An unhealthy health care reform in Switzerland, part 2

In my last blog I wrote about the Swiss healthcare reform which is proposed by the Swiss Council of ministers and about a controversial measure to introduce budget limits to outpatient healthcare, putting expenditure limits on treatment. The details are explained in my last blog. This measure is almost universally opposed by those affected: by patients, doctors, insurers and industry.

The proposals were presented to parliament in Spring. This blog title photo was published on Twitter by Michel Guillaume correspondent for the Federal parliament for the Swiss newspaper “Le Temps” and shows attendance at the parliamentary session on 31.05.2022. It documents the involvement and engagement, or rather lack of it, of Swiss parliamentarians to discuss one of the most important issues for citizens and society – health reform to create a healthcare system that delivers the best care for all in society. As Michel Guillaume of Le Temps reported, not even ¼ of parliamentarians attended the debate. Against this background of indifference, the law was duly passed on 07.09.2022, the Federal Council adopted the legislative bill to amend the health insurance legislation.

The approved strategy overlooks many other opportunities to save costs and improve the quality of care. In particular it ignores the cost-saving opportunities presented by listening to patients – something that I have written about in this and other blogs. These would be considerable — if the right incentives and structures are made available.

Patients at the centre of healthcare

Reform should put patients at the centre of healthcare and create the conditions for the system to prepare for future challenges and opportunities. Politicians seem to see the Swiss health system as a fiscal burden, which is managed by cost cutting efforts and budget restrictions. In my view an effective and efficient health system is an investment into the workforce as a pre-requisite of a flourishing and equitable economy. I do not dispute that there are enormous cost inefficiencies in the Swiss system. Anyone using the system is frequently confronted by them. The government’s reform efforts seem to have identified the problem to be doctors carrying out medically unjustified treatments and overprescribing to outpatients, who by implication do not really need the treatment and are perhaps just making it up. Is this really the root cause of the problems?

Like most people affected by chronic diseases[1] I go to the doctor relatively often and I take expensive medication. Maybe budget restrictions will result in my doctor limiting my healthcare, and thus reducing the direct costs of my treatment as an outpatient. But chronic illnesses also cause indirect costs, meaning the loss of productivity of patients and their families due to illness. There have been times when I couldn’t walk to the local shop, I couldn’t sleep, I couldn’t work. In total, I have spent five years of my life collecting unemployment benefit. I now work part-time.

My situation is not exceptional. There are thousands of people who are living this way.[2] If the outpatient services are restricted, which enable people like me to get back to a normal life, indirect health costs and the associated misery and hardship of the affected patients may increase. And these costs are not negligible. As the graph below shows, the indirect costs of musculoskeletal disease are much higher than the direct costs of outpatient treatment. Let’s look at this in more detail.

Health costs are not caused by doctors!

In Switzerland 80% of health costs are due to chronic, or non-communicable diseases (NDCs) – in normal times outside the Covid-19 pandemic. The four largest cost drivers are shown here with direct costs shaded purple[3] and the indirect costs mentioned above and shaded turquoise[4]. The largest disease group are the musculoskeletal disorders. It is apparent that the total indirect costs for the four most costly diseases are higher than their direct costs. These figures were last published in 2011. According to the Federal Office of Public Health (FOPH), the costs of NDCs in Switzerland increased by a further 28% between 2011 and 2019.

The new measures will restrict outpatient health care, but they do not address the area where the most costs are incurred: namely indirect costs. Instead, the measures will almost certainly reduce the quality of care and restrict patient choice, which may lead to higher indirect costs. Furthermore, they will result in higher administrative costs, because of the paperwork required from medical staff to prove that they are not overspending. This may well lead to undesirable evasive manoeuvres and side effects…. What, for example, will be the effect of these bureaucratic measures and red tape on the motivation of doctors and nursing staff, many of whom are already demoralised by over two strenuous years of the pandemic?

Patients Know Best!

My doctors want the best for me. They have enormous expertise and know a lot about my conditions. But I also know a lot about myself because I live with my illnesses 24/7. Especially with chronic patients with multimorbidity, no clinician can ever acquire this knowledge if she/he sees a patient perhaps 1-2 times a year.

