- Contact ASEHA
- ASEHA Leaflet Series
- Air Quality and Health Effects
- Allergy and Allergy Like Health Conditions
- Multiple Chemical Sensitivity
- Disability and Medical Issues For MCS and Allergy
- Children's Health Issues
- Web Links
- Search ASEHA
- ASEHA Press Releases
- ASEHA Submissions
A survey of individuals with MCS in Australia, 2011 - Part B Social Aspects
|MCS - ASEHA MCS Publications|
|A survey of individuals with MCS in Australia, 2011|
|Part A Medical Information|
|Part B Social Aspects|
|Part C Services Needes|
|Conclusion and Resources|
PART B SOCIAL ASPECTS
The next part of the survey was designed to investigate the impact and burden of MCS on sufferers lives as shown in figure 6. The following figure represents the areas that impact an individual, which can have a flow on effect increasing the burden and influencing the disability and isolation. Individuals with MCS can have limited functioning and health related quality of life.
Depending on the degree of disability it can be difficult to work and care for homes and families. The combined negative impact from issues with Work & Finance; Medical & Social Services care, low social/community support and lack of safe affordable Housing can have a compounding negative effect on sufferers.
The factors that impact a person with MCS quality of life are: Barriers to medical and allied health services, Lack of medical assistance, low community/social support, lack of safe affordable housing, inability to work and financial hardship and the living adjustments required to live with MCS. These create and perpetuate the personal distress that affects the degree of isolation and disability.
Figure 6 Impact and Burden of MCS
In this survey we evaluated some of these aspects:- The level of support from family, friends and medical practitioners; the ability to access medical and allied health services; ability to work or receive pensions and finally the level of disability and isolation.
Level of support
We found a number of individuals lacked support from family and friends. This can often be due to scepticism by family members or friends and can affect the individual’s ability to socialise becoming another burden that adds to the personal distress. Figure 7.
Figure 7 Support from Family and Friends
The lack of support or understanding from a medical practitioner delays effective treatment and management and does not dispel the disbelief by others. Finding a helpful/sympathetic GP or other medical specialist is important for:
- Accurate diagnosis
- Management and treatment of the condition
- Access to other allied health and social services
- Validation of the condition to allow the patient to be able to make the necessary changes and enlist the help of families, friends, and co-workers etc.
- Avoid the ‘medical merry-go-round’ of consulting a wide variety of GPs and specialists and undergoing a range of diagnostics tests and treatments in order to obtain a relevant diagnosis
In this survey, 42.6% reported that their GP is helpful, 29.8% as sympathetic with 27.7% neither helpful nor sympathetic. For some the lack of medical support has meant that they have not been unable to access social or disability support. They are unable to qualify for services or having their cases rejected due to lack of medical support.
Pam Gibson a researcher in the USA in a study in 2000 investigated the services requested and received by consumers with MCS found that MCS individuals saw on average nine medical practitioners each. Only twenty-seven percent of these were reported to be helpful. As Environmental Sensitivities are not routinely diagnosed in General Practice, it can be difficult for people to find medical practitioners with an understanding of MCS.
Ability to access medical and allied health services
The primary stop for people with medical problems is the GP. It is difficult enough to find practitioners who are able to help, without the added problem of becoming disabled when attempting to attend medical and Allied health facilities. Individuals with MCS can be disabled by chemical barriers when entering buildings and offices. The barriers include the wearing of perfume by staff and use of fragranced products, air fresheners, pesticides, cleaning products, paint, or the choice of building materials. All of these can significantly contribute to indoor air pollution to the degree that a chemically sensitive patient can become profoundly disabled after entering the building.
We asked respondents if they had difficulty accessing Health services, Allied Health Services, Disability & social services and Aged Care facilities, figure 8.
Figure 8 Access to Health Services
Regardless of the facility, in this survey were found that >55% of respondents reported not being able to access these services as can be seen in the next figure. Those who could state that they couldn’t access the services safely or could only stay for short periods of time. The main barriers given for the inability to access these services were Poor Indoor air quality (22); ubiquitous nature of perfumes (17); use of indoor chemical pest control (3); unable to meet strict criteria to access auxiliary services and/or financial hardship (3). Indoor Air Quality issues include contaminants such as perfume and pesticides. Fragrance is the most troubling chemical and least necessary barrier to health services.
