Initial Report Final

I sometimes pay as much as $70 for phone consultations, with no Medicare rebate, but I am very grateful for this
option all the same. I find that if I am well prepared, phone consultations are just as beneficial as face-toface. I had to stop treatment and investigations with my doctor because I couldn't afford telephone appointments. His clinic was in Sydney and I lived in Brisbane. It seems unfair that normal people who can go out and enjoy life without such restrictions, can go to the doctors and get 100% covered, when we are left to pay for ourselves on top of everything else. Have wanted to use such services [phone or Skype] at times to avoid difficulties in physical visits to doctor - extra fatigue and extra symptoms from preparation to go out, car travel, walking distance, waiting times, chemical sensitivity issues being in public places - however, have not used such services because of the fees and lack of Medicare rebate, i.e. expensive option for doctors who would bulk bill me in person. We are excluded from essential medical care because we cant get to the doctors need to treat us and we get sicker. I have had ME for over 20 years, very few doctors understand it or realise how very debilitating and painful it is. I have found Dr X, the only doctor who has helped me, but because now, I am mainly housebound because of the illness, and the distance to see this doctor, phone consultations are really the only option I have. However, I am reluctant to have them as they are expensive as there is no Initial Report financial rebate from Medicare. This is unfair as although I am not on a pension, and I have paid a lot in taxes from over the years, I now feel I should be able to get a rebate from my doc tors phone consultations which I would limit to three timesOnline a year.Survey I do not this unreasonable, and like this service to be implemented for ofthink Use of Phone and Skype forwould Consultations with Doctors people like myself to try and make life a little easier. With dysautonomia there are no known specialists [in this State] but there are two interstate that my doctor would ideally like me to be able to access, but there's no way of doing this with the cost involved. My condition and my mean I am immune suppressed, Conducted by Change for medications ME Inc so sitting in a waiting room with ill people to simply get a script renewal, opinion or something else that could be easily done over the phone/internet is dangerous and a health risk. I have often ended up . . . infections including pneumonia, the flu, . . . and chest infections from 2013 these routine visits. A wider acceptance of people's September inability to leave the house is desperately needed. Education for general practices in telehealth (Skype) would be very helpful, my GP was not comfortable enough to try it and there was no one in the clinic that knew more about it. Long-term chronically ill patients need a solution that's both affordable and tailored to their disability. After travelling on the plane it takes weeks for me to recover both health wise and financially. I have to use phone consultations because of this distance. I am on a disability support pension. Surely there could be some way of registering for phone consults so that bulk billing/Medicare rebate would be available. One of my consultations cost $600! I sometimes pay as much as $70 for phone consultations, with no Medicare rebate, but I am very grateful for this option all the same. I find that if I am well prepared, phone consultations are just as beneficial as face-to-face. I feel that the medical system discriminates against the severely ill and punishes us for not having an acute easily diagnosable and treatable condition. Often doctors who specialise in your condition are not located in your state. How about teleconferencing for these patients. Their need is as great or greater than those in regional or rural areas - ME doesnt discriminate. City people are also harmed by the disease. Have wanted to use such services [phone or Skype] at times to avoid difficulties in physical visits to doctor - extra fatigue and extra symptoms from preparation to go out, car travel, walking distance, waiting times, chemical sensitivity issues being in public places - however, have not used such services because of the fees and lack of Medicare rebate, i.e. expensive option for doctors who would bulk bill me in person. I am also conscious of the fact that doctors have a right to be financially rewarded for their years of training and their commitment to ongoing education. For this reason I feel that
reimbursed for all or at least 90-95% of the consult, regardless of the fee.
