Breast cancer survivors affected by the financial cost of allied health have revealed the need for urgent improvement in the delivery of specialist health services.
The issue was revealed in a survey conducted by Breast Cancer Network Australia (BCNA), which has called for more funding for allied health outpatient services in public hospitals, and an increase of the Medicare rebate for allied health from five visits per year to 10.
Long-term treatment side effects such as lymphoedema management, sexual dysfunction, anxiety and depression, require ongoing and regular visits to allied health specialists.
BCNA CEO Kirsten Pilatti said these specialists were 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.
'For many breast cancer survivors, the cost of accessing the expertise of these specialists puts them beyond their reach. We want a system that helps women and men diagnosed with breast cancer to come out and be able to move on with their life, not be crushed by the experience.'
The 2018 survey, which involved more than 10,000 men and women, formed part of BCNA's State of the Nation report. It revealed around one third 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 per cent listed lymphoedema, 32.5 per cent nutrition and exercise physiology and 20 per cent needed support for sexual wellbeing.
Kirsten said the research pointed to a range of gaps meeting the financial, emotional and practical needs of people diagnosed with breast cancer.
BCNA's network from around the country highlighted the cost of accessing allied health services as a major concern.
'The number of sessions covered under Medicare aren't enough to cope with my need to see a lymphoedema specialist, but I can't afford any further sessions,' said Keira Bale from Newcastle.
'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 said she was never made aware of the out-of-pocket costs for her allied health team.
'The treatment I got was invaluable. What didn't help was the financial cost. 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. 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,' said 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,' she said.
Kirsten said improved access to allied health was 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.
'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 $5,000 in the first five years after diagnosis. One quarter reported costs of more than $17,2001.
'That does not factor in reduced earning capacity through lost wages or the additional costs of people living in regional and rural areas faced due to travel and accommodation.
'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.'
1 Breast Cancer Network Australia, The financial impact of breast cancer report (2017)
BCNA has several members
