Cancer care survey shows failures in Northern Ireland patient support and advice
Fewer than one in five cancer patients were asked to take part in a clinical trial in 2017, it has been revealed.
The Northern Ireland Cancer Patient Experience Survey (CPES) report has revealed a drop in the number of people asked to participate in a research programme between 2015 and 2017.
It has also highlighted failures in the support and advice offered to cancer patients both in hospital and in the community.
Heather Monteverde from Macmillan Cancer Support said work must be now done to establish the reasons for the areas of concern so that they can be addressed.
However, she said the decrease in the number of patients who felt their primary care providers had done everything to help them could be blamed on the shortage of GPs in Northern Ireland.
"The considerable drop has coincided with the reduction in GPs who are extremely overstretched," she said.
The report also found improvements are required in how potential side effects of cancer treatments are explained to patients, while the number of people able to find someone in hospital to discuss their worries and fears had fallen from 70% to 53%.
The Northern Ireland CPES report examined the experiences of 3,500 people diagnosed with cancer and who were treated in hospital between May and October 2017.
It revealed that the experience of cancer patients has improved as a result of significant investment to increase the number of nurse specialists in Northern Ireland.
Ms Monteverde continued: "In 2015, people were unambiguous in their call for improved access to clinical nurse specialists (CNS) who are an invaluable point of contact for patients, their families and carers.
"Their voice was heard - the Health and Social Care Board committed to expand the CNS workforce with an investment of £11.5m in 60 new posts, £7m of which was provided by Macmillan Cancer Support.
"We know from further analysis of the survey that people who were given the name of a CNS had statistically higher scores on another 47 questions.
"The positive impact of ongoing investment in the CNS workforce is clear from the results and an indication of the importance of listening to patient experience.
"The CNS workforce plan is scheduled to complete in 2021 by which time we would hope to see even greater impact on the experience of people living with cancer."
Ms Monteverde said the improvement in patients' experiences as a result of more specialist nurses demonstrates that areas of concern, such as those relating to GPs and clinical trials, must now be addressed.
The survey was a joint project between health bosses and Macmillan Cancer Support and the results will be used to help shape future services.
Dr Damien Bennett from the Public Health Agency said while the report has identified a large number of positive experiences, there is no room for complacency.
He said: "The survey invited people to share their experiences and views on the care and support they received across various settings.
"The results show that the experience of cancer patients in Northern Ireland is very positive - the average score for overall rating of care is 8.97 out of a maximum of 10.
"However, while scores have improved for 21 questions, there are areas that could be improved including information about side effects, access to people to talk to about worries and fears, and integration across health care teams.
"These are all areas that should be addressed if we want to meet the individual needs and expectations of people living with cancer in Northern Ireland."
Ms Monteverde also said despite the positive results from the report, urgent action must be taken to address waiting times for cancer treatment.
"The fact is that waiting times are unacceptable," she said.