{"id":14068,"date":"2023-10-04T16:43:47","date_gmt":"2023-10-04T05:43:47","guid":{"rendered":"https:\/\/arthritisaustralia.com.au\/?p=14068"},"modified":"2023-10-04T16:52:36","modified_gmt":"2023-10-04T05:52:36","slug":"cost-of-living-pressure-and-poor-access-to-services-a-tipping-point-for-aussies-battling-complex-pain-condition","status":"publish","type":"post","link":"https:\/\/old.arthritisaustralia.org.au\/wordpress\/cost-of-living-pressure-and-poor-access-to-services-a-tipping-point-for-aussies-battling-complex-pain-condition\/","title":{"rendered":"Cost-of-living pressure and poor access to services a tipping point for Aussies battling complex pain condition"},"content":{"rendered":"

MEDIA RELEASE<\/b><\/span><\/p>\n

Support resource launches as 1 in 2 cut back on essentials to pay for treatment<\/p>\n

[Sydney, Australia] \u2013 Australians living with the debilitating pain and fatigue of fibromyalgia are reaching a \u2018tipping point\u2019 in coping with their disease as the rising cost of living, challenges in accessing healthcare, and restrictive criteria for social services collide, says Arthritis Australia.<\/p>\n

A new poll among Australians living with fibromyalgia (n=334) reveals half (50%) are cutting back on basics – food, toiletries, clothing, school supplies, petrol and power – to pay for critical healthcare including specialist appointments, physiotherapy and medication.<\/p>\n

Two-thirds (67%) report they cannot afford many of the health appointments and the medications they need. Of these, 83% have stopped using allied health support or are reducing the number of visits; 48% have cut back on seeing their specialist; 37% on GP appointments; and 28% on medications.<\/p>\n

Arthritis Australia has launched a new resource to help people understand the way fibromyalgia works and equip them to make decisions about their own care. But the organisation flags more support is needed to help patients navigate the patchwork of health and welfare systems to access appropriate levels of care and financial support.<\/p>\n

Up to 1 million Australians, predominantly women, are living with fibromyalgia, a complex chronic illness characterised by widespread pain in muscles, ligaments or tendons, sleep disturbance, fatigue, and cognitive dysfunction known as \u2018fibro fog\u2019.1 Many struggle to obtain a definitive diagnosis, waiting five years or more. Fibromyalgia can lead to lifelong disability and typically emerges in the prime of people\u2019s lives.<\/p>\n

\u201cPatients are telling us they\u2019re making extremely difficult decisions about what treatments they can afford while trying to cover increasing living expenses. These pressures are further impacting their already poor quality of life,\u201d states Jonathan Smithers, CEO, Arthritis Australia.<\/p>\n

\u201cMany are already on lower incomes, or unable to work at all, as a result of their condition and the often high costs to see specialists, GPs and allied health professionals are pushing this already burdened community to the edge,\u201d he adds.<\/p>\n

This urgent situation is exacerbated by a short supply of rheumatologists, with many months wait for appointments in the public system and similar delays for private. Arthritis Australia says an additional 184 adult and 19 paediatric rheumatologists are needed to match world standards.<\/p>\n

\u201cWe simply do not have enough rheumatologists to meet demand,\u201d says Dr Sam Whittle, Senior Consultant Rheumatologist specialising in fibromyalgia, Queen Elizabeth Hospital, Adelaide. \u201cOur healthcare system is just not set up to support patients with a chronic complex illness like fibromyalgia, which can be incredibly pervasive and have a profound effect on quality of life.\u201d<\/p>\n

People with fibromyalgia need a comprehensive approach which may include medication, exercise, physiotherapy, dietary management, cognitive behavioural therapy, relaxation and techniques to assist with sleep and more. Medicare subsidises only a limited number of these appointments, with patients paying for private health insurance or the full cost out of pocket to try and cover the difference.<\/p>\n

\u201cDespite being more common than rheumatoid arthritis, people with fibromyalgia experience poorer access to specialist care,\u201d Fibromyalgia Australia National Programs Coordinator Cathie Powell, said. \u201cConsumers report stigmatisation, unacceptably long delays in receiving diagnosis, lack of access to medical care, and difficulties obtaining financial and other support, causing unnecessary disability, loss of education, reduced employment, mental health impacts and breakdown in relationships.\u201d<\/p>\n

On behalf of people with fibromyalgia, Arthritis Australia is calling for:
\n\u25aa Funding to increase the rheumatology workforce and access to public hospital clinics
\n\u25aa Support for fibromyalgia patients to navigate the welfare and NDIS systems
\n\u25aa Fibromyalgia to be a focus of implementing the National Women\u2019s Health Strategy, of the inquiry into medical misogyny (Women\u2019s Health Advisory Council) and of the NDIS Review
\n\u25aa Increased Medicare-subsidised allied health appointments (from 5 to 10 per annum) in chronic disease management plans
\n\u25aa Better understanding from health professionals and the community to reduce stigma<\/p>\n

