onsdag den 29. april 2020

The Ebola fog is lifting - next global epidemic to eradicate: bad global management



We produce and consume disasters whether we intend to or not. But it's generally not the same groups of people that causing disasters and those sacrificing. Disasters, in all their grief, have a capacity to reveal inequalities and injustices of the world (eg. Katrina did in the US and the earth quake in Haiti). While we wait for the little Ebola virus to give in under the pressure from the international community let us see if this disaster has unearthed hidden disparities in health, ugly faces of the international community or new lessons for global health that we need to address.
In her speech at the 136th executive board meeting of the WHO in 2015, President Margaret Chan said: "Well-functioning health systems holds together the community and protects against crises", and noted that universal and equal access to health care reduce the effect of social determinants on health. The current Ebola epidemic has given its own view on why we should invest in health. As many other agencies DANIDA, the Danish governmental development organization does not invest directly in overall capacity building of health care in low-income countries as a means to ensure development. But maybe DANIDA, and many others, should consider changing that position now where the Ebola mist is disappearing. The Ebola epidemic has given us a rare insight into the devastating effects of lack of investment in health, education, logistics and research. We were globally stunned when a tiny virus with 7 genes met fertile ground in a country the majority of the world’s population can’t place on a world map even today. Just as stunned as esquimoes were when they met the measles virus for the first time in 1951 (after several previous near-epidemics, that were stopped) at a dancing party in Nuuk or as the haitians when they met cholera bacteria after the earth quake through the otherwise friendly UN peace keeping forces.

The ugly side of Global Health
It's not Ebola, which has killed so many people to death - it is a cocktail of bad leadership, the absence of timely international care unfortunate global mechanisms and the pre-existing failure of health systems in the weak states where the epidemic spread. And neither should be a surprise to the global players and donors. They have known about the weaknesses of health care in the Ebola-affected countries for decades, but they have not shown interest in any of the many reports and scientific studies that have documented the near-collapse of some West African health systems. The Ebola epidemic started in 2013 in an area of Guinea-Conakry, previously occupied by rebels from neighboring Congo, where the forest is cut down and replaced by endless rows of palm oil plantations. The military had, shortly before the epidemic index case, shown some aggressive behavior in the area and there were ethnic disputes involved. A parallel, internationally funded system of Community Watch Committees (Comités de Veille, CWC) should in principle report illnesses and deaths, but members of the councils were appointed for political reasons and payments were irregular so the reporting was sporadic. And that turned out to be crucial in the beginning of the Ebola epidemic. Parallel reporting systems with external funding will live their own life outside public health care. The government enjoyed very little support in the population, and the whole effort against Ebola was organized with a top-down militaristic flavor and without attempts of social or cultural adjustments of health messages or funeral rituals, which further increased the population's reluctance towards the Ebola campaign. Schools and health centers in the area were not operating, there were no doctors in the area and that is apparently still the situation today years later (KILDE). Peter Piotr’s encounter with the world’s first Ebola outbreak in 1974 was exactly the same as the present Guiné outbreak. Some lessons are apparently more difficult to learn and it is precisely both the problem and the solution to global health challenges. Global health has an ugly side that we need to expose and deal with.
Cutting down trees and the easy access to bush-meat snacks in Guinea and Sierra-Leone have been blamed for the outbreak. Sierra Leone’s forests are forecasted to be completely wiped out by 2018. Especially in the part of Guinea where the first case in the outbreak occurred seems interesting from an environmental point of view. Forestation and subsequent demographic consequences for the population and the restriction of border traffic that affected mainly female traders has led to a lively ever changing community and it is thought that fruit bats, thought to be the reservoir of ebola virus have had to find new habitats thereby changing the interaction with humans. Mining has also had an effect on changing environments that have forced bats to adapt to new environments closer to humans. Climate change in the area has led to disappearance of some of the fruits the bats thrive on.
The epidemic doesn’t unfold in a tropical distant vacuum.  A survey in 4 remote counties in Liberia in August-September 2014 found that 3 of 6 doctors had fled because of the epidemic and most nurses didn’t show up for work. In 3 counties nurses hadn’t been paid their salaries for three months. Rubber gloves and sterile gloves, and obstetric equipment was missing at all facilities. It was not possible to wash hands. Two centers had rudimentary isolation facilities without access to water. Only 6 of 19 facilities in one county has access to mobile phone communication .
The Ebola epidemic has been described as a stew of fear. On the one hand the Western world fears the strange and dangerous diseases that come from the tropics where bloody tears and dreadful pains accompanied by extreme fevers mixed with Western fear of the mysterious and dangerous tropical Africa, with blood sucking giant bats flying around at night and bush meat sold on any corner. On the other hand Liberians and Guineans can’t help doubting and fearing what lies behind the sudden tremendous interest white people are have in their well-being ... .where were they, their interest and charity before Ebola started? It gives a lethal unpredictable stew of fear where the spices are distrust and fear..
Many other factors have, until recently, contributed to the lack of outbreak control. The Ebola epidemic showed the impact global mechanisms can have on the local level. The International Monetary Fund's demands for public spending cuts and user fees in health care and education in conjunction with an uncontrolled increasing privatization of health care has led to the decay of public health centers and hospitals that lack public confidence. Lack of wages for doctors and nurses, the financial crisis and rising food prices have pushed public officials to have more jobs and to charge unofficial fees for services that should be free. To the majority of doctors' career opportunities and access to training / specialization is non-existing. Collapsed public universities without associate professors, high tuition fees and privatization of university education have contributed to reduced health research capacity.
Swing door poverty
Recently, an independent think tank that studies corruption demonstrated that corruption in public administration has been, if not the cause itself, so at least a significant part of the blame for the non-functioning healthcare systems in the Ebola struck countries. Paul Farmer, physician, anthropologist, and expert in Global Health has recently said that one of the reasons that the Ebola-affected countries have been let down is that we ourselves, in high-income countries, are the enemy. We think in a uniform set of explanations and our solutions are not thought through, while most of the funds allocated to Ebola eradication stay in high-income countries as taxes and administrative fees for universities and aid organizations. A recent UN survey estimated that only 40 % of Ebola funds end in the affected African countries. Farmer called it the epidemic that never should have happened and that it was not a natural disaster but "the terror of poverty".. Poverty resulting from disease is a huge global problem, and 200,000 people become incurably poor each year due to health problems and it is believed that over 1 billion of the world's population is moving into swing door poverty due to disease (Chronic Poverty Report 2014: One trillion at risk from 'revolving doors' of poverty). The current ebola epidemic has been followed by an epidemic of orphaned children and irreversible poverty.
IMF role disputed
The International Monetary Fund (IMF) has also been accused of causing the miserable state of health care in Sub-Saharan Africa. A new study from 2015 shows that IMF in sub-Saharan Africa has been instrumental in governments investing more in health than previously. But the clear conclusion is that it is taking place in countries that spent little or nothing on health care and the little increase caused by IMF has therefore not had the effect that was intended or even wished. The picure is not clear and there is a hefty ongoing debate about the IMF role among academics.
Many have tried to excuse the situation in Sierra Leone with a protracted civil war. The focus, however, has in the past six years has been more on why the Ebola-affected countries have not invested more in health care. The explanation is, apart from those already mentioned, that although the economy in some countries actually increased by 6-8%, for example Sierra Leone only succeeded to collect 11% of public expenditure through taxes. Large international companies lured by low corporate tax subsequently organizes tax evasion in great style. Sierra Leone spends about 25 million US dollars a year on health care, but provides 10 times as much: 245 million US dollars, in tax exemptions for international companies. And now firms are reluctant to come back - the basic economics, agriculture and health care system is broken. For comparison it may be mentioned that the International Monetary union has determined that the three Ebola affected countries together have lost over 2 billion US dollars in total revenue until now due to Ebola epidemic.
The way the Ebola epidemic spread has contributed to a second and more terrifying variegated aspect of what even low-income countries must prepare for. Over 65% of the Earth's population now lives in cities and most live in disorganized slums without administration, sanitation, health care or education. The huge population density makes suburban slum areas an epidemic paradise, no bar for Dengue and Chikungunya viruses requiring mosquitoes for transmission, but also for more wild and rare viruses such as Ebola, which infects from person to person. There has not previously been Ebola virus in West Africa and not in urban areas as was the case with the current epidemic. The epidemic spread rapidly across borders and from remote rural areas to large urban slum-like suburbs where there is a normal health with built-in reporting of cases of disease. West African health care was prepared for neither the pattern nor the speed of the epidemic. It turned out to be such a difficult task to put potential patients in quarantine that governments tried to put the military in action - leading to conflict escalation between population and authorities. Some parts of Guinea are still struggling with mistrust that Red Cross workers are continuously confronted with. Several experts discussed the Ebola epidemic in a panel on the recently DAVOS conference and it was agreed that what surprised the most was how quickly the epidemic spread and how quickly the weak health, and international aid organizations, lost their grip on the epidemic because it all went so quickly. Ebola epidemics are always explosive in the beginning, but the speed of this one was difficult to understand because it played out in a different context than we were accustomed to and therefore completely unprepared for. The basic level of quality in health care in the affected countries was simply too low – and far away from what WHO and other organizations anticipated. Even the simplest hygiene routines were not routines and standard fluid therapy was far from standard. The bad news is that so it was before Ebola epidemic – and it was no secret. Even the health authorities in Sierra Leone admitted that they thought
health care workers were better informed – but they weren’t which is a bit late to realize when the epidemic has filled the hospital wards. The structures that should be in place, healthcare and government, was largely absent. That was the international organizations not prepared for - they assumed they were there, and functional, but they were also wrong on this point. Looking at accounts from previous Ebola outbreaks it looks as if the global community and local governments keep repeating the same mistakes and keep ignoring previous experiences: the 2000 Ebola outbreaks in Gulu developed within weeks while previous outbreaks had taken months to develop, some outbreaks spread to towns even then so the present urban epidemic was not the first time as has been pointed out. The Gulu outbreak was eventually stopped by: calling in WHO expert teams immediately  instead of waiting for a broader international appeal to have its (slow) effect, setting up the first field lab, government involvement and hospital isolation of cases and suspected cases accompanied by wide spread public communication that was supported by public officials and ministers and therefore had more public strength. None of these well documented experiences were used in West Africa. Many of the mistakes that were made during the earthquake in Haiti  have also been repeated in 2013 in West Africa. And for that matter the same kind of mistakes that were made when measles sailed to Greenland 60 years ago, or in the early years of the African HIV epidemic when African peacekeeping forces with rocketing HIV prevalences were deployed to rural Africa border areas, and when an already collapsed health system in Haiti met the Nepalese cholera that came with the UN forces. Global health has no brain, but it ought perhaps to have one – preferably a huge one with a rapid powerful executive memory function.

