.

The service’s finances are deteriorating so sharply there is a real risk the Department of Health could bust its budget for 2016-17, according to the thinktank’s new analysis of NHS performance.

Its latest quarterly monitoring report on how the NHS in England is faring predicts that it is facing several more years of finding it impossible to live within its budget, despite government orders to do so. Hospital trusts ran up a deficit of £2.45bn last year and are on course to overspend by over £1bn again this year.

For example, 53% of hospital trusts and 63% of NHS clinical commissioning groups (CCGs) that the King’s Fund surveyed are fairly or very pessimistic about ending 2017-18 in financial balance. And looking further ahead, 74% of trusts and 86% of CCGs doubt they will achieve the huge savings expected of them by 2020 under NHS England chief executive Simon Stevens’s Five Year Forward View (pdf).

The NHS is now overspending by so much that many hospital trusts plan to cut staff in order to try to put their finances back in order. “Financial pressures mean some trusts are reducing their workforce, with 29% of finance directors reporting that their organisations have plans to reduce permanent clinical headcount,” the King’s Fund’s analysis said.

However, it said doing so risked endangering patients’ quality of care, especially with demand for medical treatment rising so sharply because of the ageing and growing population. Almost two-thirds (63%) of hospital trusts and 56% of CCGs think patient care has worsened in their area over the last year, the study found.

“It will be very challenging to reduce the clinical workforce at a time when many NHS hospitals are routinely running at high bed-occupancy levels and demand continues to rise,” the report said.

The research also appears to refute Theresa May’s view that patients’ difficulty in accessing GP services is a key cause of A&E units becoming so busy. In January she was criticised by GPs when she made clear that surgeries should open for longer to help relieve the strain on hospitals.

Asked to identify the key reasons for hospital overload, 80% of trust personnel surveyed cited the severity of patients’ illnesses, 70% mentioned the inability to discharge patients who were fit to leave, 61% said rising demand, and just 20% highlighted access to general practice.

Dr Helen Stokes-Lampard, the chair of the Royal College of GPs, said: “We’re pleased this report shows, without any doubt, that the recent winter pressures that have been facing our colleagues in emergency departments have not been because GPs – or any other clinicians in the NHS – aren’t working hard enough, but that the resources and workforce to cope with escalating patient demand simply aren’t there.”

Overall, said Murray, the fund’s findings “are further evidence of a service buckling under the strain of trying to meet rising demand while maintaining current standards and should give the chancellor pause for thought ahead of next week’s budget”. While Philip Hammond is expected to use his first budget on 8 March to boost funding for social care, he is unlikely to increase spending on the NHS.

The Department of Health declined to comment. NHS England said: “NHS frontline services have come under real pressure this winter but it is a tribute to the professionalism and dedication of GPs, nurses and other staff in A&E who continued to see, treat, admit or discharge the vast majority of patients within four hours.”

NHS finances facing "nasty hangover" after bid to avert winter crisis

English social care system for elderly facing "complete collapse"

Social care in England is at risk of imminent collapse in the worst affected areas unless urgent steps are taken to address the crisis engulfing the sector, Age UK has warned.

The charity’s latest report on the healthcare of older people calls for a cash injection into the adult social care system in the spring budget and the development of a long-term solution to a problem that will otherwise become more acute.

Analysis previously published by Age UK suggests almost 1.2 million people aged 65 and over do not receive the care and support they need with essential daily activities such as eating, dressing and bathing.

That figure has shot up by 17.9% in just a year and almost by 50% since 2010, with nearly one in eight now living with some level of unmet need, it says.

Age UK’s charity director, Caroline Abrahams, said the report makes for “frightening reading”, adding: “Unless something changes the crisis will certainly deepen this year and next, and we think there is now a real risk of a complete collapse in social care in the worst affected areas. If this happened it would be a disaster that would threaten the health and even the lives of the older people affected. It would also greatly intensify pressure on our hospitals.

“Some older people and their families are already telling us that they simply cannot find any carers where they live, and we are also hearing of vulnerable older people receiving council-funded care whose help has been significantly reduced, leaving them to manage alone for many hours at a time.”

The charity says the government’s three ways of propping up the system – financial transfers from the NHS, a social care precept in local areas, and calling on families and friends to do more – are inadequate and cannot make up for a “chronic” shortfall of public funds. The report, published on Thursday, says the NHS can ill-afford to bail out social care, the amount the precept (an additional council tax charge) can raise does not match the needs in every area, particularly poorer ones, and the number of families and friends becoming carers is not keeping pace with a rising ageing population.

It concludes that the government’s strategy for keeping the social care system from falling apart is not up to scratch. The charity warns that the situation will only deteriorate further as rising demand is accompanied by budget cuts and more care home providers pulling out of the market.

