VOCAL – Voice of Carers Across Lothian, is one of Scotland’s largest regional carer support agencies and provides support to carers across Edinburgh and Midlothian. Since 2011, VOCAL has undertaken a survey to understand the experiences of unpaid carers, and receive feedback on the services and support it provides. The 2021 survey was undertaken by Scotinform on behalf of VOCAL and its partner organisations. Over 1,200 unpaid carers took part, sharing their views and experiences of caring in Edinburgh and Midlothian. The results of the survey show the profile of carers and their views and experiences across the three themes:

  • health and wellbeing
  • money and work
  • taking a break

Key findings

Profile of carers

  • 4 in 5 respondents were female.
  • Nearly two thirds have been caring for more than five years.
  • A fifth have been caring for more than 20 years.
  • Nearly half of respondents provide more than 50 hours of care per week.
  • A quarter are caring for more than one person.
  • 30% of respondents consider themselves to have a disability.
  • The most common caring relationships were caring for a child, caring for a spouse/partner or caring for a parent.

Health and wellbeing

  • 66% agreed with the statement ‘being a carer has affected my physical health’. This compares with 57% in 2017 who agreed with the statement “being a carer has made my health worse.”
  • 79% agreed with the statement ‘being a carer has affected my mental health’, with 39% agreeing strongly. This compares with 57% in 2017 who agreed with the statement “being a carer has made my health worse.”
  • 78% agreed that ‘being a carer affects the quality of my sleep’.
  • 53% feel isolated from family and friends.
  • 48% did not feel that they had a good balance between caring and other things in their life.

Money and work

  • 72% disagreed with the statement ‘being a carer has improved my finances’.
  • 33% of respondents have stopped working because of caring responsibilities
  • 29% have reduced or given up hours at work in order to be a carer.
  • 27% have used their own money and savings to pay for care.
  • 17% have borrowed money because of their caring role.
  • 8% have had to use a foodbank.
  • 44% worry about paying for care and/or care home fees.

Taking a break

  • Over half of carers find taking a break hard, citing feelings of stress, guilt and worry.
  • 46% say that they find it difficult to relax whilst they are not caring – an increase from 32% in 2017.
  • 39% say that there is nobody else to provide care, and 29% that the person they care for won’t accept care from others.
  • 28% agree that it is too expensive to take a break from caring.
  • 27% agree that planning a break is so stressful that it’s not worth it.
  • A quarter of respondents say that there are no services available to provide care whilst they take a break, and 24% that they don’t have time to take a break.
  • Overall, 87% of respondents say that at least one of these challenges applies to them. As in 2017, those caring for those aged 25 and under are more likely to have experienced at least one of these barriers.

Support

  • 47% of respondents felt that they had someone to rely on for support. This is slightly lower than the figure of 54% reported in 2017.
  • Just over half of the sample agree that they ‘Have a say in the services provided for the person(s) I look after’.
  • 30% agree with the statement ‘Local services are well coordinated for the person(s) I look after’, with 38% disagreeing.
  • 29% of respondents feel supported to continue caring, with 37% disagreeing.

The voice of carers

Carers were given the opportunity to share their views and experiences throughout the survey. The following quotes are from carers.

Health and wellbeing

  • “Completely exhausted and running on empty. I never feel rested, just depleted. I suffer with horrendous migraines and the doctors have told me to reduce the stress levels in my life, but how is this possible?.”
  • “While caring for my father I neglected going for a smear test and was diagnosed with cancer at an advanced stage – now I am caring for my mother I try to pay more attention to my own needs.”
  • “I have become so unwell I myself have had to be cared for.”
  • “I am on 24 hour caring role and have not slept in my own bed for over 4 weeks…I feel I don’t have time for myself or anything else.”

Money and work

  • “I have no money. That’s the size of it. I have to live hand to mouth, which in turn means, right now I have no life other than caring. Can’t afford to do anything or go anywhere. No spare cash to save for, well, anything really. I’m lucky I have good friends, but I quite literally can’t afford to do anything with them.”
  • “Caring and working reduced days, half days only-has made immense detrimental impact on my pension contributions. Aged 63 and 4 months, there is [very] little still in the pension pot and I have to force myself to work now as much as possible and close my ears to others talk of holidays and trips away, days out, social life.”
  • “I try to save as I am very worried about paying for care when my husband gets beyond my capacity as a carer.”

Taking a break

  • “Being able to do what I want to do for a short while without worrying.”
  • “Time to myself, knowing someone is with him and he is safe.”
  • “Being somewhere peaceful and quiet where I could just sit still and not have to think for a bit!

Full reports

You can download the full survey reports using the following links:

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