CANCER patients are having to deal with delays in diagnosis, staffing shortages and a "chaotic" appointment system, a new hard-hitting report has revealed.
The survey of more than 2,600 sufferers also found people lost confidence in the NHS as they hit problems with treatment, such as infections, or were looked after by staff who did not listen or "who did not have sufficient knowledge of cancer".
Many participants cited incidents when staff were rude, cold or uncaring, according to the findings. Ward staff chatting loudly at night when patients were trying to sleep was also highlighted as a problem.
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Macmillan Cancer Support is calling for health boards to draw-up action plans urgently to address the issues exposed by the first ever Scottish Cancer Patient Experience Survey which was commissioned jointly by the charity and the Scottish Government.
The charity listed poor communication, poor after care and a lack of emotional support among the themes exposed by the report and said many patients noticed differences in the quality of care they received when they were placed on general wards rather than in the cancer department.
One blood cancer patient described staff discussing her symptoms as if she was not there and remarking that they had never heard of her condition before.
Another told the survey: "At night, staffing was inadequate to cope with the demands of very ill patients and at times treatment and medication were badly delayed due to emergencies."
The report is the second analysis published about responses to the survey. The first, published in June, looked at the boxes patients had ticked and found 94 per cent were positive about their care.
However, this did not examine the more detailed comments patients provided in response to the questionnaires. These have now been examined and reported on by cancer care experts at Stirling University.
Overall they found more than 2,500 positive comments and almost 2,000 negative comments, with the rest classed as neutral or factual.
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There was praise for clinical care, good overall support and the provision of clear and relevant information. But, experiences were variable. Long waits for a diagnosis were a common concern. There were also 289 comments about ineffective and unreliable administration systems, 372 about poor care and 143 about staffing levels.
One breast cancer patient said: "Felt nurses were busy and I felt I did not and was not able to be spoken to as a person."
A myriad of hiccups with appointments were described including follow-up check ups occurring less often than planned, test results going missing and patients not being notified of key treatment times.
The report says: "Participants described the administration system as being 'not fit for purpose' and chaotic, and viewed this as putting their healthcare at risk."
Many examples of insensitivity are given - among them a patient being asked where they wanted to die when they had just been diagnosed and a patient only learning she could have taken steps to increase her chances of having children when it was too late.
Janice Preston, head of cancer services for Macmillan 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.
“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.
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“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."
Professor Mary Wells, of the Nursing, Midwifery and Allied Health Professions Research Unit at Stirling University, where the analysis was conducted, added: “Getting an account of positive and negative experiences in patients’ own words is invaluable to further improving cancer care in Scotland. We now have a unique insight into what matters most prior to diagnosis, during treatment and after people leave hospital."
She said it was crucial to ensure all aspects of care, including getting important letters on time, went smoothly.
Professor Wells added: "Given that patients spend a relatively short time in specialist cancer centres or units, it’s important we ensure staff in all settings are knowledgeable, well trained and confident in caring for people with cancer."
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 after care - with a continuous focus on improving quality and, vitally, outcomes for people with cancer.”
Labour health spokesman Anas Sarwar said: "The SNP should take notice of the findings of this report. It is clear that waiting times for diagnosis and treatment need to be addressed.
"The SNP has failed to meet its own 62-day standard for diagnosis to treatment for three years now.
"The time between suspicion to diagnosis is crucial. That's why Labour will continue to make the case for a standard that means if your doctor suspects you have cancer you can expect to see a specialist and get a diagnosis in two weeks."
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