All.Can Patient Survey

Nearly two in five respondents ( 39% ) felt they had inadequate support to deal with ongoing symptoms and side effects , both during and beyond active treatment. In particular, nearly a third ( 31% ) felt that they lacked adequate information and care for dealing with the pain they experienced. Respondents reported a lack of information and support on what to expect after their phase of active treatment was over. Specifically, more than a third of respondents ( 35% ) felt inadequately informed about how to recognise whether their cancer might be returning or getting worse. Gaps in information and support along the entire care pathway were more prevalent among those with more advanced cancers – reflecting similar findings in the literature that the support needs of these patients are often less well met than are those of patients with earlier-stage cancer. 3. Integrated multidisciplinary care A common finding was that respondents felt there was sometimes a lack of coordination in their care – for example, they had no written care plan, nor a primary point of contact to whom they could direct questions. Respondents stated that cancer specialist nurses played a critical role in filling this gap, acting as the respondents’ companion and ‘navigator’ through the cancer care journey and helping them adapt all aspects of their lives to cancer – both during and after treatment. Respondents wanted more information about what they could do to support their treatment and recovery in terms of diet, exercise and complementary therapies. In most countries, they had to pay for these services themselves. While three quarters ( 76% ) felt that support from allied health professionals (dieticians, physiotherapists etc.) was always or sometimes available, nearly a quarter ( 24% ) did not. The majority of respondents ( 69% ) said they needed psychological support during or after their cancer care , yet one in three ( 34% ) of those who needed such support reported that it was unavailable. Even when psychological support was available, it was not always considered helpful. This may reflect the limited availability of specialist psycho-oncology services that are designed with the needs of cancer patients in mind. In addition, respondents expressed concerns about the impact of cancer on their families and wanted psychological support for them as well. More than two in five respondents ( 41% ) were not given information at the hospital about available peer-support groups . 09 Patient insights on cancer care: opportunities for improving efficiency