Margaret Willcox, president-elect of the Association of Directors of Adult Social Services, said the report “reflects the concerns of the whole sector united in the belief that adult social care is at risk of failure to chronic underfunding”.

A government spokesman said it was making £7.6bn of new money available for adult social care: “This government has gone further to integrate health and social care than any other before it. We have brought budgets together for the first time through the Better Care Fund and given the NHS an extra £10bn per year by 2020/21 to fund its own plan to build a more responsive, modern health system.”

English social care system for elderly facing "complete collapse"

Is the NHS really facing a humanitarian crisis?

The NHS is hitting the headlines daily at the moment. This is not surprising given that we are in the midst of winter, which always seems to bring bad NHS news stories and is a time when photos of patients waiting on trolleys in A&E corridors crop up more frequently in the news and on social media. Even the Red Cross, which seldom speaks up about the NHS, has warned of a “humanitarian crisis” following trusts reporting overcrowding in their A&Es.

There is no escaping the fact that the NHS is under immense pressure and this winter feels slightly more wearing than any other. Comments such as “unprecedented” and “record” levels of demand are correct, and reflections from clinicians that pressures in A&E are “the worst I can remember” ring true.

It is therefore right that we acknowledge and raise these concerns, but we should also be wary of frightening patients and undermining public confidence. The four-hour A&E waiting time standard is widely known but the reasons behind a breach of this standard are complex and, as our recently published briefing explores, if taken in isolation does not necessarily paint an accurate picture of the standard of care being delivered.

One thing is definitely clear – trusts are treating a record number of patients. More than 60,000 people attended A&E departments on 27 December 2016 – the second highest level for a single day. Some trusts are even reporting increases in A&E attendances of more than 20% compared with this time last year.

The reasons for this rise in demand are well reported and widely acknowledged – patients who are often more ill at this time of year, ongoing and worsening pressures in social care, restricted access to GPs and other parts of primary care, insufficient funding, workforce shortages – the list could go on. But how trusts are dealing with this rapid increase in demand is often clouded by official statistics based on the rather simple metrics.

While official data does show that as a collective hospitals are not meeting the four-hour waiting time standard, if you look beyond these figures and at the actual numbers, trusts are admitting, transferring or discharging more patients under four hours than ever before (5,462,464 patients between July and September 2016 compared with 5,350,952 in the same period in 2015).

We must therefore recognise the outstanding effort being put in by frontline NHS staff and managers, often working beyond the call of duty, to cope with record levels of demand. We should also celebrate and promote the progress being made by local health and care services across the country to keep patients well, at home and outside of A&E, for example:

• Trusts are implementing new protocols that help improve patient pathways, by placing clinical expertise at the doors of A&E departments.


• Some trusts have successfully put in place new arrangements where specialist clinicians from other hospital departments are based in A&E, so patients can be treated quickly and discharged, rather than needing to admit them to hospital to receive this care.


• Others have developed “discharge to assess” schemes that allow patients to receive care assessments at home rather than on an acute medicine ward.


• In many areas trusts have developed “trigger tools” that give staff a prediction with several hours notice on whether patients are likely to breach the waiting time standard based on early warning indicators, meaning there is sufficient time to call in additional staff and resources to support patients being admitted in a timely fashion.

Alongside the above interventions, there has been a renewed emphasis on local communication to improve public awareness of the increased pressure at A&E departments and how to proactively self-manage conditions and illnesses. Local urgent and emergency care system boards, often chaired by acute trusts, have also been established to oversee improved system-wide A&E planning and delivery, focusing on ensuring appropriate primary and social care capacity is available for patients who need it.

Demand management, however, must be a joint effort and cannot just be addressed at a local level. There is a need for a national debate on what is expected of our A&E departments, as well as the NHS more widely. We welcomed the health secretary’s recent comments about the need for an honest discussion with the public about the purpose of A&E and the need to avoid inappropriate attendances.

It is right that A&E services should be focused on those with most urgent care needs and the public needs to be aware of that, but patients won’t always have a choice. So there must also be alternatives available to those who are turning to A&E because other local health and social care services are unavailable to them. This will either require national investment or an honest recognition that, despite the commitment and hard work of frontline staff, the NHS will struggle to meet all its existing priorities and performance standards.

In reality the NHS is neither “breaking down” nor “coping well” – the vast majority of trusts are delivering a good service and high quality care to patients, despite the pressure they are under.

Some may even say the NHS is “just getting by”. And we shouldn’t underestimate how difficult this level of performance is given the unprecedented pressure the health service is under.

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Is the NHS really facing a humanitarian crisis?

NHS hospitals facing toughest winter yet, say health experts

Record numbers of patients are leaving A&E units without being treated, new figures reveal, sparking fears that the NHS is on the brink of a winter crisis and cannot cope with soaring demand.

