National postinfectious illness telehealth 4 ME/CFS, Long Covid & related illnesses
What are the problems this idea aims to solve?
Currently few doctors have the skills to appropriately manage patients with these highly debilitating illnesses. There is no medical specialty for postinfectious illness. In this vacuum, much of the current medical training for these illnesses is well out of date or has been captured by commercial interests proposing unevidenced and at times harmful treatments.
Most doctors are overworked. In an ideal world all doctors would upskill and also have enough time to spend with patients who may have multiple needs. Notwithstanding some valiant and appreciated individual efforts, in the real world this isn't happening at the necessary scale and many patients are suffering as a result.
Data-wise postinfectious illness in NZ is a black box. What's the epidemiology, what do patients need, which needs are unmet, do Māori and minority communities have additional unmet needs, what are the impacts on and outcomes for patients, what are the economic impacts, etc etc etc? No data is being collected on any of these questions, nothing is being measured. Meaning nothing is being improved.
A possible solution:
The establishment of a national specialist telehealth centre for postinfectious illnesses like ME/CFS, Long Covid and related illnesses would address these and several other gaps in the NZ health system. A Centre of Excellence would be excellent!
The centre would be staffed by doctors and allied health professionals specialising in these illnesses, and they would specifically follow research developments in the field and engage with patient support organisations to ensure clinical decisions are both evidence-based and relevant to patients' needs.
Patient consultations would be direct via telehealth (especially for patients so severely ill as to make travel even to their local GP, let alone specialists further afield, impossible). Additionally the centre would liaise with and support patients' own GPs and other healthcare providers, for example by assisting with correct diagnosis and by advising on up-to-date, best-practice treatment, management and support options.
The centre would be responsible, together with patient representatives, for developing education materials for the wider medical workforce.
The centre would assist with research and with recruiting research participants for approved studies into these severely understudies illnesses.
The centre would be overseen by a board with strong patient representation. While 'nothing about us without us' should be a matter of course it is particularly necessary in the case of postinfectious illness because patients have been - and continue to be - so badly failed by the NZ health system.
Why the contribution is important
Several other ideas on this topic have been put forward already. Together with the numerous comments they have attracted, these ideas describe in detail the many ways in which people with ME/CFS, Long Covid and related illnesses are being failed by the New Zealand health system.
My idea proposes a single solution to address several of those deficiencies in the clinical and research areas.
Other contributors have proposed solutions in the area of support for patients in the community; my idea complements and supports these. Together our proposed solutions have the power to significantly improve the quality of life for a patient group that has been ignored for far too long.
by vision4ME on April 10, 2023 at 07:36PM