Healthcare has a century-long tradition of patriarchy and not listening to its users. Think about it: in what other industries are consumers not consulted about their needs and wants? I started writing this blog over 5 years ago because it seemed the best way to get my voice as a patient heard. Since then, the Swiss National Science Fund (SNSF) has begun funding some medical research projects, where patients must be involved. The Swiss Clinical Trials Organisation (SCTO) has started creating resources about PPI (patient and public involvement) in clinical medical research. The Swiss Patient Organisation SPO is establishing an advisory Patient Council consisting of patients. Other patient organisations are taking similar initiatives, although these patients are not as yet embedded in decision-making organs. Patient-led organisations are almost unknown in Switzerland.[5] RheumaCura Foundation, which I co-founded last year, is one of the first.

In public health commissions, which advise government, the inclusion of patient representation is becoming more common, although up to now the position is usually delegated to a health professional, rather than a patient with lived-experience. If a politician wanted to talk to me, I would have many questions. Two are raised by this blog:

Why are the indirect costs of healthcare not addressed in health reform?

Why aren’t the chronically ill supported in such a way that they use fewer health services, can work as long as possible, actively participate in society and through their earnings contribute tax revenues to government?


[1] These are also called non-communicable diseases and are broadly defined as conditions that last 1 year or more and require ongoing medical attention or limit activities of daily living or both. This is opposed to acute medical conditions, which occur suddenly, have immediate or rapidly developing symptoms, and are limited in their duration, e.g. like flu.

[2] A call to address the indirect costs for chronically sick patients has been made using the example of cancer survivors. Françoise Meunier former president of the European Organisation for Research and Treatment of Cancer calls for action to end discrimination against cancer survivors at the workplace and financially, which leads to high indirect costs of the disease.

[3] Wieser (2014) defines direct costs as medical costs that are incurred directly through the expenditure of resources for the treatment of a disease (inpatient costs, outpatient costs, medication costs) and non-medical costs such as adaptation of home facilities, which was not measured in this particular study. See Wieser et al. (2014) Die Kosten der nichtübertragbaren Krankheiten in der Schweiz, Schlussbericht im Auftrag des Bundesamtes für Gesundheit.

[4] Wieser (2014) writes that productivity losses among patients occur in the form of reduced performance during work (presenteeism), temporary absence from work (absenteeism) or permanent absence (early retirement). In addition, productivity losses can occur due to premature death. For relatives, unpaid care (informal care) causes productivity losses.)

[5] Patient-led in the sense of the European Medicines Organisation (EMA)

“This horror will grow mild, this darkness light”

John Milton, the English poet, wrote these lines in the 1660s in his epic poem Paradise Lost. It was a time of failed revolution, religious repression, and endemic plague sweeping through the land where there were no vaccines, effective protective measures, or intensive care units.

I am often reminded of his words, and they give me hope. Thankfully today in Switzerland few of us know the terrible suffering of those who have lost loved ones or are chronically ill as a result of the pandemic.  Recent discussions have been about whether we can go skiing, or if the trams will still run. For most people SARS-CoV-2 is an inconvenience rather than a life-threatening illness. Nevertheless, the pandemic is causing huge suffering in the world, and it helps me to remember that pandemics are nothing new, that normal life will indeed return.

That’s why, in the middle of the pandemic, I and three companions launched an initiative for more patient-centred research into rheumatic and musculoskeletal diseases. In May we established a foundation called RheumaCura. You can find out more on our website.

At the time of founding RheumaCura I wondered if we shouldn’t be addressing this immediate crisis. Milton reminds me, that these times will pass, and the challenges to solve will still be there. Better treatment and finding cures for rheumatic diseases is still important and there’s much to do.

Our quest for more patient involvement in health care does perhaps have a link to the current crisis. Overcoming the pandemic is slowed because not enough people have been vaccinated. In Switzerland a vaccine is readily available for all, but a significant proportion of the population do not want it. This may be now leading to an unparalleled health crisis in Switzerland, which according to the health experts would be entirely avoidable.  If we’ve learned one thing from Covid-19, it’s that the public health authorities are powerless to beat the pandemic if the people do not support their initiatives.

The reasons why people refuse vaccination are complex, but one important aspect must surely be trust. Mike Ryan, head of the health emergencies program at the World Health Organization stated recently: “What’s shocked me most in this pandemic has been that absence or loss of trust,” he said of people’s unwillingness to follow the advice of public health leaders and the containment policies set out by governments.

