STIMULATE-ICP-Delphi ... : Study protocol 2022 van der Feltz-Cornelis et al

Full title: STIMULATE-ICP-Delphi (Symptoms, Trajectory, Inequalities and Management: Understanding Long-COVID to Address and Transform Existing Integrated Care Pathways Delphi): Study protocol

Abstract

Introduction
As mortality rates from COVID-19 disease fall, the high prevalence of long-term sequelae (Long COVID) is becoming increasingly widespread, challenging healthcare systems globally. Traditional pathways of care for Long Term Conditions (LTCs) have tended to be managed by disease-specific specialties, an approach that has been ineffective in delivering care for patients with multi-morbidity. The multi-system nature of Long COVID and its impact on physical and psychological health demands a more effective model of holistic, integrated care. The evolution of integrated care systems (ICSs) in the UK presents an important opportunity to explore areas of mutual benefit to LTC, multi-morbidity and Long COVID care. There may be benefits in comparing and contrasting ICPs for Long COVID with ICPs for other LTCs.

Methods and analysis
This study aims to evaluate health services requirements for ICPs for Long COVID and their applicability to other LTCs including multi-morbidity and the overlap with medically not yet explained symptoms (MNYES). The study will follow a Delphi design and involve an expert panel of stakeholders including people with lived experience, as well as clinicians with expertise in Long COVID and other LTCs. Study processes will include expert panel and moderator panel meetings, surveys, and interviews. The Delphi process is part of the overall STIMULATE-ICP programme, aimed at improving integrated care for people with Long COVID.

Open access, https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0277936

 

I don't think there's going to be anything good out of medicine without heavy patient involvement, which is still so far rejected or abused tokenism. It's clear that medicine is not capable of doing anything here, the failure is too loud. They don't know what they're doing and they can't even see it.

I don't know how we get out of this, but so much for lessons learned from the AIDS crisis, because the way out of this mess is the same: the patients have to be involved every step of the way, the professionals are simply and completely out of their depth, having never seriously put any effort on chronic illness, and still refusing to.

But it's clear that most of the advocates are already burnt out, and sadly those who recovered from LC are not helping. Could have been the difference, but the issue has been politicized too much for that.

It doesn't say in the abstract, but the fix is in:

This is the approach that failed. Using the approach that failed in the first place never works. It's not meant to work. This is just completely broken.

I don't even think anyone could offer a coherent explanation for this. It's so arbitrary and wrong.

Planned obsolescence is a well-known topic in industrial manufacturing and economics. I don't think there is any comparison for planned failure. This all amounts to criminal negligence, people's lives cannot depend on such a thoroughly broken system. No wonder it's failing so hard.