Carers make a vital contribution to the lives of those who are unable to live independently, either through age, disability or illness. The support they provide may be in place of formal support, complementing formal support arranged by the Edinburgh Health and Social Care Partnership or support from other organisations or the care they provide could be the only source of support that the cared for person is receiving.

The Joint Edinburgh Carer Strategy notes that some carers may provide care for a long period of time, whereas others may only provide care for a short period of time depending upon the factors and circumstances of the caring situation, indeed for some carers, their caring role can be a life-long one. Carers may therefore be of any age and their need for support can vary as a result. For instance, young and young adult carers may need additional support when it comes to pressures arising from their caring role affecting their education, starting employment or training and establishing an independent life outwith their caring role. Whereas older carers, or carers who have made this commitment for some time, may need additional support to rest and have a break from their caring role.  All carers may benefit from support and learning on how to safely help the person they care for.

As with other chapters in the JSNA, no account of the impact of COVID-19 has been explicitly considered in the analysis. Carers UK have carried out research[i] on the impact of COVID-19 on carers in 2020, which provides some insights but is not provided at an Edinburgh level. There were 12 key findings which highlight strengths, weaknesses and opportunities in the system. Additionally, in December 2022 the Care Inspectorate[ii] published a report on adult carers’ experiences of social work and social care. Similarly, the impact of increases in cost of living is not explicitly considered in the analysis, but Carers UK published briefings in March 2022[iii] and October 2022[iv] which highlight pressures for carers and the people they look after.

This chapter aims to collate published data and research on unpaid carers to assist in strategic and service planning across the Partnership. Feedback from unpaid carers and those with lived experience has been key to developing the Joint Edinburgh Carer Strategy and it is in this document that the issues arising and support required for unpaid carers can be addressed more appropriately.

[i] Caring behind closed doors,, Carers UK April and October 2020

[ii] Inquiry into adult carers’ experiences of social work and social care, Care Inspectorate (December 2022)

[iii] Under Pressure: Caring and the Cost of Living Crisis, Carers UK, (March 2022)

[iv] Heading for Crisis: Caught between caring and rising costs (October 2022)

Detailed key points are highlighted at the end of each section, however, as a summary, a number are noted here:

  • It is estimated that there are between 45,000 and 70,000 adult carers in Edinburgh.
  • The carers census reports 91% of adult carers provide 20 hours or more of care per week.
  • The Health and Care Experience Survey indicates that 16% of carers in Edinburgh do not have a good balance between caring and other areas of life and a quarter do not feel supported to continue caring.

The Carers (Scotland) Act 2016 came into effect in 2018. The Act placed a number of responsibilities on NHS Boards, Local Authorities and Integration Authorities. These include setting local eligibility criteria for supporting carers, preparing Adult Carer Support Plans and Young Carer Statements for people who identify as carers and preparing a strategy for their area.

The National Care Service (Scotland) Bill, currently at Stage 1, as introduced will make a number of changes to the Carers (Scotland) Act 2016 including the right to a break from caring. These changes are shown in a Keeling Schedule[i] published by the Scottish Government.

The report and evaluation of the first year of contracted provisions supporting the Joint Edinburgh Carers Strategy 2019-22[ii] was considered at the Performance and Delivery Committee on 2 March 2022[iii]. The Joint Edinburgh Carer Strategy 2023-2026 will be considered by the Strategic Planning Group and Integration Joint Board in the second half of 2023.

[i] Carers (Scotland) Act 2016 – Informal Keeling Schedule, Scottish Government,, (21 September 2022)

[ii] Edinburgh Joint Carers Strategy 2019-2022, Edinburgh Integration Joint Board, (20 August 2019)

[iii] Carers Strategy – Performance and Evaluation Year 1 Report  (2 March 2022)

The Scotland Act 2016 devolved powers over a number of benefits to the Scottish Parliament. Carer’s Allowance was one of the benefits to be devolved and in September 2018 became the first benefit to come under the competency of Social Security Scotland. Research published by the Scottish Government in December 2020[i] details the impact of Carer’s Allowance Supplement on the lives of carers. It highlights that although carers felt more recognised and valued it also helped with their mental health and wellbeing. The benefit had not however raised the profile of carers more generally and therefore carers did not feel more recognised or valued by society generally. An additional Coronavirus Carer’s Allowance Supplement, equal to the Carer’s Allowance Supplement, was paid in June 2020 and December 2021[ii].

