The experiences of cancer patients in Scotland range from receiving good support and care to difficulties getting diagnosed and stressful waits and delays, a new report has found.
More than 5,000 patients took part in a major survey asking about their experience of cancer care and support from diagnosis onwards, before the COVID pandemic.
There were almost twice as many positive than negative comments, with many saying they had confidence in the system and received good clinical care.
Charity Macmillan Cancer Support, which funded the Scottish Cancer Patient Experience Survey together with the Scottish Government, says the findings underline why personalised care must remain central to the cancer care system.
One female breast cancer patient who took part in the research commented: “Excellent care from beginning to end. Atmosphere was relaxed, staff friendly, while also very professional.”
A male patient described how his bowel cancer was initially picked up by the national screening programme.
“The link between this programme and my access to local cancer services was speedy and efficient,” he added.
But others reported more negative experiences, including poor care and inadequate support after treatment.
One female breast cancer patient said: “I felt I was not told the long-term effects of the treatment in enough detail.
“Once treatment ended, I felt lost and that the support I had just stopped dead. I still had many symptoms but didn’t know if that was the norm.”
A male patient treated for a haematological cancer highlighted concerns over pressures on staff.
He said: “There are so many people with cancer that the wards are very busy, so staff cannot spend much time with you, as there are others they must see.
“At the end of their 12-hour shift the nurses were very tired, so did what was necessary and went.
“Twelve hour shifts are an accountant’s way of cutting the number of staff and so costs, but it is detrimental to the care of patients.”
Janice Preston, head of Macmillan in Scotland, said: “Cancer doesn’t just affect people physically. It can affect every aspect of life, causing problems from debt to depression.
”Survey after survey has shown people with cancer need support to cope with the effects the illness has on their lives, from causing money worries, to leading to anxiety and depression.
“This new analysis highlights once again why people’s emotional, financial and practical support needs must be recognised as just as vital as good clinical care.”
Last month Health Secretary Jeane Freeman pledged inequalities exacerbated the COVID crisis will be the focus of a new recovery plan for cancer services.
A report has warned the NHS in Scotland is likely to only be able to carry out 60% of the cancer operations it was doing before the pandemic for the next two years due to infection control measures because of the virus.
Ms Preston added: “The past six months have been extremely challenging for the cancer care system and the new cancer recovery plan aims to get it back on track.
“We look forward to working with the Scottish Government to create a system that not only ensures people get rapid testing and treatment, but also support for the many problems cancer causes in every aspect of their lives.”
Ms Freeman said patient opinion will be “at the heart” of the development of the new Cancer Recovery Plan:
“We are investing £9 million to make Scotland the first country in the UK where cancer patients will have access to dedicated practical, financial, and emotional help through the Transforming Cancer Care partnership programme with Macmillan.
“The survey will help drive the work of the partnership in reflecting the new challenges of covid-19.
“The programme will help to ensure everyone with cancer is offered a personal care plan and access to the support they need, and make it easier for people to continue their personal and professional lives for as long as possible whilst under-going cancer treatment.”