But what does that really mean? And what must be done for it? Answers from a complex world.
Text: Christian Sywottek Photo: Tinka and Frank Dietz, Albrecht Fuchs, Michael Hudler, Anne Schonharting
Marion Rink, Vice President of the German Rheumatism League
I have suffered from rheumatoid arthritis, an inflammatory form of rheumatism, since 1988. My joints are painfully swollen and my bones and cartilage are affected. I can run badly. Only shake hands very carefully. Because the cervical vertebrae are also affected, I can hardly turn my head, which is why I always sit at the end of a table when I talk to people. Until 2000 I was a teacher of mathematics, physics and computer science, since then I have been working in the Berlin Senate Administration.
Good care? For me, this starts with the doctor. This is especially important for the chronically ill, because they depend on it for the rest of their lives. I don't want my doctor to look at me like a collection of lab results. I am a human being, and I would like to be treated as such. I expect a doctor to talk to me. And I want to have the chance to participate in the decision-making process. In reality this is unfortunately not always the case.
The supply remains below its capabilities
Equally important is quick access to specialists. This actually works quite well in Germany, not least because the health insurance companies sometimes intervene and put prere on people to get appointments more quickly. Which doesn't mean, however, that every sick person gets all the help they need.
There is no lack of good will if the care is below its capabilities. Doctors, for example, play a key role in chronic diseases and yet often have little idea of their patients' work or employers' requirements – how is a joint strategy supposed to emerge?? The service centers at the insurance companies are often no help either, because they lack the resources and personnel to coordinate case management. And in the case of remedies, applications are repeatedly rejected pro forma, but to appeal is a real burden for chronically ill patients. I had to fight for five years to get a parking heater for my car, even though I was legally entitled to it. The growing prere is also noticeable in other places. For example, patients are increasingly cited to the Medical Service of the Health Insurance Fund when it comes to sick pay.
On the corporate side, on the other hand, a change is just beginning to emerge. They no longer see us sick people only as a cost factor, but finally also as the bearers of knowledge and skills. Many large companies have now improved their occupational integration management systems. Create more and more workplaces suitable for the sick. They have understood that chronically ill employees are often more willing than their healthy colleagues and also feel a strong commitment to their company.
I think that occupational integration is essential, because it is very important for the health of the individual to be needed. In addition, the chronically ill get a chance to give something to society. But in order to do that, they have to take responsibility: They have to perform, do their exercises every day and change their diet. Something like this costs discipline, effort and overcoming obstacles.But self-help is also crucial for good care, and there are various groups of sufferers from whom one can get help.
And yes, the chronically ill must also learn to scale down their demands. When someone is transferred to a job with lighter duties because of their limitations on the job, they often earn less than before. But that would be no different for a healthy person.
Thomas Abmann, family doctor
I am an internist and have been running a family practice in a small town for 15 years. I deal most often with the chronically ill, and this will increase because people are getting older and older. But we must not think that this is just about old people. Around half of patients are under 60 years of age. High blood prere or depression – it starts in the mid-20s.
Good care should contribute to patients being able to live normally. On the other hand, we have very good medications and therapies in our health care system, and the insurance benefits are actually okay. Those with private health insurance benefit from sophisticated diagnostics, but those with statutory health insurance often end up with better care because they can participate in special chronic care programs, the disease management programs (DMP), for example in the case of diabetes or chronic bronchitis.
Structured treatment is particularly important for chronic diseases – and the DMPs ensure this. Several specialists follow a binding plan, and certain examinations take place at clear intervals. There is also a lot of time for discussion, in which patients learn more about their illness and the influence their lifestyle has on it. Or they learn how to use an asthma inhaler properly. This constant accompaniment works: The disease is no longer so pronounced, patients suffer less, absenteeism and hospital stays decrease – and society as a whole benefits from this. An expansion of the programs, for example to include mental illnesses, is therefore entirely in my interest. But we doctors are only a small part of the system. Therefore dependent on the support of the other parties involved. And not everything always works smoothly. I think the family doctor model of integrated care is very good, the family doctors are the closest companions of the patients, they can best hold the threads together. For the politicians, however, we are often just the rubes, and some health insurance companies act downright hostile to family doctors.
