Why the Burden of Chronic Disease Management Falls on Patients
March 30, 2025 · Frisian News
Health systems push responsibility for managing diabetes, heart disease, and other chronic conditions onto patients themselves, leaving many without the tools or knowledge to cope. Medical professionals expect people to monitor symptoms, take medications correctly, and change lifestyles without adequate support or training.
Margot van der Berg sits in her kitchen in Utrecht, surrounded by seven orange medication bottles. At 58, she manages type 2 diabetes, high blood pressure, and early-stage kidney disease. Her doctors have given her pamphlets about diet and exercise, handed her prescriptions, and told her to check back in three months. Since then, she has heard nothing from the clinic. When her blood sugar levels spike, she calls her doctor. The receptionist tells her to keep better records and asks her to email her readings. Van der Berg works full time and speaks only basic English, yet somehow she has become her own case manager, her own monitor, her own researcher.
This story repeats across Europe and beyond. Health systems treat chronic disease like a car that leaves the factory and never returns for maintenance. Doctors write prescriptions, patients bear the weight of following them. Nobody calls to check if medications cause side effects. Nobody tracks whether a patient actually takes pills as directed or simply gives up. The paperwork sprawls across multiple clinics and hospitals, none of which speak to each other. When something goes wrong, patients must piece together their own medical history and explain it again and again to different specialists.
The reasons are structural and financial. Hospitals and clinics measure success by throughput: how many patients they see, how quickly they move them through. They do not profit from keeping people healthy long term. Insurance companies pay for clinic visits and hospital admissions, not for phone calls, text reminders, or weekly check-ins that might prevent a crisis. A nurse spending an hour helping a patient understand their condition generates no revenue. A patient who calls the emergency room at midnight with a preventable complication does generate revenue, so the system does not resist that outcome.
Meanwhile, patients like Van der Berg must become experts in their own conditions. They buy blood sugar monitors and blood pressure cuffs. They read websites and watch YouTube videos, many of them misleading or wrong. They guess at which foods affect them because nobody trained them in nutrition. They skip doses or take them wrong because the instructions confuse them. Some fall into denial and stop checking their blood sugar altogether. Others spiral into anxiety, obsessively tracking numbers and changing their behavior based on incomplete information.
The gap between what doctors expect and what they actually support grows wider each year. Health systems have built an illusion of care, one where the hard daily work falls on people who never chose to become nurses, pharmacists, or nutritionists. Real change would require clinics to staff themselves for actual patient management, not just diagnosis and prescription. It would require insurance to pay for prevention. It would require systems that speak to each other and to their patients. That change costs money upfront, and the people who control budgets do not answer to chronically ill patients. They answer to boards, shareholders, and politicians who rarely feel the weight that Van der Berg carries every single day.
Margot van der Berg sit yn har keukentafel yn Utrecht, omrjochte troch sânhundert orizanje medisynteboasjingen. Op 58-jier-ielde behearret se type 2 diabetes, heech bloedruk en ier-stadia niersfalen. Har doktors hawwe har folders oer dieet en beweging jûn, resepten útskrearn en sein dat se oer trije moannen werom moatte. Sûnt dy tiid hat se neat fan de klinik heard. As har bloedsúkernivo's omhichgean, belt se har dokter. De reseptyste seit har better oantekkenings te meitsjen en fraget har de nivo's per e-mailtsje te stjoeren. Van der Berg wurket fulltime en sprek allinne basich Ingelsk, dochs is se har eigen casemanager, har eigen monitor, har eigen ûndersiker wurden.
Dit ferhaal herielt sych yn hiel Europa en fierder. Sûnensystemen behannelje chroniske sykte as in auto dy't de fabryk ferlit en noait mear werom komt foar ûnderhâld. Doktors skriuwe resepten út, patiïnten drage it gewicht fan it folgjen derof. Neinoby belt om te kontrolearjen oft medisinen bihawkriten feroarsaakje. Neinoby folget oft in patiïnt pillen echt nimmet lykas foarskreaun of it ienfâldichwei opjout. It papiertwurk ferspriedt syk oer mear klinieken en sikehûzen, dy't net mei-inoar sprekke. As wat ferkeard gaat, moatte patiïnten har eigen medisinysk skiednis sammele en hieltyd wer oan oare spesijalisten útleine.
De redenen binne struktureel en finansjeel. Sikehûzen en klinieken mjitke suksès oan trochfier: hoefolle patiïnten se sjogge, hoe gau se harren ferpleatse. Se wince net by it op lange termyn sûn hâlde fan minsken. Fersekerings-maatskippijen betelje foar klinikbesoeken en sikehûsopnames, net foar telefoantsje, herinnerings-SMS'tsen of weklikse kontrôles dy't in krisis foarkomme kinne. In fersoargster dy't in oere brûkt om in patiïnt syn aandwaning te begripen, genereart gjin ynkomsten. In patiïnt dy't 's nachts nei de hurde poliklinyk belt mei in foarkomber komplicaasje genereart wol ynkomsten, dus it systeem werjochtet syk net tsjin dy útkomst.
Intusken moatte patiïnten lykas Van der Berg eksperts yn har eigen aandwainingen wurde. Se keapje bloedsúkermeters en bloedrukmeters. Se lêze webstâns en sjogge YouTube-fideos, folle derfan misleidend of ferkeard. Se gokke hokker mattearre harren beynfloedzje, want neinoby hat harren yn nutrition eltsjoen. Se slegge doses oer of nimme se ferkeard, want de ynstruksjes ferwarje harren. Guon falle yn ûntkenning en stappe hielendal op mei it kontrolearjen fan har bloedsúker. Oaren spiralizearre yn ange en folgje sifers obsessyf, feroarjend har gedrach op basis fan ûnfolsleine ynformaasje.
De gat tusken wat doktors ferwachtsje en wat se wirklich stypje, bekomt elk jier breider. Sûnensystemen hawwe in sjen fan soarh boud, wêr't it swier deichaldaag wurk op minsken falt dy't nea foar fersoarger, apotheker of nutritionist hawwe keazen. Echte feraning soe easke dat klinieken harren sels útrûste foar wirklich patiïntbehear, net allinne diagnosa en resepsjun. It soe easke dat fersekeringjen preventsjun betelje. It soe systemen easke dy't mei-inoar en mei harren patiïnten sprekke. Dy feraning kostet jild foaroan, en fol dy budsjetten kontrolearje, antwurdzje net oan chronisk syke patiïnten. Se antwurdzje oan boards, oandielhâlders en politisi dy't selden it gewicht fiele dat Van der Berg elke dei drage.
Published March 30, 2025 · Frisian News · Ljouwert, Fryslân