The publication of the personal patient accounts from the Scottish Cancer Patient Experience Survey provided instant publicity thanks to national media coverage but only reflected a fraction of what was in the report.
Compiled from an independent analysis of over 7,000 comments made by more than 2,500 people with cancer, these personalised responses are the stories of individuals whose experiences provide an insight into what matters most to people with cancer from diagnosis to end of treatment.
Whilst the results of the multiple-choice survey questions, published in June, provided an indication of the aspects of care which are experienced positively and those which leave room for improvement, they provide little detail of why or how individual patients experience those aspects of care.
The steering group for the first Scottish Cancer Patient Experience survey deliberately decided to include a greater number of these responses which had been used in the previous UK nation surveys, as they recognised the power that a patient’s own words had to bring their experiences to life.
Boxes were provided under each main section of the questionnaire, to find out more about 1) the lead up to diagnosis, 2) treatment decision making, 3) support, 4) inpatient care, 5) outpatient care, 6) radiotherapy and chemotherapy, 7) overall NHS care.
The comments were anonymised, coded and analysed to try and understand what aspects of care patients experience positively and which aspects of care appear to contribute to a more difficult experience for individuals.
More than half of the comments reflected positively on a patient’s experience of care. They tended to be brief and general, giving an overall impression of ‘good care and support’.
Where details were given, they suggested that caring, knowledgeable and professional staff, clear and sensitively conveyed information, a coherent clinical team with supportive health care professionals who were involved across different parts of the cancer journey, and efficient organisational systems all contributed to a more positive experience and a sense of trust in the system.
Those which conveyed a more negative picture suggested that a range of experiences across the cancer journey could contribute to patients not feeling confident within the system and to not feeling that their individual needs were met.
Aspects of the infrastructure or environment of care, combined with inefficient and cumbersome administrative systems and processes of care often contributed to poor experiences.
Those experiences which mapped to not feeling confident within the system included poor care, difficulties getting into the system in the first place, being given inappropriate or inconsistent information, receiving inadequate support and attention after the end of treatment, and not understanding what was going to happen next or losing faith in the system because something had already gone wrong.
Aspects of patients’ experiences which seemed to convey that their individual needs were not always considered or met included poor communication, inadequate or poorly tailored information, poor emotional support or lack of involvement and choice in decisions about care.
Sometimes people felt that their families or their specific needs e.g. those related to disabilities, were not taken into account. Staffing levels, uncomfortable ward environments, food, hygiene and transport concerns as well as lack of privacy often compounded patients’ experiences.
In addition, patients commented frequently on the stress and anxiety they felt when waiting for treatment to start, waiting for tests or for something to happen, which they had been expecting.
As cancer care has become more and more specialised, there has been a tendency for health care professionals to consider the component parts and sub-specialisms within cancer as separate entities. From the patient’s point of view, this doesn’t work.
When someone is diagnosed with cancer, they are already dealing with massive disruption to every aspect of their life. What they need from us is a joined up system of care which treats them as a person with a life outside cancer and remembers that every encounter with the health care system matters to the way in which that person feels and experiences their cancer, their treatment and their recovery.
Sometimes those things get lost when we focus on the immediate priorities within our own ‘bits’ of the service.
I hope that our report of the personal comments made by those who responded to the Scottish Cancer Patient Experience Survey will remind us of what matters at an individual level and will encourage health professionals, policy makers and charities across Scotland to debate ways of making our system of care more patient-centred.
By Mary Wells
Mary is a cancer nurse with a clinical academic background in health services research within oncology. Her research is mainly focussed on the supportive care of people with cancer and in particular the needs, experiences and outcomes of people who have completed treatment. Since 2009 she has been a Specialist Advisor to the leading cancer charity Macmillan Cancer Support and the Consequences of Cancer Treatment Collaborative .