Social Security Experience Panels - Scottish Carer's Assistance: main report

Annex C: Experiences of paid employment and caring

Survey respondents and interview participants were asked about their experiences and views on paid employment to help the Scottish Government to consider how to support carers who wish to work or stay in work outside their caring role.

Respondents were asked if they are currently in paid employment. Almost three quarters (74 per cent) said no. 22 per cent said yes they were employees and 4 per cent said yes, they were self-employed. 1 per cent prefer not to say (see Table 25).

* Figures may not add to 100% due to rounding

From those respondents who answered yes to be currently in paid employment, over half (53 per cent) said they work on a part-time basis and over a quarter (26 percent) said they work full-time. 20 per cent said their work hours vary on weekly basis and 2 percent said they prefer not to say (see Table 26).

* Figures may not add to 100% due to rounding

Benefits of carers having employment

Respondents and participants who were in paid employment were asked what were the benefits of having a paid job and being a carer.

Several survey respondents said having a paid job helps their mental health and their wellbeing, and it also enhances their lifestyle and self-esteem. Additionally, they mentioned that it reduces isolation and loneliness, allowing them to socialise and have other activities outside their caring role.

"I love my job. I only recently started paid employment after caring at home full-time for 12 years. Having a job allows me to do something I enjoy, meet people, have a social life. Feel like me again. It helps my mental health." (survey respondent)

"Being able to use my qualifications and skills to help others, feel useful, earn a small wage to contribute to the family, have some pride in myself, have different things to talk about, be a role model to my kids, great mental health benefits. Not having to pay for childcare as my work is flexible, still being able to fulfil my role as a parent and carer for my child. It's a good balance being able to do both, something I've not been in a position to do for 9 years, until fairly recently." (survey respondent)

"Dignity, self-respect. A life outside of caring is better for mental health. Build ability to have a life after caring stops." (survey respondent)

Some survey respondents and interview participants emphasised that the benefits of having a paid job is to have financial security for their household income.

"It tops up your income. I am a [profession]. I can only work one day as I am almost at my income limit. I can earn that in one day when it takes 35 hours of caring to earn a similar amount in a week. It's really a no brainer as it gives a little extra income for treats, etc." (survey respondent)

"I have to have a paid job because I can't survive purely on benefits. I was unemployed for 8 years and my mental health was really poor. I was just the boys' mum. Having colleagues and relationships with other adults is important […] I found myself getting really demotivated when I wasn't working." (interview participant)

"Carer's Allowance and disability benefits are a fixed amount; and not a very big amount in today's financial climate. Working part-time helps a little with extra money, and also helps with self-esteem and mental health in general." (Survey respondent)

Challenges for carers who are in employment

Survey respondents and interview participants who were in paid employment were also asked what were the challenges of having a paid job and being a carer. Many noted that it was very challenging to juggle both activities. They stated that being able to get flexible jobs with cooperative and understanding employers which consider the cared for person's needs was very difficult. In particular, because of the changing nature of the caring needs for the cared for person and also due to several hospital appointments. A few mentioned that sometimes those changing caring needs and emergencies can happen at very short notice.

"It can be challenging to meet the demands of caring for someone with working, e.g. not all employers offer flexible hours, carer's leave or have insight into the challenges of caring for a person and their often changing care needs. It can also be a challenge to secure paid employment that fits around a care role at all." (survey respondent)

"Finding work flexible enough to be available for the person you care for when needed; ensuring the person you care for is ok while you are at work. Hardest part is on 'good days' when you could work an extra day for some much needed extra earnings being unable to do so as it would lose you your Carer's Allowance and make working that day pointless, this makes you feel like a failure as a provider and is extremely frustrating." (survey respondent)

"Probably trying to fit appointments in around my work life. Going to meetings, going to care reviews […] That's the biggest challenges, trying to juggle everything. And make sure you still doing your job to the standard your employer expects you to, but also you are also doing the best you can. 'Cos there's nothing worse than feeling guilt, that you have prioritised a paid job over a family member. But I think it's very difficult." (interview participant)

Some survey respondents and interview participants mentioned further challenges such as the lack of work/life balance. They highlighted suffering from exhaustion, stress and tiredness. They were always lacking time, including time for their personal activities. A few mentioned that this situation could lead them to have poor health.

"Financial, time, balancing work with caring, fitting one in with the other. And a personal toll on the carer's health and finances." (survey respondent)

"It is unbelievably stressful. I'm constantly having to change work arrangements for care issues and I never have enough hours to do everything. I never get any time for myself between work and caring." (survey respondent)

"Sheer exhaustion, taking time off for appointments, managing to focus on work when your loved-one is unwell, knowing every second you spend away from them is a waste of time you could have with them, guilt, stress, anxiety and depression. This list is not exhaustive." (survey respondent)

A handful or survey respondents mentioned the following as challenges of having a paid job and being a carer: financial insecurity, a limited career progression and the issue that self-employed carers have with yearly earnings.