An epidemic of misunderstanding

It was a delaying factor that unsafe funerals and a theoretical risk through game meat was given too much attention in the information that was sent out. People were told they had to go to treatment centers if they were sick, but at the same time they were told that there was no treatment and in many places there were no treatment centres contrary to the official information. In many places patients/suspected cases were rejected for treatment or admittance. It has been shown that the population in situations of such ambiguous health information and widespread fear from past experience are used to take matters into their own hands - whether the international NGOs think it is smart or not, it's on their terms only right to find their own solutions when public health care doesn’t. Even MSF regretted that they focused too much on treatment in the beginning compared to communicating the right information to the population. Health messages must, as always, be adjusted to local conditions, traditions and beliefs. This has now been demonstrated again, but too late.

A new study in The Lancet  analyzing the epidemic it was shown that infection associated with funerals and the spread of infection in hospitals was only a problem at the beginning of the epidemic as a whole 82% of infectious cases took place in the community and 72% between family members. There were a few families who did not cooperate in the beginning of the epidemic, and it sparked the epidemic that health authorities were unable to control the behaviour of these families. When control over the situation was gained hospitals and temporary tent clinics started to play a key role in stopping the epidemic: the isolation of suspects and sick patients works in any epidemic as it has always done. Small scale studies indicate that training of local assistants detecting new cases and equipping them with mobile phones appears to be effective, together with the temporary isolation tents. Transparent body bags for safer funerals has also been shown to be effective both in stopping infection chains and in regaining public trust in health care and authorities. Recent resurgence in Ebola cases in Guinea has been linked to two unsafe funerals underlining the importance of continuous health information and good reporting systems on the ground. There are also established open-source data collection platforms for Ebola control that combine mobile data with google earth etc. Given the lack of data that provides an overview this could fill the information gap in remoter areas.

Even in the US the extent of exploitation by the media and politicians contributed to mass hysteria and continuing fear. Communication was so bad that anthropologist dared to call it “an epidemic of misunderstanding”. It allowed people to fixate on “projectile vomiting, diarrhea and blood coming out of eyeballs instead of reality. The  Dallas’ outbreak never reached epidemic proportions, although the media coverage tried to convince the population
.

New paradigm: prepare for the unexpected
Despite many years of global investment in preparedness against major epidemics, so were the countries most often hotbed of new epidemics, totally unprepared. They were unprepared for the unexpected. Lessons from previous Ebola epidemics, like in year 2000 in Gulu, Uganda it was a clear lesson that Ebola cases can pop anywhere and that should be part of the preparedness planning. In Guinea, Sierra Leone and Liberia they were unable to change gear because there were too few doctors, their health management structures were fragile with poorly trained staff lacking confidence. Hospitals in Europe have gradually learned to deal with any new outbreaks of disease through good routines, but it does not mean that it is the same experience that is needed, for example in West Africa's slums or in remote mountain villages. Nor does it mean that low-income countries, have the resources to undertake such training of doctors and nurses and/or the motivation or capacity to prioritize this over childhood vaccines, HIV-treatment, malaria eradication, tuberculosis case finding or mother-child health. There is no money for it all and low income countries do not feel obliged to prioritize by global interests or standards. The international players knew this, but it has not previously led to the establishment of an international emergency unit to be engaged in unexpected epidemics in unexpected areas.

There have been reports of weak health systems in many of the now Ebola affected countries for nearly 30 years. The towering infant mortality in countries has partly been attributed to poor treatment of newborns, poor medical training, miserable hospital facilities and lack of routines for the most common diseases such as malaria, diarrhea and pneumonia. Maternal mortality is towering in the same countries due to inexperienced midwives and even less experienced obstetricians. Several studies have documented that while sick children are treated initially within the health care system, they end up dying at home after discharge from hospital.

