Scottish Radiotherapy Patient Experience Survey 2014: National Results: Volume 1

1 EXECUTIVE SUMMARY

Background

1.1 Over 1,400 patients responded to a questionnaire about their experience of undergoing radiotherapy treatment in Scotland during the period of 11 February 2014 to 4 July 2014. Most of the questions were based on similar (or identical) questions that were been used in a similar survey in England in 2012. The questions covered consent, information before radiotherapy treatment, website information, "about your radiotherapy", daily treatment visits, information about support, following treatment, and overall experience.

Patients are positive about their overall radiotherapy care

1.2 Patients were broadly positive about their overall radiotherapy care. 97% of patients rated their overall care as excellent or very good, with 82% rating their overall care as excellent.

1.3 Patients were particularly positive about the staff: 91% of patients said that staff always took account of what mattered to them (and another 8% said that this was sometimes the case); and 97% of patients said that staff always treated them with compassion and understanding (and another 3% said that this was sometimes the case).

There is room for improvement

1.4 But there is room for improvement. Around a quarter (25%) of patients said that either they were only involved 'to some extent' (21%) or 'not as much as they wanted' (4%) in decisions about their care and treatment

1.5 Over one third of patients (37%) indicated that either the amount of information given at the start of their radiotherapy was only 'satisfactory' (36%) or was 'poor' (1%). Over one quarter of patients (26%) indicated that hadn't had a regular formal review of their treatment.

1.6 Across the five radiotherapy centres results were broadly similar but there were some areas where there was considerable variation. This was particularly around:

• whether or not it was easy to park at the hospital/clinic
• whether the changing facilities allowed patients to maintain dignity
• whether patients had a regular formal review of treatment
• whether patients were given a number to call if they had problems in relation to their radiotherapy, and
• whether patients were given written information on what to expect following treatment and post treatment care

Consent for Radiotherapy

1.7 Patients were generally positive about many aspects of consent for treatment. Nevertheless, in many areas there are still significant numbers of patients for whom consent isn't being properly managed, and who are therefore only satisfied to some extent. This is particularly the case around satisfaction with the way patients' questions are answered (15% of patients were only satisfied to some extent) - and some patients said that they weren't given the opportunity to ask questions at all.

1.8 Similarly a large proportion of patients report that when giving consent they are not completely aware of the side effects (33% understood 'to some extent') and benefits of radiotherapy (23% understood 'to some extent').

Information before radiotherapy treatment

1.9 Patients were generally very positive about the information provided before radiotherapy treatment. But a number of patients said that they didn't get enough written information before their radiotherapy treatment (14%), and/or that it wasn't of the right quality to help with their treatment (2%).

1.10 Most patients (77%) were invited to the radiotherapy department before they started treatment, and virtually all of these (98%) found this helpful.

Website information

1.11 A minority of patients (16%) looked for information about radiotherapy on hospital websites. But the vast majority of those who did found it very helpful (69%) or fairly helpful (30%).

1.12 Of those patients who didn't look for information on hospital websites, a large proportion (26%) said that they didn't have internet access; and 19% said that they didn't know there was information there.

About your radiotherapy

1.13 It's encouraging that the vast majority of patients (97%) said that they were told very clearly how many fractions they would need. Nevertheless a sizeable proportion of patients indicated that they weren't told clearly how long their treatment would last (5%); weren't given a very clear explanation of their plan of treatment (10%); or weren't given very clear information to help manage their side-effects (27%). Over one in 10 (13%) indicated that they were given different information at their treatment visit than at their clinic visit.

1.14 97% of patients who wanted someone to talk to in hospital about their worries and fears said that they were able to find someone.

Daily treatment visits

1.15 Virtually 100% of patients said that the environment of the radiotherapy department (the waiting room, the treatment room, and the department as a whole) was "good" or "very good".

1.16 There were some logistical issues, where patients were less positive (car parking, being informed of delays, and changing facilities). There is room for improvement on a number of questions to do with communication. The majority of patients are having formal reviews of their treatment, but for just over one-quarter (26%) this is not the case.

Information about support

1.17 Of those patients who were given information about support or self-help groups, the biggest proportion (39%) were given information about general cancer support groups in their area. 17% of patients said they would have liked information about support or self-help groups, but didn't get any.

Following treatment

1.18 Whilst many patients said that they were given a range of information and advice following treatment, for some patients this needs to be improved.

1.19 Most patients said that they were given a number to call to see if they had any problems following treatment, but 13% said that they weren't. 15% of patients said that they didn't know what the arrangements were for their next visit. And 44% of patients said that they were not given written information about what to expect in the weeks following treatment.

Results are broadly similar to English survey

1.20 Comparisons of the Scottish survey with the English results have found more similarities than differences between patients' experiences of radiotherapy care. Both report that patients are in the main positive about their radiotherapy care and treatment.

1.21 Where Scottish patients are more positive than English patients is around the environment of the radiotherapy department, and the overall experience of radiotherapy care. Areas where Scottish patients are less positive relate to written information given before and after treatment.