A recurring problem is recourse claims when the capped budget is exceeded. But it is the chronically ill who need a lot of medication. Cure – should we doctors refuse the about? We have to treat people, even though we are of course aware that the interests of the entire insured community are important. But medicine is expensive, and at the moment we are the only ones getting the blame. Society needs to define what it wants to spend money on. So far, everything is promised, but there are hidden traps everywhere.
We doctors are only helpers. Recovery is an active process that requires will and self-discipline. I would actually need patients who live with their illness and not for it. But in reality, many see themselves primarily as sufferers, not as having a central influence on their disease. They believe in pills. And when they get a knee prosthesis, they continue to eat without restraint despite being massively overweight because the knee no longer hurts. Or they build mental emergency exits, along the lines of "Why should I stop smoking?? Helmut Schmidt is still smoking at the age of 96."
A short boost – and back into the system
For this reason, too, there is much to be said for focusing on prevention. Under the new Prevention Act, health insurers are to become more involved in health promotion, for example in daycare centers, schools and companies. It should not be the case that school kiosks mainly sell sweets. School meals must be healthy, if only for the learning effect. Effective prevention has hardly taken place in companies either to date. And in the case of mental problems, people are briefly nursed, only to be released into a system that has made them sick.
A binding framework from the political side would be very good, but empty phrases are of no use. For example, the bill says that the insurers should follow the recommendations of the family doctor – but without sanctions, hardly anyone is likely to follow them. There should also be a specification that regulates the consequences of a certain finding in the screening examination.
In the case of obesity, for example, a deliberate interdisciplinary approach would have to be taken, involving not only doctors but also sports clubs. In addition, it would have to be obligatory for patients to come to terms with their risks – although I don't know how this could be done. An appropriate offer would at least be a start.
Hilde Mattheis, health policy spokeswoman for the SPD parliamentary group in the German Bundestag
Care for the chronically ill is already very good and efficient in Germany, but there is still room for improvement. Two points are decisive for me: We must prevent chronic diseases – through prevention that really reaches the citizen. And we need to optimize care.
Particularly in the case of the chronically ill, medical care is a team effort involving many different professions. The family doctor, various specialists, company doctors, remedial pedagogues and remedy suppliers must work hand in hand – with the family doctor at the center. That's why they need to be networked. We have had good experience with disease management programs (DMPs) for chronic diseases, which is why they will soon be extended to patients with back problems and depression.
But that is not enough. It is also important that access to care is facilitated. There is a disparity between city. Countryside – the shortage of doctors in rural regions is a reality. To compensate for this, a change in demand planning is needed. And politicians must create incentives to encourage more doctors to settle in rural areas.
But even in large cities, the distances to the family doctor, the central point of contact for the chronically ill, are sometimes too long. Most of the offers are found in districts of rather well-off citizens, but more often people are affected whose life path is not characterized by higher education and a healthy lifestyle. To help these patients access the care system, we need to target doctors to poorly served neighborhoods. A good approach would be local health centers. We have also had positive experiences with existing practice networks.
In addition, preventive care that is worthy of the name must be designed to be true to life. We are now tackling this with the Prevention Act, which the governing parties agreed on in 2014. It obliges the health insurers to invest significantly more in preventive care services. One might argue that this money is missing from care, but in the long run prevention saves money because it can make expensive treatments unnecessary.
Leaving nothing to chance
The money should be spent where long-term health is really at stake – in daycare centers, schools, residential neighborhoods and businesses. There will be fixed quotas for this. And what happens with the money should not be left to chance: Politicians, associations and health insurers will define a nationwide strategy that can be adapted by local actors as needed. In addition, prevention programs offered by insurers will be certified and evaluated regularly.
By the way, I don't think that politics undermines the competitive principle of the health insurance funds by setting requirements. Minimum standards must apply in the provision of services of general interest. Once these are fulfilled, there is still plenty of room for competition.
Herbert Rebscher, Chairman of the Management Board of DAK-Gesundheit
The health insurer
When we talk about optimal care for the chronically ill, for us that means treatment in a network of purposefully coordinated therapeutic steps. But this is difficult to organize. For example, because medicine is becoming more and more diversified into special disciplines, which leads to frequent changes of doctors and parallel contacts, especially for the chronically ill. Therapeutic care is also complex. This can lead to interface losses with serious consequences: Treatment is not optimal, it takes longer than necessary, for example because of waiting times for appointments, and some things are done twice. This increases the cost of care, which is bad for insurers and society alike. And it often prevents people with serious illnesses from quickly returning to a normal life and returning to their jobs.