Summary The online survey was completed by 94 people in Australia Most of the respondents suffer from emerging neuroimmune diseases which make them physically unable to attend appointments. Alternatively, the exertion of attending appointments and/or environmental factors experienced while attending appointments can cause a significant negative impacts on their health. Additionally, many are unable to find doctors locally with the specialist knowledge required to diagnose and treat them. The survey found that people with these conditions may delay or go without a medical consultation due to the cost of phone and Skype/telehealth consultations. These delays can result in stopping treatment and/or worsening health. Of the survey respondents, 78% of respondents had delayed or gone without a consultation with a doctor due to the affordability of phone or Skype/telehealth consultations. Of the 72% of respondents that had used phone consultations with a doctor in the past two years, more than half (51%) used them four times per year or more. Many (55%) incurred AUS$100 or more in out-of-pocket expenses for their consultation. Most (81%) felt these consultations would have been bulk billed if they had been able to attend the doctors practice. Of the 31% of respondents that had used Skype or telehealth consultations with doctors, more than half (52%) had used them four times per year or more in the past two years. Of those using Skype/telehealth, 82% were not bulk billed and 73% were usually outof-pocket by more than $100. Often respondents (39%) felt the consultation would have been bulk billed if they had been able to attend the doctors practice. Most respondents (93% of those using phone and 80% of those using Skype/telehealth) felt that they were discriminated against by Medicare because they were too unwell to attend consultations at the doctors practice and no rebate was provided for their phone or Skype consultations
Initial Report from Change for ME Inc Online Survey of Use of Phone and Skype for Consultations with Doctors Change for ME Inc (September 2013 )
1. Aim Change for ME Inc wanted to learn more about how people who are housebound due to illness use phone and Skype consultations with doctors. It was especially interested in the financial impact and need for Medicare rebates. Change for ME intends to use the information from this survey to inform its work plan and increase public awareness about the issue.
2. Method A survey of 22 closed and open questions was created and published in Survey Monkey (www.surveymonkey.com/s/5DC8LGF). The survey was opened online on 22 August 2013 and promoted on the charitys Facebook page (www.facebook.com/changeform eaustralia). Additionally, users of the page were invited to share the link widely. Change for ME also wrote to the following charities, likely to have members who are bedridden or housebound and asked them to share or promote the survey: Arthritis Australia Cancer Council Queensland Cystic Fibrosis Australia Friedreich Ataxia Network Lupus Australia, Qld Inc. Lyme Disease Association of Australia MND Australia MND NSW MS Australia Parkinsons Queensland Inc. Parkinsons Victoria
It is known that the link to the survey was published on the Facebook pages of: Fibromyalgia ME CFS Australian Bridge and Pathways ME CFS Australia (Victoria) ME CFS South Australia ME CFS Western Australia
Additionally, notices about the survey on the Change for ME Facebook page had 2209 viewings. During the survey, reminders were published to encourage people to complete the survey. The survey was closed at 5pm on 21 September 2013
3. Findings Between 22 August and 21 September 2013, 94 people completed the survey; 12 of these were on behalf of a loved one. Respondents were based in all states of Australia. The majority were from Queensland (32%), Victoria (26%) and New South Wales (19%). Fifty-six percent of respondents lived in capital cities and the remainder identified as living in rural or regional areas.
