Macmillan Cancer Support wants NHS boards to draw up plans to address the issues raised in the first Scottish cancer patient experience survey, commissioned jointly by the charity and the Scottish Government.
The second report on the survey of 4,835 patients has been published, providing analysis of the text comments left by 55% of the participants.
It found that while, on the whole, participants made more positive than negative comments, analysis of the negative comments indicated there were significant issues which had impacted on some aspects of patients’ care.
The report, written by experts at the University of Stirling, found the main themes among the negative comments were patients not feeling confident within the system and not feeling their individual needs were met.
The most common issue which affected patients’ confidence was receiving poor care during treatment in the form of inadequate management of pain and side effects, exposure to infection, problems with treatment or being cared for by staff who did not have sufficient knowledge of cancer, the report found.
Many patients also did not feel confident if they had received inadequate aftercare, with no care plan or point of contact for their care after treatment had ended, it said.
Some participants also felt administration problems and long waits and delays impacted on their care, increasing anxiety and reducing confidence.
Factors which contributed to patients feeling they were not treated as individuals included poor communication, lack of involvement in decision-making, lack of information and poor emotional support.
Janice Preston, Macmillan’s head of cancer services in Scotland, said: “While it is good news the positive comments outweigh the negative, these negative comments represent people with cancer, already going through one of the worst times of their life, whose experience was poorer than it should have been.
“There is an urgent need to ensure everyone has a good experience of care, moving from our current one-size-fits all approach that sees patients as a set of symptoms to treat rather than as a person who must be asked what they want and need.”
Health Secretary Shona Robison said: “We jointly commissioned this survey with Macmillan to help us understand where improvements are needed in cancer services and how we can focus our efforts on the areas that people tell us are important to them and where they consider we could do better.
“We will use these findings to help us take forward our new cancer strategy, which is backed by £100 million over five years to tackle cancer through prevention, detection, diagnosis, treatment and aftercare - with a continuous focus on improving quality and, vitally, outcomes for people with cancer.”
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