The figures for September show 53,000 people left an emergency department in England before receiving treatment, up 24% compared with September 2015.

The data released by NHS Digital does not include patients’ reasons for leaving, but many are likely to have done so because they felt they had waited too long to be seen.

“Our NHS is facing a massive crisis and most politicians seem happy to look the other way,” said Tim Farron, the Liberal Democrat leader. “The strain of overcrowded A&E units and a creaking social care system means the government are failing millions of sick and vulnerable people.”

Questions are also being asked about the quality of care that A&Es provide because the number of patients who have to come back for further treatment within a week of their first visit is increasing quickly. Experts say the trend may indicate A&E staff are struggling to provide the highest standard of care because they are now too busy too much of the time.

In September, 137,164 patients (8.1% of all 1.68m attendances that month) came back to an A&E in an unplanned way within seven days of their first attendance, compared with 119,856 (7.6%) in the same month a year earlier.

Prof John Appleby, chief economist and director of research at the Nuffield Trust health thinktank, said: “There is no doubt that this winter will be exceptionally tough across the NHS. A&E targets have been missed for months, record numbers of patients are waiting on trolleys to be admitted to hospital and, as today’s figures show, there is a worrying rise in people going back to A&E units within seven days, raising questions about whether they’d had the right treatment or advice.

“These figures paint a picture of an NHS under severe pressure, which will put staff under great strain over the winter period and could put patients at risk. The NHS has managed in previous years by opening extra beds, deploying more staff and reducing the numbers of non-urgent operations. We expect to see the same this year, but the question for this winter is whether there will be enough slack in the system to deal with a sudden outbreak of flu or norovirus.”

The NHS Digital figures show that the time it takes for a patient to start treatment in A&E has risen in the past year, from 55 to 59 minutes – a 7% increase. In September last year, 95% of all A&E cases left the unit within 5hrs 53mins of arriving; this September 95% left within 6hrs 30mins.

NHS Improvement, the health service’s financial regulator, ordered hospitals last week not to carry out non-urgent surgery over Christmas so that beds were left free to help deal with a potential influx of patients. Jim Mackey, the agency’s chief executive, told hospital bosses that the NHS was facing a “critical” time.

A separate study suggests the NHS is on track to have its most difficult winter ever. A total of 785,883 patients could end up waiting more than the supposed maximum 4hrs for A&E care in the December to February months, far more than the 613,971 who did so in those three months in 2015-16.

The projection is based on a 28% year-on-year rise in such delays seen each year between 2010-11 and 2015-16, according to Incisive Health, a specialist health communications and policy firm.

Similarly, trends over the past six years suggest A&Es in England may have to treat as many as 5.76 million patients over the winter period, up from 5.65 million last winter.

“The NHS has got used to difficult winters but this looks likely to be the toughest yet,” said Sarah Winstone, one of Incisive Health’s founding partners.

Dr Taj Hassan, the president of the Royal College of Emergency Medicine, which represents A&E doctors, said that the figures underlined that the NHS was now facing winter-type levels of demand all year round, to the extent that some hospitals could “fall over”.

He criticised ministers for inaction. “The situation continues to worsen every year despite repeated pleas for emergency medicine, social care and the wider NHS to be appropriately funded and resourced,” he said. “All evidence points to a badly failing system, yet these warnings continue to fall on deaf ears. Unless appropriate action is taken, patients will continue to suffer and some systems will fall over completely.”

The Department of Health said that many patients did not need to go to A&E in the first place and insisted that hospitals had made good preparations to cope with extra demand over winter.

“Increasingly, hospitals have systems in place to direct patients to the best NHS service. We know that four out of 10 patients going to A&E don’t need to be there.

“The NHS is better prepared for winter than ever before, funded by £400m to cope with the extra pressure, and is performing well despite being busy. In fact, over 27,000 more people were seen within four hours in A&E compared to October 2010,” a spokesman said.

NHS hospitals facing toughest winter yet, say health experts

Thank you, Liz Jackson, for your candour and courage in facing a bastard of a disease | Paul Daley

“Parkinson’s disease” – my father never spoke these words before he died eight years ago from pneumonia associated with his decades-long endurance of this dreadful affliction.

My mother, who saw him through the worst of it until she could no longer do so, never said them. Neither did the doctors – not to his children at least.

Dad tried to keep the disease a secret from us even though the symptoms made the affliction obvious. After his death Mum said he’d never even admitted to her that Parkinson’s disease was killing him.

Maybe he was too proud to admit that something beyond his control, something so humiliating, had him in its python grip. He might’ve feared, irrationally of course, that we’d think less of him. Who knows? We never talked about that – and so much else besides.

