Hello to all our supporters,
Last week we reached our 1500 signatures mark, and I am so incredibly grateful to everyone who has taken the time and effort to read and sign our petition, and donate to our cause (and by default other pain patients suffering in a similar way here in Tasmania).
Please, if you have a moment do not forget to leave a comment, so that those in positions of authority in Tasmanian Health and in Government, can see that people do care about patients who are essentially being abused and tortured in the name of “legislation”.
Legislation which supports their refusals, assumptions and allows them to evade hard questions which require professional consideration and responses, whilst ignoring patients suffering due to forced tapering and unmanaged pain/disability.
It has taken longer than I planned to write this update, for that I’m sorry.
I wish I could say that my husband is doing okay and that something had improved, but it hasn’t. I am extremely worried for his deteriorating physical and mental health.
In fact, he is much worse. He has been unable to leave the house except by patient transport or ambulance for over 6 years now, as he is unable to sit in a car due to extreme spinal pain. This means he cannot access any healthcare, including dental, hearing and optical services.
My husband passed another kidney stone in December 2025. His 10th kidney stone. Again, his increasing pain prior to the stone was ignored and dismissed. We did not know it was there, because he is refused transport and pain management to get to the hospital for follow up scans from his kidney stone surgeries in 2022/2023. Does this bother anyone in the Government or health department? No. Again, as before, he was sent home from the NWRH without any pain management while he passed this stone.
I am still refused any assistance, in any health care management for my husband. To be blunt, I am extremely frustrated, shocked, angry and in disbelief that Tasmanian Health is continuing to leave my husband to “EXIST” until he CAN’T, while they know his severe de-conditioning, degenerative spinal disability and medical history. This is his 13th year of being denied medical management! How long is long enough to deny management and compassion?
I am angry that I am expected to be his only support through this abuse and torture, which is what it is. The last 3 nights he has had NO sleep from his severe pain and the anxiety that his unmanaged pain brings on, because he knows no one cares enough to help him! Over the last 2 weeks he has lost another 4kg due to being unable to eat from pain/anxiety/mental and physical exhaustion. He now weighs 66kg, from 95kg (healthy weight) when we moved here.
No pain specialist will take him on as a patient, which means no medication amendments according to Tasmanian legislation.
I have had to call the ambulance over 5 times now due to his chest pains and severe anxiety, from his unmanaged pain! (Cost to Tasmanian taxpayer).
Just think about this:
Increased spinal pain, chest pain, vomiting, nausea, weight loss, increased weakness, unable to take a full deep breath for thoracic pain (site of T11 spinal fracture which was ignored), permanent severe headaches bordering on migraines, severe de-conditioning which has been allowed to manifest into further serious and life changing spinal conditions like scoliosis, which again has never been investigated!
Tasmanian Health Service and the Tasmanian Government is FAILING in their duty of care to patients, carers and families. Not to mention, the people of Tasmania who bear the brunt of these medical costs which could have been avoided had they provided appropriate care!
I am told by our GP the Pharmaceutical Services Board paternalistic, persistent and dogmatic refusal to allow adjustment of my husband’s medication is to “protect” the patient from addiction to the opioid. This is despite my husband having no “addiction” issues with any of his medications, ever, whilst they continue to ignore his inability to have any quality of life due to his high pain levels which will NEVER improve because it is a degenerative spinal condition, from severe nerve damage caused by his surgeries and severe de-conditioning (Pain Specialist report in 2021- Significantly de-conditioned with mental and physical – since reduction in pain medication). Whilst a consultant psychiatrist notes in 2015 - “forced pain management medication regime changes increasing pain levels with reduced daily functioning” .
I am sure you can see the irony in the Pharmaceutical Services statement.
The THS and Tasmanian Health Complaints Commissioner have given me no option but to apply for Right to Information for the response to my complaint, hospital records and Pharmaceutical Services Board documentation. I received 650 pages with substantial redactions I now have to challenge. More time away from my caring role, my son and family life responsibilities.
The Tasmanian Government have created a system which does not offer any ability to defend, clarify, or confirm information they hold about the patient or have any misinformation/lies removed, and keeps the patient and carer tied up in paperwork.
Information, much of which has been lies, assumptions and innuendo, such as informing NDIS and AHPRA he did not have a permanent disability, delaying NDIS support for nearly 2 years. It is a system deliberately designed to make the patient and carer GIVE UP. Their systems do not work fairly or effectively for patients. There is NO patients centred care in Tasmania.