People who don’t have confidence in health experts or substantiated scientific evidence, or democratically elected government authorities, or the media, will not have faith in information provided by these sources. They succumb to fears without any scientific basis. The American scientific journalist, Tara Haelle, writes thought provokingly about the reasons for vaccination hesitancy, about its long history, and why nobody should be surprised.

However, even among the vaccinated majority, a common perception is that health care is strongly influenced by the pharmaceutical industry, health care providers such as gigantic hospitals, and corporatist bodies such as the associations of health insurers. The Swiss system is highly complex, hierarchical, and not easily understood by outsiders. Patients often feel like objects in a huge and powerful industry, where they are by definition vulnerable. More trust and cooperation could be generated in the health service if it were closer to its citizens. An obvious way to do this would be to listen to and involve them more, and enable them to be more active.

 A health care system in which the patient’s voice is heard at all levels would provide better care, and furthermore, it would also increase trust and encourage compliance with public health care advice. Patient compliance with health care advice is always essential for the best outcome, and we have never seen it so clearly as in the pandemic.

Read more about our vision and work on the RheumaCura website

Milton, J (1674), Paradise Lost  (2nd ed.), London: S. Simmons

Sunset in Bern
“This darkness light” Reflections on the Covid-19 pandemic

My dream for better health care

Coming out of our Swiss “Soft Lockdown”, for all of us who have been self-isolating or otherwise sheltering from the outside world, feels like the slow recovery from an illness. In the canton of Bern, where I live, the population has generally not been greatly affected, compared with other regions of the world. Nevertheless my belief is that we still need to be very careful. We know so little about the Corona virus, so it’s too early to make assumptions about what comes next. So now we can catch breath. It’s a good time to start thinking about other things.

The title picture is taken from my balcony on Whit Monday. For about 10 days a year my climbing rose explodes into flower and it is paradise to sit on a sunny day with a book and a cup of tea, perched above my garden, the meadows and the mountains in the background. It’s part of a healing process.

Rather than write today about emerging into the new, “normal” world, I would like to offer you a link to an interview that I gave for the TEDx Zürich , as a follow up to my TEDx talk of 2017 (which is at the top of the article, if you haven’t seen it). The interview contains some thoughts on setting personal goals, the importance of nature for health, living life on a knife edge – including the choices that we are facing in the pandemic – and above a call for change in health care by putting patients needs more clearly into the centre of endeavours.

Please read and enjoy: Balancing Life on a Knife Edge

Coronavirus: 5 tips to manage your day

The news gets grimmer every day. Many of us are living in Lockdown. We are frightened and understandably so. The Coronavirus disease is causing a pandemic which is shaking our beliefs, culture, daily habits and the very essence of our lives. These are life changing events for us all. Whatever this leads to, whatever we suffer, or learn, I suspect life will never quite be the same again.

Will I fall into a chasm of fear, helplessness and despair? I’ve been there, and that taught me that we have choices and it’s never as bad as our fantasy and creative mind can allow it to be. Rather use that creativity to generate hope and optimism, and on a strictly practical level – make a plan to keep myself afloat.

5 things to manage Corona times

What follows is my list of things to do every day. If I keep to them, I will be OK. It helped me to visualise the plan. My artistic efforts are pictured above!

Maybe a plan like this might be helpful to you? Other ideas are around. For instance, the Unicef Executive Director, Henrietta H. Fore has been broadcasting a Video diary from her home office. In the broadcast on Day 4, she recommends to make a Well-being plan.
(If it’s relevant to you, Unicef’s advice about looking after children and teens during the pandemic might also be worth reading.)

So here is my personal list of what I need everyday for well-being.

1. Move your body!

Movement and sport is absolutely essential to me. It’s the way to keep Spondyloarthritis at bay. If I move, I’m usually pain free. If I don’t, the pain comes back within a few days. So how to replace the weekend mountain trips, the back classes, training gym, climbing gym, physiotherapy and the fitness centre which keep me moving?