3.1 Health The majority of respondents identified as having Myalgic Encephalomyelitis, Chronic Fatigue Syndrome, Lyme Disease and Fibromyalgia which is consistent with followers of the Change for ME site and those sites that promoted the survey. Table 1: Primary conditions given by respondents Given condition/s Bilateral Ramsay Hunt Syndrome/Chronic Neuropathy/ME/FM Broken spine/Partial paraplegia Cancer CFS CFS/Dysautonomia CFS/Dysautonomia/FM/Lyme Disease CFS/FM CFS/FM/Depression/Anxiety CFS/FM/CRPS CFS/ME CFS/ME/FM CFS/ME/FM/EDS CFS/ME/Schizophrenia CFS/POTS Chronic fatigue/Anxiety/Cancer in remission Chronic fatigue/ME/FM/Degenerative Disc Disease EDS (Dysautonomia/ME/CFS) FM Lupus Lupus SLE Lyme disease Lyme/Candida/Digestive issues Lyme disease/CFS Lyme disease/ME Lyme disease/ME/FM MCS MCS, POTS/NMH/ME, Lyme Disease/FM No. 1 1 1 5 1 1 3 1 1 17 1 1 1 2 1 1 1 1 1 1 22 1 2 2 2 1 1
ME ME/FM MS MS/Lyme ME/MCS Neurological condition POTS POTS/ Dysautonomia POTS/Hypermobile EDS Primary sclerosing cholangitis ulcerative cells Tetraplegia Total
Abbreviations CFS: Chronic Fatigue Syndrome CRPS: Complex Regional Pain Syndrome EDS: Ehlers Danlos Syndrome FM: Fibromyalgia MCS: Multiple Chemical Sensitivity
9 2 1 1 1 1 1 1 1 1 1 94
ME: Myalgic Encephalomyelitis MS: Multiple Sclerosis NMH: Neurally Mediated Hypotension POTS: Postural Orthostatic Tachycardia Syndrome SLE: Systemic Lupus Erythematosus
3.2 Reasons for using phone and telehealth consultations Most of the respondents live with conditions that cause them to be housebound either permanently or sometimes, i.e. they are not sufficiently well to travel to a doctors practice. Twenty-seven percent of respondents were too unwell to leave their house for doctors appointments and a further 65% were sometimes too unwell to leave their house for appointments. Home visits are not often offered. Additionally, many of this surveys respondents suffer from emerging neuroimmune conditions for which it can be difficult to find local doctors with the necessary specialist knowledge. I had to stop treatment and investigations with my doctor because I couldn't afford telephone appointments. His clinic was in Sydney and I lived in Brisbane. A survey respondent With dysautonomia there are no known specialists [in this State] but there are two interstate that my doctor would ideally like me to be able to access, but there's no way of doing this with the cost involved. A survey respondent Avoiding travel, whether to the local doctor or thousands of kilometres, was important to many respondents managing tight budgets and the illness exacerbating effects of exertion. Distance and cost is the biggest hurdle, so a phone consultation is a much better option for me. My consulting doctor is 2000kms away. This phone option is much cheaper than a plane
ticket, accommodation and to travel such a long way I need to have a companion (doubling the cost) so although a Skype/phone consultation is much cheaper than flying to see the doctor, the cost is still enormous when I cant work full time, and I have a large cost for medications to treat my condition. Even if part of the consultation cost was covered by Medicare that would take some of the burden off my shoulders. A survey respondent Aside from the impact of travel on health, visits to doctors posed other health risks for some respondents. Have wanted to use such services [phone or Skype] at times to avoid difficulties in physical visits to doctor - extra fatigue and extra symptoms from preparation to go out, car travel, walking distance, waiting times, chemical sensitivity issues being in public places - however, have not used such services because of the fees and lack of Medicare rebate, i.e. expensive option for doctors who would bulk bill me in person. A survey respondent My condition and my medications mean I am immune suppressed, so sitting in a waiting room with ill people to simply get a script renewal, opinion or something else that could be easily done over the phone/internet is dangerous and a health risk. I have often ended up . . . infections including pneumonia, the flu . . . and chest infections from these routine visits A survey respondent 3.3 Use of phone consultations Seventy-two percent of respondents had had at least one phone consultation with a doctor in the past two years. Thirty-eight percent of these used phone consultations one to three times per year and 51% used them four times per year or more. More than half (55%) incurred AUS$100 or more in out of pocket For the last 2 phone calls I have spent expenses for the consultations. Forty-one percent over $600 of those who had used phone consultations A survey respondent indicated that they felt the doctor would have bulk billed them for a similar face to face consultation.
I sometimes pay as much as $70 for phone consultations, with no Medicare rebate, but I am very grateful for this option all the same. I find that if I am well prepared, phone consultations are just as beneficial as face-to-face. A survey respondent
Consultations were mainly with GPs and specialists, but a few respondents also listed nondoctor consultations (e.g. counsellor, naturopath and nutritionist). The doctors consulted with were in cities (73%), rural or regional areas (16%) and overseas (11%).
