Background
There are an estimated 10.6 million informal carers (roughly one in five adults) in the UK providing unpaid care for ill, older or disabled family members and friends. A combination of factors, including an ageing population and more people living with multiple chronic conditions, have caused this number to increase rapidly. The pressures associated with caring can have a negative impact on a carer’s physical, mental, and financial wellbeing.
The government implemented the Care Act 2014, which adopted the principle of ‘parity in esteem’ by recognising carers in the law in the same manner as those they care for. The Act gave local authorities the responsibility to assess a carer's need for support and gave carers the right to have any eligible needs met. More recently, the Carers Action Plan 2018 to 2020 set out the Government’s commitment to supporting carers through 64 planned actions, building on the National Carers Strategy. The Survey of Adult Carers in England can be used to monitor the impact of these strategies. Based on responses to the survey, this indicator gives an overview of the experience of carers in their interactions with social care services and their quality of life.
Satisfaction with support or services is directly associated with a positive experience of care and support. The survey asked carers, ‘Overall, how satisfied or dissatisfied are you with the support or services you and the person you care for have received from Social Services in the last 12 months?’
In 2021-22, 36% of carers were ‘extremely’ or ‘very’ satisfied with the support or services they and the person they care for had received; this compares with 39% in 2018-19. 8.5% of carers were ‘extremely’ or ‘very’ dissatisfied in 2021-22, compared with 7.2% in 2018-19. Although the percentage change is small, it represents a statistically significant increase in dissatisfaction with social care service support. A recent report showed that despite an increase in the number of support assessments undertaken by social care services between 2015 and 2020, there has been a sharp drop in carers receiving direct support (in the form of payments) with an increasingly large proportion of carers being given only ‘advice and guidance’.
Between 2012-13 and 2014-15, the proportion of carers who were ‘extremely’ or ‘very’ satisfied decreased from 43.1% to 41.1%, and the proportion who were ‘extremely’ or ‘very’ dissatisfied increased from 4.3% to 5.1%. The 2016-17 results are not comparable with those from previous surveys due to changes in the definition of the eligible population. See ‘About this data’ for more information.
Carers should be involved as much as possible in discussions about how services are designed for the individuals they care for, as this improves outcomes for both the carer and the person being cared for. The survey asked carers, ‘In the last 12 months, do you feel you have been involved or consulted as much as you wanted to be, in discussions about the support or services provided to the person you care for?’
Excluding carers who reported there had been no discussions that they were aware of, the proportion of carers who ‘always’ felt involved or consulted decreased between 2018-19 (40%) and 2021-22 (35%). The proportion who ‘never’ felt involved or consulted increased to 9% in 2021-22 from 8% in 2018-19. While these figures remained relatively constant between 2012-13 and 2018-19, they significantly worsened in 2021-22.
Feeling involved in discussions about the support or services provided to the person being cared for was the greatest factor influencing carers’ overall satisfaction. Carers who felt more involved in discussions reported a greater level of satisfaction than those who did not feel involved (data not shown). The decrease in involvement in 2021-22 further contextualises the increase in dissatisfaction for the same year.
Between 2018-19 and 2021-22, the average carer-reported quality of life score decreased from 7.5 to 7.3 (out of a maximum score of 12), indicating a deterioration in their overall quality of life. Between 2012-13 and 2014-15 the average score also decreased from 8.1 to 7.9. There was a change to the eligible population in 2016-17, so results are not comparable with those from previous surveys.
Carer-reported quality of life scores were 0.3 points higher on average amongst men than women across all years. The quality of life score for men decreased from 7.7 to 7.5 between 2018-19 and 2021-22, and the quality of life score for women declined from 7.4 to 7.2 over the same time period. Carers in the '65 and over' category had an average quality of life score that was 0.5 to 0.6 points higher than those in the '18-64' category. This finding reiterates the emphasis on supporting young carers as one of the priority areas of action in the Carers Action Plan 2018 to 2020 .
For details on how this score is calculated, please see ‘About this data’ below.
About this data
The Personal Social Services Survey of Adult Carers in England (SACE) is a biennial survey that took place for the first time in 2012-13. The survey covers informal, unpaid carers aged 18 or over, caring for a person aged 18 or over. The survey seeks the opinions of carers on several topics that are indicative of a balanced life alongside their unpaid caring role.
The carer-reported quality of life score is a composite measure which combines individual responses to six questions, measuring different outcomes related to overall quality of life. The six questions, drawn from the Survey of Adult Carers in England, are:
- Which of the following statements best describes how you spend your time?
- Which of the following statements best describes how much control you have over your daily life?
- Thinking about how much time you have to look after yourself in terms of getting enough sleep or eating well – which statement best describes your present situation?
- Thinking about your personal safety, which of the statements best describes your present situation?
- Thinking about how much social contact you’ve had with people you like, which of the following statements best describes your social situation?
- Thinking about encouragement and support in your caring role, which of the following statements best describes your present situation?
Each of the questions has three possible answers, which are equated with having: no unmet needs, some needs met, and no needs met. A score of zero for a respondent would indicate a high level of need in each of the domains and a low quality of life score. Conversely, a (maximum) score of 12 would indicate no unmet needs and a high quality of life score. Any respondents who failed to answer any of the six questions were excluded from the analysis. This measure forms section 1D of the Adult Social Care Outcomes Framework.
In 2016-17, the definition of the eligible population changed so that in addition to including carers that have had a carer’s assessment or review from the local authority in the 12 months prior to the survey taking place, carers were also included who had not been assessed or reviewed during the previous 12 months. The results from the survey are weighted to make inferences (or estimates) about the whole eligible population of carers. These estimates and findings are subject to a degree of uncertainty.
The administration of the survey did not take place in 2020-21 as scheduled but was pushed to 2021-22 due to the additional pressures that Covid-19 placed on services.
For more information please see the Personal Social Services Survey of Adult Carers in England’s Data quality statement and Methodology and further information.