There has also been criticism of the way funds are allocated to health research. The excessive focus on specific fashionable or media-friendly diseases also characterize research priorities has created a
global research funding bias. It's hard to obtain funding for research on equity in health, improvement in existing health care or to ensure smarter use of already known interventions.
Recent reports have shown that many of the rarer of the world's infectious diseases are not very attractive to researchers and research funds. Most of the rarer diseases such as Ebola, has until now only been interesting to two research foundations and
one of which withdrew  from the field shortly before the Ebola outbreak. Those who allocate money for research funds and members of the scientific committees that evaluate research funding applications have a shared responsibility that neglected rare but dangerous diseases are not allowed to fly under the research radar.
Dismantled WHO
Therefore, care must be taken not to dismantle the WHO as the global health board after their somewhat sluggish Ebola efforts. WHO is part of the United Nations and is defined by its member countries that systematically starved WHO budgets. WHO has been criticized for not taking its global responsibilities seriously, calling unruly nations for peace when there was a need for concerted global action. WHO was more of a world leader during the SARS epidemic, but it was perhaps due to the fact that the epidemic required China’s involvement combined with the fact that the epidemic very quickly became a visible reality in the middle of a big city in Canada. That was not the case with Ebola until far into the epidemic. But again only two weeks after the Texas Ebola case hit the media the UN security council made the up to then invisible West African epidemic a global security threat – that was the trick and not something the WHO could have done, no matter how much funding. WHO has recently been described as 7 independent and dysfunctional WHOs. They don’t support or learn from each - especially about disasters such as Ebola. Even now in the present disastrous situation WHO is bound by the influence of national sovereignty: With the resolution of the WHO board in January 2015 they have committed the world's countries to follow existing rules and regulations on international health, so it's nothing new and there is no financial commitment at national level . As long as WHO pretends that diseases such Ebola can be fought in each country separately we will have re-emerging Ebola epidemics - national sovereignty is meaningless when diseases are indifferent to borders. WHO's career system must be tightened up academically and WHO should be strengthened with the technical and financial resources required to tackle unexpected epidemics and the associated training in the countries that need it. That was the clear message from 95 internationally recognized researchers in the prestigious journal The Lancet (Strong comment from 95 scholars globally).
The government of Guinea-Conakry had not done much for the population in the remote border area where the first cases ensued. Sierra Leone had failed to invest in health care and instead spent money on tax exemption for mining and rubber companies and Liberia had not paid for doctors and nurses in six months but when they decided to go on strike to get paid the population got enough of it all and the anger over the Ebola epidemic response was focused on the staff instead of the health authorities or the government. Margaret Chan seems to be more than right: a weak health care system dismantles society. Chan has also pointed out that modern health systems in Africa, must be prepared for what can not be prepared for or predicted. No one had foreseen that the Ebola epidemic within a few months would kill so many national doctors and nurses. Converted to a US context would have been equivalent to an epidemic that within three months killed 70,000 American physicians while authorities was passively watching passively.. It is in stressful situations that we can judge the true performance capacity of health services. While doctors and nurses died due to inadequate procedures, equipment and training the epidemic took a heavy toll on the other routine functions: malaria mortality increased, children were no longer vaccinated and schools were closed. And from a larger perspective (re-) emerging infections are lurking around in the shadow of ebola.




Hidden curriculum of Global Health
Here, the international community, including DANIDA, have a new global and moral responsibility to support and strengthen preparedness for the unexpected. It requires among other things the world wide training of a generation of globally competent doctors, nurses and administrators (Exploring the Hidden Curriculum of Global Health). Unfortunately, a new survey has demonstrated why a little 7 gene virus could overthrow the entire global health community: fewer than one in 10 universities in the UK have systematic training in global health. Hence, DANIDA should prioritize health and global health training as a means and prerequisite of development, globally and nationally. A strong health care system protects against the crises that will inevitably return – in unexpected places, forms and patterns. Disease outbreaks that are ignored become epidemics, and just like the financial crisis was downplayed in the beginning, it is expensive to assume that fragile health care systems in low income countries are prepared for disasters. The current epidemic was ignored and has left a huge bill in the affected countries. Whether it is Ebola, financial crises, rising food prices or natural disasters, a strong health care system is the best medicine to keep a society working together.
A recent updated model predicts that the Ebola epidemic will be over in May 2015. But Zanzibar has eradicated malaria - three times and the last time Margaret Chan was part of the team that claimed malaria cases had vanished from the Island. That was in 2009, in 2013 malaria was back again. Let us prepare for the unexpected by building strong health care that can deal with the real world.
Small virus far from home
A preliminary ‘Lessons learnt’ opinion  published online in The Lancet  on February 10, 2015 has some interesting facts about the West African outbreaks: an emergency stage 3 was never declared by WHO and it is not clear why. There is only one (1!) airline on the planet earth that can transport ebola patients! Questions are raised as to what the most deadly Ebola strain (Zaire) was doing so far away from its homeland? The West African context somehow added to complexity it’s argued: very few doctors, civil war/post-conflict stunning of administrations and health care meaning low trust in government from start, and the extreme mobility of the population compared to east/central Africa may have contributed to complexity. As an MSF worker remarks: “If Ebola suspects moves from location A to location B, suddenly you need to duplicate everything”. The issue of an epidemic in an urban setting: In rural settings, Ebola moves outwards in small steps but in urban environment means unpredictability, the realization that the virus could crop up at any medical facility at any moment as people seeking help head towards the city from the hinterlands. The initial success in Guinea was not true: hidden patients kept popping up while official statistics said the epidemic was over. Because of recent armed conflicts Sierra Leone and Liberia are used to presence of UN organizations and teams which Guinea was not and that may partly have led to the confrontations seen in Guinea. By end of 2014 only 50 % of planned treatment centers in Guinea were running. A more outspoken and top-down approach in Liberia was probably in hindsight better suited for suburban/urban case detection and quarantines (and a clear support from the president). The softer and less pro-active approach in Sierra Leone may have contributed to the continuing epidemic. When Ebola popped up in Liberia MSF didn’t have more staff – they were all engaged in Guinea and Sierra Leone – international support was not available at that time. This contributed to a delayed response and fueled the epidemic in Liberia. When international support was made available it was mostly a question of organizing, training and maintaining and overview – help came too late and that complicated the situation.
Next step: global mismanagement
In 1966 an international team, the Smallpox Eradication Unit, was formed under the leadership of Dr. Donald Henderson. Subsequently, the World Health Organization intensified Smallpox Eradication the global campaign. The Smallpox Eradication Unit that wiped out the disease had 10 employees and no fax or internet! Dr. Henderson said in a speech in 1978 when smallpox disease was officially declared eradicated, that the next disease that to be eradicated was global mismanagement.

We may finally combat Ebola and the countries affected have survived. But they lost a lot of men, women, parents, health workers and children because the global community was late – nearly too late to save what’s left. New outbreaks in new areas, unsafe burials and Red Cross workers still attacked in Guinea this week. Delayed and not very appropriate health information has been difficult to sell to people that for many good reasons had already long before the present epidemic lost trust in their health care system, government and the international community. Let’s construct a learning brain for global health so we can prepare for the unexpected. As experienced Ebola nurse Tony Walther Onema says: this thing can happen anywhere
(PIA: link til interview her).