Most respondents (93%) indicated that they felt Medicare discriminated against them by not offering a rebate on phone consultations for housebound people, while the remaining 7% were unsure. One said: I feel that the medical system discriminates against the severely ill and punishes us for not having an acute easily diagnosable and treatable condition . A few respondents indicated that they were in a pilot to improve access to Medicare rebates. One recipient suggested that teleconference It seems unfair that normal people who can go out facilities should be made available for the and enjoy life without such restrictions, can go to housebound, while another said it was not just the doctors and get 100% covered, when we are left to pay for ourselves on top of everything else. the housebound: Often doctors who specialise in your condition are not located in your state . A survey respondent
3.4 Use of Skype/telehealth consultations Thirty-one percent of respondents had used Skype or telehealth consultations with doctors. Of these, more than half (52%) had used them four times per year or more in the past two years. Of those using Skype/telehealth, 82% were not bulk billed and 73% were usually outof-pocket by more than $100. Thirty-nine percent of the respondents believed they would have been bulk billed if they had consulted with the doctor face-to-face and 26% were not sure. The majority of consultations were with GPs and specialists, but a few people also listed non-doctors (physiotherapist, exercise physiologist and naturopath). The doctors consulted with were based in cities (51%), rural or regional areas (17%) and overseas (31%). Most (81%) of the respondents felt discriminated against by Medicare due to the lack of rebate. One said: How about teleconferencing for these patients. Their need is as great or greater than those in regional or rural areas - ME doesnt discriminate. City people are also harmed by the disease. 3.5 Ability to pay Of the 94 respondents, 73 (78%) indicated that they had delayed or gone without a medical consultation because they were unable to afford it. Many of the respondents spoke about how the inability to travel to consultations combined with the inability to pay for consultations had resulted in having to stop treatment and/or their health worsening. We are excluded from essential medical care because we cant get to the doctors need to treat us and we get sicker. A survey respondent
My consultations at the medical clinic are usually about one hour long, costing about $155, with a $75 Medicare rebate. I could not afford phone consults without a rebate which means I miss out on much needed care/advice. A survey respondent
One respondent suggested that an ability to attend clinics for consultations could have wider financial consequences. We need medical treatment like everyone else. Home visits are also required because Centrelink with-holds payment if we don't provide medical certificates but there have been too many occasions where I was not well enough to make it to the doctor's surgery to get one. It is absolutely incomprehensible that I have come close to being evicted and becoming homeless so many times because I could not get to a doctor's surgery to get a medical certificate and therefore had payments cut off. A survey respondent Respondents also identified a need for more doctors to offer phone/Skype consultations. Many doctors are reluctant to even do the appointments, even if we pay out-of-pocket. Because of this I went for nine months at a time when my condition was sometimes lifethreatening, without medical care from a GP, until I found one who would consult with me via Skype/phone without first having to have a face-toface appointment. A survey respondent I have had to pay for home visits for basic services like repeats and referrals because most doctors refuse phone consults. A survey respondent
3.6 Respondents recommendations for phone/Skype consultations for the chronically ill and housebound Often respondents identified a need for doctors to earn an income to match their training and the need to establish a rebate system for phone or Skype consultations in such a way that it would be difficult to abuse or rort. A. An income assessed reimbursement I am also conscious of the fact that doctors have a right to be financially rewarded for their years of training and their commitment to ongoing education. For this reason I feel that doctors shouldn't have to reduce their fees for things like Skype consults or even their face to face appointments. I think there should be a better system that allows patients without a sufficient income to be reimbursed for all or at least 90-95% of the consult, regardless of the fee. This would allow doctors to maintain a deserved income, and it would also enable doctors to continue to fund ongoing training. If we push too hard for bulk billing options for everything, we will threaten the sustainability of our doctors incomes. Doctors who bulk bill are those who feel a moral responsibility to help those in need. It's this very trait that makes their longevity vulnerable - insurance and running costs are so high these days. A survey respondent