Policy Position Papers published by the Scottish Government in October 2017 and February 2019 outline Scottish Government policy related to benefits for carers. To help develop the new benefits, the Scottish Government has established Social Security Experience Panels, the members of which have recently been in receipt of benefits. In the summer of 2020 a report on the panel’s views on carer benefits for those caring for disabled children was published[iii]. The report identifies how carers would like to apply for the benefit online and how they have positive experiences of benefits for carers. Respondents were concerned about the impact of receiving the benefit on other benefits and how rules on work and study did not reflect the reality of lives of carers.

In 2022 the Scottish Government held a consultation on the development of Scottish Carer’s Assistance, the replacement of the Carer’s Allowance.  The response to the consultation was published in November 2022. Scottish Carer’s Assistance will be piloted by the end of 2023 and launched in the spring of 2024[iv].

[i] The Evaluation of Carer’s Allowance Supplement, Scottish Government (4 December 2020)

[ii] Benefits for Carers, Scottish Government,

[iii] Social Security Experience Panels: Carer benefits, Scottish Government, (17 August 2020)

[iv] Carer Support Payment to be piloted by the end of this year, Scottish Government (7 February 2023)

Although not broken down to a local authority level by age, The Scottish Health Survey[i] provides a wide range of information on carers across Scotland. The survey estimates that nationally 15% of adults (13% of men and 18% of women) identify as carers. This is a proportion that peaks for the 55-64 age group where 1 in 4 (25%) of the population identify as carers.

The survey report estimates that 10% of adults in Edinburgh aged 16+ are carers. This would provide an estimate of 44,764 carers, however, there are no details of the breakdown of this number. The survey does provide a breakdown nationally (shown in table 4.1) but given the different population structures cannot be used to estimate a breakdown of carers in Edinburgh.

Table 4.1: People identifying as carers by age

Percentage identifying as carers by age 16-24 25-34 35-44 45-54 55-64 65-74 75+ All adults
Male 6% 11% 12% 13% 23% 10% 10% 13%
Female 13% 14% 18% 25% 27% 17% 7% 18%
All Adults 9% 12% 15% 20% 25% 14% 8% 15%

The Health and Care Experience (HACE) Survey[ii] is a bi-annual survey which provides insight to the experiences of people using health and social care services in Scotland. Data for the caring responsibilities section are available at Health and Social Care Partnership level. The latest results, for 2021, were published in May 2022. In the Caring Responsibilities section of the Health and Care Experience Survey show that 15% or respondents in Edinburgh identify as a carer, compared with 18% nationally. Unlike other results from the HACE survey, this is an unweighted result (no adjustment has been made to the data to take into account any groups of the population that may be under-represented in the survey). As such it may not be representative of the population, but 15% would represent an estimated 67,147 carers (applying the 2021 Mid-year population estimate).

These estimates of carers in the City of Edinburgh are far greater than the number of carers identified in the 2021/22 Carers Census[iii]. Nationally there were 42,050 carers in the census and no breakdown to Health and Social Care Partnership was published. In contrast to the Scottish Health Survey the Carers Census only considers carers who have been in contact with carer centres or Health and Social Care Partnerships; some carers in the Scottish Health Survey will not be supported in any way and this may reflect the higher number of carers who self-identify in the Scottish Health Survey or Health and Care Experience Survey. It should be remembered that the carers census is a new data return and as such should be seen as a dataset under development; it was noted that the in the 2020/21 census there were 31,760 carers identified and the 30% increase maybe be due in part to the greater number of organisations submitting data.

Carers Allowance is payable to carers providing more than 35 hours of care per week and who meet certain criteria, including earning less than £139 (net) per week. Given the criteria in place not all carers will receive Carers Allowance, however, using (DWP) data in Stat-Xplore[iv] it is possible to identify the number of recipients by locality.

