Scottish Cancer Patient Experience Survey 2024: Support and Information for People Receiving Cancer Care

Information on cancer and treatment

Care plan and written note of treatment

A care plan is a document received after diagnosis which sets out the needs and goals for the patient. This may include what treatment has been planned and the emotional, practical, and financial support to be received. It is an agreed plan between the patient and their health or social care professionals.

64% of people were not offered a written care plan. 8% said they didn’t know / understand what a care plan was. Compared with all patients, the percentage of people who were not offered a written care plan was larger among people with urological cancer (73%).

Around 72% of people got a written note for all (59%) or some (14%) of the cancer treatments received; around 28% of people did not. Compared with all patients the percentage of people who did not receive a written note of cancer treatment was larger among people with skin cancer (38%).

Understanding the diagnosis

2% of people did not understand the explanation they were given, when they were told they had cancer first time. This percentage was higher among people with haematological cancer (4%).

Deciding treatment

The survey asked questions to explore how person-centred the discussion and decisions around treatment were.

The percentage of people who answered negatively to questions around treatment options, involvement in discussions about the right treatment for the patient, and side effects tend to be low (under 4%) and did not vary significantly by cancer group.

However, 13% of people with breast cancer were not told about any side-effects that could affect them in the future rather than straight away, before they started the treatment(s), compared with 10% of all patients.

Impact of cancer on day-to-day activities

23% said that, looking back, they did not fully understand what they were told about the impact of cancer and / or its treatment on day-to-day activities. This was higher among:

• people with breast cancer (30%)
• younger people (28% among 16 to 64 years old)

Discussing research opportunities

The survey also asked if, since the diagnosis, anyone had discussed whether there were any cancer research opportunities that patients could take part in (for example: clinical trials, tissue donation, additional scans, sharing data). 41% answered “No, but I would have liked them to”. This was higher among people with breast cancer (46%).

The percentage of people who would have liked to discuss cancer research opportunities that they could take part in, but weren’t asked, was larger among younger patients.

Figure 9. The proportion of people who, since the diagnosis, would have liked to discuss cancer research opportunities that they could take part in, but weren’t asked, by age group. Weighted percentages and 95% confidence intervals.