Patients don’t just need good care, THEY NEED EACH OTHER!

The Spondylitis Association of America (SAA) is the patient organisation in the USA for people like me. Its vision is of “a world free from the pain and disability of ankylosing spondylitis and related diseases.” and its mission is:

To be a leader in the quest to cure ankylosing spondylitis and related diseases, and to empower those affected to live their lives to the fullest.

It provides great information about ongoing research, and advice from medical doctors, researchers, dieticians, physiotherapists, and more. Currently I find it the best source of the latest information for patients and carers affected by Spondyloarthritis.

So imagine my delight when I was offered the opportunity to present at the March 2023 SAA Storytellers event. Together with four other patients we shared our experiences with the Spondylitis community in the USA and many others worldwide. The whole event is on YouTube. If you want to jump to my presentation, it starts at 12:22.

Patients need carefully checked and up to date information. Especially now, as healthcare systems struggle in the aftermath of the Covid-19 pandemic, which has put a big strain on healthcare services. I believe that self-management, shared decision-making and advocating for our own needs will be essential components of effective healthcare in the future. The screen shot below gives you an idea of the wealth of resources which the organisation offers.

The RheumaCura foundation, of which I am a co-founder, aspires to a similar vision and wants to bring that focus on patient-centred research to Switzerland. We work to:

  • Raise awareness about the need for and value of patient-focused research in rheumatic disorders
  • Ensure a strong patient voice in research into rheumatic disorders
  • Influence the research agenda in the interest of people with rheumatic disorders.

With SAA we have great role model of how to empower and inform patients. To follow RheumaCura’s work in Switzerland, subscribe to our newsletter on our website, or follow us on LinkedIn.

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)

Another Patient Journey: 2019 was a good year

Picking up the story from my last blog Was 2019 really that bad? my doctors advised that I should stop the TNF blocker drugs, that had enabled me to live a normal life for the past three years, before undergoing cancer surgery. That made sense. These drugs work by dampening the immune system. I could understand that my immune system should be as strong as possible for the operation, so I would have to go off them…. for a while.

However, after the operation I was told that I wasn’t supposed to stop the TNF blockers just for the operation. I was supposed to stop them forever, or at least for a few years, because TNF blockers might enable the cancer to come back. TNF = Tumour Necrosis Factor – the blockers stop these messengers in the immune system, which are thought to play a role in suppressing cancer.

My doctors all seemed to be saying “stop TNF blockers”. I couldn’t believe it. I read the patient information for my medication, and it said the same thing: Do not take this medication if you have been diagnosed with cancer.

I was absolutely devasted.

Until I spoke to one doctor, by whom I felt understood, and who said, “What do you want? What is Quality of Life for you?” I thought of my trips to the mountains, of laughing with family and friends and all the love of life that had come back to me with TNF blockers. After the trauma of diagnosis and the surgery, I felt so confused and helpless. I needed that input to start thinking for myself.

I posted a question on the Facebook AS patients’ page of which I am a member. One woman commented that she was in cancer treatment and had to change medication. She wrote, “I got my life back with humira [brand name of a TNF blocker drug] and now it’s the 💩💩💩.”

Then I looked for relevant research results, my oncologist sent me a paper, I opened the discussion with different experts, and discovered …that there was no relevant, reliable data to guide my decision. The risk of cancer caused by TNF blockers in my situation is theoretical, because it would not be admissible to run clinical trials with patients to find out. There is also no scientific literature showing that I will reduce the risk by stopping TNF blockers now.

Living with chronic disease is life on a knife-edge

With my condition I live on a knife-edge, and I want to stay on it, living a normal life. This is me, on a mountain called the Lyskamm. It’s a knife-edge ridge, about 5 km long, and the idea is to stay on it, to walk right over it. I walked over it on my mountain tour of August 2017. I tell that story in my TED talk or my blog 16 x 4,000m summits in 5 days.

Traverse of Lyskamm, 16 4,000m peaks in 5 days
Me standing on the knife edge of the Lyskamm on the border of Switzerland and Italy

When you stand on that ridge on the right is Italy, and a drop of 1000 m. On the left is Switzerland, and a drop of 1000 m.

Italy is happy go lucky, living for the now. “La Dolce Vita”. For me it stands for continuing TNF blockers. But maybe I will fall to my death, because taking the drugs might allow the cancer to come back!