We see ourselves not only as a provider of funding
So the crucial question is: How do you coordinate the players and the processes of treatment?? Who accompanies the patient throughout the entire period? A health insurance company can provide valuable support. Because who has the most comprehensive information?? Not the family doctor or the specialists, but the health insurer. She knows all the prescriptions, treatments, rehabilitation measures – after all, all of this is billed through us. That's why we see ourselves not only as a funder, but also as a contributor to the organization of the care process.
DAK-Gesundheit has been doing more of this for three years – nationwide with health advisors in regional centers, where we make appointments with doctors and other players and coordinate therapy concepts, for example. We also call a speech therapist. That's the care management side, but we're also concerned with cost-effectiveness, for example in the provision of aids such as wheelchairs or walking aids. We can obtain these at good prices through our contractual partners.
But of course we do not interfere in therapy decisions or the prescription of medicines – that is the doctor's business. Our strength is organization, knowing full well that this kind of cooperation is a tender seedling that we do not want to jeopardize.
For us, care management does not mean exerting prere, but partnership. And even if individual doctors take a critical view: The doctor is not our opponent, we are simply concerned with evidence. And doctors have the advantage that they don't have to worry as much about recourse claims. Because if you work in a coordinated way, the risk of going over budget decreases. Which doesn't mean we want to save money – we mainly want to improve care. And the most expensive patient is always the unattended patient.
Live longer – but don't pay more for it
Chronic diseases will increase, and so will costs. Everyone wants to live longer, but no one wants to pay more for their health insurance because of it. So you have to deal intelligently with the available resources. However, I consider the fight against chronic widespread diseases through prevention to be a nice dream. Of course, individual diseases such as heart attacks can be successfully prevented if, for example, people smoke less. But there is biology, various environmental influences – and we know very little about what really makes people healthy or sick.
No prevention program can change that, you have to be realistic about it. We welcome the new law nevertheless, even if it doubles the prevention expenditures of the health insurances. We're also okay with quotas and evidence-based certification of our services.
But it's the same with prevention as it is with treatment: I think the competitive principle should apply in the search for the best concept. When health insurers compete with each other – for example, even on concepts for coordinated care – systems can emerge that later serve as benchmarks for collective solutions such as new disease management programs. Each cash register then has to positively contrast with this once again. This creates a dynamic that is beneficial to all concerned.
Stefan Buchner, Managing Director of UBGM Unternehmensberatung fur betriebliches Gesundheitsmanagement (UBGM Corporate Consulting for Occupational Health Management)
We work on behalf of companies on all ies of occupational health management. For example, we provide advice on the legally required integration of people on long-term sick leave, but we also take care of it when a company wants to make its employees an offer for preventive health care. We are usually called in when sick leave increases and absenteeism rises. Chronic conditions often play a role. It is then a matter of finding solutions to concrete problems in the interest of all concerned, whether it is a matter of transferring chronically ill employees to new workplaces or changing operational processes with conspicuous health risks.
This requires sensitivity, because companies are under cost and time prere, which leads to accelerated and condensed work processes that can hardly be changed. We work, so to speak, on the roof of a speeding express train. That's why we have to proceed in a structured and well-founded way: We need to analyze the problems, derive tailored measures and evaluate everything. To do this, companies would actually need their own health managers with a corresponding budget, but unfortunately this is rarely the case.
Solutions can be found together
We start at two points: the company, which is responsible for working conditions, and the individual employee and his or her health. On an individual level, health promotion is not that complicated: organized company sports, regular workshops or coaching on how to deal with stress can have a lasting effect. And all this is not even particularly expensive. Especially if you focus neither on the health gurus nor the health muffleheads, but on the many employees in between.
Changing working conditions is a bigger ie. You're interfering with a company's core processes, and its purpose is not primarily to promote general fitness and health, but to generate profit. That's what managers focus on, and that's how the work is organized. Reducing prere or finding alternative jobs in integration management is therefore difficult. But it is possible if a company is not in a tight spot and the management really wants healthy working conditions. It is possible to find individual solutions together, for example by reorganizing a workplace, developing a new job profile or changing processes. Job rotation can also reduce stress, such as when someone can no longer do heavy lifting.
