All.Can Patient Survey

34 Respondents were not always given adequate information about pain management and palliative care. • 31% of respondents said they were never, or only sometimes, given enough information and care to deal with the pain they experienced. Although 69% of respondents said they received enough information and care to manage their pain, this was not the case for all respondents. Further, in the qualitative comments, respondents suggested that their worries or the pain they experienced were sometimes dismissed. ‘Although I kept saying that my pain was 7–8 out of 10, each time I returned to the room for chemotherapy, I was never advised or directed to solve this problem. I was the one to take charge… but it took (and still takes) a lot of energy.’ Respondent from France Why it matters Without adequate assessment of patient needs – both during and after active treatment – suboptimal service use (overuse or underuse) may occur. This can have a negative impact on patient outcomes and costs incurred for healthcare systems. 39 More individualised approaches to follow-up versus a one-size-fits-all approach may have benefits as well – for example, by supporting patients in self-managing their condition. 37 In England, it is estimated that follow-up costs £1,554 per patient over a five‑year period (equivalent to 4–5% of the total national cancer budget) but one study showed it may be possible to save up to £1,000 per patient through a stratified approach to follow-up, pathway efficiency and better management of comorbidities. 37 2 | Information, support and shared decision-making What we know Evidence shows that, at the end of their treatment, cancer patients may be left to deal with consequences of treatment that could have been managed or avoided altogether. 36 37 Long-term consequences and effects of having cancer and its treatment can include physical effects, chronic fatigue, sexual difficulties, mental health issues and pain. Problems can persist for up to 10 years after treatment, or even longer, and may lead to social isolation and financial difficulties due to disruption to work. 38