B. An annual entitlement of phone consultations I have had ME for over 20 years, very few doctors understand it or realise how very debilitating and painful it is. I have found Dr X, the only doctor who has helped me, but because now, I am mainly housebound because of the illness, and the distance to see this doctor, phone consultations are really the only option I have. However, I am reluctant to have them as they are expensive as there is no financial rebate from Medicare. This is unfair as although I am not on a pension, and I have paid a lot in taxes over the years, I now feel I should be able to get a rebate from my doctors phone consultations which I would limit to three times a year. I do not think this unreasonable, and would like this service to be implemented for people like myself to try and make life a little easier. A survey respondent C. A register After travelling on the plane it takes weeks for me to recover both health wise and financially. I have to use phone consultations because of this distance. I am on a disability support pension. Surely there could be some way of registering for phone consults so that bulk billing/Medicare rebate would be available. One of my consultations cost $600! A survey respondent D. A person centred approach Long-term chronically ill patients need a solution that's both affordable and tailored to their disability. A survey respondent E. Education Education for general practices in telehealth (Skype) would be very helpful, my GP was not comfortable enough to try it and there was no one in the clinic that knew more about it. A survey respondent F. A change in culture A wider acceptance of people's inability to leave the house is desperately needed. A survey respondent
4. Conclusions Chronically ill and housebound people may struggle to access timely medical care due to a lack of home visits and the affordability of phone and Skype/telehealth consultations. This small online survey found that 78% of respondents had delayed or gone without a medical consultation due to the cost of phone and Skype/telehealth consultations. More than half (55%) had incurred dAUS$100 or more in out-of-pocket expenses for a phone consultation that many felt would have been bulk billed if they could have atte nded the doctors practice. Thirty-one percent of respondents had used Skype or telehealth consultations with doctors. Of these, more than half (52%) had used it four times per year or more in the past two years. Of those using Skype/telehealth, 82% were not bulk billed and 73% were usually out-of-pocket by more than $100. Again, many felt the consultation would have been bulk billed if they had been able to attend the doctors practice. The majority of the respondents believed that they were discriminated against by Medicare due to the lack of the rebate. Those who are well enough to attend a doctor are supported, while those who are severely ill may be forced to draw on tight pension budgets or dwindling savings to pay for consultations. Aside from lacking the ability to attend consultations, many of the respondents relied on phone and Skype consultations because they lacked local access to specialist doctors. The majority of respondents to the survey suffer from emerging neuroimmune conditions which suffer from a scarcity of specialist doctors and knowledge about diagnosis and treatment. Many of the respondents seek a Medicare rebate for phone and Skype consultations with doctors and want more doctors to offer these consultations. There is a sense that the current system does not recognise that some people cannot leave their homes or suffer significant health consequences as a result of leaving their homes. Additionally, people with emerging neuroimmune diseases often cannot find the necessary specialist medical knowledge locally. Suggestions for addressing the issue of housebound, chronically ill people delaying or forgoing a consultation with a doctor were: Establishing a Medicare rebate Establishing an annual entitlement of phone consultations Establishing a register of people able to receive phone consultations with rebates Educating doctors on consulting via Skype and phone Creating a person-centred approach to health care tailored for individual disabilities
5. Further work Change for ME Inc will publicise the findings of this survey and continue to collect data and personal experiences on this topic.
6. A note about Change for ME Inc Change For ME Inc is a charitable organisation dedicated to providing information, support and advocacy for Australians affected by neuro-immune illnesses such as Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS), Lyme Disease, Multiple Chemical Sensitivity and Fibromyalgia. These complex, multi-systemic illnesses cause intense suffering, and approximately one quarter of sufferers are house-bound or bed-ridden, cut off from the outside world, and dependent on others for help with basic tasks such as preparing meals, bathing, and mobility. Yet these very ill Australians currently have very little access to basic support services. Our vision is to help sufferers of these conditions feel supported, connected, informed and visible. Find out more Web: www.changeforme.net Facebook: www.facebook.com/changeformeaustralia Twitter: twitter.com/change4meau YouTube: www.youtube.com/user/Change4MEAustralia Email: change.4.me.australia@gmail.com
Thank you
to all those who are severely ill and housebound or caring for a loved one who generously gave their time to complete our survey.
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I sometimes pay as much as $70 for phone consultations, with no Medicare rebate, but I am very grateful for this

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