{"id":10357,"date":"2016-10-26T07:46:11","date_gmt":"2016-10-26T07:46:11","guid":{"rendered":"http:\/\/wames.org.uk\/cms-english\/?p=10357"},"modified":"2016-10-26T07:46:11","modified_gmt":"2016-10-26T07:46:11","slug":"severe-me-in-australia-suffering-ignored-and-denied-help","status":"publish","type":"post","link":"https:\/\/wames.org.uk\/cms-english\/severe-me-in-australia-suffering-ignored-and-denied-help\/","title":{"rendered":"Severe ME in Australia: suffering ignored and denied\u00a0help"},"content":{"rendered":"

ME Australia<\/strong> blog post, by Sasha Nimmo, 13 September 2016: Severe ME: Suffering ignored and denied\u00a0help<\/a><\/p>\n

Myalgic Encephalomyelitis is estimated to affect between 0.4% and 1% of the population, according to the\u00a0International Consensus Criteria<\/a>\u00a0primer for medical practitioners, endorsed by Australian patient organisations. In Australia, that is between 96,700 and 241,800 people (ABS population figures). Of those, 25% are so severely affected that they cannot leave their homes or even their bed.<\/p>\n

Between 24,000 \u2013 60,000 Australians have severe ME.<\/p>\n

Speaking to patients around Australia, a major hurdle is simply finding a GP who can visit them at home for basic medical care.<\/p>\n

\u201cThe most difficult thing for me when I was completely bedbound was having no medical professional who could come and see me as I was too ill to travel to the doctor. Advocating for myself to receive basic medical care was exhausting and stressful and very taxing on my health,\u201d patient in Victoria.<\/p>\n

\u201cWhat frustrates me most is how many doctors just do not understand how much we deteriorate after each visit, even if they say they understand severe ME. If they did they would do home visits,\u201d patient in South Australia.<\/p>\n

\u201cMy GP said he\u2019d be able to visit me at home as he could see I was deteriorating and getting to his practice was difficult. But when I rang to book a home appointment, he wouldn\u2019t see me at home and I was left without any medical care and without any help from the practice to find a new GP.\u201d<\/p>\n

\u201cThe pain medication I was on ran out, leaving me in severe pain and unable to walk the couple of steps to the kitchen to get food and water,\u201d\u00a0patient in the ACT.<\/p>\n

\u201cI cannot see a doctor at the time\u00a0I\u2019m having symptoms because I\u2019m too unwell to get out of the bed and get ready for the appointment. Of course, I\u2019m looked at with suspicious eyes when my symptoms ease and I can get in\u00a0for an appointment.<\/p>\n

\u201cI don\u2019t have medical degree or training so that I can explain my suffering the way they can get it\u2026\u201d patient in Queensland.<\/p>\n

All of these patients would only speak on the condition of anonymity.<\/p>\n

\u201cI wish to remain anonymous as I don\u2019t want to be mistreated by healthcare practices and\/or government agencies for advocating for ME anymore,\u201d patient in Queensland.<\/p>\n

For those who can find doctors, finding ones who understand the impact is hard.<\/p>\n

\u201cEducating doctors about ME, and particularly severe ME is crucial to patients being able to access appropriate care, which is sensitive to the unique disabilities severe ME brings,\u201d patient in Victoria.<\/p>\n

\u201cCanberra is the national capital but there are no specialists who know about ME here,\u201d patient in the ACT.<\/p>\n

\u201cIf the hospital and Disability SA had accepted how much I needed an electric wheelchair ages ago when I tried to apply repeatedly, both through hospital OT and Disability advocate from MALSSA, then I would not have deteriorated so far. Sad really, probably common everywhere. People overseas I think have the\u00a0impression Australia, especially Adelaide, has all these researchers. That doesn\u2019t\u00a0matter if none understand severe ME and can visit,\u201d patient in South Australia.<\/p>\n

\u201cI\u2019m scared, to be honest, \u00a0as no one really seems to understand just how really dangerous severe ME is,\u201d South Australian patient.<\/p><\/blockquote>\n

\u201cAll specialists I have been referred to (psychiatrists, cardiologists, neurologists, rheumatologists) either had the wrong idea or had no idea about ME nor CFS and they are supposed to deliver the best care for the patients,\u201d South Australian patient.<\/p>\n

\u201cSadly, the NCNED Clinic has closed its doors due to overwhelming demand. We need funds to train more clinicians and establish facilities, hopefully one in each state\/territory.<\/p>\n

\u201cVery rare GP specialists are very expensive, too far to travel, and possibly their diagnosis and treatment protocol are not the same,\u201d Queensland patient.<\/p>\n

What is needed: education, in-home support and policies for hospitalisation<\/strong><\/p>\n

\u201cWe need Centre for Excellence in ME in Australia, where medical and healthcare service providers can rely on facts and case studies about ME. I hope NCNED will take up on this role.\u201d Queensland patient.<\/p>\n

Patients say they need:<\/p>\n