Minister for Health’s lukewarm response to MCS Inquiry

December 15, 2005

The State Minister for Health has now responded, as he is officially required to do, to the recommendations on improving the management of issues relating to Multiple Chemical Sensitivity. This response refuses to give priority to some of the modest proposals made by the parliamentary committee.

Read the response for yourself (below). And, if you're concerned, prepare to support the efforts of the ME/CFS Society and other groups to lever some effort out of a health and disabilities bureaucracy which at the moment is telling us: “You’re not a priority.”

Response to the
Social Development Committee Inquiry
Into
Multiple Chemical Sensitivity (MCS)
November 2005

General Comments

The Committee is to be congratulated on tackling this difficult but important issue, and for completion of its report. The Committee has witnessed the fact that there are wide-ranging views on the central question of causation of MCS, and this is principally because there is currently no scientific or medical consensus on the cause or diagnosis of this condition. Indeed, many who work in this field believe that the term “MCS” is a misnomer, as it is not proven that chemicals are the sole causal factor. This point of lack of consensus on causation and diagnosis must be reinforced, since progress to achieve such consensus is certainly required if there is to be significant advancement in the various clinical, toxicological and social impact areas that were addressed by the Committee.

In spite of the strong submissions made to the SDC on the uncertainty associated with diagnosis and treatment, the Committee appears to have moved to a view that chemicals are the cause of MCS and has based its recommendations on the premise of chemical causation. DH advises that it is not proven that chemicals are the sole causation of MCS. Consequently, the Department believes that it is extremely difficult for SDC or others to identify priority areas of action while the central question of causation remains unresolved.  Notwithstanding, it is evident that MCS leads to morbidity in some people and may represent a significant cost to society.

Following is the response of DH to specific recommendations of the SDC. DH notes that some of these recommendations were also referred to other Departments and that recommendations 4 and 6 were referred only to PIRSA. Since SDC has recommended that DH convene an across-Government Working Party for dealing with several MCS issues, the Department has assumed a lead-agency role and has incorporated the responses of the other departments into this document.

Specific Recommendations

1.

That the Department of Health (DH) monitors the prevalence of MCS in SA and compiles comparative data on the incidence of MCS to enable trend analysis.

Supported in principle

Through two telephone surveys, the Department has already gathered data from over 4,000 individuals and determined that MCS has a prevalence of about 1 per cent in SA. Whether further surveys can be done will depend on priorities for resources within the Department for surveillance activities.

Surveys have been conducted elsewhere and have shown various incidence rates. It is difficult though to compare surveys, since the wording of questions has not been standardised and the state of MCS knowledge in the public and medical practitioner arenas is likely to be different in different countries. Therefore, any further surveys conducted in SA will need to be carefully designed and interpreted.

3.

That DH:

2.1 coordinate and consult with relevant professional bodies, organisations and community groups in the production of an Information Sheet outlining the current position of MCS, including working definitions and symptoms commonly associated with the condition;

2.2 coordinate the dissemination of information on MCS to a wide range of organisations and groups including medical practitioners, local Councils, and the gen era! public, through appropriate information distribution channels.

Supported in principle

The Department has already engaged with several of these stakeholders in discussions over recent years on various aspects of MCS. Importantly, consistent recognition of causes and symptoms is required. Once this is achieved, DH will consult and promulgate as appropriate.

3.

That DH convene an MCS Reference Group including representatives of relevant Government departments and agencies including PIRSA and the EPA, professional bodies and organisations, community groups, and Councils nominated by the Local Government Association, to maintain ongoing communication and provide up-to-date information on developments in the MCS debate.

Supported

The Department will convene an MCS Reference Group. PIRSA and the EPA have indicated to DH their willingness to participate in this group.

4.

That the PIRSA Chemical Trespass Coordinator continue to provide assistance to people with MCS in addressing instances of chemical trespass as they arise.

Supported

PIRSA will continue to provide assistance to all citizens reporting specific incidents of chemical trespass, including people with MCS, through investigation of the reported trespass incidents and provision of information and advice.

5.

That the MCS Reference Group convened by DH work to develop best practice guidelines to enable local Councils to establish No-Spray Registers that identify MCS sufferers, and those with chemical sensitivities generally in local communities. This would include identifying current best practice models of No-Spray Registers among Councils to inform the reference group's best practice guidelines.

Supported in principle

The Department is aware that some Councils have already commenced no-spray registers, and so would draw on the experience of those Councils in expanding such a program.

6.

That PIRSA:

6.1 encourage all relevant bodies across SA to adopt and implement best
practice guidelines for administering chemicals;

6.2 advise local Councils through the LGA, on best practice in the use of
chemicals and in working with local communities to implement best
practice measures, particularly in relation to No-Spray Registers;

6.3 ensures that all Councils clearly understand their legal obligations with
regard to chemical use, as outlined under Control of Use legislation.

Supported

PIRSA already works with organisations and individuals to implement best practice in chemical application including legal obligations under the Agricultural and Veterinary Products (Control of Use) Act 2002. This work will continue as an integral component of ongoing efforts to improve the management of chemical applications risks generally.

Local government is a significant user of pesticides either directly or through contractors for pest and weed control. PIRSA staff regularly contact Council planners, Environmental Health Officers and Animal & Plant Control Board Officers on a range of pesticide use issues.

Best practice in relation to no-spray registers is proposed for consideration by the MCS Reference Group (Recommendation 5). The results of the deliberations of the Reference Group can flow through to Councils by various means, directly to individual Councils or to Councils as a group via the Local Government Association.

