Chronic Illness

4 petitions

Started 5 months ago

Petition to Medicare

Ketamine for Chronic Pain - Public Hospital

Give my own experience, I posted on a support group and there was an outpouring of the number of people that have been given the run-around, received the treatment before but now refused it, only been able to receive it as a private patient (which when most chronic illness warriors are either on the DSP or unemployed  due to their illness and can not afford private health) Ketamine is a highly specialised pain management drug. It was invented in the 1960s for use in anesthesia. These days it is mainly used in disaster relief or emergency anesthesia. Vets often use it as an anesthetic agent. Its use in the management of chronic pain arose when people recovering from anesthesia who had chronic pain reported improvements in their pain, which lasted sometimes for months following the ketamine anesthesia. Research into how best to use ketamine infusions is ongoing. The Wikipedia page for ketamine has a lot of background information regarding the use of ketamine in anesthesia, but only a little information about the type of infusion you will be having. My story comes from 5 years of Fibromyalgia along with other chronic illnesses, after my doctors and specialists recommended Ketamine to me as a 75% chance that I will be free of pain, I was excited BUT that is where it stopped, ever since (over 12 months) I have got the run around and told today it is because Medicare no longer cover Ketamine Infusion!What rubbish, it is an effective pain relief that kees people that are constantly in relentless pain cope with their burden of pain without opioids (oxycodone etc) that have a tendency to be addictive medications.Ketamine is given during an inpatient hospitalisation verse oxycodone that sees countless overdoses each year.Sign this petition, give chronic illness sufferers/ warriors a voice and make this treatment available with Medicare as a public patient.

Nicole Pfeiffer
27 supporters
Update posted 7 months ago

Petition to Greg Hunt

Government Funding for Lupus Research

If you don't know much about Lupus you aren't alone - there is very little public knowledge around this debilitating, chronic disease. Lupus is an autoimmune disease in which the immune system attacks healthy parts of the body, including vital organs. Sufferers endure chronic fatigue, inability to be in the sun (very difficult in Australia!), chronic pain and illness which affects the ability to work and carry on a normal productive life. There is no cure for Lupus, and there is no single effective treatment, so along with suffering symptoms of the disease, patients also suffer severe toxicity and the risk of long term organ damage from corticosteroids and immunosuppressive drugs. There is also no singular test for Lupus resulting in many people going undiagnosed, wondering why they feel chronically unwell. Some stats around Lupus in Australia include: 1 in 600 people, or approx 20,000 people in Australia have Lupus 9 out of 10 people with Lupus are women 10% of sufferers will die from this condition before the age of 40 More Australians have Lupus than Multiple Sclerosis, Cerebral Palsy, AIDS and Cystic Fibrosis COMBINED Despite  this, there is currently no State or Federal funding in Australia to support Lupus sufferers or research effective treatment or a cure. I want to change this! I want Australia to lead the way and help Lupus sufferers lead normal, full, productive lives. I want this so that my wife who has Lupus can have a life again, I want this so my best-friend who has Lupus can get through the day without pain, I want this so every person who doesn't want to get out of bed in the morning because all it brings is pain and fatigue can wake up excited at what the new day can bring. Please help me and sign this petition for our Health Minister and show how important this is!  