As long as I’m allowed to, I will go running in the hills behind my house early in the morning. I meet nobody and feel safe. Or some days, I practice Rickie Moore’s wonderful yoga for inner peace, which takes an hour. I can also go walking. The incredible value of walking was made clear to me by the neurologist Prof. Shane O’Mara on a BBC podcast called Don’t tell me the score. In summary, walking benefits our muscles and posture, helps to protect and repair organs, aids digestion and can even turn back the aging of our brains. Moreover, it encourages us to think more creatively, helps our mood to improve and our stress levels to fall. I’ve tried to follow Prof. O’Mara’s recommendations on walking, and I really think that they work. A quick summary with 8 reasons why walking is so good for you is here.

2. Look after stress levels by meditating

Sometimes I get really stressed out, which leads me to make mistakes and misjudge situations. I can even feel my heartbeat accelerating, or my voice getting tense. To relax again, I need to get myself into the here and now. I’m never tense if I’m in the present moment. It’s reflecting on some event in the past, or worrying about the future that makes me stressed.

Climbing, running, swimming, or other physical activities all help to concentrate the mind, but meditation has a special healing quality. Sometimes I can sit on my cushion and physically feel the tension falling away from my body. There are so many schools and techniques to meditate. If you are curious, it’s all on the internet.

Mindfulness is also a very helpful tool to reduce stress. It’s not the same as meditation. I like this simple way of distinguishing these two practices:

Mindfulness is the awareness of “some-thing,” while meditation is the awareness of “no-thing.” (here’s the reference)

Mindfulness is being aware of the present moment. It’s noticing and paying attention to thoughts, feelings, behavior, and everything else, but without making judgements. Jon Kabat-Zinn founded the Mindfulness-Based Stress Reduction (MBSR) program at the University of Massachusetts to treat the chronically ill.

Personally, I prefer meditation. It’s the fascination of trying to get to a completely different level of consciousness. Albert Einstein famously said, “We cannot solve our problems with the same thinking we used when we created them.” Meditation often enables me to reframe problems and find solutions.

There are masses of information on the internet. I find Andy Puddicombe a fascinating person. He co-founded the App called Headspace. I don’t know it, although it’s probably the most popular one. He has worked hard to make Meditation and Mindfulness more accessible and relevant in today’s world.

I’ve been meditating for about 8 years now. Sometimes only for 10 minutes, but every day is the key. I still get distracted a lot, and this is quite normal, unless you are really, really experienced. My practice has not (yet) enabled me to switch into altered consciousness every time I sit on my cushion. My practice is learning to catch myself drifting off into other thoughts and bring myself back to quietness. This does help with problem-solving and calms my mind too. I also enjoy meditations that help develop a certain state of mind, such as Loving Kindness, or Compassion. There is no wrong and right way to meditate!

3. Get some overdue work done

Lots of people feel this way about the Lockdown. They can finally get some work done, which they’ve wanted to do for ages, or read some of those books stacked on the bedside table…. I am looking forward to blogging more and am launching new professional activities as a patient representative/advocate in medical research. Maybe you have other projects, or can contact old friends again.

4. NO TV before bedtime!

We all know that we shouldn’t be online in the evening, let alone watching the news. A few evenings ago there was an evening report from an intensive care unit in Bergamo in Italy, a city 30km from the Swiss border, where an old friend lives, who had a liver transplant. I was stupid enough to watch it – woke at 3am, feeling sick, my head spinning. I felt feverish but was too dizzy to move. When I did manage to measure my temperature, I had slightly over 35C! No fever whatsoever!

In the evenings I am generally to tired to read, so I need to do something very passive. That’s why TV is such a temptation. My solution was to get out some of those old coffee table books with stunning photos about beautiful places in the world and look at them again. Wonderful! I haven’t looked at such books for years!

5. Remember the power of Love and Compassion

It’s important to me to feel connected with others and to feel the power of Love and Compassion. A marvellous doctor called Sir Harry Burns, who I have been so privileged to work with, emphasised the need for Love and Compassion in health care in a recent talk. He was referring to the care of others, but it’s also important when caring for ourselves. (Sir Harry has also done a great TED talk on What causes Wellness).

I’ve heard that Neuroscience says that it is better for your health and well-being to give than to receive. I don’t know if there is really any evidence-based research on this, but I can believe it. Helping each other, staying in touch, supporting each other, will make a big difference to how we overcome this crisis. And I am sure that despite a bit of hamster shopping, people will rise to the occasion. Just knowing this, gives me strength and hope for the days and weeks to come.

Take care, stay at home, stay healthy, and stay in the space of Love and Compassion.