Switzerland is the sensible place to be. If in doubt, choose the conservative option, wait and see. It stands for stopping TNF blockers. But maybe I will fall to my death because if I stop taking the drugs, the autoinflammatory conditions will probably flare up again! I had experienced this a year before, when the medication stopped working, see The Luxury of Despair. Furthermore, it is known that chronic inflammation increases cancer risk, as does a lack of regular exercise.

How would you choose? ……Which way would you lean on that ridge?

“What is Quality of Life for you?”

The words of that doctor were my guiding light. She saw my integral, holistic needs beyond the inflexible, “one size fits all” recommendations of a health system that generally places mortality and prolonging life above quality. In Switzerland I can choose my doctors and over the years I have sought out dedicated carers who are attentive to my experiences and needs and do everything in their power to help me.

I want doctors to give me the facts, listen to me, guide me, but recognise that this is my patient journey.

I could explain my perspective to my doctors and win their understanding, respect and agreement. I decided to continue TNF blockers and live as healthy and strong a life as I can, even if my decision might be increasing the risk of cancer. Life feels good right now, and that’s all I need.

Was 2019 really that bad?

If you’d told me in March 2019 that I wouldn’t write another blog on “arthritis and me” until 2020, I would have laughed and said you didn’t know me!

I had started two new drafts. They will be finished one day, but first I have to write about breast cancer and get that off my chest – excuse the intended pun.

“Breast cancer and me”? I mean…. that happens to others. People who are already managing chronic disorders don’t get cancer as well. Or do they?

Well yes, it seems that they do. In that sense people with chronic disorders aren’t different from anybody else. Nevertheless, most of my friends were very shocked and found it rather unfair and that I had already had my share of health issues in the last few years.

Today, looking back from these first days of 2020, I feel that apart from the fact of not being able to write any blogs or do much beyond managing the daily essentials for several months, 2019 was not such a bad year.

The year didn’t start so well and that already blocked my ability to write. In July I went for a regular Mammography as is recommended every 2-3 years for women of my age. A couple of days later the phone rang and to my surprise I was asked to come into hospital for a check. “It’s probably just a shadow,” the woman on the phone said. “It’s usually nothing. But to make sure, you should come in.” Another couple of days later I was under the ultrasound and then it seemed like endless samples were taken for biopsy using a sort of pressure gun that was held against my breast and took tiny bits of tissue. Very uncomfortable

I was asked whether I wanted the results by letter or phone. It seemed logical to get the information as soon as possible, so I opted for a phone call. This came in the early evening two days later. The doctor who had taken the samples rang me. “Good evening, Ms Safford”, she said. “Unfortunately….“ and after that I understood almost nothing. My reptilian brain, the Amygdala took over. Flight or Fight. My cognitive abilities were gone. I have since learnt from others that this is normal. It’s the shock.

A week or two later the exact diagnosis was explained to me. Luckily, I took a friend to the hospital with me, because despite my efforts to listen, I was still unable to take the information in. My friend took notes and then explained to me, I understood that the cancer had not spread. Treatment would be surgery and radiology over several weeks, but no chemotherapy. Most importantly, I would not die and could fully expect to be cured.

Surgery and radiotherapy went as planned. It was a strange experience having a disease that is considered so serious and generates so much fear, yet my own diagnosis was positive. That meant that my own feelings were that this breast cancer was much less important than the arthritis and intestinal problems that I had experienced daily for years, and for which there are no cures.

Brustzentrum, Inselspital Bern
Feeling frail but well after breast cancer surgery

The hardest part of the story came after surgery. My doctors recommended that I should stop the medication for the arthritis and bowel disease, which has completely transformed my life in the last 4 years by enormously reducing the pain, inflammation and tiredness. See my post How it all started for the story of my amazing improvement . The drugs are called TNF-alpha blockers, because they block messengers in my immune system called TNF-alpha, which are thought to be malfunctioning, and are causing my illnesses.

However, it is believed that TNF-alpha normally plays an important role in the immune system by fending off cancer and destroying potential tumours. TNF stands for Tumour Necrosis Factor. So obviously, someone already diagnosed with cancer, will be recommended not to take this medication. That advice initially really devastated me, but then it sent me on an important journey to pursue my needs as a patient and not just to follow doctor’s orders. I write about that journey in the next blog… coming soon.

Featured photo by Vernon Raineil Cenzon on Unsplash

Am I really what I eat?

In the bad old days when life seemed to be filled only with pain, I used to comfort myself and find moments of peace with the thought: „I am not my body!“ If I could see myself at a level of consciousness where my soul and not my body was in charge, then the pain lost its power over me. That was rare, but it did happen.

