Notices
On this page you will find news about the activities of the Chronic Illness Alliance Inc. and its members. All notices about events and activities, campaigns, developments, fund raising activities, and any news-worthy items accepted. All members (and interested browsers!) are invited to send in their notices by e-mailing to: jtamlyn@chronicillness.org.au.
On this page
Peer Support Special Interest Group
CIA Policies 2007
Consultancy Fees for the Chronic Illness Alliance
Multiple Conditions Working Group
Publications of Christine Walker
Indigenous Hospitality House-a place for indigenous people to stay when a relative is in hospital
Some CIA History - Pictures from the 1996 Launch of the Alliance
Peer Support Special Interest Group
The Chronic Illlness Alliance has created a special interest group for members who are interested in hearing about peer support initiatives undertaken by some of our members. The aim is to assist our members develop their own programs of peer support which is a means to empower people with chronic illnesses to assist one another to achieve health and well-being.
For further details please contact Jo-Anne Tamlyn on 03 9882 4654.
CIA 2007 Policy managing chronic illness
CIA Policy 07 Real flexibility in the workforce
Consultancy
Fees for the Chronic Illness Alliance
Workshops and Focus Groups
The Chronic Illness Alliance has considerable expertise in organising, facilitating and analysing workshops and focus groups with a range of health consumers and service providers.
Fees apply as follows:
- Initial consultation with client agency to establish purpose of undertaking a consumer consultation; most appropriate method of consultation eg workshop, focus group, interviews, (group or individual).
- Background reading (if necessary) and preparation of workshop materials.
- Attendance at meetings to review materials, inform clients of progress, participate in related project activities.
- Recruitment of participants.
- Development of open-ended questions or workshop materials, including consent forms and ethics approval where necessary.
- Workshop, focus group facilitation or undertake interview process. This includes tape-recording, and scribing the session.
- Transcription of tapes
- Analysis of content and preparation or report.
- Personal presentation of report, if desired.
Charges of $1000 per day or $125 per hour, all inclusive. Single tasks such as recruitment may be negotiated.
Additional charges include: (a) reimbursing the consumers between $25 and $40 per focus group, (b) costs of refreshments and venue hire (c) consumer travel costs (d) additional assistance (e) GST.
Literature Reviews and Discussion Papers.
Examples of recent work undertaken by Chronic Illness Alliance
- September 2003. Facilitation of three discussion groups for Southern Health.
- July-October 2003. Preparation, facilitation and analysis of two consumer focus groups, for project in collaboration with University of New South Wales General Practice Integration Unit. Report pending. Topic: GP use of information technology and consumer privacy issues.
- October-November 2002. Preparation, facilitation and analysis of focus groups on behalf of National Asthma Council. Report provided.
- June-August 2002. Preparation, facilitation and analysis of focus groups with Greek, Chinese, Vietnamese and Italian consumers, in cooperation with Peer-Led Self-Management of Chronic Illness Project. Topic: CALD consumers understanding of concepts of self-management programs.
Literature reviews, reports, discussion papers
The Chronic Illness Alliance has undertaken research projects concerning issues in chronic illness, such as consumers' needs, policy implications of chronic illness and the role of self-management programs in caring for people with chronic illnesses.
Fees apply as follows:
- Initial consultation with agency to establish the extent, aims and objectives, and the outline of work proposed.
- Collection of literature
- Drafting of review, discussion paper.
- Presentation of drafts for comment.
- Inclusion of material based on comments.
- Preparation of final draft.
Charges of $1000.00 per day or $125.00 per hour, all inclusive. Variations according to need may be negotiated.
Additional charges may include cost of research assistant, travel costs.
Multiple Conditions Working Group
In August 2007, the Committee of Management of the Chronic Illness Alliance in Australia established the Multiple Conditions Working Group.
The basis for this new working group is that the Alliance recognises that many people have more than one chronic illness; that when a person has one chronic illness they may be at greater risk of developing other chronic illnesses. Additionally people with chronic illnesses are more likely to suffer adverse events and medical errors because they have greater contact with the health system than others requiring acute care. The possibility of error and adverse events increases if a person has more than one condition.
The Alliance ran an exploratory workshop in August and participants reported that as well as their primary conditions some people had Type 2 Diabetes, depression, asthma and musculoskeletal conditions. Many of those participating had three of four conditions. In some instances, participants had developed a condition as a direct result of their primary condition, while in other instances it was a side-effect of the long-term treatment they were on. Other participants had developed a condition as a result of an adverse event.
In some cases multiple chronic conditions are a consequence of improved treatments and care. People with cystic fibrosis and thalassaemia, for example, are now living much longer than was anticipated even a few years ago. While they value this improved life expectancy, it is sometimes accompanied by the development of other conditions such as cardiomyopathy, Type 2 Diabetes and renal failure in the case of thalassaemia or CF-related diabetes in the case of cystic fibrosis.
Depression was a problem for many of the participants. While there may be a well-documented relationship between having depression and Type 2 Diabetes there was also a strong relationship between living with a rare chronic illness such as thalassaemia and living with uncertainty about one’s life expectancy or living on low incomes due to incapacity to work. Depression was also likely to be significant when a person’s quality of life was reduced due to an adverse event.
Participants believed that many people with multiple conditions missed out on services because they did not fit some of the guidelines; they were treated for a primary condition and the other conditions were not considered as important. Some people with multiple conditions could not afford the time or expense of travelling between the various services. Most importantly where rarer conditions were concerned, health professionals did not always have the experience of treating the complex interrelationship of conditions.
The workshop developed its own draft definitions of ‘multiple conditions’. These definitions are not clinical ones but ones that provide directions for the Working Group to pursue a program that will lead to improved understanding of what it is like to live with multiple conditions.
Draft set of definitions
A cluster of health conditions that create a complex relationship between individuals and the health system;
A cluster of health conditions that require negotiating systemic barriers to achieve the best outcomes for individuals with these conditions
Draft aims
To identify those organisational and political conditions that together create complexity of service management for people with multiple conditions;
To identify those systemic barriers to optimal care for people with multiple conditions.
The Multiple Conditions Working Group will develop a discussion paper which will provide direction on removing some of those barriers and ultimately assist people with multiple conditions to achieve a better quality of life.
Members of the Chronic Illness Alliance who would like to participate in this Working Group should call Christine Walker on 9882 4654.
Publications of Christine Walker
Indigenous Hospitality House
The Indigenous Hospitality House is a communal house that offers indiegenous people a place to stay while a relative is in hospital. It is situated in North Carlton. To be eligible you must first contact the Indigenous Liaison Officer at the hospital or the local health worker who will arrange the stay for you. The house is not allowed to accept anyone who does not have a referral. There are four non-indigenous resident workers.