The number of people in receipt of carers allowance in each locality at six monthly intervals is shown in the table below (due to disclosure control at ward level, the sums do not always add match the total):

Table 4.2: Carers allowance recipients by locality, 2018-2022

  May 18 Nov 18 May 19 Nov 19 May 20 Nov 20 May 21 Nov 21 May 22 Nov 22
North West 1,320 1,342 1,369 1,360 1,378 1,408 1,382 1,369 1,385 1,354
North East 1,265 1,260 1,257 1,269 1,288 1,297 1,277 1,270 1,287 1,276
South East 832 813 841 845 901 939 899 898 895 901
South West 1,030 1,063 1,081 1,033 1,059 1,090 1.090 1,062 1,057 1,069
Total 4,442 4,472 4,552 4,507 4,621 4,727 4,641 4,606 4,638 4,615

Across Edinburgh, the number of people in receipt of Carers Allowance increased by 285 between May 2018 and November 2020, following an upward trend over the period, however the number of recipients has since fallen back slightly. It is not known if the increase reflects a greater number of carers eligible to receive the benefit, or a greater uptake of those eligible to receive the benefit who may have been supported to maximise benefit income. This may also have been affected by an increasing number of people fulfilling the criteria due the COVID-19 lockdowns.

Young Carer Grants, a benefit administered by Social Security Scotland launched on 21 October 2019, provides an annual payment to carers aged 16-18 meeting certain criteria including providing an average of at least 16 hours of care per week. The latest Young Carer Grant: high level statistics[v] publication shows that by the end of between 2019-20 and 2022-23, 525 applications had been received for young carers living in Edinburgh, of which 330 had been authorised. Grants worth £98,931 had been disbursed.

Table 4.3: Young Carer Grants

  2019-20 2020-21 2021-22 2022-23
Applications 65 125 155 180
Processed 50 135 145 155
Authorised 40 90 105 95

Key points:

  • The number of people in receipt of Carers Allowance had been increasing but has plateaued.
  • The number of young carers applying for a Young Carer Grant has been increasing since the benefit launched, however the number authorised has flattened.

Table 4.4 lists the different estimates, and counts, of carers by source; carers can appear in more than one source.

Table 4.4: Estimate of carers in Edinburgh by source

Data source Estimated number of carers
Scottish Health Survey (local authority) 44,764
Health and Care Experience Survey 67,147
Carers Allowance recipients 4,615
Young Carer Grant recipients 95

[i] Scottish Health Survey, Scottish Government, (8 November 2022)

[ii] Health and Care Experience Survey 2020, Public Health Scotland, (10 May 2022)

[iii] Carer’s Census, Scotland, 2021-22, Scottish Government (13 December 2022)

[iv] Statistics at DWP, Department for Work and Pensions

[v] Young Carer Grant: high level statistics to 31 October 2020, (27 September 2022)

There is little information available on particular issues arising in Black and Minority Ethnic (BME) communities in Edinburgh. A MECOPP (Minority Ethnic Carers of People Project) briefing paper from 2017, Informal Caring within Scotland’s Black and Minority Ethnic Communities[i], references a small study from 1996 as the most substantive Scottish document. It should be emphasised the study is 25 years old and the sample size was small.

[i] Informal Caring within Scotland’s Black and Minority Ethnic Communities, MECOPP, , June 2017

In December 2021 the Scottish Government published results of the first collection of the annual Carers Census[i]. The census provides the most recent national data on the impact of caring for those carers known to carers centres and Health and Social Care Partnerships. As many organisations, both Health and Social Care Partnerships and Carer Centres, are still developing systems and processes, the data are incomplete and the publication provides national data only. Due to COVID-19 no census was carried out in 2019/20, however, this was requested during 2021 and the publication covers both 2019/20 and 2020/21. The data are only available at Scotland level so we are unable to show figures for Edinburgh but the results provide an idea of the types of needs unpaid carers face that need to be responded to in each local area. As noted earlier, the second publication of the Carers Census 2022 results were published in December 2022.

The Carers Census shows that 91% of adult carers provide 20 hours or more of care per week.