Fibromyalgia Australia is also calling for funding of a fibromyalgia clinical research centre, where patients can be fully assessed for the multisystem causes of their pain condition, and their health outcomes can be monitored over their lifetime.<\/p>\n

\u201cThings are tough right now, but there\u2019s hope,\u201d said Dr Whittle. \u201cClinically, we have come a long way towards legitimising and understanding fibromyalgia. New treatments are being researched and we\u2019ve made good strides in reducing the stigma, a feature of all chronic pain conditions.\u201d<\/p>\n

\u201cFibromyalgia is nearly as common as endometriosis but is largely ignored,\u201d concludes Jonathan Smithers, Arthritis Australia. \u201cWe realise there are many competing demands for the health and welfare dollars, but fibromyalgia isn\u2019t even in the queue.\u201d<\/p>\n

 <\/p>\n

Issued by Cube on behalf of Arthritis Australia. For more information please contact: Anne-Marie Sparrow \/ 0417 421 560 or Camilla Toft \/ 0406 698 662<\/p>\n

The Arthritis Australia \u2018Taking Control of Your Fibromyalgia\u2019 resource offers patients information and practical advice to help them: understand fibromyalgia and what it means for them; work best with their healthcare team to reduce symptoms like pain and tiredness; when and if medications can help; choose activities to help manage their situation; and find support to cope with emotional impacts. Funding was received from the Australian Government.<\/p>\n

The \u2018Cost of Living and Fibromyalgia\u2019 online survey ran 13 – 15 September 2023.<\/strong><\/p>\n

334 people living with fibromyalgia reported cutting back on expenses including: food (less fresh food and meat, more no-name brands and tinned foods, no take-aways); cleaning products; beauty \/ toiletries; home \/ car maintenance; pet care (vet); entertainment (dinners \/ coffees with friends, movies, streaming services, technology); petrol, public transport; holidays; accommodation costs (selling home, moving to a granny flat); utilities (delaying power bills, using less heating \/ hot water); clothing (nothing new, more second-hand); school supplies \/ clothing; gifts for grandchildren; and \u2018nice-to-haves\u2019 \/ treats. Other reported health cuts included: psychology, osteopathy, naturopathy, acupuncture, hydrotherapy, supplements, assistive aids.<\/p>\n

About Arthritis Australia<\/strong><\/p>\n

Arthritis Australia is the peak national body for arthritis, advocating on behalf of over 3.6 million Australians living with arthritis, and working with many other arthritis organisations to deliver information and support to people living with more than 100 types of arthritis and musculoskeletal conditions. We are a leading non-government funder of arthritis research in Australia and advocate for policies, programs and funding initiatives that will improve the health and wellbeing of people living with arthritis.
\nVisit: www.arthritisaustralia.com.au
\n1.\u2018Taking Control of Your Fibromyalgia\u2019, Arthritis Australia, accessed 15 September 2023<\/p>\n

\u00a0<\/span><\/p>\n","protected":false},"excerpt":{"rendered":"

MEDIA RELEASE Support resource launches as 1 in 2 cut back on essentials to pay for treatment [Sydney, Australia] \u2013 Australians living with the debilitating pain and fatigue of fibromyalgia are reaching a \u2018tipping point\u2019 in coping with their disease as the rising cost of living, challenges in accessing healthcare, and restrictive criteria for social…<\/p>\n","protected":false},"author":13114,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_relevanssi_hide_post":"","_relevanssi_hide_content":"","_relevanssi_pin_for_all":"","_relevanssi_pin_keywords":"","_relevanssi_unpin_keywords":"","_relevanssi_related_keywords":"","_relevanssi_related_include_ids":"","_relevanssi_related_exclude_ids":"","_relevanssi_related_no_append":"","_relevanssi_related_not_related":"","_relevanssi_related_posts":"","_relevanssi_noindex_reason":"","footnotes":""},"categories":[10],"tags":[],"class_list":["post-14068","post","type-post","status-publish","format-standard","hentry","category-category"],"acf":[],"_links":{"self":[{"href":"https:\/\/old.arthritisaustralia.org.au\/wordpress\/wp-json\/wp\/v2\/posts\/14068","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/old.arthritisaustralia.org.au\/wordpress\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/old.arthritisaustralia.org.au\/wordpress\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/old.arthritisaustralia.org.au\/wordpress\/wp-json\/wp\/v2\/users\/13114"}],"replies":[{"embeddable":true,"href":"https:\/\/old.arthritisaustralia.org.au\/wordpress\/wp-json\/wp\/v2\/comments?post=14068"}],"version-history":[{"count":0,"href":"https:\/\/old.arthritisaustralia.org.au\/wordpress\/wp-json\/wp\/v2\/posts\/14068\/revisions"}],"wp:attachment":[{"href":"https:\/\/old.arthritisaustralia.org.au\/wordpress\/wp-json\/wp\/v2\/media?parent=14068"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/old.arthritisaustralia.org.au\/wordpress\/wp-json\/wp\/v2\/categories?post=14068"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/old.arthritisaustralia.org.au\/wordpress\/wp-json\/wp\/v2\/tags?post=14068"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}