A major survey of Scottish cancer patients has uncovered a series of criticisms of NHS staff, systems and treatment plans

Scottish cancer patients find NHS staff rude and insensitive and have complained about delays in diagnosis and chaotic systems that put their health at risk.

The first Scottish Cancer Patient Experience Survey of 5,000 people included comments from 2,600 patients about their treatment. While 2,500 comments were positive, a total of 2,000 comments criticised the care and treatment they received.

Poor communication, poor care and lack of emotional support all emerged as issues, and many patients noticed differences in the quality of care they received on cancer wards or high dependency units compared to general wards

Too many patients don’t feel listened to or respected. They don’t feel treated as individuals and helped to find the support they need - Janice Preston, Macmillan

One woman said: “I was sent home from hospital with no care plan. I live on my own and had a difficult time.”

Another said: “On admission I was asked would I prefer to die at home, in hospital or in a hospice. I found this quite shocking and upsetting to be asked this when I was only just diagnosed, very frightened and not terminal.”

The findings have come in the second report based on the Scottish Cancer Patient Experience Survey, which was commissioned jointly by the Scottish Government and Macmillan Cancer Support.

The first report, published in June, found 94% of cancer patients in Scotland were positive about their care.

However among those who needed it, 46% didn’t get the care and support they needed from health and social care professionals during treatment, rising to 55% after treatment, and only 22% had an ongoing care plan.

One breast cancer patient said she “felt nurses were busy and I felt I did not and was not able to be spoken to as a person”.

The new report delves deeper into the comments patients gave in response to the survey. Of the negative comments, 454 were about waits and delays pre-diagnosis and during treatment, 372 about poor care, 407 about a failure to provide accurate information, and 345 about poor communication.

Patients complained about administrative systems that were not fit for purpose and chaotic, which they feared were putting their health at risk.

Issues included test results going missing, follow-up appointments not happening as often as planned and failures to notify patients about key treatment times.

Macmillan’s head of cancer services in Scotland, Janice Preston, said: “Too many patients don’t feel listened to or respected. They don’t feel treated as individuals and helped to find the support they need to cope with the wider emotional, practical and financial problems cancer causes. The lack of care after treatment is also a real cause for concern.

“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.”

The research was carried out by a team led by Professor Mary Wells at the Nursing, Midwifery and Allied Health Professions (NMAHP) Research Unit at the University of Stirling.

She said: “Looking at the stories behind individual negative experiences, it’s clear that one bad experience can knock a patient’s confidence in the system and badly affect their entire journey. We need to ensure that every contact a patient has, from talking to their GP to travelling to the hospital and getting important letters on time, is joined up.”

Health secretary Shona Robison said: “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 after care, with a continuous focus on improving quality and outcomes.”