There are many resources available to help you live with axial spondyloarthritis (axSpA). Your doctor may put you in touch with a social worker, who can help explain the financial and health services that are available to you. These can include any pensions or allowances that you might be entitled to, plus any financial assistance such as Health Care Concession Cards or low-cost treatment programs. Your local council, community health centre, community group or religious organisation may also offer programs that include practical advice, activities, social networks or just someone to talk to.
Arthritis Australia is always here to help you too. Contact your State/Territory Arthritis Office to find out about their wide range of resources, management programs and support groups – call 1800 011 041 or visit arthritisaustralia.com.au/contact-us/
In addition, there are Independent Living Centres in each state that provide advice on products and services, including aids and devices, that can help with day-to-day activities. Visit www.ilcaustralia.org.au or call 1300 885 886 for your closest centre or more information.
There are many people who can help you deal with both the functional and emotional side of axSpA. Your first step is to try to talk honestly with your partner, parents or children about how you feel. Give them a chance to talk too – they might have worries or feel that they don’t know enough about your condition and how it is affecting you.
Visit your GP if you are worried about how well you are coping, as your GP may be able to suggest additional ways of coping, or may prescribe medicines if you are especially worried or depressed. Many people with axSpA will also visit a physiotherapist (physio). These practitioners can use various treatments, including exercise therapy and hydrotherapy (water exercise), to keep your joints as flexible, strong and pain-free as possible. They will also show you exercises and pain-relief techniques to use at home.
You might also visit an occupational therapist (OT), or they may come to your home or work. OTs can provide advice on how to do things in a way that reduces joint strain and pain and teach you strategies to protect the mobility of your joints, particularly those in your hands. They may also suggest changes to your house — such as new taps — or aids such as splints that can make life easier and protect your joints.
A podiatrist can help take care of your feet. They may find ways to reduce the pain in your toes, knees or hips, perhaps by providing shoe inserts or advice on footwear.
An exercise physiologist can give you advice about exercise, including how to get started safely and the best type of exercise for your health and ability.
Your GP may also refer you to a counsellor or psychologist, who can talk to you about your worries, feelings and moods, then suggest practical ways to work through them. If you want to contact a psychologist directly, call the Australian Psychological Society on 1800 333 497 or visit www.psychology.org.au. Beyondblue also provides information and advice about depression, anxiety, available treatments and where to get help. Visit www.beyondblue.org.au or call 1300 22 4636. Lifeline provides a 24hr confidential telephone crisis support service for anyone across Australia experiencing a personal crisis. Call 13 11 14.
Gov.au
Use this portal to find out about assistance that could be offered by state and territory departments of e.g.: ageing, disability, education, health, and transport.
The shed online
The shed online is a place for men to socialise, network, make friends and share skills. It aims to recreate the atmosphere of “real life” Men Sheds – a safe space where men can feel confident to discuss and exchange information. The Shed Online aims to foster a sense of community and build men’s social networks. The Shed Online offers a range of project ideas, gardening tips, cooking demos, movie reviews, health information, news and events.
SANE Australia
SANE Australia is an independent national charity helping people affected by mental illness.
Osteoporosis Australia
Osteoporosis is a condition in which the bones become fragile and brittle, leading to a higher risk of fractures – breaks or cracks – than normal bone. Osteoporosis Australia is closely aligned with Arthritis Australia in every state and territory:
NPS Medimate
Independent, not-for-profit and evidence based NPS Medimate, has many ways to help you make better decisions about your medicines and any medical tests you may need. They are funded by the Australian Government Department of Health.
National Health Service Directory (NHSD)
The National Health Services Directory (NHSD) is a convenient and accessible new resource. It builds on and consolidates some existing regional healthcare directories to provide detailed information on available health related services to anyone with internet access.
The directory provides access to reliable information, and will assist you to choose and connect with the most appropriate health services for your current needs.
MyDr
myDr is a comprehensive Australian consumer health site with free information for patients, covering a wide variety of diseases and conditions including arthritis, tests and treatments, health and fitness issues and medicines.
Medicare
Comprehensive guide to what federally-funded health services are available under the Medicare scheme:
www.humanservices.gov.au/customer/dhs/medicare
Livewire
Livewire, a subsidiary of the Children’s Starlight Foundation, has created an online community for families affected by a serious illness, chronic health condition or disability. Focusing on the estimated 450,000 children and young people aged over 10 and under 21 years, Livewire now has over 6,000 members including parents and the siblings of the affected members.
Kids Help Line
Kids Help Line is a free and confidential, telephone counselling service for 5 to 18 year olds:
Independent Living Centres Australia
Information about products and services to help people remain independent and improve their quality of life.