"Career progression is limited, often stay on minimum/living wage, unable to get a mortgage or have any financial security in the longer term." (survey respondent)

"Trying to juggle all my responsibilities and trying to deal with each crisis as it arises always putting my own needs and health to the back of the queue. Also self-employed don't know profit/loss until end of tax year so can't claim as don't know weekly income during the year as its yearly to claim then it's too late!!" (survey respondent)

Views of those not in employment

Survey respondents who mentioned they were not currently in paid employed were asked if they would like to participate in paid employment if they could work outside their caring role (see Table 27). Half of respondents said yes, a third said no and a just over a sixth (17 per cent) preferred not to say if they would like to participate in paid employment.

Some survey respondents mentioned that if they could, they would like to participate in paid employment because it would improve their mental health, wellbeing, self-esteem and it would reduce their feelings of isolation.

"Being a carer is an isolating life, with a low income and often time limited. Opportunities for work allow for breadth in a carer's life, time outside their caring environment and the social aspect this provides. It also allows the carer to keep a continuous work history which will be necessary to compete with others in the job market should their caring duties end or change." (Survey respondent)

"Working would mean I would have less than my benefits, so financially worse off is not an option even though the personal benefits are huge, less isolation, more self-esteem, a bit of respite and mental health benefits." (Survey respondent)

Several survey respondents and interview participants mentioned that their caring responsibilities do not allow them to have any time or energy to carry out other work beyond caring. They highlighted their work is 24/7 due to the nature of the health conditions of the cared for person. A few also noted their own health conditions, disabilities or their caring situation for multiple people as challenges to take on paid employment.

"I have to care 24/7 for two disabled children. There are no hours left to do a job outside the home." (survey respondent)

"As I have a disability myself as well as caring for my child with additional support needs I have no energy to be able to work." (survey respondent)

"I have always been a worker since the age of 15. I enjoyed the feeling of working and giving to society. As things have worked out though it is impossible for me to work. My caring role to my disabled children takes precedence and has also gone towards some of my own mobility issues. As much as the will is there and I'd love to work again, even if i had time from my caring role I'm not as able to be a reliable employee as I once was." (survey respondent)

A few survey respondents and interview participants mentioned that it was difficult to find paid employment flexible enough that can go in hand with their caring role. A small number of respondents and participants highlighted that carers need support to balance employment and caring responsibilities.

"It's often the time off work you need for sudden illness or because the child has been sent home from school [for who knows how long], the medical appointments, etc., etc. It's not just about getting a job; it's about being able to keep the job." (survey respondent)

"I worked for my local authority until caring responsibilities made it untenable. If carers can continue to work and care, there should be additional supports in place to allow them to do so. It's very stressful doing both long-term and can impact on the carer's own health so addition support (time out to care, hospital appointments, respite, counselling etc.) are key to allow this to happen." (survey respondent)

"The challenges are endless. I had a job recently and it was a 2.5 day a week job, I had hoped to work the hours in the mornings, but they wanted me to go in for 2 full days and a half day, on the half day they wanted me to have an unpaid lunch hour, meaning I was in for most of the day as they wanted me to stay until late into the afternoon. Every minute of the hours I was in office, I was missing out on time where I could be making [cared for person's] food, so my mental wellbeing was suffering the whole time. There's also hospital appointments which come out of nowhere, I sometimes get 3 or 4 letters a day about hospital appointments. Whichever person you care for, there's always additional difficult and unexpected situations which arise. It's really difficult, as the caring is manageable and predictable, but it's the unpredictable stuff that you can't manage or build in. He's a tough little boy, but it's just constant. I really want to work, especially because it's so difficult to survive on benefits." (interview participant)

A small numbers of survey respondents noted the possibility of becoming self-employed, but they were concerned about the potential issues that can arise about earning thresholds. A few also mentioned that taking on paid employment would not provide them with more financial security.

"Because of where I live [very rural], I am limited as to what I can apply for anyway because of transport - I don't drive, but equally there have been jobs advertised that I know would take me over the threshold for losing CA, when also factoring in UC and bus fares. I end up significantly worse off, all for £1 or £2. There's no incentive there." (survey respondent)

"I occasional have been offered the chance to do short-term contracts for a day here and there, but as it would take me over the limit for earnings I have declined as the loss of the allowance would end up with me being worse off." (survey respondent)

Many respondents emphasised that they cannot engage in paid employment because they are retired, disabled or have long-term conditions.

"I cannot work now as I have some physical disabilities." (survey respondent)

"Approaching my 65th birthday hence not looking for employment! Looking forward to my state pension next year, but I will lose my Carer's Allowance, yet I will continue to be a carer which is a conundrum."(survey respondent)

"I'm disabled and a carer for my disabled husband and 3 daughters still at home. 1 of which is disabled and another has extra needs, as they do care for me and until recently we all including my disabled brother in-law, all cared for my late father in-law. Sometimes, it's those of us who are struggling hardest with our own health that are left to pick up the pieces at the cost of our own health. I don't know what the answer is, but hopefully if it can be made easier and more affordable for people who may like to help more, especially those who otherwise now say they can't because of work." (survey respondent)