Erik (65) is too complicated for the health service

- Imagine if we had thought like this when we built houses? That none of the various companies and professionals involved in the construction worked together, but only concentrated on their own specialties. It wouldn't have amounted to much!

Erik chuckles at the visual image he describes. Humor, and not least gallows humor, are two important ingredients in coping with everyday life as a chronically ill person with a number of different diagnoses.

But this is how he experiences the health service: Like a chaotic construction site where everyone involved is working haphazardly, without sufficient cooperation.

For more than a hundred years, the health service around the world has been set up to focus on a single diagnosis. As a result, it has evolved in an impressive way: Increasingly specialized specialists can cure more and more conditions. With access to impressive medical achievements, more and more patients are surviving serious illness. They get to continue their lives, despite complex and often multiple concurrent diagnoses. The problem is that the specialized health service continues to concentrate on one and only one field of expertise.

- It seems impossible to get someone to work together in an interdisciplinary way, so that they can check out different things at the same time and perhaps find the cause of my symptoms, says Erik.

He lives in Skaun municipality in Trøndelag, and says that there is often a month's wait to see a GP to get a referral to a specialist. Then months, and in the worst-case scenario years, before a specialist assessment and a new waiting time for any treatment. With multiple complex diagnoses, there are many such rounds that take time and, in the worst case, end without results.

- In such cases, the specialist should be able to refer to a new specialist directly, instead of constantly "going back to start", says Erik.

2200 pages of patient records

Erik describes it as exhausting to face everyday life in one of the world's best healthcare services. His confidence that it takes him seriously has become increasingly frayed.

- No one sees the big picture, and nothing is connected. My days consist far too much of finding out who might be able to help me, and then trying to reach them, he says.

The 65-year-old's medical history is so extensive that his GP has put it bluntly: He has no idea where to send Erik next. Because all the threads they have tried to tie up so far have had loose ends.

Erik's patient file already contains over 2200 pages! Converted into the novel series "My Struggle", Erik O. Huseby would now be well into volume five - compared to the page count in the popular novel series by Karl Ove Knausgård.

The problem with Erik's struggle is that it has no forward momentum. Several of the journal entries are from the same examination, which has been done several times without finding out why Erik experiences great pain on a daily basis.

- No matter where I am sent, the conclusion is the same: "We can't help", says Erik.

He is then sent back into, or further into, "the system" - to what appears to Erik to be an eternal round dance.

Carrying a "core journal" in his wallet

Since Erik's medical records have become so extensive, it is difficult to find out what his main ailments are today. So, with the help of his daughter, who is a doctor, he has made a card in his wallet that helps him keep track of his eight most serious diagnoses and a list of medications.

- There's not enough room for all my diagnoses on this card, but we've ranked the most dominant ones, he points out.

The card is designed both to help him explain his illnesses to new therapists, or as a quick insight if someone needs to treat him urgently in another health region or abroad and cannot access his medical records. Recently, Erik also needed the card in his own health region, as the specialist he visited at St. Olav's Hospital could not access any of the 2,200 pages in his patient record via the Health Platform.

- The specialist started the appointment by saying that after much searching in the system, he didn't know why I came to him. My record was completely blank! As if there weren't enough problems already," Erik sighs.

Three main issues

- The three main problems I have now are firstly the chronic nausea I've had for ten years. It's there every morning when I wake up. I'll say it straight out: Sometimes it's so bad that I think I just want to die! The next problem is that my breathing is blocked every time I bend over. I can easily walk 6-7 kilometers on a training run, breathe well and have no problem keeping a fast pace. But if my shoelaces come loose along the way and I have to bend down to tie them, I can't breathe.

The third problem is that Erik experiences an incredible amount of mucus being produced in his body.

- It's as if I'm constantly walking with a drop of soap in my stomach. It's bubbling and frothing something awful!

He suspects that at least two of the three symptoms are related, and believes they are side effects from previous treatment for some of his other diagnoses. But he hasn't managed to get the health service to see the connections - so far.

Patient partner

Erik is now participating as a patient partner in the Dignity Care research project in Tromsø. Not to get help for his own ailments, but to contribute with his complex patient story and in this way show the health service what it faces in terms of the need for collaboration. With him, as always, is his wife Siv. Although her husband seems to be functioning very well, he is struggling with memory problems following a severe cerebellar stroke in 2013.

- Without Siv, life would be considerably more difficult, if not unbearable, he says affectionately.

The two have been together for 40 years. And unfortunately, they have already experienced a significant number of "the bad days". Because health problems have always been a part of Erik's life.

Illness as a "normal condition"

Erik has had a heart attack and has had his heart valves replaced. He has also had surgery for sleep apnea and must sleep with a breathing machine every night. He has also been diagnosed with malignant prostate cancer, has undergone surgery for bowel obstruction and has had triple hernia surgery. He also has various occupational injuries and osteoarthritis operations.

Since his stroke ten years ago, he has been 100 percent unable to work. He used to have an active life as a farmer. Nevertheless, he tries to live life as best he can, despite all his health problems. But everyday life is often difficult to manage, both physically and mentally.

On top of all these health challenges comes the challenge of navigating and interacting with the health service. Erik doesn't give up looking for the right help. The hope of getting help with at least one of the three challenges he struggles with daily helps to keep him going.

- The most serious event is without doubt the stroke. "Since it happened, I've become more stressed than before, and I get irritable easily because I forget things. The stress can be described as brain panic. You may not see it, but I still have paralysis in half of my face, explains the 65-year-old.

- After the stroke, it was a bit like his personality changed, Siv confirms. She must keep the conversation flowing for Erik, especially when meeting new people.

- Friends and acquaintances don't usually notice my problems, but if I must use my memory to answer specific questions or get stressed, I need help. That's why Siv has to accompany me to all my consultations, he says.

Wants to simplify

As patient partners in Dignity Care, Erik and Siv will contribute their insights from years of experience with the health service. They want researchers to define tools that can simplify communication between patients/relatives and the health service, and not least between different therapists and service levels. Erik also believes that it must be easier for practitioners to get a quick and relevant overview of what is important to the patient at the time, even if the patient record contains 2,200 pages.

In the long term, they hope that digital tools can make it easier for chronically ill patients with multiple diagnoses to receive more comprehensive treatment, and thus prevent new health problems.

- I contacted project manager Gro Rosvold Berntsen when I read about Dignity Care, because something needs to be put in place that can create better overall and more effective treatment for us patients, says Erik O. Huseby, patient partner in Dignity Care.