Published: 1 November 2023
Emerge Australia, the national patient organisation for people living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and long COVID, says a recommendation to reduce access to telehealth services further disadvantages people already struggling to access health care.
The Medicare Benefits Schedule Review Advisory Committee (MRAC) has supported the removal of initial non-GP telehealth consultations from the MBS, a list of health professional services subsidised by the Federal Government.
In addition to making the initial consultation with non-GP specialists face-to-face, the post-implementation review of MBS Telehealth items, supports a face-to-face appointment once a year, known as the 12-month rule.
Interested parties have until November 6, 2023, to comment on the draft.
Emerge Australia has submitted that this is potentially harmful for people who are bed/house-bound or immunocompromised, such as those with ME/CFS and long COVID.
“A group of these patients experience orthostatic intolerance and post-exertional malaise so attending medical appointments in person makes them sicker or they simply do not seek medical care,” Emerge Australia chief executive officer Anne Wilson said.
“People who are immunocompromised are at risk when accessing in-person healthcare because of lack of airborne infection prevention, particularly since the removal of mask mandates, testing and isolation of healthcare workers. People in rural/regional areas may not be able to access care locally as specialists are predominantly city-based. “
ME/CFS often takes years to diagnose, requiring multiple initial non-GP and ongoing GP telehealth consultations. Patients with long COVID have reduced access to treatment options with long COVID clinics recently reducing their capacity or closing.
These patient cohorts will be particularly affected if MRAC’s recommendation to cease initial non-GP consultations is implemented.
Ms Wilson says the MRAC recommendations are at odds with the Disability Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability Final Report (September 2023) which recommended the introduction of a Disability Rights Act.
“If the Act is accepted, people with disability, such as those with severe ME/CFS and long COVID, will have the right to equitably access health services adapted to meet their needs enshrined in law,” she said.
The revised Telehealth Principles state that “telehealth items should be patient-focused and based on patient need, as determined by the clinician and the patient”.
She says this requires a “vulnerable population” exemption to broaden Recommendation 9 to include the exemption for initial GP consultations where inequity of service is widely acknowledged, and lack of Telehealth access would be highly detrimental for the patient. It also means that the “12-month rule” for a face-to-face consultation in the previous 12 months should be modified so as not to specify the format (thereby permitting face-to-face or telehealth). This ensures patients can have an enduring clinical relationship with their health practitioner regardless of the format of consults.
Ms Wilson points to Linda* as one of many people who would be disadvantaged.
“I don’t know what I’d do if Telehealth was taken away now. Since the introduction of Telehealth during COVID, I’ve been able to see much-needed specialists for the first time since I became homebound. I see six specialists regularly via telehealth now (cardiology, immunology, gastroenterology, opthalmology, endocrinology, and neurology for migraine) as well as Telehealth GP appointments. It’s been a huge boon to my health in so many ways. Many symptoms have improved because I can now access medications and specialist knowledge. I’m really afraid of the government taking that away again. There’s no way I could pay for all those appointments in full on a disability pension,” Linda said.
Ms Wilson says the longer people are undiagnosed, the more likely they are to receive inadequate or inappropriate clinical care, and prolonged and traumatic experiences in accessing Centrelink and NDIS support.
“Every Australian should have the right to access healthcare in a format that meets their clinical needs”.
Anne Wilson, Linda* and Jane* (case study next page) are available for interview. Contact Claire Heaney 0421 612 507
*Linda and Jane are not their real names.
Linda has a complex medical history including ME/CFS.
In 2019, Linda was unable to access medication because she could not attend a face-to-face cardiologist appointment due to post-exertional malaise (PEM).
To access Midodrine, Linda must attend an outpatient’s appointment at the Alfred Hospital. Due to multiple complex health conditions she could no longer leave the house. She had a private script for Midodrine but as she is on the Disability Support Pension, she cannot afford a $200 a month prescription fee. If Linda is under the care of a public hospital, she can access this medication for $6.50 per month on the Pharmaceutical Benefits Scheme. One third of her disability support pension goes to medication for her complex medical conditions.
Linda has a long, complex medical history. Midodrine is used to manage two of her diagnosed conditions associated with ME/CFS: Postural Orthostatic Tachycardia Syndrome (POTS) and Neurally Mediated Hypotension (NMH). Without Midodrine Linda suffers: increased pre-syncope light-headedness, dizziness, slight tunnel vision, tachycardia and breathlessness, increased recovery time after minimal exertion and increased fatigue. It is significantly harder to think clearly, find the correct words to use, write emails and connect socially with her online support groups. Linda is in the top 1% of disabled Australians and lies flat in bed all day except for toilet trips.
One of the most difficult symptoms to manage is called post exertional malaise (PEM). PEM is worsening of all symptoms, due to attempting activity outside of a carefully managed “Energy Envelope”.
Linda says: “The whole process of stretcher transfers for a 5-minute outpatient appointment takes 8+ painful and exhausting hours. This exhausting and stressful process triggers severe symptom exacerbations which take up to a month to settle down. During that time I have severely increased pain, more frequent hemiplegic migraines, increased dysautonomia symptoms, increased fatigue, and other symptoms. At this point, I just can’t go through that anymore.”
Jane has long COVID.
Jane, a 55-year-old school librarian, has been grappling with the debilitating long-term effects of COVID-19 since contracting the virus in early 2022. When she presented to Clinic Nineteen Telehealth clinic in March 2023, her life had become severely restricted. Spending only around 4 hours a day out of bed, she found everyday tasks like showering, cooking and even watching TV almost impossible to manage. Walking aids became mandatory for her to attend any appointments, whether medical or otherwise.
Despite the challenges she faced, the current healthcare system offered little flexibility. A recent visit to her general practitioner highlighted the difficulties she endures with in-person consultations. The clinic was running two hours behind, leaving her fatigued to the point where she needed two full days to recover from the experience. The situation became even more complex when she needed to consult with a specialist located 2 hours away. To manage the logistics, she had to prepare days in advance by resting. Her partner took leave from his job to drive her, and they spent the previous night at a hotel to break up the journey. Even with these preparations, they had to take a wheelchair and various sensory-reducing tools to make the trip manageable. The sheer exertion of the journey left Jane needing three days to recover, affecting not just her but also her partner and their financial situation due to the additional costs involved.
Jane’s experience paints a vivid picture of the pressing need for more telehealth options, especially for patients like her dealing with chronic or complex conditions. It’s not just about convenience; it’s about providing effective healthcare that doesn’t further compromise the well-being of the patient. The stress and physical toll of these in-person visits bring into sharp focus the limitations of a healthcare system that hasn’t fully integrated telehealth solutions for those who need it most.