Health Matters: ABC radio and TV
Health Matters is the Australian Broadcasting Corporation’s online gateway to health. Here you’ll find original material about issues and conditions, as well as health news and transcripts from ABC Radio, ABC TV, and other areas of ABC Online
Health Coaches Australia and New Zealand
Health Coaches Australia and New Zealand (HCANZ) is the professional association for health coaches. Health and wellness coaching encompasses the sciences of positive psychology, behaviour change, nutrition, exercise and lifestyle medicine with the dynamic art of relationships, teamwork and community. Visit HCANZ to check the qualifications of health coaches near you.
Healthdirect Australia
Healthdirect Australia was established by the Council of Australian Governments with the purpose of providing all Australians with access to trusted professional health information without time or geographic restrictions.
No matter where people live, what time of the day or night, you can access trusted advice on the most appropriate care for their health issue.
The services available through Healthdirect Australia are:
healthdirect: call 1800 022 222 or visit their website
after hours GP helpline: call 1800 022 222
HealthiNation
Arthritis and related videos.
Findapharmacy
One of the most recent tools developed by the Pharmacy Guild of Australia is Find a Pharmacy. This enables anyone with access to the internet to locate their closest pharmacy. The basic search tool can be used to enter your address, suburb and state. Find a pharmacy will locate your nearest pharmacy, giving you directions using Google maps.
It also allows you to search by opening hours, services provided, and languages spoken. For these options, you will need to use the advanced search option.
Dietary guidelines for all Australians
Links to download a range of information sheets and booklets from the National Health and Medical Research Council.
www.nhmrc.gov.au/about-us/publications/australian-dietary-guidelines
Consumer Health Forum
The Consumers Health Forum of Australia (CHF) is the national peak body representing the interests of Australian healthcare consumers. CHF works to achieve safe, quality, timely healthcare for all Australians, supported by accessible health information and systems.
Centrelink
Find out about Commonwealth benefits to which you may be entitled.
www.humanservices.gov.au/customer/dhs/centrelink
Carers Australia
Information and advocacy for people who provide support to children or adults who have a disability, mental illness, chronic condition or who are frail aged.
Beyondblue
beyondblue is a national, independent, not-for-profit organisation working to address issues associated with depression, anxiety and related substance misuse disorders in Australia.
Disability support for older Australians (DOSA) Program
DSOA replaced the Commonwealth Continuity of Support Program (CoS). If you are over 65 and had previously received disability services from the CoS Program, but were not eligible for the NDIS, you could be eligible for the DSOA Program. Visit the Department of Health's website for more information.
Australian Rheumatology Association Database (ARAD)
ARAD is a national Australian database which collects important health information from individuals with inflammatory arthritis such as rheumatoid arthritis, ankylosing spondylitis, juvenile arthritis and psoriatic arthritis.
The aim of ARAD is to determine the effectiveness and safety of the new biological drugs used to treat inflammatory arthritis.
Medicine Information Sheets
The development of the Medicine Information Sheets has been a collaborative effort between many members of the ARA in consultation with Arthritis Australia and Communicating for Health, Victoria. They have recently been extensively revised using feedback from patients focus groups and new information.
www.rheumatology.org.au/patients/medication-information.asp
Australian Orthopaedic Association
Orthopaedics – including joint replacement – explained by surgeons:
Cochrane Australia
Cochrane is an independent, not-for-profit organisation made up of 37,000 contributors from 130 countries. We work together to make the vast amounts of evidence generated through research useful and accessible for individuals, organisations and governments around the world.
Cochrane produces trusted health information in the form of systematic reviews that are free from commercial sponsorship and other conflicts of interest. Our evidence underpins and informs the daily decisions of clinicians, patients and carers, researchers, policymakers, and funding bodies. Our work is recognised as representing an international gold standard for high quality, trusted information.
Cochrane Australia is an active part of this collaborative network, with over 3,000 local researchers, clinicians and patient advocates who synthesise and analyse the latest health research. Our contributors can be found in all corners of the continent, from Darwin to Hobart, from Perth to Brisbane and most places in between.
To find a dietitian, contact the Dietitians Association of Australia www.daa.asn.au
Ph: 1800 812 942
To find a psychologist, contact the Australian Psychological Society www.psychology.org.au
Ph: 1800 333 497
painHEALTH Musculoskeletal Pain Help
painHEALTH has been developed through the Department of Health, Western Australia in collaboration with Curtin University, University of Western Australia and the Musculoskeletal Health Network.
The aim of the website is to help health consumers with musculoskeletal pain access reliable and usable evidence-informed information and skills to assist in the co-management of their musculoskeletal pain.
http://www.painhealth.csse.uwa.edu.au
Arthritis New Zealand
Arthritis Society Canada
Canada’s only not-for-profit organisation devoted solely to funding and promoting arthritis research, programs and patient care
American College of Rheumatology
The public area on the website of the contains many useful resources www.rheumatology.org
Arthritis Ireland
Ireland's only organisation working to provide information and support for people with arthritis.
Thank you to the American College of Rheumatology for contribution of content and materials the above overview.