Health and Care Experience Survey 2013/14 Volume 1: National Results

14 Experiences of Carers

Summary

• Many people who need help for everyday living receive their support from friends and family not from formal services: our survey showed that 41 per cent did not receive their support from formal services.

• Carers were most positive about spending time with other people and having a good balance between caring and other activities.

• Carers were most negative about the impact of caring on their health (32% indicated that caring had a negative impact).

• Around 1 in 5 carers felt that they did not haveing a say in services provided for the cared for person, that services were not well coordinated and that they did not feel supported to continue caring.

• Those providing more hours of care were more negative about the balance of caring in their lives, being able to spend time with others and the impact of caring on their wellbeing compared to those providing fewer hours. However they were more positive than other groups about being able to influence services provided for the cared for person.

• There was considerable variation between CHPs for all of these statements, but particularly on the impact of caring on health and wellbeing and having a say in services for the cared for person.

Introduction

14.1 The contribution of carers in looking after people including some of the most vulnerable in society is widely recognised. Many people who get help and support for everyday living receive it from friends and family instead of, or in addition to, formal services: our survey showed that 41 per cent did not receive their support from formal services, indicating that this may come from friends and family.

14.2 Caring can impact on carers in many ways and in doing so, affect their physical and mental health, resilience, finances, employment opportunities and the ability to strike a good balance between caring and participating in activities unrelated to the caring role. For those providing more intensive caring, they may have to consider making changes to their employment pattern or status such as reducing hours, stopping work or retiring early. Some carers get the support they need but others have difficulties accessing practical and emotional support to enable them to continue caring.

14.3 For some time a range of national and local organisations have been working together and individually to promote the important contribution made by carers in Scotland and to ensure that more is done to support carers. The Scottish Government with COSLA is implementing Getting it Right for Young Carers^[24], the Carers Strategy for Scotland, 2010-2015^[25] and Local Authorities with Health Boards have local carers' strategies. Alongside this, the Scottish Government is investing nearly £114 million between 2007 and 2016 in a wide range of initiatives to support carers and young carers.

14.4 While it is recognised that progress has been made, the Scottish Government has recently consulted on whether to introduce specific legislation to improve support for carers, and to enhance carer wellbeing, thus promoting and extending the rights of carers and young carers. In addition as reported earlier the Scottish Government is currently consulting on a suite of health and wellbeing outcomes to provide a consistent framework for health and care partners to plan for, report and account for their activities around these outcomes. This includes a specific outcome relating to carers, although some of the other outcomes will also be relevant to carers. The draft carers' outcome is:

Outcome 6: People who provide unpaid care are supported to reduce the potential impact of their caring role on their own health and well-being.

14.5 The health and care survey includes a series of questions on carers which encompass a number of different aspects of caring.

Caring responsibilities

14.6 The survey asked respondents whether they had carried out any regular unpaid caring responsibilities for family members, friends, neighbours or others because of either a long-term physical /mental health/ disability or problem relating to old age.

14.7 Fifteen per cent of respondents indicated that they look after or provide regular help or support to others (Table 23). This figure is considerably higher than the Scottish Census (2011)^[26] and Scottish Household Survey (SHS)^[27] which both reported that 9 per cent of adults provide unpaid care in Scotland. The higher figure is likely to reflect the sample in the Health and Care survey which comprises people who have used GP services in the last year as well as the age profile of survey respondents. Older age groups are over represented in the survey as a whole compared to the population estimates and this group is more likely to provide unpaid care. Another reason for the difference is that it is recognised that the Census and the SHS undercount carers principally because of the effect of proxy responses in these surveys (i.e. where one member in the household answers the question on behalf of others). The Scottish Health Survey, which involves all household members answering the question directly, is currently the preferred source for estimating unpaid caring prevalence and this figure is 18 per cent^[28].

Table 23: Caring responsibilities

Whether respondent provides regular help or support to others (family members, friends, neighbours or others) due to long-term physical / mental ill-health / disability or problems due to old age	%
No	85
Yes up to 4 hrs	4
Yes, 5-19hrs	4
Yes, 20-34hrs	1
Yes, 35-49hrs	1
Yes, 50+hours	54

14.8 Of those who provide care, the distribution of the number of hours per week is shown in Table 24. It shows that nearly 1 in 3 provided more than 50+ hours a week, while just over 1 in 4 reported that they provided up to 4 hours and 5-19 hours respectively:

Table 24: Distribution of number of hours of caring per week

Hours of caring per week	%
up to 4 hrs	28
5-19hrs	26
20-34hrs	10
35-49hrs	6
50+hours	310

Characteristics of carers

14.9 We looked at the age and gender of carers who responded to the survey. The breakdown of carers by age and gender is shown in Table 25. The highest proportion of carers (42%) is in the 50-64 year category while around one third of carers are over 65 years. The lowest proportion is among the younger adult group (6%) but this figure is much lower than other surveys as younger adults are under-represented in the health and care survey. A higher proportion of women respondents provide care (62% of women compared to 38% of men), although this is not matched in the 65 years or more group where a higher proportion of men provide care (42% of men compared to 28% of women) (Table 25).