It is a system with NO transparency, which has demonstrated an ineffectiveness of key accountability bodies such as the Ombudsman and Tasmanian Health Complaints Commission, to have any willingness to resolve and accept any mistakes or wrongdoing or improve their care!
The Tasmanian Ombudsman, Health complaints Commissioner and the Government ALL continue to ignore the SYSTEMIC ISSUES TASMANIAN PAIN PATIENTS FACE IN ACCESSING HEALTH CARE AND MANAGEMENT - AS REFERRED BY AHPRA IN 2018.
I am tired and worn out. But I cannot stop. A pain specialist report from 2021 states “It has been an uphill battle for Soraya, his wife. High levels of carer stress”. Yes, the THS and Government is well aware of the stress and exhaustion leaving my husband’s disability and pain unmanaged, is causing our family, but they describe me as “coercive”. “Significant pain and mental health related functional disability affecting all domains. This has added significant stress on their family unit”.
As I have shown, they do not care.
My husband is both physically and mentally beyond exhausted. The THS know this and yet they still continue to ignore, disparage and question the patient.
The emotional pain, watching your partner of 35 years suffering for no reason, is heartbreaking. It is absolutely UNCONSCIONABLE.
Watching your husband waste away both physically and mentally is so incredibly distressing.
Our son was born with Down Syndrome. Watching him, I see the confusion and fear, as he tries to process the pain he sees his father in. It is both traumatic for him, and us as parents. He tries to comfort his dad and asks him “Pain? Sore?”, while his dad tries to hide it from him, but it is impossible.
He only knows his dad as being in severe pain! No walks on the beach, no fishing outings, no movies, no chance to deepen their relationship and bond, no opportunity to make special memories - other than pain related.
In our experience the Government absolutely does not care about the suicide statistics in the state despite what their Prevention Strategy may state.
Of the 693 deaths by suicide in the Tasmanian Suicide Register between 2012 and 2020:
Two thirds (66 per cent) had at least one reported physical illness and nearly half (46 per cent or 318 people) experienced acute, chronic, or cancer-related pain prior to death.
The National Pain Report 2025 from Chronic pain Australia states:
People living with chronic pain continue to suffer from stigma: Stigma is rampant, with 74% feeling ignored or dismissed, and nearly half (48%) experiencing prejudice from health professionals.
Dr Thomas Kline, MD, PhD from the US states – ‘Not providing suicide prevention is negligence. Not treating a person in pain is negligence. Abandoning people with painful disease to the streets with no doctor, is negligence. Believing you can addict the general population is ignorance. Believing serious pain can relieved with Tylenol, meditation, expensive injection therapy, anticonvulsants, and physical therapy — is ignorant’.
We have to step this petition up, now! If you can, please find a few moments, write one email and ‘cc’ all ministers in (contact details below), and tell them what you think about the abuse they are ignoring, otherwise nothing is going to change in time for my husband.
We can’t lose him. I won’t let him become another Tasmanian suicide statistic.
Minister Urquhart has known about this since she visited ECIS in Burnie in 2014 where our son was attending at the time. After many referrals to her office by other members of Parliament over the interim years, including Ministers Bill Shorten and Tanya Plibersek, Minister Urquhart only wanted me to supply her office with ‘other politicians’ responses to my concerns’. As if I had the time!
anne.urquhart.mp@aph.gov.au
From minister Urquhart’s webpage-
Anne Urquhart has spent her life standing up for fair treatment for all Tasmanian's and building a better Braddon. Anne is dedicated to listening to her community and making sure their voices are heard in Canberra.
Minister White who has known about this since 2015 and despite being propelled to a federal position, continues to ignore pain patients suffering and Tasmania’s broken Health system.
Rebecca.White.MP@aph.gov.au
From minister White’s webpage-
I’m passionate about ensuring there is equality of opportunity for all Tasmanian's regardless of where they live, their background or circumstances.
I am passionate about ensuring regional communities are well represented and supported, and I’m committed to growing Tasmania’s reputation as a great place to work, to visit, and to live.
My job is to support you, whether you need help, want to raise a concern or just want to share what’s going on in your community or family.
Minister Repacholi who has ignored at least 6 contacts by email to his office despite being ‘Special Envoy for Men’s Health’.
