I’m planning to document and collate more of my advocacy on this site. Mostly so that others can use my words as a template to save them energy (though my words are never perfect nor are they the only words you can use). I’ll collect the links on one page eventually but for now they’ll live in scattered blog posts like this one.

 

You can find the inquiry details here.

 

My suggestions are still largely the same in 2025 as they are addressing systemic issues that need changing. At the time I submitted it anonymously (number 185) as I was still very much hiding my needs from the world.

 

My submission

Specific problems and actions the government could take

 

Costs

It is a morally wrong issue with medical billing in Australia that patients have to have the full amount of cash up front for appointments. Even if the “gap” is “small” (there is far too much privilege in commentary about what a small gap means and I have concerns about affordability in this area if I end up unemployed and on welfare).

As an example: Under a chronic health management plan I have to have the full amount in my bank account to pay for physiotherapy. If I use my extras coverage I only need to have the gap cost. Why can a private business afford this gap only cash flow but not the government? It is totally back to front.

 

Suggested Action: as soon as possible, change the burden of costs so that patients have to have ONLY any “gap” amount in their bank account.

 

Access – Medicine

I am lucky to have a compounding chemist within a few kilometres of my home as one of my “standard” long covid medications can only be accessed at a compounding store.

This is a new development, previously when my husband (who doesn’t drive) had a compounded medicine I had to leave work early and drive to the back end of an industrial area to collect the medicine within limited opening hours. If that location was still my nearest compounding chemist I would not be able to access my compounded medicine as the drive would result in an increase of PEM symptoms for a few weeks after each trip.

Suggestion Action: ensure accessibility of all kinds of medicine to the population.

 

Access – Physically accessing Medical Care

Through the long covid Facebook group I have become aware of official (public) and unofficial (private) long covid clinics around Brisbane. I cannot access any as they are too far away for me and travel more than a few minutes leaves me a two week long flare.

 

Public transport is often not suitable for factors such as:

• Walking distance from home to nearest mode, walking from end stop to actual destination.
• Unreliable services risking appointment being missed.
• Extends the duration of time away from home which can worsen symptoms and extend PEM.
• Lack of mask requirement leading to unacceptable risk of further covid exposure.

 

Suggestion Action: Pay for cab (or other private) transportation to and from medical treatments for long covid patients. Do not use a reimbursement system and call this payment as reimbursement methods are impractical for lower incomes.

 

Access – Relevancy of Medical care

I am aware that at least one of the private long covid clinics in the Brisbane area seems to only treat the cardiac and respiratory type of long covid symptoms (possibly with the inclusion of the POTS symptom range too). I feel (though have not had the energy to clarify) that this is the case in other states. I do not have those types of symptoms so even if there was a long covid clinic in my medical catchment, it would likely provide me no support.

 

Suggestion Action: Include ALL symptoms of long covid in long covid clinics. Ensure that access includes telehealth and home visits for those who are housebound.

 

Access – Accuracy of Medical Care

Due medical bodies in Australia failing to update guidelines that remove Cognitive Behavioural Therapy and Graded Exercise Therapy due to the studies being flawed and dangerous for ME/CFS patients, I am at risk every time I see a practitioner that they will “prescribe” out of date and harmful treatments.

 

Suggested Action: Immediate update of guidelines to reflect accurate and current information, removing GET and CBT, and a high quality educational campaign regarding this removal for medical and allied health staff.

 

Access – Government payments

Permit people to access non poverty levels of government payments. It is emerging that radical (complete) rest can be a powerful method of combatting long covid and this is impossible if you have to work.

 

Suggested action 1: Ensure temporary and non stabilised illnesses are permitted for DSP access. Long covid is a new and evolving condition, old rules do not suit and will only continue to be a source of harm.

 

Suggested action 2: Remove partner income tests as these limit mobility for leaving partners.

 

Suggested action 3: Raise the payments to at least the Henderson line so that people do not live in poverty as this will not assist with any health condition.

 

Access – Indoor spaces

I would like to be able to return to an office workplace one day but do not want to catch every virus that flies through.

 

Suggested action: legislate air quality standards to lessen exposure risks in indoor environments.

 

Access – antivirals

There is a disconnect between who was a priority for vaccinations in the initial rollout and who can access antivirals. How can one person be so high risk that they were eligible for early vaccination but not high risk enough for antivirals?

 

Suggested action: where not contraindicated, allow long covid patients to access antiviral medications for subsequent infections.

 

Access – Work

My career opportunities have now been limited by the fact I am mostly housebound. I cannot commute and with companies viewing work from home as a treat or something equally frivolous instead of a critical accessibility requirement, I am limited for the foreseeable future about what jobs I can apply for. I have already had to take a step “back” in order to get a work from home job so I can keep a roof over my head. I am at risk of homelessness and suffering from a lack of career opportunities because the government decided it was ok to let a horrible virus rip through the community.

 

Suggested action 1: ensure accessibility for disabled staff is not lip service. Enforce laws. Review laws if needed.

 

Suggested action 2: change the unwritten faux morality culture of workplaces that work has to be done at a desk (or a standing desk). People who need bed rest can still work and shouldn’t have to hide this or miss out on opportunities because of it.

 

Access – Safe healthcare

I caught covid in an emergency department because the only space to sit turned out to be near the covid positive patients. At no time did staff tell us they had separated covid positive and non covid patients. Their neglect on some basic logistics that didn’t require medical skills, just some common sense, means I am now suffering.

 

Suggested action: require measures such as ventilation standards and high quality masks so that at risk people do not have to risk a first or subsequent infection in order to continue to access healthcare.

 

Systemic Issues

Many of the items I have brought up here are my experience from long covid but they are also systemic issues that others with chronic health conditions and/or disabilities experience.

 

Suggested action 1: Respect the energy (physical, mental, and emotional) that it takes to submit information to an inquiry such as this. Remove the ridiculous requirement that the submission must not be published somewhere else and must be unique to this submission. You do not own patient stories and claiming we can’t share them is rubbish. I will share my story where I please. Patient stories are everywhere and bureaucratic processes such as this need to adapt to those who are submitting, not to the whims of a fully abled public servant who doesn’t understand how difficult this is.

 

Suggested action 2: Pay for patient time with appropriate consulting fees. Chronically ill and disabled people have amazing lived experience which is valuable in getting to the real source of issues. Many of us also have underutilised skills due to inaccessible workplaces and with an accessible work environment can contribute to improving government services. We are not charity cases and should not be expected to want to constantly give our knowledge and experience for free.