People with musculoskeletal conditions feel invisible and often left to suffer in silence by a healthcare system and clinicians who fail to recognise their diagnosis and the impact it has on their lives, a new survey shows.

Released by Musculoskeletal Australia, a report entitled “Making the invisible visible” makes a call for an urgent overhaul in the way people with conditions such as osteoarthritis and back pain are treated, with recommendations for a move to a patient-centred model of self care and better access to treatment and support services.

The report, based on a survey of 3453 Australians with musculoskeletal conditions such as rheumatoid arthritis and osteoporosis to gout and SLE, found that three quarters (74%) were not receiving the treatment to meet their needs.

Patients said their musculoskeletal condition was managed most often by a GP (70%), followed by physiotherapists (39%) and complementary and alternative therapists such as chiropractors, naturopaths and massage therapists (32%). Rheumatologists were cited by 24% of patients.

While much of the report was dedicated to detailing the insidious effects of chronic pain and loss of function on everyday lives, it also revealed a lot of negative feedback about treatment received.

“A surprising number of people however revealed extreme dissatisfaction with the standard of care received. Complaints included slow or incorrect diagnoses, having symptoms trivialised or dismissed for reasons that felt invalid, and needing to see a series of professionals before finding someone that met their needs,” the report noted.

“From these comments, it is clear that what people want is health professionals who are competent, compassionate, able to listen, and have the consumer’s best interests at heart.”

In addition, two thirds of respondents said they experienced financial stress because of their condition, particular in relation to the costs of specialist appointment (50%), allied health appointment (46%) and cost of medications (39%). Almost 60% said they wanted affordable treatment options and services (such as physiotherapy, exercise classes), and 46% wanted more government support specifically for the ongoing cost of treatment such as the costs of medication, GP chronic disease management plans and mental health plans).

Patients self treated their with musculoskeletal conditions with a mix of OTC medications (74%), prescription medicines (60%) and also supplements such as chondroitin (48%). Just over a third had medications  such as cortisone injections administered by a health professional.

Non-drug therapies included diet/nutrition (70%), exercise (63%) and mind-body techniques (31%).

When asked about any improvements in care they would like to see, :

• 27% wanted shorter waiting times to see a specialist.
• 25% wanted a better referral to other services (e.g. physiotherapy, podiatry, support groups).
• 19% wanted more help or support from their health professionals.
• 13% wanted shorter waiting times for surgery.

There was also a large unmet need for access to services,  with 40% of patients saying they wanted to know more about the services that may be available to them (e.g. GP chronic disease management plan, physiotherapy, financial aid, transport assistance etc); 25% wanting access to support and services in their local area, and 17% wanting better social services specifically for people with musculoskeletal conditions.

One third of patients also wanted better information from healthcare professional to understand their condition and how to manage it. Currently, more than half said they got their information about musculoskeletal condition from online sources, and 10% from social media.

The authors of the report said the findings showed that musculoskeletal conditions had a major unrecognised impact on millions of Australians, and they put forward six recommendations to promote recognition and self care.

“This is a national emergency, and this report must be the trigger for change,” they wrote.