ARRC is staffed on a part time basis with a single telephone line service. The Centre has a staff member in attendance Monday to Thursday, between the hours of 10am and 4pm. People contacting ARRC through our telephone may experience slight delays in speaking with a staff member due to a single telephone line and staff attending to other enquiries, therefore if needed, please leave a brief message for staff who will return their call as soon as possible. Please ensure that you leave clear return contact details.
Please note: International telephone calls cannot be returned due to telephone restrictions. As an alternative for detailed enquiries, ARRC encourages the use of email correspondence through:- HNELHD-ARRC@health.nsw.gov.au or fax +61 2 49855347
Education is provided to patients and health professionals via the following:
- Patient education days education days incorporating executive staff, nurse educators, allied health workers and staff specialist presentations.
These education days present expert advice on management of chronic diseases and symptom management. The focus is on learning to live well with autoimmune illness through developing self-management strategies, including access to external support services.
- Seminars & workshops and guest speaker presentations ,
- Up-to-date website with information sheets regarding management of symptoms and understanding autoimmune illnesses,
- Email based question and answer
- Research specific education workshops and discussion groups
- Facilitation of local support networks through the 'Café Conversations' program, and
- Hospital inpatient individual education sessions for newly diagnosed patients.
Education sessions are tailored to the patient needs, including symptom relief information, disease progression information, advice on living with a chronic disease and maintaining a relatively normal lifestyle. Partners, relatives and friends are encouraged to attend these sessions with the patient to provide support and allow for an open forum for questions involving patient care.
Informal patient education also occurs via research interviews and assessment sessions with the project research coordinators. The coordinators are highly experienced nurses and health technologists, and are able to provide advice regarding symptom management referring patients for more specific advice as appropriate to the patient’s needs.
Two thousand and eight marked the introduction of a Psychologist to the ARRC team, two Thursdays a month for a 3-hour period. The psychologist provides psychological support for a variety of autoimmune patients, ranging in age from 14 to over 65. Patients are referred for an initial session and follow-ups are left to the discretion of the psychologist, with the number of sessions available for each patient capped at six. Due to the high demand for counselling sessions, there is normally a 2 month waiting period for new patients. All patients must be referred by a Health Specialist and have a diagnosis of a systemic autoimmune illness.
Outside of this service patients in need of counselling can access services through their local health network and general practitioners.
The ARRC is a unique service, which accords with many strategic directions being pursued by the both Local, State and Federal health departments. There is a deep, unmet need worldwide to educate and support individuals and families affected by lupus, scleroderma and other autoimmune conditions. People newly diagnosed need to quickly understand the impact the illness is likely to have on their life and the lives of those around them, and also that having an autoimmune illness may involve profound lifestyle changes. The provision of education and support has been demonstrated to improve health outcomes in many chronic diseases with asthma and diabetes highlighting the benefits.
The diagnosis and treatment of autoimmune diseases often requires specialist referral and specialist knowledge. Patients and practitioners who contact the ARRC enquiring about appropriate referral directions are provided with pathways to help navigate the health system. ARRC is the link to many extended services operating within the community that can aid patients and health practitioners provide support to people living with autoimmune illnesses.
The ARRC helps to counteract and address the growing costs of chronic disease management. The timely provision of information and support increases patient self-efficacy, improves quality of life, enhances health outcomes, and may reduce recurrent hospitalisations. The introduction of a psychologist to our staff helps to decrease the problems of anxiety and depression which often complicate and exacerbate chronic diseases such as the autoimmune conditions.
The provision of content evidence based paper and web available information factsheet resources provides an opportunity for patient and health professional education on specific illness and symptoms. The information available offers management strategies which can be adopted by the individuals on a daily living basis to support their general health and wellbeing and potentially improve their quality of life.
ARRC website address: www.autoimmune.org.au
Apart from information factsheets this site includes an opportunity for illness general illness symptom management questions to be answered (Your Space), information on educational and awareness fundraising events and activities, and research projects offered by the ARRC. The site also has information how you can support ARRC and its activities through becoming a member.
The ARRC facilitates local community support connections through its new program 'Café Conversations'. This program acknowledges the vast geographical distance of patients, the difficulty many regional and remote patients have in attending seminars and workshops and more formal support group meetings, and the need for close local support. This program was born from patient meeting at ARRC seminars and realizing that they were close neighbours. Within this program ARRC is the connecting avenue between patients and members to protect patient privacy and contact details. ARRC helps you organise casual social gatherings in your local area by inviting and introducing members to an initial gathering. The café conversation group is then formed with ARRC offering ongoing support whenever specific educational needs arise. For more information about setting up a group or joining an existing group please read café conversation information in our events section.
One of the important functions of the ARRC is to increase public awareness of the burden and spectrum of autoimmune conditions. Given their impact upon community health, lupus, scleroderma and other autoimmune conditions do not receive the attention they deserve. It is noteworthy to highlight that autoimmune patients often experience delays in diagnosis, difficulty in gaining access to management programs and an unnecessary reduced quality of life. Further resources dedicated to exploring causes and treatments are urgently needed. Countering web-based disinformation (including some alarmist information about poor survival rates) and improving the diagnosis of these conditions by medical professionals are major goals.
Members receive our quarterly ARRC-HIVE Newsletters.
The ARRC is active in raising awareness of these illnesses within the heath sector and within the wider community through public awareness activities and campaigns. Greater understanding of these illnesses and the health burden associated with chronic illnesses in general, will move towards programs aimed at better management and increased patient wellbeing through support.
The ARRC will continue to be active in this area and would welcome your support and ideas to raise the public profile of these illnesses.
Clinically Applied Activities
The Centre currently offers access to a range of clinically-applied research, screening and therapy initiatives, including:
- Identification of environmental triggers for illness flares of people living with lupus
- Studying prevalence and natural history of pulmonary hypertension in autoimmunity
- Novel tools to diagnose and monitor cognitive dysfunction in lupus-related syndromes
- Investigation of innovative tools to detect early illness in systemic sclerosis
- Clinical trials investigating drug therapies as single or as combination therapies.
- Psychological support for autoimmune flares triggered by psychosocial stressors
- Lifestyle needs assessments to inform us on patient symptom prevalence and appropriate programs to aid in self-management.
Clinically applied research activities of the ARRC are overseen by the Executive Officer, Dr. Marline Squance.
There are currently a number of active studies operating out of the Centre, and a growing list of studies in the planning stages. Please go to the research section if you would like to find out more.
Research funding is obtained through competitive research grants, philanthropic community grants, and community or private donations, and also through Pharmaceuticals Industry sponsored studies. Funding received by ARRC is utilised for research staff wages, study medications, investigative procedures and equipment.
An integral part of our research program is that project outcomes inform us of the most useful direction to focus future ARRC services and research directions. An example of this is the EDOLF study, during the conduction of hour-long interviews with each of the study participants it was identified that there was an unmet patient need for referral of patients to ARRC for specialised psychological support and a need for projects to be developed to investigate cognitive deficits and nutritional needs. This led to the introduction of our psychology service and the SLICE and Nutrition studies. Secondary findings from studies have led to more ideas informing clinical management and future research activities, producing a self-sustaining management cycle.
ARRC aims to develop and continue to undertake studies that are of a high quality and have the potential for tangible returns to people living with autoimmune illnesses through the improved illness management and up to date evidence based information and education programs.