Melissa Mears
1,631 supporters
Update posted 2 years ago

Petition to Hon. Dan Tehan MP, Hon. Michael Keenan MP, Queensland Health

Fix the issues with accessing the Disability Support Pension

The current process for people suffering from chronic illness and disability to access social services is flawed in Australia. With waiting times exceeding 9 months for people to be assessed for the Disability Support Pension (DSP) it is forcing those living with a disability in some cases to live a lifestyle that puts them below the poverty line and is causing immense emotional hardship. My name is Jake Bailey. I am 23, I have completed a university degree straight out of high school and after that I begun my hairdressing apprenticeship. I always prided myself on being an outgoing and hard working individual. Last year, however, I was forced into an early forced retirement due to the genetic chronic illness Cystic Fibrosis. Cystic Fibrosis is primarily a lung disease, however, it also affects most of the other major organs in the body. As it stands, Cystic Fibrosis (CF) is the most common genetic life threatening illness in the country, double lung transplants are a common prognosis and those who have CF have a mean life expectancy of 39 years old. As a result of my CF I have a predicted lung capacity of 40% which requires me to perform daily physio and antibiotic therapy. The decreased capacity furthermore limits me to the amount of physical activity that I can do. Further complications from CF has resulted in my pancreas being damaged to a point where I have to consume 30+ tablets a day (pancreatic enzyme replacements) and adhere to a strict diet in order to gain any nutrients out of food. The health regime that I have to follow in order to maintain my health leaves me as a time poor person, with these treatments taking hours out of my day, and weeks out of my year when hospitalization becomes a necessity. Living with these extra responsibilities did make work a more arduous task and it did take a toll on my body with my lung capacity taking a hit of around 15% in the two years where I was working full time and my time spent hospitalized increased. With these statistics in mind under the advisement of the team of medical professionals who look after me at the Prince Charles Hospital Brisbane I was recommended to apply for the DSP in order to prolong my health. At this time, armed with 23 years of medical evidence from a range of professionals across all fields of medicine (Thoracic specialists, Mental health professionals, Dieticians etc.) I applied for the DSP with Centrelink. My claim was left sitting for over 4 months before I was contacted; albeit after I checked up on the process of my claim multiple times, by the department. In this time, my interim payment (newstart allowance) had been cancelled or suspended 4 times, due to a lack of communications between departments because I had exceeded the allotted exemption period for those applying for DSP. In my communications with the department I have been made to feel embarrassed and frustrated over the phone and in person numerous times. From being asked asinine questions such as if my “degenerative lung disease” will improve over the next 24 months and being told that I should work until the point where hospital outweighs all other aspects of my life I became very despondent with the situation at hand. Upon the presentation of my medical history to Centrelink the statistical evidence that I, and my medical team had provided which proves the degradation of my lungs has been continually ignored. Instead a rubric based upon anecdotal evidence is preferred by the assessors with questions regarding my gardening capabilities and whether I can walk home from the shops used to assess my health issues. This is incredibly embarrassing and demeaning as it questions my integrity as a disabled person. To add further salt to the wound all associated issues that come from living with a chronic illness such as the emotional ramifications are ignored and not treated to be part of the holistic wellbeing of a person to the point where I was questioned if my documented mental health issues were real and genuine. Putting already disabled people, people dealing with losing their jobs under this stress and forcing them to justify their illness beyond reasonable measures is sadistic and this has to change. As it stands, I am still in the process of being approved for the DSP and am waiting upon further contact to notify me of my claim. Yes, I have received interim payments, and for this I am thankful, however, the associated costs of living with a chronic illness such as medications, transportation and diet specific foods has left me in an incredibly vulnerable and uncomfortable financial position. When you add to that the emotional stress, and the overarching feeling of being undervalued and dehumanized by a seemingly sadistic system has left me, my family and loved ones in a depressed state. A change has to be made to make these social systems more accessible for all disabled people. I speak from my perspective of having CF, but, I am aware that there are hundreds if not thousands of people in our nation who live with their own afflictions who have been compromised and made to navigate this hard to access system. I urge the Minister for Health The Hon. Greg Hunt and the minister for human services The Hon. Michael Keenan to discus this matter and meet with disabled people; young, old, inherited or accident to gauge how the system makes us feel and live. Please work with us, so we can be proud and active members of our communities. EDIT: I have received contact from my local member for Brisbane Hon. Trevor Evans to arrange a meeting to discus my petition and to start talking about the issues at hand with the hard to access DSP. EDIT: In light of so many sharing their stories of how they have struggled to access the DSP I have made a dedicated email address, for you to bravely share your stories. I am going to collect these so when I meet with decision makers I have a strong portfolio covering a wide range of illness and impairments in order to show how these issues with access affect many people from all walks of life. EDIT: Upon receiving communication back from The Hon. Dan Tehan I have been advised to address this petition to The Hon. Michael Keenan MP also as this is an issue which falls under the Minister for Human Resources.  Thank you for reading.  Regards,  Jake Bailey

Jake Bailey
20,261 supporters
Started 2 years ago

Petition to Shri Bharat Bhushan Vyas, Mehbooba Mufti Sayeed, Shri Khurshid Ahmad Shah

Return Rightful Treatment to Srinagar Bleeding Disorder Community!

"Patients suffering from mostly inherited genetic disorder haemophilia are in jaws of death due to the non-availability of anti-haemophilia drugs in hospitals across Kashmir valley"- Rising Kashmir, 5th November 2017 "Many patients alleged that even though the government allotted funds for procurement of drugs for them, the authorities are “engaging in deliberate delays."- Greater Kashmir, 3rd November 2017 Help 283 bleeding disorder patients in Srinagar, India. There are literally young children protesting for their very lives outside the SMHS Hospital (Shri Maharaja Hari Singh) because their state sector did not purchase their life-saving treatment with the specific allocated funds handed down to them! Bleeding Disorders are characterized by extended bleeding after injury, surgery, trauma or menstruation. Sometimes the bleeding is spontaneous, without a known or identifiable cause. They include conditions such as Haemophilia, Von Willebrand Disease and other rare disorders. This community has been without their rightful & life-saving treatment for 8 months, and two of these members of the community have already unnecessarily died as a result of not treating life-threatning bleeding symptoms. What also happens as a result of inadequate access to treatment causes permanent physical debilitation from bleeding internal and into joints which is currently happening to majority of these individuals as you read this. Or worse these patients bleed to death. It is believed that this unlawful act of not providing treatment was purposeful; and that nearly 200 patients have reported they've been infected with Hepatitis from resorting to the use of plasma product infusions due to the unavailability of their treatment.  This community needs a bigger voice, leaving them to die is unacceptable! This is what needs to happen: We must stand behind this community and make it clear to the Indian Government of Jammu & Kashmir that these lives matter, that this isn't an isolated or muted situation. We hear these people and we want to see action taken. This situation and more deaths are preventable. Sign & send an E-Mail on behalf of this bleeding disorder community! What we want is for the Government of Jammu and Kashmir to address this situation as a matter of urgency: The Government of Jammu & Kashmir need to promptly make enquires into this urgent issue and where the funds have now gone if 'misplaced'. Why if the pre-arranged funds allocated from higher government with written confirmation record made to purchase the medications; have they not been purchased? The Government of Jammu and Kashmir need to arrange emergency replacement medications for dying patients.

Equality for Bleeding Disorders
328 supporters