I’ve long admired the journalism of Liz Jackson, the multi-award winning ABC broadcaster and film-maker. To me she has always been prominent in a milieu of journalists from the broadcaster who have shown us later generations the way.

And now my respect for her has grown further, having watched her heartbreaking documentary, A Sense of Self, about her diagnosis with – and life since – Parkinson’s.

Her candour and courage and humour in the face of the disease and for her decision to tell the story of her family’s experiences is beyond admiration. Ditto her dignity, in volunteering that she tried for a while to hide the disease from her children out of fear they might see her as weak, or colour their enduring impressions of her.

Then there’s her journalistic professionalism – to tell the story come what the hell may and probably will; the legacy grows exponentially. There is a lake of tears for Liz Jackson now, but not for the pity she despises. No, it’s to celebrate a world that can make a woman who Google-doctors her symptoms, understands the shitful truth of it all but continues to do brilliant work and goes from doctor to doctor to outrun it – and make this documentary.

Anyone familiar with Liz Jackson and who saw the program would be shocked at her decline. It illustrates starkly what a cruel, bastard of a disease Parkinson’s is, the way it robs one of bodily, intellectual and emotional control, and renders the previously strong so terribly, terribly prematurely frail.

The program is remarkable, however, for the humanity with which she emerges – a person defined by everything else that she is, except the disease, really.

Former ABC journalist Liz Jackson and documentary maker husband Martin Butler. Together they produced A Sense of Self, documenting her struggle with Parkinson’s Disease Photograph: Tom Hancock

It is one of the most moving and important pieces of television I’ve seen, for the way it effectively transcends its immediate subjects so that it might interrogate and provoke us into considering how we approach and judge and emotionally respond to the dreadfully ill in our midst.

Dad was completely exhausted, wrung-out – a physical husk of a man – when he finally succumbed. He fought and fought and never really lost he will to live because he loved life and his kids, and especially his grandkids, so much.

He was a modest though proud bloke. Which is perhaps why he never volunteered what he had. And we never pushed him. When I think back, he probably lived with it for 20 years. But somehow, he kept the drug regimen a secret from us.

Even in his final months at home, before we intervened to move him into supported living because caring for him was going to kill our elderly mother, he would pretend it wasn’t happening. He’d sit there in his chair, drinking tea or on family occasions (which he loved), wine, through a straw, his hands shaking so violently that we’d want to help him.

Mum would give us a look that meant, “No,” then rescue his dignity, mop up, without a word or missing a beat, whatever he’d spilt on the floor or himself.

Parkinson’s is a dreadful curse. But nobody knows why we get it. Those who’ve seen a family member succumb to it reassure themselves that it is not hereditary. But its very mystery is testimony to the importance of what Liz Jackson has done in highlighting the cruelty and tragedy that freights it.

I have several friends who’ve lost loved ones to Parkinson’s. There is no common experience. Not all sufferers will endure the same symptoms. Dad had terrible tremors, he lost the capacity to write legibly, to remember – and say – names, even of family members such as my wife – and eventually he had terrible dementia.

But he was never afflicted with the depression and the panic attacks that have crippled Liz Jackson.

Liz Jackson, A Sense of Self

Just as my dad was spared her panic attacks and depression, I hope she and other Parkinson’s sufferers are spared his dementia.

In a way that was the hardest thing for us.

The dying months of the Bulletin magazine, for which I wrote, coincided with Dad’s terminal decline. Dad, though he never said so, read everything I ever wrote.

In late 2007 I skived off the federal election campaign when John Howard’s caravan passed through Melbourne. He was sitting in front of a TV in the nursing home, the Bulletin open, on his lap, at my story.

He looked at me. His eyes were blank. He no longer seemed to know me.

Thank you again Liz Jackson.

Thank you, Liz Jackson, for your candour and courage in facing a bastard of a disease | Paul Daley

Theresa May must wake up to the crisis facing the NHS

Theresa May has told Simon Stevens, chief executive of NHS England, that the health service will get no extra money, despite rapidly escalating problems that have led to warnings from the British Medical Association that hospitals are close to breaking point.

The NHS is now at a more pivotal stage than it has ever been since I became a GP more than 30 years ago. The financial squeeze on health services will get much tighter over the next five years, with spending per person on the NHS falling by 9% (pdf).

In 2014, the Institute for Fiscal Studies predicted that even if the NHS budget remained protected from cuts, the growth in population would lead to big real terms cuts. The myth that the NHS budget is protected is over. Even if health spending continued to rise with inflation, as it has since 2010, age-adjusted spending per person would be 9% lower in 2018 (pdf) than in 2010. On top of this, Jeremy Hunt wants the NHS to save £22bn by 2020.

