Breast cancer survey highlights allied health gap

Breast Cancer Network Australia (BCNA) has called for more funding for allied health outpatient services in public hospitals and an increase in the Medicare rebate for allied health, following a national survey of breast cancer survivors.

Long-term side effects of breast cancer treatment, such as lymphoedema management, sexual dysfunction, anxiety and depression, require ongoing and regular visits to allied health specialists. According to BCNA CEO Kirsten Pilatti, these specialists are an essential yet often unfunded component of follow-up care.

“There are so many studies highlighting the importance of specialists such as exercise physiologists for a breast cancer treatment plan,” Pilatti said.

“For many breast cancer survivors, the cost of accessing the expertise of these specialists puts them beyond their reach.”

BCNA’s 2018 survey, which involved more than 10,000 men and women, formed part of the organisation’s ‘State of the Nation’ report. It revealed that around one-third of respondents needed information about allied health-related services to help them manage treatment side effects.

Asked about their needs which would be included under an allied health care plan, 35% of respondents listed lymphoedema, 32.5% nutrition and exercise physiology, and 20% needed support for sexual wellbeing.

Pilatti said the research pointed to a range of gaps meeting the financial, emotional and practical needs of people diagnosed with breast cancer, with the cost of accessing allied health services a major concern.

“Cost was clearly the major issue with my allied health plan,” said Mossman survivor Kim Parish. “It impacted the number of visits with my psychologist and meant I had to build in more time between visits just to cover the added expense.”

Anne Horstmann from South Australia meanwhile said she was never made aware of the out-of-pocket costs for her allied health team, and that it “would be wonderful to have more access to them under Medicare”.

Gippsland survivor Merylee Punchard said she often went without the assistance of a lymphoedema specialist after exhausting the five rebated visits.

“I was diagnosed shortly after my marriage and we had no savings,” she said. “We barely had enough money for food and rent so most times I go without treatments from allied health specialists and struggle through the pain.”

“The out-of-pocket costs are crippling,” added Marg Arnold from Wangaratta. “The lack of affordable regional services contributes to the poor outcomes for country folk.

“The whole process has been exhausting physically, mentally and financially for me.”

Pilatti said improved access to allied health is critical for breast cancer survivors.

“The people who do have a Chronic Disease Management Plan (CDMP) highlighted the inadequacies of Medicare rebates restricting allied health plans to just five visits per year. Some newly diagnosed people use up that number in their first month,” she said.

“Some are not even advised by their doctor of the availability of a CDMP. They are forced to cover the total cost to access the allied health services they require.”

BCNA’s research shows the average out-of-pocket expenses for breast cancer survivors was $5000 in the first five years after diagnosis. One-quarter reported costs of more than $17,200.

“That does not factor in reduced earning capacity through lost wages or the additional costs people living in regional and rural areas faced due to travel and accommodation,” Pilatti said.

“Once people move into the survivorship phase, these services become even more difficult to access or find, and don’t always appear in follow-up care plans.

“To make a real impact we need a coordinated approach. BCNA is urging the government to increase the allied health plan, health professionals to refer their patients to programs and services, and patients to be proactive about their own health.”

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