fredag den 24. april 2020

Virus spreder fremmedgørelse, men folkesundhed kan genskabe sammenhængskraften





Alle epidemier er forskellige indtil de er ens. Epidemier formes af de samfund og miljøer de spreder sig i, men der er aldrig tale om én epidemi, men om bølger af epidemier. Virus spreder frygt før den spreder sygdom. Men virus blotlægger også nogle holdninger og strukturer, som vi helst var foruden. Forløberen for den virale epidemi er en epidemi af rygter, sladder og frygtscenarier om hvad der venter os. Den første epidemi efterlader ingen immunitet, så mens vi venter på katastrofen inkuberer vi alle hinanden med forventningen om at jorden vil åbne sig under os og at enhver må beskytte sig selv. Vi hamstrer gær, toiletpapir og våben, æder enorme mængder af mad, begynder at ryge igen og kroppen sprittes af, indvendigt og udvendigt, på time-basis. Det ser ud til, at epidemier får fornuften til forsvinde og vi vender tilbage til middelalderens triste forklaringsmodeller: skæbnetænkning, hjælpeløshed, mistro, mystik, magisk realisme, bøn, profeti og forbandelser, der var almindelige i pesten og koleraens tid. Samtidig har skabsprofessorer, kändisser og lommefilosoffer haft travlt med at masseproducere mentale værnemidler, men har leveret selvforherligende absurd irrelevante gætterier, som en panikparat stærk menings- og kontaktsøgende befolkning ikke desto mindre har taget til sig som effektivselvmedicinering. Problemet er at frygt avler frygt og gør os afhængige: vi skal have vores daglige medicin og dosis skal øges med jævne mellemrum for at kompensere for mætningen. Vi gyser over den lille virus, der kommer og tager os som det monster under sengen vi troede ikke fandtes. Andre svælger i dødsforagt og Weltsmerz, som de unge på Goethes tid. Vi kommer til at have en generation af ældre der døde uden at komme ordentlig afsted, som det bla. er tilfældet i Irland, hvor ”send off” er en central del af livet. Andre steder i verden fører ad hoc ukonventionelle begravelser under konflikter og epidemier til at afdødes hjemløse ånder farer rundt som forstyrrende fremmede iblandt os. Uhyggen er rettet mod den udefra kommende fremmed fare, der spreder sig usynligt – en ubuden gæst med maske på, en sygdom der opfører sig aparte og uvant. En uindbudt gæst. En ubehagelig tilflytter. Den taler ikke vores sprog, hører ikke efter og som en lus i skindpelsen splitter den os op i dem der er immune og må færdes frit og dem der er farlige som skal spærres inde. Virus er fremmed og fremmedgør os overfor hinanden.
Menneskers evne til at se forskellen mellem hvad der er snavset og rent har altid bidraget til sygdomsforebyggelse. Det, der startede som et simpelt men væsentligt element i menneskelige overlevelse, blev efterhånden bundet til kulturelle og sociale sammenhænge, efterhånden som samfundet udviklede sig. Som det er blevet observeret i mange tidligere sygdomsudbrud, har en folkesundhedsterminologi såsom hygiejne stærke sociale konsekvenser, der kan og i nogle tilfælde er blevet til etnisk udrensning og folkemord. Da et grundlæggende element i hygiejne er eliminering af en smitte, kan det let bruges til at retfærdiggøre eliminering af en opfattet menneskelig smitte. Det så man f.eks. under koleraepidemien på Haiti, hvor hygiejne altid har været sammenfiltret i fortælling om ”rengøring” - hvad enten det er en etnisk eller en viral trussel, der skal inddæmmes og fjernes. Værdier om renhed er sociale værdier der kodes tidligt i livet.
Folk køber toiletpapir, fordi de er bange for deres egen beskidte skæbne: det vil sige viden om, at vi i sidste ende vil dø. Når vi midt i pandemien føler vores egen dyriskhed, og derfor vores dødelighed, bliver vi ramt af frygt. Mary Douglas (2003) definerer i sin bog Purity and Danger snavs som ”stof på et forkert sted”, som noget, der udfordrer alle vores klassifikationer, den rækkefølge, vi giver tingene og derfor den stabilitet, som vi er afhængige af især under en epidemi. Det, vi lever igennem nu, er netop det: en begivenhed, hvor alt synes at være på en forkert plads, og det ernærer en social angst for at ordne, for at undgå snavs, forhindre "smitte" og derfor usikkerhed. Vi renser alt, hvad der er inden for vores rækkevidde, uanset hvad der truer med at ribbe os for vores lille rest af menneskelighed: vi er jo ikke dyr. Afsky mod vores dyriske kropsvæsker og frygt for dødelighed varierer mellem kulturer, men definerer også hvad der er fremmed og hvad der er sikkert og genkendeligt. Det franske dekret i 1600-tallet om at det ikke længere var tilladt at lave afføring i det offentlige, var en adskillelse af det private og det offentlige. Afføring skiller ikke bare mennesker fra dyr, men er også en social aktivitet, hvis værdier skiller os fra andre – de fremmede, de smitsomme i det offentlige rum.
Sammenhængen mellem sygdom og fremmedhed er ikke ny. Når en epidemi spreder sig, ligger det indkodet i os at det er noget fremmed, der har sneget sig ind på os, noget der er hentet til landet af fremmede bærere. Nogen skal have skylden. Den angst der naturligt følger med en epidemi dulmes ved at styrke sammenholdet og sammenhængskraften ved hurtigt at identificere en fremmed, en fjende, der har ansvaret for forstyrrelsen af den sociale orden. Højindkomstlandene verden over lukkede deres grænser for indrejse af ikke-statsborgere. USA lukkede i starten kun for rejsende fra nøje udvalgte lande og viste dermed hvor tæt mikrober, normer, politik, konflikter og magt hænger sammen. De forstærker og faciliterer hinanden, giver hinanden nye muligheder. Biologi og politik lever og påvirker hinanden i det samme øko-system: biopolitik. Reaktioner mod pandemier kan sandsynligvis lige så godt skabe nye sociale fællesskaber som det kan gøre os til stærkt isolerede ensomme individer med galopperende hudsult. Man taler om 'Det virale forstørrelsesglas', der, på pinagtig vis, tydeliggør og udvider eksisterende sociale uenigheder, forskelle og begrænsninger.
Mens verdens opmærksomhed er blevet afledt af Corona, har autokrater haft en fest. Befolkningen vil reddes fra den fremmede fare og dét er stærke mænds spidskompetence. Når man har befolkningens fulde opmærksomhed, har man også åbnet for sluserne: populismens grundværktøj, bevidst tvetydighed, har haft kronede dage hvor politikere og medier skiftevis har lanceret virus som både et migrantproblem, et laboratorievirus fra Kina og et fupnummer. Herskere har indset, at det nu er det perfekte tidspunkt at få gjort alle de ting der normalt er skandaløse, sikkert i den forståelse, at resten af verden næppe vil bemærke det. Mange drager fordel af pandemien for at få tildrage sig mere magt, til at få sat oppositionsmedlemmer i fængsel og til at slå ned på migranter ved at give de, skylden for at epidemien er kommet til landet. Underforstået, at epidemien ikke ville have ramt det sunde folk, hvis der ikke var kommet fremmede, migranter, til landet. Med samme hastighed som epidemi udviklede sig, har wannabe despoter, trin for trin, politiseret domstolene, kriminaliseret uafhængige medier, fjernet akademisk frihed, svinebundet civilsamfundet og sat ild til fremmedhad. Autokrater og mikrober ser hver deres muligheder i katastrofernes fremmedgørelseselement.
Det rejselystne borgerskab slæbte virus med sig hjem fra eksotiske rejsemål, charterskibe og skiferier og bragte som turister det til det forsvarsløse afrikanske kontinent. Hesteshows har været mistænkt i England og i Danmark for at bidrage til den tidlige smittespredning. Men dem, derhjemme må slæbe det største sygdomslæs, og den største del af dødeligheden, er dem der ikke har råd til skiferier og heste, dem der ikke har en bolig med 3 badeværelser hvor man kan isolere sig, dem der ikke har sommerhuse og dem der ikke har mulighed for hjemmearbejde.
Den aktuelle pandemi er toppen af et isbjerg. Den er en del af et større komplekst puslespil, hvor brikkerne blev skabt for mange år siden. Mange af brikkerne er utydelige og det er kun få områder af puslespillet vi har fået lagt. Men det samlede billede har vi svært ved at ville se. Indimellem får vi et blik ind i den verden vi konstant forandrer, men vi lykkes ikke med at fastholde det store overblik – vi får ikke sat brikkerne sammen. Ofte fordi der starter et andet krisescenarie. Epidemier er ofte et resultat af tæt kontakt mellem vilde dyr, mennesker og husdyr. I takt med at der fjernes mere og mere af de vilde dyrs skove stiger risikoen for direkte kontakt med mennesker og dermed eksponering for dyrevirus. Fødevareknaphed og høje priser gør vildt kød attraktivt og mange landmænd er både jægere og husdyrfarmere. Coronavirus truer sammen med tørke med at reducere verdens fødevareproduktion med 17 % over de næste årtier. I skyggen af epidemier venter ådselsæderne: underernæring, mæslinger, malaria, tyfus, kolera og dengue.
Konflikter mellem lande og befolkningsgrupper har deres rødder i naturen. De rwandiske folkedrab på en grund af dybe etniske spændinger blev forværret af det kroniske stress efter langvarig tørke og hungersnød, og det blev påvist at vold var langt mere sandsynligt, når det gennemsnitlige daglige kalorieindtag var mindre end 1.100 pr. Dag. Konflikten i Syrien kom efter en rekordtørke og efterfølgende massemigration ind til byerne. Vi oplever i stigende grad at epidemier og kriser følger tættere og tættere på hinanden og i flere tilfælde overlapper hinanden: oversvømmelser, tørke, mygge & flåt overførte virusepidemier, hungersnød, ekstrem varme og konflikter. I fremtiden kommer pandemier ikke alene - de kommer ikke én ad gangen med årtiers mellemrum. Den global temperatur stiger, mikroberne elsker det & epidemier står på nakken af hinanden for at komme til. Den global ulighed stiger ligeledes, og sociale konflikter står sammen med urbanisering til at blive grobund for sociale vilkår der er perfekte vækstmedier for kroniske og smitsomme sygdomme.
Vi har fået et wake-up call mange gange siden den spanske syge med fugleinfluenza, svineinfluenza, SARS, Ebola og MERS epidemierne, men politikerne har i årtier trykket på ‘Snooze-knappen’ og lagt sig til at sove igen. De kommende pandemier kommer ikke alene, der er mange andre epidemier der sniger sig rundt i skyggen og vi skal stå tidligt op hvis vi ikke vil overrumples igen. Vi er politisk og socialt ikke særlig godt forberedt på næste epidemi, men hvad værre er, så kræver det et jernhelbred at komme levende gennem en pandemi og vi er som mennesker i utroligt dårlig form til den næste pandemi med vores løbende epidemier af diabetes, hjerte-karsygdom, forhøjet blodtryk og overvægt. Der har desuden været udtrykt relevant bekymring for at Coronapandemien kan have forværret antibiotikaresistens, da man i mangel på antivirale behandlingsmuligheder kun har haft det alternativ at beskytte de syge med, ofte meget bredspektrede, antibiotika.
Selv forskningsverdenen er gået i selvsving godt støttet af forskningsfonde, der har spyttet 100 af millioner kroner ud til Coronaforskning. Pandemien er blevet kaldt en evidensmæssig hundredeårs hændelse. Vacciner, piller, serum og værnemidler skal pludselig testes inden virus forsvinder igen mens videnskabernes sædvanlige værdier om troværdighed og mening neddæmpes i en bedre sags tjeneste. Klorokin slog COVID19 patienter ihjel og andre lovende behandlinger viste sig uvirksomme.  I skrivende stund har verdens største sælger af slangeolie, der også kalder sig selv ”kongen over alle ventilatorer”, Trump, foreslået at man kunne bestråle de syge med UV-lys og give dem indsprøjtninger med desinficerende midler. Få timer efter måtte de amerikanske producenter af de desinficerende rensemidler Dettol og Lysol, været nødt til at udsende en pressemeddelelse, hvor de må præcisere, at deres produkter under ingen omstændigheder må drikkes eller injiceres i blodårer. Lysol anvendes til at desinficere toiletter men har historisk en enkelt gang, med dødelig udgang, været forsøgt anvendt til at behandle infektioner.
Det er hele tiden de gamle u-teknologiske og u-farmakologiske indsatser der vinder: håndhygiejne, fysisk afstand og hold de syge fra de raske. Ganske almindelige karantæne regler opfundet for længe siden og som har stået deres prøve i århundreder.
Folkesundhed er fremtiden, ikke på grund af COVID-19, men fordi vores immunitet, sundhedsvæsner og sociale kontrakter stresstestes af pandemier. Men det er også en virus der viser hvor meget vi i virkeligheden er afhængige af hinandens nærvær. Virus har desuden vist at man ikke kan slå pandemier ned med symbolpolitik. En folkesundhed, der kun omfatter flertallet, giver virus en perfekt mulighed for at ramme hele befolkningen. Coronavirus minder os om, at vi alle har brug for hinanden; at det måske var et kollektivt selvmord at tro på Margaret Thatcher da hun sagde, at "der ikke findes noget som kan kaldes et samfund" - styrkelse af folkesundheden er bogstaveligt talt et spørgsmål om liv og død. Folkesundheden binder os sammen som ét samfund.