These “efficiency savings” are unfeasible and dangerous and will push an NHS already teetering on the brink right over the cliff edge.If Hunt wants to save money, abolishing wasteful internal/external health markets and renegotiating private finance initiatives would be a good start.

The NHS has not faced this level of challenge in its history. The universal care it provides is in danger of becoming unsustainable. The dire prospect is that the NHS will have to ration treatment, shut hospital units, close GP surgeries and cut staff if it gets no extra money soon.

Already, one in five patients are waiting a week or more to see their GP, or not getting an appointment at all, and thousands of patients wait hours in A&E and on hospital trolleys. The answer to the funding crisis would be a firm commitment to get funding levels back to the EU average on health spending. The prime minister might say it depends on a strong economy, but I would say it depends on your commitment to the NHS.

By reappointing Hunt as health secretary, May has signalled that she endorses the imposition of an unsafe junior doctors’ contract, an unaffordable seven-day service, rock bottom staff morale, a decline in general practice and the ideologically driven privatisation of the NHS.

Meanwhile, May is the architect of the minimum salary for immigrants who have lived in the UK for less than 10 years (the threshold is at least £35,000), if they want to continue to stay. The points-based immigration system she advocates would mean the low-skilled migrant workers who form the backbone of the care sector would be denied entry to Britain.

This would hugely impact on the recruitment of nurses and para-medical staff in the NHS. If she means what she says, that she loves the NHS, May needs to wake up to the crisis in the NHS. A failing NHS will only help to boost private healthcare insurance for those who can afford it, signalling the death knell for a universal healthcare service, free at the point of use.

But, this is perhaps what she wants. Praise poured from the prime minister in her speech to Tory party conference in Birmingham – bidding to be “the party of the NHS”. But as she showed no sign of confronting the health service crisis, in practice she is undermining it.

The gap between policy rhetoric and reality has never been starker. The British public deserves nothing less than a well-financed and functional health service with happy and productive staff. I call on Theresa May to provide immediate clarity on the fiscal health of the NHS.

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Theresa May must wake up to the crisis facing the NHS

BMA facing backlash from members over handling of contract dispute

The British Medical Association is facing a major backlash from angry members and an exodus by medics disillusioned with its “appalling” handling of the bitter junior doctors’ dispute.

There has been a spate of resignations from the doctors’ union after it announced, then called off, a series of five-day all-out strikes in a failed attempt to stop the health secretary, Jeremy Hunt, imposing a controversial new contract on the 54,000 trainee medics in the NHS in England.

Members are accusing the BMA of being “spineless” and “incompetent” and of betraying junior doctors, and there are growing calls for the creation of a rival trade union to represent them. BMA leaders, one of whom admitted privately that it has ended up “in a big mess”, are worried that its handling of the year-long contract row has left it divided and weakened in defeat.

Junior doctors have inundated their Facebook discussion group with angry messages about the BMA and Dr Ellen McCourt, the chair of the union’s junior doctors committee (JDC). Some have posted screengrabs of cancelled direct debit forms, showing that they are rescinding their membership.

“I don’t want to just cancel my direct debit. I want to tell the BMA why I am withdrawing my subscription. I want to tell them how spineless they have been,” said junior doctor Mukhtar Ahmed.

He criticised the BMA for endorsing in May a revised contract that it had negotiated without seeking members’ views. The contract was later rejected by 58% to 42% in a referendum among junior doctors.

“I want them to know that these series of blunders have not only lost us this fight, but any future fight and the NHS as a whole. I believe in the power of the union but not this one,” Ahmed said.

The BMA is examining alternative forms of protest against the contract, which will start being imposed from next week. It is due to announce details this week, though the options under consideration are believed not to involve any form of industrial action, such as a work-to-rule or refusal to do overtime.

Many doctors are angry that they heard from the BBC rather than the BMA last Saturday night that the union had called off planned strikes. Junior doctor David Pye said: “I am done. I shall not be sending you any more money. I have put up with utter incompetence, fucking survey monkey polls to see what I think, leaks, power struggles and, for the third time, I find out our master plan via BBC news and not via my union. Goodbye.”

Increasing calls to set up an alternative organisation to represent trainee doctors intensified after the decision. “Time to form a new trade union – run by junior doctors and only for junior doctors. Getting recognised won’t be easy and it may take too long for this dispute but now the BMA has proven it is not fit for purpose, this is our only option for the future,” said medic Christopher Howarth.

McCourt and the JDC decided to abandon further industrial action in the campaign against Hunt after large numbers of junior doctors made clear that they had deep misgivings about taking part. BMA leaders feared that turnout might be as low as 20%, well down on the majority support during the eight previous days of industrial action between January and May.