Poor indoor air quality is a major detriment to MCS/ES disability access to most public buildings including hospitals and other health care facilities. Many are unable to access the necessary services and care.
Hospital Protocols. We asked respondents if they knew of Australian MCS Hospital Protocols and if they had attempted to use these protocols when in a hospital.(Figure 9). Fifty-three percent of people had heard of MCS Hospital Protocols. Thirty-eight % (10 people) who knew of MCS Hospital Protocols had attempted to have them implemented. Despite these protocols being available 66.7% (6 people) found them to be unsatisfactory.
Figure 9 MCS Hospital Protocols
Work and finances We asked respondents whether they are able to work or if they have received a pension.
Figure 10 shows that a high % of respondent was unable to work (68%). A lack of financial security adds to the personal distress and can place extra strain on relationships and families. Of those able to work, 1 worked from home and another stated it was difficult as she was not able to work in closed buildings, or requiring an opened window in the area.
Figure 10 Income
We found that of the 8 who were not working and not receiving any pension, 3 of these noted that they have a working partner. Of the 42 receiving a pension, 13 were Aged care, 19 were Disability and 3 were unspecified. It is reasonable to assume that the 13 receiving Aged pensions may be nearing a requirement for placement in an Aged Care Facility. From the previous data were found that of the 31 who responded, 27 (87%) reported that they were unable to access Aged Care Facilities. This will become a greater issue as more come to retirement age. In this population, 52% have had MCS for 20 years or more, most probably contracted during their active working life.
Degree of Disability
Individuals with MCS suffer general disability with symptoms and health problems. This is combined with the disability that results from exposure to chemicals that are ubiquitous in the environment and extremely difficult to avoid. Figure 11 demonstrates the high degree of disability reported, with 96 % experiencing significant (medium 44%, high 52%) disability with only 4% not disabled at all. The 52% reporting high level of disability would require assistance with many aspects of their life including shopping, banking and dealing with other attendant issues. For some there did not appear to be much support two stating that their partners had left due to the strain of dealing with MCS. Unemployment is usually accompanied by financial, social and psychological losses.
Figure 11 Degree of Disability
Degree of Isolation
Isolation occurs when MCS becomes so severe the patient loses the ability to leave home to go shopping, go to church, go to the beach, park, take part in some form of entertainment, visit the doctor or the dentist. Individuals stop going out to avoid the disabling symptoms experienced when exposed to commonly used chemicals. These are ubiquitous in the indoor air of many public built environments. The need for an early diagnosis of chemical sensitivity, identification of chemical(s) involved and avoidance strategies put into place is paramount to preventing the problem from evolving into MCS and the severe form of the disease. MCS patients should always be encouraged to move around in society as much as possible to avoid isolation.
Isolation also happens when family and friends withdraw support because they either do not believe the MCS patient or they can no longer deal with the MCS lifestyle that is based on avoidance and special need. In many cases families and friends are not prepared to take the necessary such as to be fragrance free during.
In our study, Figure 12, we found an elevated degree of isolation 50% high, 38% medium with only 12% reporting low isolation.
Figure 12 Degree of Isolation
To summarise the impact and burden data
- A high number of individuals were unable to access health services including Aged care facilities. This is becoming an issue as the MCS population ages.
- Low levels of support from friends
- The majority of individuals were unable to work
- Without prompting 16 noted that assistance with low allergy housing was needed.
- The resultant disability (94% partial to total) and isolation (88% medium to high) indicates a need in the community which is not being meet.
It is important for service providers to know the significance of environmental sensitivities in order to help and accommodate persons who experience them. Providing appropriate work accommodation could improve workplace retention and quality of life for people with disabling sensitivities. This may be as simple as making a fragrance free environment by engaging in education of staff that fragrances are solvent based products, they can be dangerous and can significantly contaminate indoor air.
The Message is To Recognise early and Implement measures to ameliorate it and prevent escalation. While diagnosis by a medical specialist is important for the reasons mentioned above, some measures to reduce exposure to potentially harmful chemicals can be done although much harder without medical recognition.
Last Updated (Monday, 27 June 2016 03:38)