Kilder:
Ioannides, J. P. A. 2020. A fiasco in the making? As the coronavirus pandemic takes hold, we are making decisions without reliable data. STAT[Online]. https://www.statnews.com/2020/03/17/a-fiasco-in-the-making-as-the-coronavirus-pandemic-takes-hold-we-are-making-decisions-without-reliable-data/
Epidemiological Publics? On the Domestication of Modelling in the era of COVID-19 http://somatosphere.net/2020/epidemiological-publics-on-the-domestication-of-modelling-in-the-era-of-covid-19.html/
The toilet paper panic: coronavirus and reflections from confinement http://somatosphere.net/2020/the-toilet-paper-panic-coronavirus-and-reflections-from-confinement.html/
Mary Douglas. Purity and danger. Routledge 1966.
Laporte, D. (2002). History of Shit. Cambridge and London: The MIT Press.
Desperation: Sultne mennesker trodser afstand og smittefare https://politiken.dk/udland/art7760139/Sultne-mennesker-trodser-afstand-og-smittefare
Covid-19 May Worsen the Antibiotic Resistance Crisis. https://www.wired.com/story/covid-19-may-worsen-the-antibiotic-resistance-crisis/
Bill Gates. Pandemic I: The First Modern Pandemic. The scientific advances we need to stop COVID-19 https://media.gatesnotes.com/-/media/Files/Health/Pandemic-I-The-First-Modern-Pandemic
Orban’s emergency powers hit opposition funding https://www.ft.com/content/5ba8a724-871c-480e-930d-ed9b0469cafe
In Pictures: Police ticket protesters for violating gathering ban as Hong Kong marks 9 months since Yuen Long mob attack https://hongkongfp.com/2020/04/22/in-pictures-police-ticket-protesters-for-violating-gathering-ban-as-hong-kong-marks-9-months-since-yuen-long-mob-attack/
Stopping the authoritarian rot in Europe https://euobserver.com/opinion/148147
Leaked map shows postcode next to Cheltenham Racecourse had highest number of coronavirus hospital admissions on April 3 https://www.gloucestershirelive.co.uk/news/cheltenham-news/leaked-map-shows-postcode-next-4071259
“Hygiene” is the Future: Lessons from “Post”-Cholera Haiti http://somatosphere.net/2020/hygiene-is-the-future-lessons-from-post-cholera-haiti.html/
How Trump’s Foot Soldiers Tried to Flood the Country With Millions of Doses of Hydroxychloroquine. https://www.thedailybeast.com/how-trumps-foot-soldiers-tried-to-flood-the-us-with-millions-of-doses-of-hydroxychloroquine
The makers of Dettol have had to issue a press release saying you shouldn't inject its products into your veins https://twitter.com/tkbeynon/status/1253616993061797889?s=20
Coronavirus: Outcry after Trump suggests injecting disinfectant as treatment https://www.bbc.com/news/world-us-canada-52407177

tirsdag den 3. december 2019

Bøder til dovne patienter - udeblevet eller ikke inviteret?


