I used this attached statement (written 2008) as my submission to the recent (2012) Coronial Inquiry into "Swine Flu Deaths" in the South East, and I received an acknowledgement but was not called to give evidence.
Submission 2008:
"This is a brief chronology of my experience with the country health system re Cancer. It is effectively a letter of complaint that highlights faults and failings, that is what I have been asked to prepare, but I never lose sight of the fact that I received $10,000’s of free treatment for the 16cm x 12cm tumour I should never have survived, and the vast majority of staff/specialists/nurses etc that I have met are hard working, dedicated professionals.
I also recognise that having family in Adelaide spared me from many of the issues that country patients endure eg, accommodation, meals, laundry, transport between appointments, isolation/lack of support, etc. Nor was I trying to juggle a career/work, provide primary child care, run a farm, etc.
June 2004: attend Mt Gambier Hosp- symptoms same- diagnosed ‘asthma’- No X-ray
I was so ill I took this to mean that the ‘mass’ was considered benign and of no immediate threat. I was pleased and happily went home. With hindsight there is no doubt that when Dr Irannezhad went to organise my transfer to Adelaide
03/08/04– 09/08/04: appt Dr Jack Russell- daily scans- chest biopsy, PET scan, CAT scan, gated blood pool scan, sperm storage, bone marrow biopsy. Diagnosed with non-Hodgkins lymphoma.
17/08/04: ultrasound- so much fluid in pericardial sac could not see heart- left lung 1/3 full of fluid- nearly discharged but booked for ‘heart drain’- ward C6
18/08/04: drain inserted, 1/2 litre fluid removed- left in overnight- total 1 litre- ward A6- removed next day- discharged 20/08/04
Chemotherapy on 5 more occasions. Radiotherapy ask for 2 more cycles due to size of tumour- 7 week gap- 2 more cycles making total of 8 cycles
Whilst I suffered various side effects, eg, hair loss, brittle nails and teeth, etc. I never vomited or suffered mouth ulcers as so many people do, immediately stabilised my weight loss, and actually started gaining weight. This was attributed to my youngish age and reasonable physical condition, the readily treatable form of cancer that I had, and in part to being a marijuana smoker.
I repeatedly identified as a non-drinking, non-smoking, long term marijuana smoker. Never once was smoking grass identified as a contributing factor to my lymphoma, nor was it even suggested that I should stop (although I had due to my illness). At one point I was actually advised to start smoking again because of the widely if not officially recognised benefits of marijuana when dealing with the side effects of chemo, eg, suppresses nausea, increases appetite, soothes aches and pains, etc.
I have spoken to numerous medical specialists and genuinely believe that medicinal marijuana should be available to chemo/radiotherapy patients if they choose to use it.
I have had numerous follow up scans and appointments and the issues remain the same, eg, travel to Adelaide
From my first appointment 03/08/04 I was repeatedly involved in the same conversation. The first thing I was asked- “what are your stress issues”; when I related my diagnosis/discharge on 29/07/04 - “were they trying to kill you”. Everyone was extremely critical about the actions of Mt Gambier Hospital.
I cannot begin to imagine the nightmare that it must be for Aboriginal people, any people, in remote communities when faced with cancer or any other major illness, eg, diabetes. I am simply not qualified to comment. I did not go to the inquest into the ‘asthma’ death of a young woman at Mt Gambier Hospital out of respect for her family, but have since regretted not putting forward my experiences.
I was recently informed (days after it was revealed in the media) that I am one of hundreds of people who did not receive appropriate radiotherapy treatment. I rang the hotline and was told by a laughing woman that everything was fine. When I asked that I might get some appropriate scans she said that was “a good idea”, laughed, and hung up on me. I had to organise my own scan, blood tests, and RAH appointment.
I have not heard a single thing since. No information, no “counselling” as promised. At the same time the number of patients affected has risen- ‘we found some more’-, and “a few concerns” has become several people died prematurely because of the under-dosing.
I was absolutely stunned to hear Health minister John Hill on radio dismissing these premature deaths as being inevitable deaths brought forward “only a few weeks”. The failure to immediately notify patients, particularly as there was allegedly no problem, is totally un-professional and highly suspicious. The actions of senior RAH officials and the state government indicate a clear desire for this to remain un-discovered, and now that it has been exposed, for it to remain unresolved.
It is my understanding that there can not be effective change to the health experiences and outcomes for Mt Gambier patients until the federal government takes control of hospitals. Only then will Mt Gambier hospital become a regional health focus able to offer high level care and treatment which in turn attracts the specialists we need. I do not know how this would affect Pt Augusta, Pt Lincoln, etc.
Until then the above issues- lack of specialists, limited treatments available, transport, accommodation, and particularly the stress of accessing services heaped on the stress of being diagnosed, will continue to compromise the health of country people simply because they live away from Adelaide
I have not yet read the ‘New Country Health Plan’ but I’m not holding my breath."
Make of this what you will; I'm still here to complain about it, after all.
Tomorrow: Bus Shelter Fiasco - Mount Gambier City Council and 'Consultation'
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