Dan.Repacholi.MP@aph.gov.au
From minister Repacholi’s website-
As the Special Envoy for Men's Health, Dan is committed to shining a national spotlight on the unique health challenges facing Australian men and boys, from mental health and suicide prevention to chronic illness and access to healthcare services.
Dan is passionate about working closely with experts, advocates, and the community to ensure a health system that works for everyone.
From the Department of Health, Dan Repacholi press release 24 February 2026 -
Special Envoy for Men’s Health, Mr Dan Repacholi MP will join Assistant Minister for Health and Aged Care, and Federal Member for Lyons, the Hon Rebecca White MP in Tasmania today as part of ongoing national work to improve the health and well-being of Australian men and boys.
As Special Envoy for Men’s Health, Mr Repacholi’s role focuses on championing awareness, prevention and early intervention across men’s physical and mental health and strengthening engagement between government, communities and health services nationwide.
Men live on average more than four years less than women and account for around three quarters of all suicides in Australia, with suicide remaining the leading cause of death for men under 65.
Trips like this are about getting out of Canberra and into communities to hear directly from local men, families and service providers about the challenges they are facing.
“Men’s health challenges look different in every part of the country, particularly in regional areas, which is why it’s so important we engage directly with communities here in Tasmania.
Health minister Mark Butler, continues to pass my concerns on to other medical branches who advise me to speak to local politicians to resolve the issue, and inform me legislation allows opioid use for patients where it is deemed necessary or have ‘exceptional circumstances’.
So why is my husband being denied?
minister.butler@health.gov.au
All letters to Minister Butler have been referred onto the Mental Health Reform Branch or National Health Reform Branch and their responses state what I already know in regard to regulation, and state we may wish to “continue discussing with his treating doctor any other suitable alternative pain management treatments or services”. As I say, TONE DEAF and completely insincere to the seriousness of the situation after 12 years!
Excerpts from letters to myself from Mental Health Reform Branch or National Health Reform Branch:
Nov 2022 “The Australian Government is working hard to reduce the significant burden that chronic conditions, including chronic pain, have on Australians and is committed to supporting those impacted.
The TGA has intended to narrow the circumstances in which opioids are prescribed for chronic non-cancer pain, not to eliminate their prescription completely. While opioids have limited efficacy in chronic non cancer pain, there will be some patients with chronic pain for whom appropriately prescribed and monitored opioids effectively manage their pain and improve their quality of life.
Opioid medicines have special controls applied to their possession and supply, so additional regulations, separate to the PBS arrangements, are applied to how they are prescribed, dispensed, and used due to their potential for harm and abuse. These regulations are the responsibility of the states and territories and can vary significantly between them. If relevant, you and your husband may wish to discuss with his treating doctor how the regulations in Tasmania may impact his prescription for opioid medicines.[A1]
Dec 2022 “All Australians deserve access to universal, prompt and world-class medical care, including access to medicines. In relation to opioids prescribed… the Australian Government needs to strike the right balance between safety and ensuring patients can access pain treatment they need to achieve quality of life”.
The Government recognises that opioids play an important role in providing pain relief for patients, and the regulatory changes in 2020 ensured appropriate and safe access was maintained. As such, patients continue to be able to access opioids under the amended listings for treatment of severe pain and chronic severe pain. Should a treating doctor deem it appropriate… The decision to commence or continue to prescribe a medicine remains one ultimately determined by clinical judgement of the prescriber, based on circumstances of the patient.”
The Tasmanian Government States Community Protective Factors to suicide prevention include:
- feeling connected to school, community, and other social institutions
- availability of consistent and high quality physical and behavioural healthcare.
I am sure as you read their Bio’s from their own websites and my words, you can appreciate the disingenuous and patronising attitude of these people who have been elected to their privileged positions to represent the people of Australia, wherever they are located.
Positions which require a level of integrity I am yet to see, and not just happy to pose for a photo or cuddle my 4-year-old son in ECIS, while ignoring SYSTEMIC medical issues which are leading to extreme stress, suffering and suicide in many cases.
Integrity requires consistency in actions and words, honesty and truthfulness in owning up to mistakes, moral courage to do the right thing despite pressure, temptation or personal cost, reliability in keeping promises and following through on commitments, and accountability- taking responsibility for actions, decisions and their impact on others.
Does it sound like they are living up to these values?
Please help me make them accountable for the harm they continue to inflict on my husband and family.
We need more signatures, more exposure, more momentum. Please share this petition with all your friends, co-workers, family and on all your socials.
With thanks and much gratitude
Soraya
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