Patienter udebliver, og igen og igen overvejer politikere at indføre dummebøder, hvis patienter udebliver. Men det virker ikke og skaber ulighed, og næsten halvdelen af udeblivelserne skyldes hospitalerne og sundhedsvæsenet selv


Bøder til patienter, der udebliver, virker ikke og har en social slagside.
Bøder bygger på en mangelfuld forståelse af sundhedsvæsnets egen rolle i udeblivelser, og hvordan patienter oplever mødet med sundhedsvæsnet. Bøder vil kun forværre den aktuelle situation. Men der er løsninger, som ovenikøbet kan bringe patienterne mere i centrum af det sundhedsvæsen, der så gerne vil forstå patienterne, men har så svært ved det.
Udeblivelser er et meget komplekst problem, og det løses ikke med pisk. Problemet skal forstås i en samlet helhed, hvor sundhedspolitikere og de ansatte i sundhedsvæsnet fordomsfrit inddrager deres egen rolle og adfærd, sammen med økonomi, organisation, geografiske forhold og den evidens, der faktisk er på området (1).
I psykiatrien er man begyndt at få øjnene op for hvilken rolle, kvaliteten af den terapeutiske alliance har i udeblivelser, sammen med patientens opfattelse af hvor effektiv og behjælpelig psykiateren er, og om patienten tidligere har fået skældud for at glemme medicinen eller en aftale (2).
Men vi har ikke tidstro dynamiske målinger af patienttilfredshed efter hver kontakt, og derfor har vi ingen informationer om betydningen af de relationelle forhold i udeblivelser.

Hospitalet fejler

Patienter, der udebliver, har hyppigere fået en aftale med kortere varsel end andre patienter, ligesom de hyppigere er udsat for, at hospitalet har ændret deres aftale med kort varsel, og at kommunikationen med sygehuslægen var mindre god. En ud af tre udeblivelser skyldes således mangelfuld eller forkert hospitalsadministration af patientaftaler (breve ikke sendt, forkerte tider, forkert booking, brev når frem efter aftale, forkert mødested) (3).
En hudklinik fandt ud af, at mange udeblivelser skyldtes unødvendige kontroller, kontroller patienterne ikke havde bedt om eller lavt udbytte af tidligere kontrol (4). Samme klinik reducerede udeblivelser ved at have åbne klinikker og selvbooking. I en stor undersøgelse af udeblivelser fra England fandt man at 25 procent af de udeblevne aktivt og vedholdende havde forsøgt at ændre deres aftale, men havde enten ikke held med at komme igennem, eller også blev deres anmodning ikke registreret og efterkommet (5).
I en kvalitativ undersøgelse blandt patienter fandt man, at de vanlige spørgsmål om årsager til patientudeblivelser ikke svarede til virkelighedens udfordringer. Patienter havde flere følelser end forventet omkring hospitalsbesøg, som kunne påvirke motivation: Patienter kunne være bange for lægen eller bange for at få skældud baseret på erfaringer. Patienter var ofte forvirrede over aftalesystemer, ombookninger og tvetydige breve. Patienter vurderer, om transport, angst, frygt for eventuelle indgreb, forventet udbytte og muligheden for negativ dialog samlet set er besøget værd (6).
En stor øjenafdeling fandt, at 27 procent udeblivelser skyldtes administrative sygehusfejl, mens otte procent skyldtes, at patienten faktisk havde aflyst aftalen eller bedt om at få en anden aftale uden at det var blevet registeret, Fem procent skyldtes, at transporten ikke dukkede op, og fire procent skyldtes, at patienten havde flere samtidige aftaler på sygehuset (7).
Et studie fandt, at udeblivelser ofte skyldtes meget lang ventetid i kombination med meget langvarige symptomer og foreslog, at sygehusene selv kunne reducere udeblivelser ved at reducere ventetid hos bestemte symptommønstre (8). En ud af fem udeblivelser skyldes mangelfuld kommunikation fra sygehusets side (9).
I en undersøgelse af udeblivelser fandt man, at 41 procent af udeblivelser skyldes fejl fra hospitalets side, bl.a. at patienterne ikke havde fået besked, at sygehuset selv havde aflyst aftalen uden at slette den, dobbelt booking i flere afdelinger, patienten har ikke bedt om tid, ingen parkeringspladser, eller at afdelingen var så forsinket, at patienten måtte forlade sygehuset pga. andre gøremål (10).
Et studie fandt at patienter, der var blevet set af en læge, som patienten ikke fandt erfaren nok, oftere udeblev end andre (11). I en anden undersøgelse af udeblivelser til kirurgisk kontrol efter traumeindlæggelse fandt man, at 37 procent af udeblivelser alene skyldtes, at kirurgen eller sygeplejersken ikke kommunikerede med hinanden og/eller patienten om aftalen, og at den derfor blev misforstået (12).
Dvs. at en række studier samstemmende finder, at minimum 35-40 procent af hospitalsudeblivelser skyldes en lang række fejl i kommunikation fra sygehusets side, fejl i patientadministration, ligegyldige sygehusaftaler, manglende tilgængelighed, nedsættende adfærd, langsomme postgange og andre administrative forhold, som patienter ikke er herre over, og derfor heller ikke skal bøde for.

Afhænger af lægen

Der er signifikant lavere udeblivelse ved tider om formiddagen end senere på dagen, og nogle henvisende læger har signifikant flere udeblivelser end andre (13). I psykiatrien har man også fundet, at risikoen for udeblivelse afhænger af hvilken læge, der har henvist patienten (14).
I en almen praksis blev patienter, der udeblev, spurgt næste gang, hvorfor de udeblev: Halvdelen angav personlige grunde som sygdom, dødsfald, rejse, eller at de ikke kunne få fri fra arbejde, 14 procent havde fået en forkert tid, eller fik først brevet efter aftalen (15).

Social slagside

Der er social slagside i udeblivelser fra f.eks. hjerterehabilitering, men det har man på Vejle Sygehus mindsket gennem tværsektoriel forløbskoordinering (16).
Etniske minoriteter er overrepræsenteret i udeblivelser, men ofte af andre årsager end majoritetsbefolkningen, hvor bl.a. transportbarrierer og manglende viden om hensigten med kontrollen er de væsentligste årsager (17). Vi fandt i Indvandrermedicinsk klinik i en kvalitativ undersøgelse, at udeblivelser hang sammen med læsefærdigheder, økonomi og transportforhindringer (18). I Indvandrermedicinsk klinik på Odense Universitetshospital fortæller patienterne nu, at de er bange for tolkegebyret:: At de ikke kommer til samtaler, hvor de ved, at, der ikke er bestilt tolk; hvor de har erfaring for, at der ikke er afsat god tid, eller hvor de har erfaring for, at de ikke forstår, hvad der foregår.

Minimum fem målrettede interventioner virker

Det besynderlige ved den politiske interesse for bøder til patienter er, at interventioner, der er målrettet de specialespecifikke årsager til udeblivelser, faktisk virker. En håndkirurgisk klinik etablerede et ambulatoriespor, der var åbent, og hvor patienter, der udeblev, selv kunne booke en tid, hvorved udeblivelser blev reduceret fra 16 procent til 11 procent (19).
En gastroenterologisk klinik på Herlev sygehus halverede antallet af udeblivelser med en telefonopringning en uge før aftalen (20).
Et review fandt, at telefonisk påmindelse i gennemsnit reducerede udeblivelser med 34 procent, men at automatiserede opkald virkede betydeligt dårligere end fysiske opkald (21). Børneafdelingen i Viborg ændrede deres retningslinjer og indførte påmindelse med sms. Det virker, mens børneafdelingen i Kolding, baseret på egne erfaringer, sendte påmindelsesbreve ude med signifikant effekt (Etniske minoritetspatienter er overrepræsenteret blandt udeblivere i alle undersøgelser (22).
I et Cochranereview dokumenteres det, at SMS, e-mail, frankerede svarkuverter med bekræftelse og selv-booking ambulatorier alle reducerer udeblivelser signifikant (23).
Der er med andre ord minimum fem veldokumenterede og simple interventioner, der alle nedbringer udeblivelser, og som sikrer lighed.