7.

That the DH collaborates with the Department for Families and Communities (DFC) and other appropriate agencies and organisations, with the view to exploring practical measures that could assist in addressing disability access issues experienced by MCS sufferers, in relation to public facilities and services in the community.

Supported in principle

This recommendation poses some difficulty, as the lack of consensus on chemical causation means that improving access to public facilities for MCS sufferers may not be as simple as reducing chemical exposures voluntarily or legislatively. Nonetheless, institutions would need to be made aware that some MCS sufferers do have specific needs.

DFC, through the Client Services Office (CSO), is keen to address the disability access issues faced by people with disabilities in relation to public facilities and services in the community. However, MCS does not fall within the scope of disability for this purpose since DFC currently regards MCS as a chronic medical condition, as opposed to a disability.

People affected by MCS would not appear to benefit from the wide range of disability services which are currently offered by DFC. These being respite services, independent living training, accommodation services, therapy services-, home care and family support services, etc. Indeed, in addressing disability access issues as stated in this Recommendation, the expertise of DFC is, in the main, addressing issues arising from people's physical, cognitive, neurological and sensory impairments and relate mainly to making modifications to physical environment through the fitting of rails, ramps, hearing loops, easy-read signs, etc. These are not the same access issues which are faced by MCS sufferers.

8.

That the Minister for Health place MCS on the Australian Health Minister's Advisory Council agenda to ensure that a co-ordinated national approach is taken to addressing emerging issues, including the need for:

8.1 A national review and evaluation of the medical literature in relation to the status of MCS, with a view to :

8.1.1 guiding further research into the cause, management, impact on fertility, and prevalence of the condition; and

8.1.2 contributing to the formulation of an ongoing national research agenda.

8.2 A Federal Government commitment to funding a national research agenda on MCS;

8.3 A national position statement on MCS.

Supported in principle

Many issues around MCS will require national leadership and commitment to funding in the areas of aetiological research, development of diagnostic and clinical management guidelines, and understanding of national prevalence and trends.

The Office of Chemical Safety within the Commonwealth Department of Health & Ageing is in the process of conducting a major review on MCS. The findings of this review will be important for informing an agenda item for AHMAC. DH will respond to the findings of this review as appropriate.

9.

That the DH:

9.1 urgently resumes its review of existing MCS hospital protocols with the view to introducing guidelines to provide greater access to chemically sensitive patients requiring medical services. To assist with this task, the DH is encouraged to continue to investigate and monitor intrastate and interstate protocols and procedures such as the Royal Brisbane Hospital draft MCS protocols, and other relevant overseas protocols on MCS;

Supported

This will require cross-portfolio coordination. DH will convene a Working Group to develop consistent protocol and procedures for dealing with MCS sufferers in hospitals.

9.

9.2 convene a working group of representatives from relevant Government departments and agencies, health service providers, and community organisations, to consider developing appropriate protocols and procedures that enable greater access to health care services for people with MCS.

Not supported at this time

DH is already supporting moves to establish Working Groups and review teams under Recommendations 3 and 9.1.

10.

That the relevant State Government Ministers:

10.1 lobby the Federal Government to conduct ongoing research with a national focus on effective alternative measures for weed control, including identifying herbicides with lower toxicity than those currently in common use;

10.2 ensure that local Councils are informed of the findings of Federal Government research on alternative measures for weed control.

10.3 lobby the Federal Government to consider undertaking a review of the adequacy of the current chemical regulatory structure and assessment processes in addressing issues raised by people with MCS with regard to chemical use, including the adequacy of health and safety labelling information on chemicals associated with MCS.

Supported in principle

As an initial action in support of this recommendation, DH will refer the SDC report to the Office of Chemical Safety and the Australian Pesticides & Veterinary Medicines Authority for their consideration. It should be noted that chemicals other than herbicides are causally related to MCS by MCS sufferers.

PIRSA will refer the SDC report to the Co-operative Research Centre for Weed Management for their consideration.

The Environment Protection and Heritage Ministerial Council has initiated the development of a national chemicals framework to provide guidance on better and more consistent management of chemicals in Australia . This includes pesticides, industrial chemicals, chemicals in food and therapeutic substances.

11.

11.1 that the State Government's Minister for Disability lobby the Federal Government to consider providing some Federal assistance for essential aides and items to assist people with severe disabilities arising from MCS symptoms in managing their condition.

Not supported at this time

While it is recognized that some MCS sufferers require equipment such as air/water purifiers, oxygen and respiratory masks, these aides are outside the scope of assistance provided by the Department of Families and Communities (DFC) through the Independent Living and Equipment Program. Discussion under Recommendation 7 outlines the current rationale for DFC support of people with disabilities. This Recommendation 11.1 largely falls outside the domain of the Minister for Disability.

This Recommendation would best be revisited subsequent to the outcomes of the review mentioned in Recommendation 8. As with most of the proposals from the Social Development Committee regarding MCS, progress relies heavily on whether MCS can be defined as a bona fide medical condition with consensus aetiology, diagnosis and treatment.

11.

11.2 that the DH consult with existing service providers such as the Southern Chronic Illness Links Network, with regard to extending its existing support services for people with chronic illnesses to support people with MCS across South Australia.

Not supported

As MCS is not recognised as a defined medical condition in Australia , DH is unable to extend its stretched resources to assist MCS patients at the loss of assistance to sufferers of recognised diseases.