A five-day strike due earlier this month was cancelled after the BMA admitted giving hospitals too little time to make arrangements to cope with the disruption. The first long stoppage was due to take place on 5, 6, 7, 10 and 11 October, despite warnings from senior doctors, medical bodies and the chief executive of NHS England, Simon Stevens, that patients would be at risk.

There is widespread anger among junior doctors at the cancellation, even though it appears that many of them were opposed to such a long stoppage. Many think the U-turn was merely the latest in a series of tactical blunders by the union in their unsuccessful battle to force Hunt to back down.

A sizeable minority of members of the BMA’s ruling council fear the union has done itself potentially irreparable harm and that the plan for five-day strikes has severely damaged public trust in doctors and left them looking uncaring and reckless. Some believe that Dr Mark Porter, the union’s leader, allowed its JDC too much freedom under McCourt and her predecessor, Johann Malawana, to decide its own tactics.

In a post on the Facebook site in response to the torrent of online anger, McCourt insisted the junior doctors’ campaign would go on. Defending the cancellation, she said: “We had a choice that included continuing the current planned industrial action, changing the planned IA or suspending the action. The JDC, having weighed up the new information, debated the options and voted to suspend the IA and pursue other means of resisting the contract. This does not mean the fight against imposition and this contract is over.”

BMA facing backlash from members over handling of contract dispute

NHS facing "pockets of meltdown" this winter

The NHS will experience “pockets of meltdown” this winter as the service comes under increasing pressure, a leading doctor has warned.

Dr Mark Holland, president of the Society for Acute Medicine, said the resilience of medical units was being “put to the test like never before”.

It comes a day after the chief executive of NHS Providers, Chris Hopson, said the government would fail to achieve its aim of a seven-day NHS without more cash.

Writing in the Observer, he warned that hospitals are cutting services and the NHS risked “slowly deteriorating” as it did in the 1990s.

Holland echoed the warnings about a service under pressure, saying those parts of the NHS where performance was already weak would find the winter months particularly difficult.

He also pointed to the “national emergency” of medically fit patients not being discharged home from hospital. This is partly due to inadequate social care in the community.

He said the current concern was “that hospitals where performance is already weak will find it very difficult to cope during the winter and that will lead to pockets of meltdown”.

He added: “At the core of the issues facing the NHS is the rapidly increasing number of delayed discharges. The figures are spiralling and are fast becoming disastrous.

“If hospitals cannot discharge patients then the system comes to a halt. We need an overhaul of the discharge and social care process nationally so we can release pressure on front-of-house services in our hospitals – it is a national emergency.”

Delayed discharges – often called bed-blocking – refer to the number of people stuck in hospital who are medically fit to leave.

Figures for July show the equivalent of 184,188 days were lost due to delayed discharges, the highest on record, with estimates suggesting the figure across a year could be as high as 2.7 million bed days lost.

Holland was speaking before the Society for Acute Medicine’s conference in Edinburgh. Acute medical units deal with the immediate treatment of adults with a variety of conditions who present to hospital as emergencies.

The society published a new report on the performance of acute medical units based on speed of assessment, access to clinical decision-makers within four hours and a consultant review within 14 hours.

The audit, which covered 94 units and 4,140 patients, showed 81% of patients were seen by a consultant within the target, 69% by a competent decision-maker within four hours and 69% had an early warning score recorded on arrival. However, only 41% of patients received all three.

Holland said: “The findings are that, while we are still doing well on average and some units are doing very well, there is a spread and variance in what we achieve and, overall, performance has dipped over the last three years.

“This tells us that, despite the brilliant work of acute medicine practitioners to maintain quality and safety – and there are some fantastic examples of staff going above and beyond – our resilience is being put to the test like never before and that is not sustainable in the long term.”

He said it was vital that NHS trusts that were struggling to cope were not “hidden” by better performers who average out the statistics.

MPs on the Commons health committee will hear about winter preparations later on Monday.

Professor Keith Willett, director for acute care at NHS England, and Pauline Philip, urgent and emergency care director, will be among those appearing before MPs in Westminster.

NHS facing "pockets of meltdown" this winter

NHS facing summer crisis as A&E performance deteriorates, says Labour

NHS sufferers wait in A&ampE. Labour explained the government had produced it tougher to get a GP appointment and hospitals have been struggling with the resulting strain. Photograph: Robert Stainforth/Alamy

An unexpected summer season crisis is building in the NHS, with functionality in accident and emergency departments deteriorating, bucking the standard trend of waiting occasions being worse in winter than summer season, according to the Labour celebration.

The figures demonstrate a record quantity of sufferers attending hospital A&ampE departments in any one particular week and a record amount then admitted to hospital wards. The figures display a total of 296,667 going to A&ampE in the final week of Might, once more raising inquiries about the adequacy of GP services. Of these 77,745 were admitted to hospital.