Sundhedsvæsenet bør gribe i egen barm

Jeg foreslår, at man bruger den viden og de værktøjer, vi allerede har, til at nedbringe antallet af udeblivelser i stedet for at udsætte udsatte patienter for endnu et forsøg med udeblivelsesgebyrer, der med garanti vil gøre dem endnu mere udsatte og øge uligheden i sundhed. Der er ikke ensartede årsager til udeblivelser mellem sygehusspecialerne eller i almen praksis, og løsningen er ikke one-size-fits-all. Regionerne må tilbage til evidensen og finde hullerne i den, før de kommer med unyttige løsninger.
Næsten halvdelen af udeblivelser skyldes administrative og kommunikative mangler i sundhedsvæsenet, dårlige oplevelser med sygehuspersonale og manglende viden i sundhedsvæsnet om, hvilke patienter der udebliver indenfor hvert speciale og hvorfor.
Sundhedsvæsenet bør gribe i egen barm, før man begynder at udstede dummebøder til patienter, der udebliver, fordi sygehusene ikke selv kan finde ud af bedre kommunikationen med patienterne. Patienter gider ikke komme til ligegyldige aftaler, de ikke har bedt om, og de ønsker ikke at få skældud. Hér der er et par lavt hængende billige frugter, som regionspolitikerne er velkomne til at plukke.
Ellers ender det med, at patienterne begynder at idømme sygehuset bøder.

(Bragt første gang i sundhedspolitisk tidsskrift 29.11.2019 - https://sundhedspolitisktidsskrift.dk/meninger/kommentarer/2779-maske-er-det-patienterne-der-skal-idomme-sygehuset-boder.html)


Referencer
1. Griffin, S. J. "Lost to follow‐up: the problem of defaulters from diabetes clinics." Diabetic Medicine 15.S3 3 (1998): S14-S24
2. Mitchell, Alex J., and Thomas Selmes. "Why don't patients attend their appointments? Maintaining engagement with psychiatric services." Advances in psychiatric treatment 13.6 (2007): 423-434
3. Mitchell, Alex J., and Thomas Selmes. "Why don't patients attend their appointments? Maintaining engagement with psychiatric services." Advances in psychiatric treatment 13.6 (2007): 423-434
4. Stone, Christopher A., et al. "Reducing non-attendance at outpatient clinics." Journal of the Royal Society of Medicine 92.3 (1999): 114-118
5. Neal, Richard D., et al. "Reasons for and consequences of missed appointments in general practice in the UK: questionnaire survey and prospective review of medical records." BMC family practice 6.1 (2005): 47 
6. Lacy, Naomi L., et al. "Why we don’t come: patient perceptions on no-shows." The Annals of Family Medicine 2.6 (2004): 541-545
7. Potamitis, T., et al. "Non-attendance at ophthalmology outpatient clinics." Journal of the Royal Society of Medicine 87.10 (1994): 591
8. Dickey, William, and James I. Morrow. "Can outpatient non-attendance be predicted from the referral letter? An audit of default at neurology clinics." Journal of the Royal Society of Medicine 84.11 (1991): 662
9. Bottomley, W. W., and J. A. Cotterill. "An audit of the factors involved in new patient non‐attendance in a dermatology out‐patient department." Clinical and experimental dermatology 19.5 (1994): 399-400
10. Stone, Christopher A., et al. "Reducing non-attendance at outpatient clinics." Journal of the Royal Society of Medicine 92.3 (1999): 114-11
11. Murdock, A., et al. "Why do patients not keep their appointments? Prospective study in a gastroenterology outpatient clinic." Journal of the Royal Society of Medicine 95.6 (2002): 284-286
12. Aaland, Mary Oline, Kyle Marose, and Thein Hlaing Zhu. "The lost to trauma patient follow-up: a system or patient problem." Journal of trauma and acute care surgery 73.6 (2012): 1507-1511
13. Cohen, Arnon D., et al. "Health provider determinants of nonattendance in pediatric otolaryngology patients." The Laryngoscope 115.10 (2005): 1804-1808. Og Cohen, A. D., et al. "Nonattendance in a dermatology clinic–a large sample analysis." Journal of the European Academy of Dermatology and Venereology 22.10 (2008): 1178-1183
14. Mitchell, Alex J., and Thomas Selmes. "A comparative survey of missed initial and follow-up appointments to psychiatric specialties in the United Kingdom." Psychiatric Services 58.6 (2007): 868-871
15. Verbov, J. "Why 100 patients failed to keep an outpatient appointment-audit in a dermatology department." Journal of the Royal Society of Medicine 85.5 (1992): 277
16. Hansen, V. B., Haslev, V. P., Kring, A., & Buch, M. S. (2014). Inter-sectoral coordination of rehabilitation can reduce the number of dropouts from chronic heart disease courses. Ugeskrift for laeger, 176(5)
17. Gatrad, A. R. "Comparison of Asian and English non-attenders at a hospital outpatient department." Archives of disease in childhood 77.5 (1997): 423-426. og Collins, Jacinta, Nick Santamaria, and Lexie Clayton. "Why outpatients fail to attend their scheduled appointments: a prospective comparison of differences between attenders and non-attenders." Australian Health Review 26.1 (2003): 52-63
18. Abdulkadir, Leila Saud, Ida Nygaard Mottelson, and Dorthe Nielsen. "Why does the patient not show up? Clinical case studies in a Danish migrant health clinic." European Journal for Person Centered Healthcare 7.2 (2019): 316-324
19. Stone, Christopher A., et al. "Reducing non-attendance at outpatient clinics." Journal of the Royal Society of Medicine 92.3 (1999): 114-118
20. Jeppesen, Maja Haunstrup, and Mark Andrew Ainsworth. "Telephone reminders reduced the non-attendance rate in a gastroenterology outpatient clinic." Dan Med J 62.6 (2015): A5083
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mandag den 25. november 2019

Alle taler om ulighed i sundhed, men ingen gør noget ved det




Sundhedsminister Heunicke har lagt sit hoved på blokken og sagt at han vil bedømmes på om han lykkes med at gøre en alvorlig indsats mod ulighed i sundhed. Men ved ministeren nok om ulighed?


