This report presents the results and analysis of free-text comments provided in Scotland's first Cancer Patient Experience Survey ( SCPES). Of the 4,835 patients who took part, 2,663 (55%) left at least one free-text comment. The survey included seven free-text comment boxes relating to different aspects of cancer treatment, from the lead up to diagnosis, to the overall experience of cancer care. In total, 6,961 comments were made by participants.
Comments were analysed by a team of independent researchers, using thematic analysis to identify common themes in the responses. Analysis first identified the main positive and negative issues which participants felt influenced their experience of cancer care. Neutral/factual or miscellaneous comments were also identified. The next level of analysis involved assigning codes (arising from the data) to all comments, comparing and contrasting these codes across the data to ensure consistency and reliability. Codes were organised into similar themes, and finally, a mapping exercise was carried out to identify core over-arching themes.
On the whole, participants made more positive than negative comments (a ratio of 1:0.78). Positive comments tended to be shorter, more general and less detailed and specific than negative comments. This is a trend which has also been noted in the English and Welsh cancer experience surveys. Due to the large volume of data, positive and negative comments were analysed separately, imposing a false dichotomy between positive and negative experiences. In reality, participants had variable experiences, not overwhelmingly negative. Whilst the report devotes more space to negative comments and themes, this is a reflection of the detail of the negative comments made by participants rather than a statement of the balance between negative and positive comments.
Several distinct themes emerged from the analysis of the positive comments. Many patients described a positive experience overall, and particularly valued clear information, speedy and efficient processes, good support, good clinical care and feeling that they could put trust in the system.
The most common positive themes related to patients receiving good support and clear, detailed information. Patients particularly appreciated information that was delivered sensitively and gave them a clear idea of what to expect.
Where patients commented on the support provided, they tended to describe caring, kind, professional and approachable staff. Many comments related to receiving support from clinical nurse specialists or other nurses, as well as charities. However, many participants remarked that they had only heard about the support available from charities through word of mouth from other patients.
Analysis of the negative comments indicated that there were significant issues which had impacted on some aspects of patients' care. Analysis of the data identified two key aspects of experience that were critically important (i) not feeling confident within the system and (ii) not feeling that individual needs were met. Beyond these two aspects, participants also described underlying issues with the system and the organisation of services which contributed to poorer experiences in both of these areas, these are described by the following themes (i) structures – the way services and environments are set up; and (ii) processes – the manner in which tasks are carried out.
Not feeling confident within the system
Participants described a range of circumstances which led to them not feeling confident within the health care system. The most common issue which affected patients' confidence was receiving poor care during treatment in the form of inadequate management of pain and side effects, exposure to infection, problems with treatment, or being cared for by staff who did not have sufficient knowledge of cancer. Many participants also did not feel confident if they received inadequate aftercare, with no care plan or point of contact for their care after treatment had ended.
Other issues which affected patients' feelings of confidence included: difficulty getting into the system, receiving inconsistent or inappropriate information, losing faith in the system, and inadequate contact with clinicians. Participants made comments about not feeling confident when they felt they could not trust that they were receiving the best possible care, when they felt doubt that the system would identify if their health was worsening, or when they felt that the system had caused their health to worsen.
Not feeling that individual needs were met
A major issue for participants was feeling that they were not being treated as an individual, with patients feeling isolated and alone within the system of care. Factors which contributed to patients feeling this way included poor communication, lack of involvement in decision making, lack of information and poor emotional support. Some participants also felt their family situation or particular individual circumstances were not adequately accounted for in their care. Patients all have their own individual characteristics which affect how they cope with and respond to treatment, and the participants in this survey highlighted how much they would like these characteristics to be recognised and taken into account by the people providing their care.
Some participants felt that issues with the hospital environment, transport, staffing levels and lack of privacy had contributed to having a worse cancer experience. Problems with the way services were structured caused some patients significant stress and anxiety, and also had a knock on impact on patients' feelings of confidence and being treated as an individual.
Participants commented on the impact that NHS processes had on their cancer experience. Participants felt that administration problems, and long waits and delays impacted on their care, increasing anxiety, and reducing confidence. The way care was organised, often across teams, departments and hospitals, combined with unreliable record systems left patients feeling that their care had been fragmented and that they did not have continuity of care.
Particular problem with the lead up to diagnosis
Analysis of the responses to the different comment boxes in the survey showed that participants were less happy with the lead up to diagnosis than at any other point in their treatment. The main issues for participants in the lead up to diagnosis were experiencing long waits and delays, having difficulty getting into the system, and poor communication. Many participants had experienced delays when they first experienced symptoms, due to their GP not recognising or organising testing of symptoms. This often caused participants to feel that they were not being listened to.