I have requested to talk with Dr Wooldridge the Minister for Health and Family Services and his office refused the request as he is too busy. A similar request to his Melbourne office had the same effect.
Wharfies and Politicians.
This may reduce my chances for settlement in respect to the Trust Fund but yes it is agreed that there should be waterside reform, but there should also be political reform. Wharfies earn around $70,000 per year yet there are more politicians than wharfies who earn with benefits in excess of $180,000 per year and after seven years or so they are looked after for life by the Taxpayer. Is it not time that there were performance contracts for Politicians where their salary and benefits are related to the results they achieve.
Never before has our political system been in so much disarray.
An open letter sent to selected voters in Chisolm:
18th February. '98
2 Marlborough Street,
COLLEGE PARK 5069
Dear Ms ,
I beg your pardon in imposing on you by obtaining your name and address from the Electoral Roll of Chisolm, the Electorate of Dr Michael Wooldridge, Minister of Health and Family Services. I trust that you will give me 5 minutes of your valuable time.
We have been married for 35 years and have five children.
In 1970 my wife was treated with a contaminated batch of pituitary hormones as a result of negligence by the then Government owned Commonwealth Serum Laboratories (CSL). Whereas the Government has refused to admit negligence it has compensated the families of the five deceased victims after their death. The disease, Creukesfeldt-Jakob Disease (CJD) has a latency period of up to 30 years.
My wife is the first living Australian to be diagnosed with what is considered to be most likely CJD. This was in July last year when she developed severe neurological problems. In April, '93 the Government had established a Trust Fund that was supposed to provide in a compassionate non legal manner assistance should anyone contract CJD. It has been set up such that care can only be provided through the Trust Fund and it does not allow for the health care costs to be settled by legal means. Refer to the attached statement from your elected representative, Dr Michael Wooldridge.
My wife was given a time period of 4 months to two years before death and it is now seven months have elapsed. It would appear that from the manner that this access to the Trust Fund has been handled by the Government that they have sought to reduce their liability by using delay tactics in the hope that she would be dead earlier rather than later. This is only our opinion. The victim is the loser in this situation as life can not be retrieved - what can be done today can not be done tomorrow. My role in this affair is to facilitate what my wife is entitled to.
Whereas there is no direct comparison to how other Trust Funds are handled in Australia, I refer you to the attached part of a letter from an injured party who, too, has been associated with a Government Trust Fund that is supposedly compassionate and requires no legal representation - all you have to do is trust the Government. The nature of this particular Trust Fund is worthy of your further consideration in respect to what is going on with vaccinations in Australia. Given that we are all vaccinated on occasions, have you made sure that you are well informed of fact that there is the possibility of an adverse side effects?
Because your elected minister, Dr Wooldridge, is responsible for this debacle, I have sought to discuss the concerns with him. The reply that I have received from his office is that he is too busy to see me and indeed he has not personally answered my correspondence. I am making little progress whilst the Government continues to put up barriers.
I am writing to you not for sympathy, but for your support in reminding your elected representative, Dr Michael Wooldridge that he is this position as Minister because it is people like us that have put him there. He is the Minister of Health and as such is accountable to the Public. He has a duty of care to discuss the problems that we are experiencing with us as he is the Minister responsible - not his advisors - the buck stops at him. The implications are such that it may impact on your own life or one of your family's life at some time in the future.
Confirmation as to whether he values your vote for the coming elections would be in his reply to you - something which I have yet to receive.
Again, if you have read this far, I thankyou for your time and you may be assured that I would be very grateful for any support that you may offer.
The response from Dr Wooldridge:
This document is to be scanned, and will be available for download.
24th August, '97
2 Marlborough Street,
CJD Support Group.
My area of expertise is in animal health with particular emphasis on Biochemistry.(Some experience in Virology). I am aware that current thoughts are that CJD is not a virus. It concerns me that I read articles that use statistics to obtain a desired result in that to quote, "only a few will go on to develop symptoms of CJD". If a few thousand people were contaminated with the AIDS virus, I would be surprised if only a few went on to contract symptoms of AIDS.
A statistical result can be produced for any event. It's a bit like riding on an Indonesian country bus that is on a one lane road with another bus approaching head on at reckless speed. Statistically of all the bus crashes only a few are killed so it is true that a passenger could sit there feeling more comfortable, but the reality is that it is Russian Roulette - it may be the crash were no one survives.
The fact of the matter is that little is understood about CJD. Margaret was treated allegedly with Batch No 3 and I have received some comment as to how it could be batch No 3 if the Program started much earlier. Batch three would have to a very large batch. It would appear that if it was an early batch then it is quite possible (given the fact that no one likes to have anything to do with contaminated blood or tissue as the indications are that it is easily transmittable), that it is a contaminant that has been present throughout the entire process. This is not uncommon in reviewing trace element analysis over the years - higher levels have been previously reported due to contamination and the values are continually being revised due to improved methods.