Man dør ikke af at være fattig, kort uddannet, mand eller psykisk syg. Man dør heller ikke af sit postnummer. Man dør derimod af konsekvenserne, dvs. man dør af den måde faktorerne hver især begrænser den enkeltes viden og handlemuligheder. De har betydning for ens evne til at få den hjælp man skal have og for den kvalitet man oplever i behandlingen i kommunen og sundhedsvæsnet.
Fattigdom indsnævrer den mentale båndbredde fordi bevidstheden anvendes til at bekymre sig om den daglige økonomi og til at lægge kortsigtede strategier, der sjældent når længere end 1 uge ad gangen. Fattige har fattige valgmuligheder, ofte pest eller kolera, men vi skælder dem ud, når de vælger pest og vi skælder dem ud når de vælger kolera – uden at forstå deres indskrænkede valgmuligheder. Enten skal de købe medicinen eller også skal de købe en retur busbillet til kontrol på sygehuset for at få skæld ud over at de ikke tager medicinen. Vi ved ikke præcist hvordan socialt mindre velstillede påvirkes i deres beslutningsprocesser, vi kan gisne, men der mangler forskning på området.
Udover at lære at regne, læse og skrive, så har skolegang mange skjulte effekter. Man lærer at forhandle, man lærer at opsøge viden og man lærer at forstå kroppen og samfundet. Men man får også et stærkt netværk af venner, der også har uddannelse. Man bliver bedre til at forhandle sin egen sandhed igennem og man ved man har et stærkt socialt netværk bag sig. De veluddannede får mere for pengene i mødet med sundhedsvæsnet. De involveres mere i samtalerne, inviteres oftere til at bidrage med deres oplevelser og holdninger og får flere behandlingsmuligheder. De er automatisk i centrum. Der er evidens for at der foregår forskelsbehandling indenfor sundhedsvæsnet lige fra forebyggelse over behandling til genoptræning. Men vi ved ikke helt hvordan det udspiller sig. Her mangler der også forskning.
Social kapital er en anden måde at bedømme ressourcer på. I flere studier har social kapital vist sig at være et bedre for de forskelle i ulighed vi observerer. Det at have familie og venner man kan stole på i enhver henseende fører både til bedre egenomsorg men også mere rettidig kontakt med sundhedsvæsnet ved kræftsymptomer, hjertesygdom og ved genoptræning. Social kapital hænger også sammen med hvor tidligt og hvordan man tager patientrollen på sig. Men sammenhængene er stadig tågede og der er behov for mere præcis viden om mekanismerne.
Ensomhed er en dræber. I et nyt systematisk review fandt man at ensomhed er farligere end både inaktivitet, alkoholoverforbrug og overvægt og svarer i tabte leveår til at ryge 15 cigaretter dagligt. Der er ingen tvivl om at tobak, overvægt og manglende motion er vigtige faktorer i folkesundheden, men det er tankevækkende at en så klokkeklar dræber som ensomhed bekvemt formår at flyve under radaren hos både forskere og sundhedspolitikere.
Sygdomme optræder ofte samtidigt hos patienter, men især mennesker med kort uddannede og lav indkomst er ramt af fænomenet. Sygdomme spiller hinanden værre end de er hver især. Det betyder at multisyge ofte er mere syge end de ville have været. Samtidig ved man at sygdomme spiller uheldigt sammen med sociale vilkår, så diabetes og KOL-lungesygdom er værre at have i ét postnummer end i et andet (mere velstående) postnummer. Dét kalder antropologerne en syndemi – dvs at sygdomme skal håndteres i sammenhæng med patientens sociale vilkår, hvis vi vil ulighed til livs. Men lægevidenskaben har haft svært ved at inddrage syndemi begrebet i deres sygdomsforståelse. Også her svigter forskningen patienterne.
Men hvorfor ved vi så meget om tobak, alkohol, kost og motion mens vi ikke ved hvorfor vi lykkes med at skabe ulighed i et velfærdssamfund når det kommer til uddannelse, social status og ensomhed? Dét burde man ikke dø af hvis velfærdssamfundet fungerede efter hensigten.
Man kunne få den tanke at der måske er et mønster. Politisk er det opportunt at sundhed og sygdom handler om individuelle faktorer: du ryger, du drikker og du er inaktiv. På den måde har man fra myndighedsside fastlagt hovedparten af skyldsspørgsmålet på CPR-nummer niveau. Samtidig fraskriver man sig som forvalter af velfærdssamfundet ansvaret for selve adfærden og er derfor kun forpligtet til at hjælpe, hvis personen er villig til at ændre adfærd. Ellers bortfalder ansvaret.
En anden bekvem effekt af at fastholde ulighed som et spørgsmål om køn, uddannelse, postnummer og social status er at det er faktorer som ikke direkte kan ændres af sundhedsvæsnet og de hører heller ikke under deres populationsansvar. Man kan lave endeløse statistikker der påviser sociale gradienter for enhver sygdom, men opgaven stopper med statistikken: vi ved godt at der er social ulighed men vi har ikke noget ansvar for patienters postnumre, læsefærdigheder eller køn. De opfattes som forstyrrende elementer i et sundhedsvæsen, der rent juridisk, er et sundhedsvæsen med lige adgang. Vi ved ikke meget om hvordan der kan opstå ulighed i kræftbehandling, diabeteskontrol og overlevelse efter hjerte-karsygdomme. Der mangler, også her, forskning.
Tidligere talte man kun om sociale determinanter for sundhed. Som Virchow sagde, så er ”politik ikke andet end sundhed i stor skala” og der tales nu mere og mere om politiske determinanter for sundhed. Politiske årsager til ulighed handler om forskellige magtstrukturer, institutioner, processer, interesser og ideologiske opfattelser, der påvirker sundheden inden for forskellige politiske systemer og på forskellige niveauer af forvaltningerne. Kontanthjælpsloft, integrationsydelsen og tolkegebyret, er oplagte eksempler på hvordan ulighed i sundhed kan skabes af politiske beslutninger. De mere subtile politiske faktorer er f.eks. ulige adgang til speciallæger, psykologbistand, fysioterapi og genoptræning fordi der er accepterede geografiske forskelle, ligesom transport til sygehus og medicin koster det samme uanset indtægtsgrundlag. En patient med diskusprolaps og kroniske smerter blev tilrådet selvbetalt fysioterapi og psykologsamtaler, men patienten blev samtidig ramt af 225-timers reglen, så patienten blev trukket 1000 kr om måneden i kontanthjælp og havde derfor ikke råd til den behandling som sagsbehandleren selv havde bakket op. Ringe boliger med dårligt indeklima, utrygge boligområder og nedslidning pga. ringe arbejdsvilkår optræder tit samtidigt og forstærker hinanden. I England har 83 % af akutte opkald til Politiet intet med kriminallovgivning at gøre, men er råb om hjælp fra mennesker, der ikke føler de får hjælp andre steder. Politisk støtte til private sundhedsforsikringer og strukturelle sundhedstiltag rettet mod veluddannede er andre eksempler på politiske behov, der cementerer ulighed. Sundhedspolitiske beslutninger rækker sjældent længere end en valgperiode, men ulighed i sundhed kræver langsigtede strategier over generationer, ligesom skolereformer.
Sir Michael Marmott gav for snart 20 år siden politikerne, gennem sine analyser af årsager til årsagerne til ulighed, en række ideer til hvor politikerne burde sætte ind. Imidlertid er forskellen i levetid mellem højt- og lavtuddannede, samt mellem høj- og lav social status, fortsat med at blive større og større. Samtidig er der indført lovgivninger der direkte går imod Michael Marmotts evidensbaserede anbefalinger. Nu skal vi så til at forske i hvorfor politikerne beder om evidens på ulighedsområdet, som de så forkaster og direkte modarbejder…..så vi kan forklare politikerne hvorfor der er ulighed i sundhed.
Sundhedsministeren Magnus Heunicke har nu åbnet en særlig afdeling til bekæmpelse af ulighed i sundhed i sundhedsministeriet. Man må håbe at kontoret med det lovende navn, tager fat om nældens rod og ser det som sin fornemste opgave at flytte den klassiske forståelse af ulighed væk fra den bekvemme ide om at man dør af sit postnummer og manglende uddannelse, hen mod en forståelse af hvorfor man dør af bivirkningerne af postnummeret og den korte uddannelse. Dét betyder at politikernes, kommunernes, sundhedsvæsnets rolle skal endevendes, ligesom de blinde pletter i forskningen skal identificeres. Ulighed i sundhed koster det danske samfund over 55 mia kr årligt, så der er rigeligt råd til, og grunde til, at se nærmere på det.

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