Table 25: Characteristics of carers: age and gender

Age group	Male	Female	All adults
17-34	5	7	6
35-49	14	21	19
50-64	40	44	42
65+	42	28	33
All adults	38	62

Experiences of caring and impact on wellbeing

14.10 The survey asked carers about their experiences of caring and the impact on their wellbeing. Carers were asked how much they agreed or disagreed with the following 6 statements:

• I have a good balance between caring and other things in my life
• I am still able to spend enough time with people I want to spend time with
• Caring has had a negative impact on my health and wellbeing
• I have a say in services provided for the person I look after
• Services are well coordinated for the person(s) I look after
• I feel supported to continue caring

14.11 Table 26 sets out the positive, negative and neutral response to the above statements. We have reported per cent negative below, for example reporting the proportion of carers who felt that they didn't have a good balance between caring and other activities. This is because there was huge variability in the per cent positive responses which could be explained by a large proportion of the respondents ticking neutral ie neither agree or disagree.

14.12 In general responses were mixed. Carers were least negative about ability to spend enough time with others and balance between caring and other activities - 13 per cent reported that they were not able to spend enough time with other people and a similar proportion (14%) felt that they did not have a good balance between caring and other activities.

14.13 Carers were most negative about the impact of caring on their health (32% indicated that caring had a negative impact). In addition 1 in 5 carers indicated that did not have a say in services provided for the person they look after, while similar proportions of carers reported that these services were not well coordinated (19%) and that they did not feel supported to continue caring (18%) Table 26.

14.14 There was considerable variation between CHPs for all of these statements. The areas where there was most variation was on the following statements:

• Caring has a negative impact on my life - negative results ranged from 24% to 40%
• I have a say in services for the person I look after - negative results ranged from 13% to 27%

14.15 It's not clear the reasons for such variation between CHPs and whether they can be explained by differences in quality and quantity of service provision or in differences in population characteristics such as deprivation and age within different CHPs or a combination of both. Further analysis of the data will be undertaken to explore the factors which influence variation in the experiences of carers.

Table 26: summary of carers experience of caring

Statement	Positive %	Neutral (Neither agree/disagree) %	Negative %
I have a good balance between caring and other things in my life	70	17	13
I am still able to spend enough time with people I want to spend time with	72	14	14
Caring has had a negative impact on my health and wellbeing	42	25	32
I have a say in services provided for the person I look after	49	30	21
Services are well coordinated for the person(s) I look after	48	33	19
I feel supported to continue caring	44	38	18

Influence of intensity of caring and experience

14.16 We examined whether the intensity of caring makes a difference to the experience of carers. In general we found that those who provided more hours of care were more negative about the balance of caring in their lives, being able to spend time with others and the impact of caring on their wellbeing compared to those providing fewer hours. For example the balance in life gets worse as hours of caring increases - 4 per cent of carers who care for up to four hours per week responded negatively, while this increased to 20 per cent for those who care for more than 50 hours.

14.17 There were several exceptions to this. In particular the statement on influencing services for the cared for person - carers providing a higher level of support were more likely to indicate that they had a say in services: 16 per cent of those who provided 50 hours or more reported that they didn't have a say compared to 26 per cent of those who provided up to 4 hours.

14.18 There was also evidence that those in the middle groups, providing 5-49 hours, were slightly more negative around the coordination of services and support to continue caring compared to those in the bottom (4 hours) and top groups (over 50 hours). The latter finding may reflect that this 'middle' group of carers may receive little support from services or others to continue caring (Table 27).

Table 27: breakdown of carers experiences by intensity of caring

Statement	Up to 4 hours	5-19 hours	20-34 hours	35-49 hours	50+ hours	Scotland
I have a good balance between caring and other things in my life	4	13	17	20	20	13
I am still able to spend enough time with people I want to spend time with	5	13	18	20	24	14
Caring has had a negative impact on my health and wellbeing	21	30	36	39	41	32
I have a say in services provided for the person I look after	26	22	22	19	16	21
Services are well coordinated for the person(s) I look after	16	20	21	21	19	19
I feel supported to continue caring	11	21	22	23	21	18