Scottish Cancer Patient Experience Survey 2018: national report

5. Getting Diagnosed

Summary

• 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.

Initial Contact with Healthcare Professionals

The survey started by asking individuals how many times they saw a healthcare professional at their GP Practice about the health problem caused by cancer before they were told they needed to go to hospital. Early diagnosis is a critical issue in Scotland, and is widely recognised as significant in improving peoples’ chances of surviving cancer.

Just under a quarter of people (23 per cent) reported that they did not see anyone at their GP Practice before they went to hospital about their cancer. Of those who did see someone at their GP Practice, just over three in four (77 per cent) only saw a healthcare professional once or twice (Figure 5.1).

Figure 5.1: Number of times respondents saw a healthcare professional at their GP Practice before going to hospital

Around three in four people (76 per cent) reported that it was less than three months between them thinking that something might be wrong and first contacting a healthcare professional at their GP Practice (Figure 5.2). Only four per cent waited more than 12 months.

Figure 5.2: Length of wait between thinking something might be wrong and contacting a healthcare professional at GP Practice

When asked how they felt about the length of time they had to wait before their first appointment with a hospital doctor, over four in five people (83 per cent) responded that they were seen as soon as they thought was necessary. Eleven per cent of people felt they should have been seen a bit sooner and six per cent of people thought they should have been seen a lot sooner. This is consistent with results from the 2015 survey.

Diagnostic Tests

Respondents were asked to think about the first time they had a diagnostic test for cancer, such as an endoscopy, biopsy, mammogram or scan. This differs to the 2015 survey, where respondents were asked similar questions about the last time they had a diagnostic test and so these questions are not comparable over time.

Diagnostic tests can involve taking in a large amount of complicated information and can be an unsettling time for individuals. It is therefore important to understand the quality of information and explanations provided at this time.

Most people (86 per cent) felt that, knowing what they know now, they had all the information they needed about their test beforehand. Looking in more detail at those who did not feel they had all the information they needed, three per cent would have liked more written information; six per cent would have liked more verbal information; and four per cent would have like more written and verbal information.

Around three in four people (76 per cent) reported that the results of their first diagnostic test were ‘completely’ explained in a way they could understand. A further one in five (21 per cent) reported the results were explained in a way they could understand ‘to some extent’. Only three per cent of people did not understand the explanation they received or did not have one but would have liked it.

Finding Out About Your Cancer

Finding out you have cancer can be daunting. The way that someone is told about their diagnosis and the option to have family or friends there for support are therefore vital aspects of this part of the cancer journey.

When they were first told that they had cancer, around three in four people (76 per cent) had been told they could bring a family member or friend with them. This is an increase from 72 per cent of people in 2015.

Most people (86 per cent) felt they were told they had cancer in a sensitive way which is consistent with results from the 2015 survey. Nine per cent of people felt the way they were told should have been done a bit more sensitively; and five per cent of people felt it should have been done a lot more sensitively.

Just under three in four people (73 per cent) reported that they completely understood the explanation of what was wrong with them, a decrease from 75 per cent in 2015. One in four people (25 per cent) said that they understood some of the explanation and only two per cent of people reported that they did not understand it.

The survey asked whether respondents had been given written information about the type of cancer they had when they were told they had cancer. Just over three in five people (63 per cent) reported they had and that the information had been easy to understand. This is an increase from 60 per cent in 2015. A further seven per cent of people responded that they had received written information but it was difficult to understand. Three in ten people (30 per cent) were not given any written information about the type of cancer they had.

Figure 5.3: Changes between 2015 and 2018 on % positive responses to questions on finding out about cancer