Scottish Cancer Patient Experience Survey 2018: national report

9. Support

Summary

• 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.

Clinical Nurse Specialist

A Clinical Nurse Specialist (CNS) is a specialist cancer nurse who helps individuals get the right care and gives them help and advice on coping with cancer.

It has previously been demonstrated that access to a CNS can have a significant positive influence on patients’ experiences. In particular, additional analysis of the 2015 SCPES results^[14] found that those who did not have an easily contactable CNS were significantly more negative for all questions. Further analysis on other Cancer Patient Experience Surveys across the UK^[15] has also shown that CNS provision was the most important driver of positive responses.

Most survey respondents (86 per cent) reported that they had been given the name of a CNS who would support them through their treatment. Of those who had tried to contact their CNS, 89 per cent found it very or quite easy to contact them (Figure 9.1). This is a slight decrease from 90 per cent in 2015. Six per cent of people found it very or quite difficult to contact their named CNS, and the remaining five per cent reported that they had found contacting them neither easy nor difficult.

Figure 9.1: Ease with which respondents were able to contact their Clinical Nurse Specialist.

When respondents had important questions to ask their CNS, 89 per cent got answers they could understand all or most of the time (Figure 9.2). This is consistent with results from 2015. Nine per cent got answers they could understand some of the time, and two per cent got answers they could understand rarely or never.

Figure 9.2: Frequency with which respondents understood answers to important questions, provided by their Clinical Nurse Specialist.

Support from Health & Social Services

During treatment, a cancer patient will often continue to need the support and care of their local GP and nurses. Around two in three people (68 per cent) thought that their GP Practice definitely did everything they could to support them while they were having cancer treatments (Figure 9.3) which is in line with results from 2015. Around one in five people (21 per cent) thought their GP Practice supported them some of the time, and around one in ten people (11 per cent) felt their GP Practice could have done more to support them.

Figure 9.3: GP Practice did everything they could to support individual during cancer treatment

Many people will need to access health and social care services, such as district nurses, home carers or physiotherapists, both during and after cancer treatment. Feeling adequately supported and cared for by these services is vital for a positive care experience.

The survey asked respondents whether they had been given enough care and support from health or social services. There was a high proportion of people who reported that they did not need help from health or social services either during or after their treatment (49 and 51 per cent respectively). These people were excluded from analysis for these questions.

Three in five people (60 per cent) felt they were definitely given enough care and support from health or social services during their cancer treatment. This is an increase from 54 per cent in 2015. Almost one in four (24 per cent) were given care and support to some extent, and the remaining 17 per cent reported that they were not given enough care and support from health or social services.

One in two people (50 per cent) were definitely given enough care and support once their cancer treatment had finished – an increase from 46 per cent in 2015. Twenty-eight per cent received care and support to some extent, and 22 per cent felt they were not given enough care and support following their cancer treatment.

Figure 9.4: Proportion definitely being given enough care and support from health or social services during and after treatment, over time

Over half of respondents (55 per cent) felt they had been completely supported emotionally / psychologically by healthcare professionals during their cancer treatment. Around three in ten people (31 per cent) felt supported to some extent and 13 per cent reported that they had not felt support emotionally / psychologically by healthcare professionals.

Information on Additional Support

Cancer and its treatments can affect every aspect of an individual’s life, bringing problems from debt to depression, and can last beyond the end of treatment. Support is often available but people may not always be aware of it, and so ensuring individuals receive information on this support is of clear importance.

The survey asked respondents whether healthcare professionals had given them information on the impact of cancer on day-to-day activities; support or self-help groups; and financial help or benefits. In 2015, similar questions were asked but specifically about hospital staff, rather than healthcare professionals in general, and so these results are not directly comparable. Respondents who reported that they had not required this type of information were excluded from analysis.

Over three in four people (77 per cent) reported that healthcare professionals had discussed with them or given them information about the impact cancer could have on their day-to-day activities.

Around four in five people (81 per cent) were given information about support or self-help groups for people with cancer.

Three in five people (60 per cent) were given information about how to get financial help or any benefits they might have been entitled to.

Figure 9.5: Proportion of positive responses to questions on additional support information provided by healthcare professionals

Both during and after treatment, most people will require help and support at home from family and friends. It is therefore important that an individual’s family and friends are provided with adequate information on how to care for them.

Just over half of respondents (52 per cent) reported that healthcare professionals definitely gave their family or someone close to them all the information they needed to help care for them at home. This is a five percentage point decrease from 57 per cent in 2015. Around a quarter (24 per cent) felt that their family or someone close was given information to some extent. The remaining quarter (24 per cent) felt that their family or someone close to them was not given the information they needed to help care for them at home.

Support from Third Sector Organisations

Respondents were asked whether they had been given information or support from third sector organisations, such as charities or voluntary / community groups. There was a high proportion of people who reported that they did not need help from third sector organisations either during or after their treatment (43 and 51 per cent respectively). These people were excluded from analysis for these questions.

Just over half of people (54 per cent) who needed help from the third sector were given information / support which they found useful during their cancer treatment. Forty per cent of people did not receive any information / support from the third sector and five per cent did receive information / support but did not find it useful.

Once their cancer treatment had finished, 46 per cent of those who needed help from the third sector were given information / support and found it useful. Four per cent of people received information / support but did not find it useful and 51 per cent were not given any information / support from the third sector.

Figure 9.6: Received information / support from third sector

When asked whether they felt they had been supported emotionally and psychologically by third sector organisations during their cancer treatment, just over half of respondents (53 per cent) reported that they had not needed or wanted this type of support. Of those who did, 35 per cent felt supported completely by third sector organisations; 26 per cent felt supported to some extent; and 39 per cent did not feel they had been supported in this way.