If it was a contaminant introduced in the early stages of production then clearly it is not possible to make a frivolous statement that only a few will go on to contract the disease. It is simply not known. Of course we all hope that this will be the case but I see no evidence to support the statistics presented. As CJD only occurs in 1 in 1,000,000 cases, the concept of a single source of contamination maybe worth consideration.
Likewise, there is no evidence that the disease does not pass from the recipient to the offspring as the result of the treatment. Again, we all hope that this is not the case but it is simply not known. It is a slow disease and no-one knows the mechanism in which it infects the brain. Is it age and stress related for instance?
As with AIDS, people can have the disease yet not go onto contract symptoms. However no-one knows what triggers the disease to react adversely. When Margaret was advised in 1993 she was in peak health both mentally and physically.
I appreciate the fact that every recipient has stress in regard to the fact that they may be the next victim. It does have an impact on their lives.
Unfortunately in terms of caring for our fellow humans, we learn nothing from these exercises. The South Australian Government as with many other States has done a risk analysis in maintaining their own animal health laboratories at a cost that does not buy votes. The great majority of the general public is not aware of the importance of the Governments maintaining an exotic disease surveillance and containment process that can only be provided by Government. There are many animal diseases that are harmful to human life and can only be detected by disease surveillance within the laboratory. It is not a function that private laboratories can provide.
In its risk assessment the Government has decided that it is more cost effective to discontinue these public services in favor of the cost benefit to only respond in the event of a major diseased outbreak. Indeed it has been suggested that it is better to let the disease burn itself out. Without experienced workers and equipment, sadly, this might well be the case.
Hence what we all have to look forward to in the future is ever evolving new diseases that may well have been controlled with some vigilance but are now quite likely to ruin many peoples' lives exactly in the same manner as CJD.
It is all about the risk assessment that individual and Governments make. Sadly in the case of animal health, it is driven by dollars and not lives.
I have aired my views to many as others have also done, but at the end of the day, policy makers make their own decisions that are contrary to moral obligations.
If there is anything that I can do to be of help to recipients in providing further detail to the symptoms already recorded,- e.g. Margaret's symptoms have appeared with a 95% loss of speech and understanding in about 3 months,- you may be assured of my co-operation.
30th December, '97
One of the reasons why things are not too bad at the moment is because we are managing the care of Margaret. E.g. - she is not wandering now because we simply don't allow a situation where this could happen. (Ann Morgan failed to clearly mention that some of the problems were not arising because of our family management of Margaret.)
As you know, I have empowered you to look after Margaret's affairs and I have confidence in you to be able to seek a resolution to the problems that is acceptable to all parties. Obviously it looks like Margaret is in for a more protracted demise rather than the worst case of 4 months. (Dr Waddy did indicate that it could be 4 months to two years). As such the care issue is one that needs to be carefully considered and we are confident that you will apply common sense to negotiate a suitable outcome that is best for all concerned.
Ann Morgan outlines a recommendation for what is required for the continuing care of Margaret.
Now that the level of future care has been established, I would like to proceed with the appointment of a private care provider. Depending on what you think I can seek quotations from various care providers and we can both make a decision on what appears to be best. The private provider is to provide the services required as outlined by Ann Morgan. Quite obviously, given the long hours and the care required at present it is desirable that Jason be the attendant carer. He is happy to do this. I am sure that any provider could facilitate the employment of Jason for this purpose. Payment for his time would be on a casual hourly rate inclusive of holidays and sick pay, back dated to 1st November and as such would include the provision in the future for a replacement at short notice in the event of him being sick or taking unpaid holidays. The employment contract would also include an appraisal and some guidance by the service provider for Jason in the performance of his duties.
The arrangement that I would suggest is that the service provider bills the Commonwealth on a fortnightly basis at the end of the fortnightly period for services performed. I assume that this is a requirement of the trust fund (ie no advance payments)
As you know, I would like to see a family member provide the initial care, but I do not want to do it at the expense of quality care to Margaret. I consider employment through a third party is a better option for obvious reasons.
Given that we have a lot of small valuable antiques and it is unlikely that we are now in a position to know if any are missing, the quality of the external employment is important. I would need to take your advice on this issue, but I would have to say I prefer a laid back approach rather than distrust and the securing of any valuables. Therefore I would assume that the salary rate would need to be in the range that is going to attract the desired person/s. My comment would be how many are around that would be willing to work 8am to 6pm five days a week? There would need to be incentive for such an arrangement.
If you agree with the proposal by Ann Morgan, can you seek immediate approval from Geoff MacDonald to go ahead with the appointment of a private Adelaide service provider to provide these services.
I trust that you can get Geoff to agree to this and I look forward to your early confirmation of agreement to appoint a service provider. The service provider could be a State of Commonwealth Dept but I would assume that outsourcing is their preferred option.
Hope to hear from you soon.