Experiences of social care in the health and care experience survey 2015/16: analysis of free-text comments

Chapter 6: Unpaid care

Summary

The comments highlight the importance of support to enable unpaid carers to continue in their caring role. The provision of care and support from formal services can help to reduce the responsibilities placed on unpaid carers. Responses reinforce the need for formal support, including respite, to address the balance between unpaid care and other activities.

Responses from people who were providing or receiving unpaid care were a mixture of positive and negative experiences which focused on the intersection between paid and unpaid care. The quantitative results from the 2015/16 survey show that unpaid carers report lower satisfaction scores compared with those receiving care (Scottish Government, 2016b). Only 41 per cent of carers felt supported to continue in their caring role, 42 per cent felt that local services were well coordinated, and 40 per cent felt that caring did not have a negative impact on their health and wellbeing.

Positive responses focused on services which supported people to continue in their caring role. The provision of formal care services can help to address the needs of people who require support and can also alleviate the pressure placed on informal carers by enabling them to balance caring with other activities. In the quantitative analysis, this was the area carers were most positive about, and 68 per cent of carers felt they had a good balance between caring and other activities (Scottish Government, 2016b). The free-text comments describe how formal support has helped people to cope, with many suggesting they would be unable to continue in their caring role without such provision.

"I received excellent support and help from local services while I was caring for my dying partner at home. During the final six weeks leading to their death, I was also supported by overnight services - without the help of these dedicated nurses I could not have cared for them until the end."

"I am answering this on behalf of my relative and I certainly could not cope without help given to [their] everyday care in the morning and evening and in emergencies, with community care and community alarm! These people deserve a medal!"

"As a carer, the help I get for my father by having someone coming to the house once a week to shower and shave him is a god send."

"The help I received is on behalf of my husband. The help has allowed me to continue in my full time employment and aided a better quality of life."

Nevertheless, participants also described increasing responsibility on families to provide care and support for their loved ones. The issues discussed previously in relation to access, coordination and management contribute towards this. This can impact upon carers' health and wellbeing, and comments highlighted the importance of respite.

"My [age removed] [family member removed] is caring single-handedly for my relative with advance dementia and it has proved impossible to get any home-help with daily personal care… There are not enough support services to go round and my relative has in the past ended up in hospital because the support he needed was not available at home. The NHS is inefficient and does not offer holistic personalised care and is not joined up with other care services."

"Having suffered a stroke in [date removed], I am now cared for by my family. As far as providing physical aids, speech therapy and physiotherapy, the service has been first class. However their request for some respite from their caring for me, has had a very different response. After an initial enquiry, they are still awaiting news of what respite care they are entitled to. So after praising the social work department. I would exclude the unit [name removed] from that praise."

"I care for a family member, every time we ask for any help or support from the council we (myself and the other two 24hr carers) are pushed to the side. We have failed to receive any of our entitled respite this year! This causes stress throughout family."

With effect from April 2018, the Carers (Scotland) Act 2016 will place a duty on local authorities in Scotland to provide support for carers.