Scottish Cancer Patient Experience Survey 2018: national report

1. Executive Summary

Around 5,000 individuals who had received cancer care in Scotland responded to the 2018 Scottish Cancer Patient Experience Survey. The main results are:

Getting Diagnosed

• Over four in five people (83 per cent) thought their first appointment with a hospital doctor was as soon as necessary.
• People were positive about their first diagnostic test – 86 per cent felt they had all the information they needed beforehand, and 76 per cent felt the results were completely explained in a way they could understand.
• Thinking about when they were told they had cancer, respondents were slightly more positive than in 2015 about being told they could bring a family member or friend with them and being given written information that was easy to understand (76 and 63 per cent respectively).
• Respondents were slightly less positive than in 2015 about understanding the explanation of what was wrong with them (73 per cent).
• Most people felt they were told they had cancer in a sensitive way (86 per cent) which is consistent with results from 2015.

Deciding the Best Treatment

• Most people (87 per cent) felt their treatment options were completely explained before their treatment started.
• Around four in five people were positive about being involved in discussions about the right treatment options and in decisions about their care (80 and 79 per cent respectively).
• People were broadly positive about possible immediate side effects being explained in a way they could understand and being offered practical advice and support on dealing with them (72 and 66 per cent respectively). They were less positive about potential future side effects, with 56 per cent reporting they were definitely told about these.

Operations, Radiotherapy and Chemotherapy

• Respondents who had an operation were positive about the information they were given – 92 per cent reported they received all the information they needed beforehand, 82 per cent received an explanation of how it had gone that they could understand, and 80 per cent were given clear written information on what they should or should not do afterwards.
• Respondents who had radiotherapy or chemotherapy were positive about having all the information they needed before treatment (77 and 74 per cent respectively). However, responses to both of these questions were both slightly less positive than in 2015.

Hospital Care

• Respondents were very positive about their experiences of hospital care – 93 per cent were always called by their preferred name; 91 per cent were always given enough privacy during discussions; and 95 per cent were told who to contact if they were worried after they left hospital.
• People were also very positive about their experiences of person-centred care whilst in hospital. They were most positive about being listened to and having their condition and treatment discussed with them in a way they could understand, with both statements rated positively by 94 per cent of people.

Support

• Most people were given the name of a Clinical Nurse Specialist (86 per cent). Of those people, 89 per cent found it easy to contact them and got answers they could understand from them when they had important questions.
• There has been an increase since 2015 in those reporting they definitely received enough care and support from health or social services during and after their treatment (60 and 50 per cent respectively).
• Just over half of respondents (55 per cent) felt they had been completely supported emotionally / psychologically by healthcare professionals during their cancer treatment.
• Most people received information on the impact cancer could have on their day-to-day activities and on support or self-help groups (77 and 81 per cent respectively). People were less positive about receiving information on financial help / benefits and someone close being given information to help care for them at home (60 and 52 per cent respectively).
• During treatment, 54 per cent of people who needed or wanted it received useful information or support from the third sector. After treatment, this dropped to 46 per cent of people.

Overall Experience

• The vast majority of people (95 per cent) rated their overall experience of cancer care positively, supported by 97 per cent reporting they were always treated with dignity and respect by healthcare professionals treating them.
• Around seven in ten people (69 per cent) found it easy to travel to their cancer care appointments and just over half of respondents (53 per cent) experienced no difficulties with their travel. The most common difficulties experienced were length of travel time and cost of travel / parking (experienced by 25 and 18 per cent of people respectively).
• Most people (92 per cent) reported they were able to bring someone to their appointments when they wanted to all or most of the time.
• Three in ten people (30 per cent) were given a care plan and half of people (51 per cent) were given a written note of all the treatments they received.