Table 4.5: Hours spent caring per week, Scotland

Hours caring per week Adult Carers
up to 19 hours 9%
20 – 49 hours 28%
50+ hours 63%

The impact of caring presents itself more broadly with a range of impacts, emotional well-being the most common (68%).

Table 4.6: Impact of caring, Scotland

Impact Adult Carers
Emotional well-being 68%
Life balance 66%
Health 56%
Future plans 54%
Carer feels valued 42%
Finance 36%
Employment 30%
Living environment 30%

Locally VOCAL, Voice of Carers Across Lothian, carry out a survey of carers. The latest survey was carried out in 2021[ii]. Although not directly comparable, it indicates a change from the previous survey in 2017 in a number of areas. For example the age of carers has reduced, in 2017 45% of respondents were aged over 65 compared with 27% in 2021. This is reflected in the economic activity of the respondents between 2017 and 2021 where the proportion in paid employment has increased from 25% to 31% and the proportion retired and in receipt of a pension has fallen from 50% to 33%.

A new question in the survey asks the relationship to the cared for person. As carers can care for more than one person, the type of relationships add up to more than 100%, however, the main groups of child (of any age), spouse/partner and parent are broadly similar at 35%, 32% and 32% respectively. It is noted than 11% of respondents reported caring for a child and a parent.

The impact of caring as reported in this survey is more qualitative than the functional impact as reported in the carers census. For example, 41% of respondents reported more contact with health services about their own health (up from 35% reporting seeing their GP more often in 2017) and in 2021 67% report their physical health and 79% report their mental health has been affected compared with 59% reporting that being a carer made their health worse in 2017.

In terms of the financial impact of caring, 69% of respondents reported that being a carer had a financial impact. Perhaps reflecting the change in demographic noted above or the impact of the pandemic, there have been increases in people reporting they have stopped or reduced employment and lost national insurance or pension contributions.  New questions show that 15% had to borrow money due to their caring role and 7% have had to use a food bank.

Key points include:

  • 91% of carers nationally, identified in the carers census, provided 20 or more hours of care per week.
  • 68% of carers report their emotional wellbeing is affected by their caring role.

[i] Carers Census, Scotland, 2019/20 and 2020/21, Scottish Government (21 December 2021)

[ii] Edinburgh Carer Survey, VOCAL (Voice of Carers Across Lothian), (1 November 2021)

The carers census reports on the different support that has been provided to carers included in census submissions.

Almost 17 in 20 carers received advice and information whereas just over a third (34%) received support via a short break or respite. It should be noted that 8% report as receiving no help or support, however, as these records relate to people known to carers centres or Partnerships it may be that having the opportunity to talk with a worker about their situation was a support in and of itself and no further input was required.

Table 4.7: Support provided for adult carers, Scotland

 Support Carers with support provided
Advice & information 84%
Short breaks or respite 34%
Counselling or emotional support 28%
Practical support (e.g. transport, equipment, adaptions) 17%
Other support 15%
Peer support/group activities 14%
Assistance with benefits, e.g. Carer’s allowance 14%
Training and learning 13%
Emergency planning 8%
No help / support required 8%
Advocacy 7%
Future planning 6%

The HACE survey asks four questions related to the experience of people with caring responsibilities. Two of the questions could be seen as proxies for carers ability to continue in that role. It shows that carers in Edinburgh are no different in their balance between carer and other things in life and how supported they feel to continue caring. It should be noted that respondents to this survey self-identify as carers and therefore may reflect people who have not approached services for support, rather than people who are discontent with the support they are receiving.

Table 4.8: Balance of caring and support for caring

  Edinburgh Scotland
  Positive Neutral Negative Positive Neutral Negative
I have a good balance between caring and other things in my life 64% 20% 16% 63% 20% 17%
I feel supported to continue caring 30% 42% 28% 30% 43% 28%

Key points include:

  • Two thirds (64%) of carers in Edinburgh have a good balance between caring and other things in their lives; 16% do not have this balance.
  • Almost a third (30%) of carers feel supported to continue caring; just over a quarter 28% do not.