Scottish Cancer Patient Experience Survey 2015/16

Executive Summary

Introduction

Around 5,000 patients took part in Scotland's first cancer patient experience survey. The survey covered the care journey that a cancer patient experiences, from thinking that something might be wrong with them to the support they received after their acute-care treatment.

High overall rating

Overall perceptions of care were very positive - when asked to provide an overall rating of their care on a scale from 0 (very poor) to 10 (very good), 94 per cent of patients rated their care as '7' or higher.

Importance of care plan

Survey results highlighted the importance of patients having a care plan; across all 50 questions where responses could be classed as either positive or negative, patients who had a care plan responded statistically more positively than those that did not, including:

• the overall rating of care (98% positive among those who had a care plan vs 92% positive among those who did not)
• receiving enough care and support from health or social services after treatment (73% positive vs 34% positive)
• receiving information about how to get financial help and benefits (75% positive vs 42% positive)

These results are particularly notable given that only 22 per cent of patients in the survey reported being given a care plan.

Clinical nurse specialist

The survey also highlighted the role that clinical nurse specialists can play in providing information and signposting services:

• 84 per cent of patients reported that they had been provided with a clinical nurse specialist - the large majority of these patients reported that they had asked their clinical nurse specialist important questions
• Of these cases, 90 per cent received answers they could understand 'all' or 'most of the time'

Staff

Results on patient interactions with staff included:

• 87 per cent of patients felt that they were always treated with dignity and respect
• 86 per cent had confidence and trust in all the doctors treating them and 77 per cent had confidence and trust in all the nurses treating them

Seventy-two per cent of patients felt that there were 'always' or 'nearly always' enough nurses on duty to care for them. This is a more positive result than that received for the equivalent question in the 2014 Scottish Inpatient Experience Survey (64%), which covers patients with a range of conditions.

Diagnosis

There were mixed responses regarding patients' experience of their diagnosis:

• The majority of patients, 86 per cent, reported that they were told that they had cancer sensitively
• 28 per cent of patients were not told that they could bring a family member or friend with them when they were told they had cancer
• A quarter of patients (25%) did not fully understand the explanation of what was wrong with them
• 1 in 3 patients (33%) were not given written information about the type of cancer they had. Patients with certain cancers were significantly less likely to have received written information about their type of cancer following diagnosis

Information provided to patients on treatment

Patients reported inconsistencies in the provision of information and advice at different time points during their clinical care. For example:

• Patients were more positive about receiving information before an operation (93%) than they were about receiving information afterwards about how it had gone (80%)
• Patients were more positive about receiving information before radiotherapy and chemotherapy treatment (81% and 77% positive respectively) than they were about receiving information during the treatment as to how it was progressing (54% and 62% positive respectively).

Non-clinical information provision

Patients were generally less positive when asked about the information they had received from hospital staff that did not relate to clinical care:

• One in five (21%) patients who wanted it received no information regarding self-help or support groups
• One in four (23%) patients who wanted it received no information regarding the impact of cancer on their day to day activities
• Most strikingly however, almost half of patients (49%) who wanted it received no information on financial help or benefits.

Care coordination and administration

Patients were generally positive about the coordination and administration of their care:

• 90 per cent of patients considered that the administration of their care was 'very good' or 'good'
• 89 per cent of patients responded that different people treating them worked well together 'always' or 'most of the time'
• However, 43 per cent of patients' family or friends were not given all the information needed to help them care for the patient at home

There were also particularly positive results around record-keeping and professional communication:

• 98 per cent of patients responded positively to the survey question regarding whether the doctor had the right documents for their outpatient appointments
• and 96 per cent responded positively to the question regarding whether their GP received information about their treatment and condition from hospitals

Communication and support for side effects of treatment

• More than 1 in 4 (29%) patients reported not having the side effects of their treatment fully and clearly explained to them prior to starting the treatment
• Moreover, almost half (47%) were not fully informed about side effects that could affect them in the future, potentially after their treatment finished
• Almost 1 in 10 were offered no practical advice or support for coping with side effects

Patients' worries and fears

The majority of patients experienced worries and fears during their outpatient / daycase care (81%) and during inpatient stays (73%). Although worries were more common amongst outpatients, they were also more likely to find someone to talk to about them (69% of outpatients found someone to talk to vs 50% of inpatients).

Home care and support

Not all patients needed care and support at home, however amongst those that did:

• Only 54 per cent reported getting enough care and support from health and social services during their treatment
• While only 45 per cent reported receiving enough care and support after treatment

Impact of deprivation

Results for fourteen questions showed a statistical difference between respondents residing in the most deprived areas and those in the least deprived areas. Patients from the least deprived areas were more positive in their responses to 10 of these 14 questions; for example, respondents in the least deprived areas reported more positive experiences in receiving explanations in a way they could understand (3 questions in total).

Tumour type variations

Results show variation across tumour types - out of the 50 questions where responses could be classed as positive or negative, 36 showed significant differences across patients with certain cancer types. Colorectal / lower gastrointestinal patients were the most likely to report positive experiences, while urological cancer patients were the least likely to report positive experiences of their care.