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 in rural and regional NSW.
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 NSW 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 physiotherapists and exercise physiologists for a breast cancer treatment plan,' said BCNA CEO Kirsten Pilatti.
'For many NSW 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 NSW people diagnosed with breast cancer.
Newcastle breast cancer survivor Keira Bale highlighted the financial impact of accessing allied health services.
'After being diagnosed with lymphoedema I found it very expensive and was unable to continue to see a specialist after my Medicare sessions were used up.
'Lymphoedema is ongoing. The number of sessions covered under Medicare aren't enough to cope with it and I continue to spend hundreds of dollars every month on it,' 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 chronic disease management plan and 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)