And, of course, the support of management is also important. You have to learn how essential appreciation is, that employees need breathers or help in prioritizing projects. In many places, it is not yet common for someone to openly say no. However, it is important to know one's own limits and not to exceed them permanently.
Good health management is not limited to ergonomics at the workplace. It is often managers who underestimate their influence on the health of employees – it can be beneficial to health, but it can also be hazardous to health. Soft factors in common interaction are very important, because only in this way can a healthy spirit be established in the company. This can be reflected, for example, in an invitation to an integration meeting that is formulated in such a way that a chronically ill employee sees it as support and is happy to accept it.
Bernhard Biehler, Human Resources Manager, Freudenberg Performance Materials
The HR manager
Freudenberg Performance Materials is part of the Freudenberg Group, which employs some 40,000 people worldwide. However, our plant in Kaiserslautern with its 270 employees is more like a classic medium-sized company. We produce nonwovens for the automotive and construction industries, for carpet manufacturers and horticulture. We run rotating shifts seven days a week. There is heat and noise in production, and the work is also physically strenuous, for example when cleaning or retooling the machines. In administration, we perform all the activities of a fully-fledged company – with the usual deadline prere.
In terms of chronic illnesses, it's the same for us as everywhere else: we have skeletal and muscular disorders, circulatory problems, psychological strain. And, of course, our workforce is aging – in 2017, two-fifths will be over 55 years of age. This age group already accounts for around 80 percent of those on long-term sick leave.
Chronic illnesses are a very serious challenge for us. Once because of absenteeism, which also leads to an overload of other employees. Secondly, we rely on the knowledge of our experienced people. That's why it's essential for us to get to grips with chronic illnesses – and to do so at an early stage. We have been dealing with this systematically for four years. We have to strike a balance between the operational requirements of the company and the needs of the employees. Creating the needs of those affected. First of all, of course, we want to prevent employees from becoming chronically ill in the first place. But we can't change our entire production. Changing the laws of the market. So we make sure that workplaces are as healthy as possible – but the individual employee must also do something for his or her own health. We support him in this, that is a matter of course for us. It is important that it is done together. In order to find individual solutions, a discussion with the affected employees as part of company integration management is of the utmost importance. This measure has been very positively received by all those involved – employees, works council and representatives of the severely handicapped.
Prevention is not that difficult. You first have to identify who is in danger in the first place. To do this, we looked at the workplaces and surveyed all employees. We have invited those at risk to a two-day workshop. It was about nutrition, ergonomics, self-reflection, and they developed individual action plans. And because we are particularly concerned with physical health, we have negotiated special conditions with a sports studio.
But health promotion in the company is more – it must also be about the work itself. There is a lot that can be done, even for a mid-sized company with limited resources. Chronic knee diseases, for example, can be prevented by equipping employees with knee pads – that's what we have done. Or muscular disorders caused by constant drafts – in our production, a blind was installed in front of the roller shutter, and the danger was eliminated.
Keeping people who are already ill or acutely at risk in the work process is another matter. It is easy to demand that special workplaces be created for employees with reduced performance or that additional staff be hired to reduce the workload. But you can't do that without additional financial outlay. We bear the costs incurred – but with only 270 often specialized employees, there is little room for maneuver.
We've taken employees off the night shift or moved them from a difficult-to-operate line to one that's easier to operate. On the administrative side, we've spread the workload across multiple shoulders and hired someone extra to protect an overworked staff member. But I can only hire new employees if they are working at full capacity – it won't make up for the ten percent reduction in performance of a chronically ill person. And if I want to take someone off the night shift, another employee has to fill in for them – we then look for that volunteer.
Caring for the chronically ill in companies is a question of attitude. This is where Freudenberg builds on its values. Principles of responsible cooperation. Because what makes people sick are behaviors that aren't even necessary.
Does everything always have to be done immediately? Must call employees on vacation? No, of course not! This is also in the interest of the company, because perfection for the customer is not created by the individual employee, but by the organization, which absorbs errors if necessary. But it can only do that if it is healthy. And for this the individual employees have to be healthy.