A&ampE departments are supposed to see, treat, and admit or discharge 95% of sufferers inside four hrs of arrival at hospital, but in the last 4 weeks the variety of sufferers waiting a lot more than four hours has ranged from 22,231 a week to 24,503.

By comparison, the numbers waiting in the 4 weeks of November for the equivalent period have been in between 13,938 a week and 17,372. The figures waiting this summer time are also double the number of patients waiting far more than 4 hrs in the summer three years in the past.

A complete of over 16,000 individuals were waiting up to twelve hrs on trolleys for a ward bed.

Figures published final week revealed a record 300,000 individuals arriving at A&ampE departments and record numbers admitted to wards.

The president of the School of Emergency Medication, Dr Clifford Mann, mentioned: “These figures underline the need for substantial action. The school has exhorted the NHS to decongest A&ampE departments by providing accessible choices for the two.1 million sufferers who could be securely redirected from triage and to mandate total capability programs to deal with the pernicious dilemma of ‘exit block’ failure to do so will indicate these figures go from bad to worse and lives are endangered.”

Labour is keen to see the long term of the NHS rise up the political agenda, and was struck by polling launched this week by the Conservative peer Lord Ashcroft displaying its relevance to voters.

When voters were asked what they saw as the most essential troubles facing their households, the NHS topped the record when it came to people’s personalized priorities: 57% named the NHS as in their best 3, just pipping the economic system and jobs (56%)

Jamie Reed, shadow health minister, stated: “Men and women can see that the NHS is heading downhill beneath this government. A&ampEs are facing the worst year in a decade – there’s now a summer time crisis which is worse than the winter one particular.

“Ministers have taken social care assistance away from older people and made it harder for others to get a GP appointment. A&ampEs are struggling to deal with the extra pressure.

“Hospitals are working above secure ranges – A&ampEs and hospital wards are full to bursting.”

At the very same time Labour sounded the alarm on the extent of the use of agency workers in the NHS as spending on temporary personnel in basis trusts hit £1.4bn in 2013-14.

In a indicator of the staffing crisis hitting the NHS, Monitor’s most current report exposed that whilst foundation trusts planned to invest £523m on agency staff final year, they alternatively spent 162% a lot more than expected.

Foundation trusts’ yearly accounts for the previous five years show that the proportion of staffing costs spent on agency staff has increased by twenty%.

The shadow care minister Liz Kendall mentioned: “It really is now clear that ministers have lost manage and that NHS finances are going backwards.”

The government insists it is striving to recruit additional personnel for A&ampE, but claims Labour is striving to develop a crisis.

NHS facing summer crisis as A&E performance deteriorates, says Labour

Ignorance of care high quality is "true scandal" facing NHS, warns overall health chief

“The true scandal in our wellness service is ignorance,” he explained.

“If you consider about cancer, I couldn’t tell you how a lot of individuals are receiving chemotherapy,” he stated. “Not even how several people are obtaining remedy, allow alone at what benefit.”

The ideas for care.data – a database of GP records – have been delayed until up coming yr, and will stick to pilot schemes in a number of regional regions.

Mr Kelsey explained he hoped that a number of new safeguards would offer the public with assurances that the information would only be used to improve patient overall health care.

He explained: “We are fully flying blind. The NHS – such an essential, extremely valued public religion truly – is offering a service that on the entire has no thought of its high quality.”

The NHS official explained his own family’s attempts to blow the whistle on poor overall health care had convinced him of the need to have to have far more transparent information published about companies.

He mentioned his mother had been “hounded out” as a GP after attempting to warn that a hospital advisor appeared to be repeatedly missing situations of breast cancer.

Published information comparing NHS providers could reveal large death costs and poor companies, he explained, alternatively of leaving it to individuals to warn of suspicions over poor care.

He stated the NHS repeatedly taken care of whistle-blowers appallingly, ending careers.

“My experience of whistle-blowers has universally been tragic and there is no excellent factors that come to people who break the bounds of their organisation and inform the reality. Its virtually always a catastrophic emotional experience for people individuals,” he mentioned.

Mr Kelsey stated the strategies for the giant GP database were “the greatest data revolution” any public support had embarked on, even though admitting that numerous questioned him as to no matter whether the scenario had turned into “a vehicle crash”.

He stated: “We chose to delay the programme earlier this yr soon after a multiplicity of hugely-justified concerns about the way it was getting rolled out.”

“We paused it due to the fact there was this tremendous outcry, and uncertainty about what was happening.”

He mentioned officials had now introduced important safeguards in response to many of the concerns and explained the NHS need to be “celebrating” the fact that the backlash had led to a large public conversation about the plans.

Mr Kelsey dealt immediately with a amount of worries raised, in particular an investigation by The Every day Telegraph, which found in February that NHS hospital information had previously been sold for insurance coverage purposes.

