Chapter 4 Unpaid Carers
"We are preventing a tsunami of need from overwhelming public services. That comes with costs to us, to our families.”
Caring is normal. 60% of us will be carers at some point in our lives, supporting family members, friends or neighbours who are affected by disability, physical or mental ill-health or who may just need some support. A carer does not need to be living with the person they care for and can be any age: very young, very old and anything in between. Around 4% of the population aged 4-18, i.e. 29,000 children and young people, are carers. Around 15% of the adult population, i.e. 661,000 people aged over 18, are carers.
The Scotland's Carers research report estimates that the number of carers in Scotland fluctuates, with about 700,000 people currently providing unpaid care. The value of unpaid care in Scotland is estimated at over £36 billion a year. For comparison, in 2019 the NHS Scotland budget was £13.4 billion.
Unpaid carers in Scotland represent a larger workforce than the paid health and social care support workforces combined. The people we spoke to acknowledged that Scotland recognises the contribution of unpaid carers in a number of ways.
Nevertheless, a survey carried out by the Coalition of Carers in Scotland in 2019 reported that only 16% of carers knew what the Carers (Scotland) Act 2016 was and the rights it provides; 33% had heard of it but didn't know what it was about; 51% had never heard of it. We heard from many carers during the review that much needs to be done to better support and sustain carers in their caring roles.
We heard that unpaid carers are often best placed to understand the needs, rights and preferences of the person they support. It is also important that we record what we heard about the toll unpaid care, however willingly given, can have on its giver. Deciding to provide care should be a positive decision on the part of the giver. When someone is being assessed for social care support, the role of the carer should be determined by them and not assumed by the assessor. Carers and carers organisations told us about personal sacrifices made by thousands of carers, and the impact caring without decent breaks can have on their physical, psychological and mental wellbeing.
Unpaid carers are integral to good care, so it is important that we recognise the value they bring and ensure they are included as equal partners in the team of people who together plan and provide support and care. The phrase 'nothing about me without me' should apply equally to people who use services and their unpaid carers.
"Carers feel invisible, that they are just left to “get on with it” and that no one cares or appreciates them…. now is the time to act and make carers count, treated as equal partners in care with professionals.”
Over half of the respondents to the Coalition of Carers survey were not aware of any of their rights, including their right to a carer's assessment, and advised that pre March 2020 they had still not had an assessment. The subsequent introduction of Covid-19 emergency legislation has meant that many Local Authorities have suspended carer's assessments. In the same timeframe, a recent survey by Carers Scotland showed that most respondents have taken on more care since March, and that 77% are exhausted and worn out.
Carers need more support. Many asked for the same things that people who use social care services and supports asked for as discussed in Chapter 3: greater consistency between Local Authority areas in terms of provision; clarity on the application of eligibility criteria; better involvement in, and transparency about, decisions regarding support; better data on support provided to carers and unmet need.
"Loneliness is such an integral part of caring. I no longer have a husband. I care for him.”
Many carers give up work to care, and it was also suggested that consideration of the carer's access to employment should be a routine part of assessment for support. Carers should not be prevented from working, or indeed studying or having social connections of their own, because of their caring role. Yet we heard that many people are prevented from working because of their caring responsibilities, and about the impact this can have on household income that is not addressed by the Carer's Allowance. We reflect further on this in Chapter 11 on finance. Some carers told us about their need for support to get back into employment and education – and indeed into social activities – after a period of caring, which can be difficult and daunting.
Access to respite came up repeatedly as a priority. Carers need to be able to take a break and respite should be viewed as integral to carer support. However, a greater range and more imaginative options should be developed for both the supported person and unpaid carers to better meet needs and preferences.
When carers are unable to access their rights, including their right through the Carers Act to have their eligible needs met, they are unable to challenge effectively. We heard that the complaints system is inadequate and legal recourse is not a viable option for most people. As well as an improved complaints process, and greater transparency about decision making processes, we were frequently told that more, easily accessible information is needed for carers.
In appropriate circumstances, there is also a need for the carer's assessment to be undertaken alongside that of the supported person, to ensure that the support provided helps to support their relationship, is jointly agreed and helps to deliver choice and control, especially in family relationships.
In Scotland we are fortunate to have some really great pieces of legislation such as the Carers Act and the Social Care (Self-Directed Support) Act. This has given unpaid carers in Scotland some key rights to access support, as well as greater choice and control over how care and support for themselves and the people that they are caring for should be met. However, many of these great policy intentions are very rarely implemented in the way that they were intended or in the ‘spirit of the Act’. There is also very little accountability in the current system and this inevitably results in unpaid carers and the people that they care for, feeling powerless about decisions made about their lives, and less likely to seek support for themselves or their families. It feels pointless introducing new legislation or policies, if we are going to continually fail to implement them.
The current social care system also prides itself on being person-centred. However, once again, we see very little evidence of this in practice. A person-centred approach would acknowledge that unpaid carers are not a homogenous group; we come from all ages, from different cultural and ethnic backgrounds, and with very different caring experiences. Each of us have our own needs, desires, and aspirations, and these cannot be addressed by a one-size-fits-all service.
When we think about what the future of social care should look like, we need to begin by viewing social care as a right, and not as a service or industry. Social care shouldn’t be limited to only those who can afford it or to those who are in crisis; it should be available to anyone who has support needs to be able to reach their full potential and to ultimately have the same life opportunities as anyone else.
"There is also very little accountability in the current system and this inevitably results in unpaid carers and the people that they care for, feeling powerless.”
Our recommendations for creating a National Care Service provide a mechanism for better representation of carers in local planning, commissioning and procurement of services. To ensure the contribution of carers is properly recognised and supported, we recommend:
11. Carers need better, more consistent support to carry out their caring role well and to take a break from caring with regular access to quality respite provision. Carers should be given a right to respite with an amendment to the Carers Act as required, and a range of options for respite and short breaks should be developed.
12. A new National Care Service should prioritise improved information and advice for carers, and an improved complaints process. It should take a human rights based approach to the support of carers.
13. Local assessment of carers' needs must, in common with assessment of the needs of people using social care support services and supports, better involve the person themselves in planning support.
14. Carers must be represented as full partners on the Integration Joint Boards and on the Board of the National Care Service.