If I am not my body, then I am also not what I eat, right? Up to now I believed that medication, exercise and stress-reduction are more important for my well-being, than food. However, the more I learn about diet, the more I think that it may be important too. Diet seems to be the question that interests people the most.

The leading Swiss charity for musculoskeletal disorders, the Swiss League against Rheumatism, recognises that many patients would like advice about diet, but do not know where to find reliable information. They publish an excellent series of articles explaining the different views (German, French, Italian). Many rheumatologists are sceptical of or reject any significant dietary influence on the development of chronic disease, and fear that special diets may lead to nutritional deficiencies, and make things worse for patients. At the other extreme there are holistic physicians, and health advisors who believe that diet can even replace medication.

When the disease flares up, I would try almost anything to alleviate the pain; and it seems intuitively plausible that what we eat may affect the progress of disease. It is well-known that a poor diet can lead to other health problems, such as Diabetes or cardiac disease. But what about Arthritis? Health care specialists who believe that diet has no influence, point out that there is no clear evidence that diet makes a difference. But that could be because the subject has not been adequately researched yet. We still don’t understand what triggers arthritis, so in my view it’s too early to eliminate diet from the list of suspects.

But where can patients like myself find the information to make their own decisions?

My General Practitioner sent me to a nutritional consultation at the local University Hospital. I was amazed to learn that they even have a leaflet for people with inflammatory arthritis (published by the Swiss Society for Nutrition in German and French). There I was told that many elements of a Mediterranean diet can help reduce inflammation.

The picture shows me with my kids eating a Mediterranean diet on holiday in 2014. We were doing it years ago!

Family holidays in Sicily

The first thing is to guard against Osteoporosis. I‘ve had reduced bone density since my mid-forties, so that means making sure I get enough calcium (Fish, cheese, yogurt, various seeds – you can find information on the web) and Vitamin D (supplements and going out into the sunshine).

People affected by inflammatory arthritis need a lot of protein, which is contained in meat, fish, eggs, dairy products, beans and pulses. Some of those foods may promote inflammation, as I explain below.

If there are foods that promote inflammation, then people like me should avoid them, and eat more foods that are anti-inflammatory. That’s where the Mediterranean food comes in. As is well-known many Western diets contain high levels of Omega-6 fats, in particular arachidonic acid. These are considered to promote inflammation and are found in meat, eggs and high fat dairy products. Our Western diets contain a lot of arachidonic acid. So according to the advice I received, these should be reduced as much as possible. The anti-inflammatory „good“ foods contain Omega-3 fatty acids, like fish – so cod-liver oil really is good for you! – and certain oils. Oils that are particularly good are Linseed (we had that at home when I was a child, but it was only used to grease Cricket bats), walnut oil and rapeseed oil. To my disappointment olive oil is good, but not amongst the very best.

The last advice is to eat things containing something called Antioxidants because they scavenge „bad guys“ called oxygen radicals (who would think that something with the word oxygen in it would be bad for you?). You get your antioxidants if you eat lots of fruit and veg, and whole grain products, and nuts and seeds.

I was delighted with this advice, except it described quite well the way I eat anyway, and I‘ve still got active AS. What can I change?

I suspect that I still eat a lot of unhealthy food, even when I think that I am eating healthily. Ten years ago I visited Japan for 2 weeks.

Vegetable seller in Japan
Vegetable market in Japan
Pasta chef in Japan
Fresh pasta chef in Japan

The food was absolutely amazing, lots of weird greens and freshly made pasta. It was before my AS diagnosis, although I‘d had symptoms already for many years. I remember well how astonishingly energised and healthy I felt. I had no idea why but vowed to eat Miso soup for breakfast from then on. My promise to myself didn’t even hold a week! In the rural area in Switzerland where I live it was hard to find Miso for the soup, and my family preferred to start the day with traditional Swiss breakfasts…

Brunch bei Marlene und Sämi Wyss Rubi, Hagiboden
Traditional Swiss farmers’ breakfast

Maybe writing this blog will motivate me to try again and report in more detail in a later blog, on what I discover. The whole subject of diet is huge, and I find it quite complex.

Recently I went on a alpine trip collecting wild herbs. In the evening we prepared a wonderful 5-course meal with these plants. It was delicious, and again I felt marvellous afterwards. I’ll leave you with a picture of our starter.

Herbs from mountain meadows are delicious
Mountain meadows are a source of delicious herbs