He stated: “Data of this kind can only ever be utilised now for wellness benefit – so we can rule out the emerging concerns that perhaps men and women would use this for insurance or for junk mail. That is not legally permitted any longer.”

Ignorance of care high quality is "true scandal" facing NHS, warns overall health chief

Well being services facing largest challenge in its historical past, new NHS chief says

Simon Stevens: ‘Service pressures are intensifying and longstanding problems are not going to disappear overnight.’ Photograph: Linda Nylind for the Guardian

The NHS is dealing with the most significant challenge in its 66-yr history and need to radically adjust how it cares for sufferers in buy to cope with intensifying pressures, the service’s new boss has warned.

A budget squeeze combined with a expanding demand for care driven by the ageing population indicates that “for the NHS the stakes have never been greater”, Simon Stevens will say on Tuesday – his very first day as NHS England’s chief executive.

He will use a speech in Newcastle to mix praise for the NHS he has inherited with a clarion contact to its one.three million employees to embrace main adjustments to their roles above the subsequent few years in order to improve the good quality of care individuals get.

“I know that for the NHS the stakes have in no way been larger. Service pressures are intensifying and longstanding troubles are not going to disappear overnight,” Stevens will say. “Efficiently navigating the next couple of years is going to get a crew effort, involving the most significant team in the greatest effort the NHS has ever seen.”

In his 1st public statement Stevens will identify improved care of older men and women, greater joint functioning amongst the well being and social care providers and new designs of care, which harness advances in medicine as currently being between his essential priorities.

An NHS dealing with new challenges will want to find new solutions to remain sustainable, he says. “An ageing population with much more continual wellness circumstances, but with new options to live as independently as possible, indicates we’re going to have to radically transform how care is delivered outside hospitals,” he will include.

Stevens, 47, will also plead with the several different kinds of personnel who function for the NHS to move beyond divisions and work much more closely. “Our traditional partitioning of overall health providers – GPs, hospital outpatients, A&ampE departments, community nurses, emergency psychological health care, out-of-hours units, ambulance services and so on – no longer can make a lot sense”, he will say.

Dr Mark Porter, chairman of the British Healthcare Association, mentioned that Stevens – a well being adviser to Tony Blair’s government from 1997 to 2004 – is arriving when “the NHS is facing a excellent storm of growing demand, funding pressures and worryingly minimal employees morale”.

Each he and Andy Burnham, the shadow overall health secretary, cautioned that Stevens would have to confront issues produced by the coalition’s shake-up of the NHS in England last year, particularly involving competitors.

With the service even now digesting the lessons of the Mid Staffs scandal, Stevens will acknowledge that, although “the high quality of NHS care is generally really higher, occasionally it isn’t”. He will also laud the essential function of whistleblowers in exposing poor care and warn that “an NHS with a ‘like it or lump it’ attitude will merely not survive”.

Well being services facing largest challenge in its historical past, new NHS chief says

Herbalife excess weight loss supplement organization facing inquiry from FTC

Herbalife Ltd says that it is facing an inquiry from the Federal Trade Commission.

The nutrition and supplement company’s shares initially plunged more than twelve% following a short halt in trading pending the announcement.

Herbalife said that it received the civil investigative demand from the FTC on Wednesday. The FTC’s web site says that these are employed to investigate possible “unfair or deceptive acts or practices.” A representative from the FTC was not instantly accessible to elaborate.

The company, which has faced accusations of operating a pyramid scheme, stated that it welcomes the inquiry offered “tremendous sum of misinformation in the marketplace” about its business.

Herbalife says it believes it is in compliance with all laws and regulations and plans to cooperate totally.

The firm, which is integrated in the Cayman Islands and primarily based in Los Angeles, employs a network of distributors to promote its dietary dietary supplements and fat-loss goods globally.

The FTC inquiry comes just a day right after hedge fund manager William Ackman renewed his attacks on the organization.

Ackman has bet against the business and mentioned repeatedly that he believes it operates as a pyramid scheme, which is when a organization helps make most of its funds by recruiting new salespeople rather than on the products that they sell.

The head of Pershing Square Capital Management resumed this effort Tuesday, holding a public occasion to detail his firm’s claims of how Herbalife is working as a pyramid scheme in China, violating laws there. Pershing declined to comment Wednesday on the FTC investigation.

Herbalife has repeatedly denied the claims and rival investor Carl Icahn has disagreed as well, taking his fight against Ackman public and escalating his stake in the business.

Its shares fell $ three.81, or five.eight%, to $ 61.58 in mid-afternoon trading following falling as lower as $ 54.59 earlier. Its shares had fallen almost 17% so far this yr via Tuesday’s near.

Herbalife excess weight loss supplement organization facing inquiry from FTC