ME/CFS Australia (SA) Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.
ME/CFS Australia (SA) Inc aims to keep members informed of various research projects, diets, medications, therapies, news items, etc. All communication, both verbal and written, is merely to disseminate information and not to make recommendations or directives.
Unless otherwise stated, the views expressed on this Web site are not necessarily the official views of the Society or its Committee and are not simply an endorsement of products or services.
Tammy Franks MCS speech
Monday 6 August 2012
MULTIPLE CHEMICAL SENSITIVITY
The Greens’ motion on Multiple Chemical Sensitivity (MCS) follows a previous Matter of Interest speech.
The Hon. T.A. FRANKS (15:53): I move:
That this council calls on the government to:
I rise today to speak about multiple chemical sensitivity (MCS). It is a little-known and little-understood condition that affects an unfortunately large number of South Australians. A South Australian population study by the Department of Health, which was eventually published in 2008, found that 1 per cent of people report being medically diagnosed with MCS, with an average of 6 per cent reporting severe health problems from common chemicals, while 16 per cent have some form of chemical hypersensitivity.
The survey concluded that that 1 per cent ‘medically diagnosed’ figure is likely to be an underestimation of the true incidence of MCS. Whatever the exact figure, it is clear that thousands of Australians currently suffer, often in silence, as a result of multiple chemical sensitivity. Unfortunately, the impacts of this condition are in fact worsened by indifference, apathy and ignorance.
In 2005, as many members would be aware, this parliament’s Social Development Committee tabled a report into MCS, yet little has changed for people living with MCS in South Australia since then. The recommendations covered issues such as recognising MCS as a disability, the need for further research, chemical use in local government, best practice for chemical use guidelines, the role of PIRSA and chemical trespass, policies and protocols for safe disability access to health centres, measures to minimise chemical exposure in the community and extending existing support services to accommodate MCS sufferers. On the whole, they lie unheeded and unimplemented.
While a study by D. James Fitzgerald on the prevalence of MCS was conducted and published in the journal Environmental Health in 2008, an information sheet has been compiled and MCS guidelines for hospitals have been produced and were approved in 2010, the vast bulk of the 2005 committee’s report recommendations have not been acted upon. In areas where significant MCS policies have been developed, such as MCS disability access guidelines by the Department of Planning, Transport and Infrastructure, they generally have not been promoted or adhered to by our government agencies. Tragically, the government continues to ignore the plight of those suffering from MCS, and MCS itself remains broadly unrecognised as a medical condition. Few other sufferers of any condition have to ask for simple recognition of their condition and the right to receive health care and treatment the same as other South Australians.
What we do know about MCS is that sufferers often suffer in silence and, of course, often in isolation. The statistics that do exist paint a very grim portrait. A national survey of MCS sufferers that was conducted by the Allergy, Sensitivity and Environmental Health Association of Queensland, in cooperation with the MCS reference group, highlighted the following statistics:
This is not good enough. MCS sufferers deserve better and now is the time to take action to implement reforms that we know can and will assist people. I have previously asked questions of SA Health in the Budget and Finance Committee on what actions are being taken by the department in relation to MCS. In fact, in October last year, I asked the department to advise what action had been undertaken to ensure and resource the rollout of the existing MCS disability access guidelines that were developed in 2006. I also asked for commitments on what level of funding was set aside in the budget for it and whether or not the new Royal Adelaide Hospital would be implementing MCS access guidelines.
The response I received, nearly four months later, in February 2012, was unfortunately an indictment on a department that has not shown the same level of care and concern for MCS sufferers that it does for many other patients with more well recognised conditions and more obvious conditions. It is a further awful example of the disdain that MCS sufferers feel from this government.
SA Health reported that MCS hospital guidelines were finally approved in 2010 and are, in fact, due for review in ‘early 2012′. There was no provision of any information about what funding, if any, had been set aside to facilitate the rollout of these guidelines. Correspondence with representatives and advocates for MCS sufferers indicate that these guidelines only apply if a patient specifically asks for them to be implemented, with little, if any, general awareness from staff about the guidelines otherwise.
As far as the Royal Adelaide Hospital goes, the response indicated that the best we can expect there is that the RAH is ‘considering incorporating signage around the hospital relating to the issue of sensitivity to fragrances’. Sadly, reports from MCS sufferers indicate agreements and policies regarding fragrance controls are not being followed by the RAH currently, with the hospital displaying a total reluctance to take action on fragrance controls.
It is clear that, since 2005 when the Social Development Committee tabled its report into MCS in this state, little actually has changed for those living with MCS in South Australia. There is still no comprehensive medical or public information. There is still no education strategy for MCS. Medical and social research remains absent. There is no national position statement on MCS.
Chemical products associated with MCS lack even the basic warnings, and chemical regulators continue to ignore MCS for the purpose of risk assessment. Sufferers get no assistance in purchasing and maintaining expensive disability aids, such as air and water filters and protective face masks, and community groups supporting those with MCS receive no state or federal assistance. Most grievously, people with MCS continue to be denied safe disability access to essential health care services. Outpatient and community-based healthcare services are entirely without MCS disability access strategies or, indeed, guidance.
It is disappointing that I need to bring this issue to members in this place today. This is not an abstract scientific debate about the causation of MCS: it is a fundamental human rights issue. The health, safety and, most importantly, disability access needs of those affected must be given consideration—and urgently—even as the science moves ever so slowly forward in a better understanding of MCS.
The motion I put today does a number of things. One is that it calls for immediate action from the government to progress an initiative which will not have any significant budgetary implications and which will not further tax an already stretched health budget. It does not require any expensive retooling, new buildings or fancy equipment, nor are there any other barriers to implementing it. I am, of course, referring to the simple matter of introducing controls on the use of perfume and aftershave in public healthcare facilities.
This is consistent with similar policies developed across the United States of America and Canada, and is in response to the fact that personal fragrances can form a major barrier to safe access to healthcare services for those suffering from MCS. Evidence suggests that organic solvents and petrochemicals contained in personal fragrances may, in fact, even be a possible cause or contributing factor to MCS.
When I spoke at an MCS rally last year, I promised that I would take action and raise this matter. I subsequently did by raising this as a matter of interest in June 2011. I promised them that I would introduce a motion on multiple chemical sensitivity into this parliament as an essential step to guarantee that at least, at a minimum, some of the barriers to MCS sufferers in accessing health care would be removed.
Now is the time for action, not simply further words. We have had words from many members in this place, and I believe many members think that this issue has, in fact, been addressed. I certainly note the words of minister [Gail] Gago previously when I have raised this issue where, of course, members would think, given the recommendations of the Social Development Committee and given the acknowledgement of this condition, that our departments in the public sector—in particular the departments that deal with health and disability access—are working to serve all South Australians. However, this is not the case.
I will not repeat the words of the motion now; as members can see, they are quite long and detailed. Obviously this has been done in conjunction with MCS groups in South Australia, groups which are to be commended for their work. Typically they are those who are least able to take action, the most vulnerable members of our community, the most isolated members of our community and, indeed, some of the most voiceless members of our community.
I hope that members will read this motion, take it back to their party rooms or caucuses, or indeed just into their own personal consciences, and redouble efforts to ensure that what we have said in the Social Development Committee’s recommendations and in this parliament in previous years, and almost decades, is in fact being put into action within the public sector. I commend this motion to the council.
Debate adjourned on motion of Hon. G.A. Kandelaars.
The above originally appeared here.
blog comments powered by Disqus