Creating a healthier Scotland - What matters to you

Social Care and Caring

Compared with health care, there is less awareness of the full range of social care services and how they benefit different people. More people are familiar with the role of social care in helping older people, or those with long-term conditions, to remain at home or in the community. Social care is also essential to enable some people, such as those with disabilities, to live full and independent lives. We heard that more should be done to remove the stigma of social care.

Many of you shared your experiences of care, and caring for others. We heard a lot from unpaid carers about recognising their role and including them as an equal and expert partner in their loved one's care journey. You highlighted the impact that caring can have on the carers' health and wellbeing and the importance of support and respite.

You want more easily accessible information about services and entitlements. Some of you raised the issue of the cost of social care compared with health care. There were a range of views on self-directed support, health checks for carers and the carers' register.

You spoke about social care during the Conversation but it was not raised as often as healthy living or health care issues. That is likely to be because, while everyone encounters health care, not everyone has had direct experience of social care, or are familiar with the wide range of ways it supports people. This was highlighted by the Young Scot Health Investigation Team who have been exploring this issue with other young people.

Social care is essential to support some individuals with physical or learning disabilities to live full and independent lives. It also helps older people with long-term conditions live at home or in a homely environment. We heard how it enables people to have a choice about how and where they live their lives. It can help alleviate pressure on the health system but it also has a distinct role from that; social care supports people to live within the community.

"Some disabled people may depend on a range of social care support to live their lives to the full but have few if any health care needs significantly different to those of the rest of the population. Meanwhile, very many people - pretty much everybody - will make ongoing use of some form of health care service throughout their lives, although the majority may well have no need of social care services at any one time."
Inclusion Scotland response

"Older people should have the choice of how to live, whether that be in their own homes with help, or in a care facility."
Scottish Health Council event, Forth Valley

"Without social care, I couldn't get out of bed in the morning, go to work, see friends, play my part in our society, and oh yeah…7 other people would be out of a job. Put quite simply, I wouldn't be healthy, I wouldn't have fair and equal access to society and I wouldn't enjoy my human rights on an equal basis to non-disabled people."
'Common Ground' blog by NHS Health Scotland

"Given the choice, most of us would prefer the comfort of our own home and the familiarity of our own community to a hospital ward or a care home. Enabling people to live independently benefits not just the individual - it helps ease the pressures on the NHS."
'Care at home and in my community' - blog by British Red Cross

"Social Care is a valuable service which helps to support people to stay healthy and in their homes for longer. It also helps alleviate unscheduled admissions and delayed discharge."
COSLA response

We heard about the cost of social care and issues with access. You would like greater flexibility and choice around support packages and services, and there are some issues of quality with many of you indicating a preference for vouchers so you could choose your own products. Some people found the system of Self-directed Support confusing and would like clearer information and guidance.

"There should be better support for carers of people under the age of 65 - free personal care is not available to this age group. It's a struggle to earn enough to properly look after yourself and your relative."
Scottish Health Council event, Grampian

"Participants unanimously agreed that Self Directed Support is a positive measure, giving greater choice and control over their support arrangements, however budgets are continually being squeezed and require to be more realistic."
Glasgow Centre for Inclusive Living event

"People should be entitled to high quality, accessible information and advice concerning health and social care irrespective of their eligibility for services. This is critical to people being able to assume greater responsibility for their own health and wellbeing, including in relation to self-directed support."
Glasgow Disability Alliance consultation response

"...of great concern to disabled people is the extent to which access to social care services are becoming ever more limited to those with the most desperate needs…"
Inclusion Scotland response

We heard a lot about the issues affecting unpaid carers. Many of you shared your thoughts on the valuable role played by unpaid carers across society. (Issues about care workers are included in relation to the workforce in the section on Priorities and Pressures). Recognition and support for carers was inconsistent, with some of you reporting positive experiences while others remarked on a lack of awareness amongst the professionals they encountered. You suggested ways of improving recognition and support including professional training, the carers' register and centres, peer support and a more person-centred approach within GP surgeries.

"Most respite care that is currently on offer takes place within care homes and is aimed at older older people. Many younger older people, or younger people with health conditions who could benefit from respite care do not take it up as the options are inappropriate."
Befriending Network event, Inverness

"The label of 'carer' is sometimes an obstacle."
Patients' session, Annual review, Grampian

"Carer centre staff saved my life."
Coalition of Carers in Scotland, national event

"Several carers reported that the carer health check didn't ask about their own health at all, only about the person they cared for. This is a training issue."
Coalition of Carers in Scotland event, Hawick

"Finding time to attend routine medical and dental appointments when you are caring for someone can be difficult."
'Caring for our carers' - blog by Carers Scotland

"Carers don't always identify themselves, even when they need support."
Alliance event, Stirling

"Being involved in carers' groups can help people enjoy some time outside the caring role."
Coalition of Carers in Scotland, national event

"Many women commented on the lack of recognition of the pressure, anxiety and stress suffered by carers."
Scottish Women's Convention consultation response

"My GP knows I'm a carer as I am on the register, and is very helpful and sympathetic."
Polmont Carers' group event

People shared their experiences of juggling caring roles with other commitments. We heard about the impact of caring on the carer, particularly in relation to their own health and wellbeing, with some finding it difficult to attend their own routine health appointments.

Respite was an important area, with many people telling us how they strongly valued respite and short break opportunities. You shared your good experiences of respite, and also told us about areas where improvements could be made, for example, consistency in quality, greater availability, more flexible options, such as evenings and weekends, and age-appropriate facilities. It was also reported that people looking after their relatives don't necessarily see themselves as carers and this can prevent them from getting the support they need.

Access to information was again raised in relation to carers, specifically to sustain the caring role, and to find out about entitlements. You suggested that there should be one place where carers could access the support they require, such as a dedicated website or phone number.

"I like to think I'm a fairly savvy person but I don't yet know what social care services my parents and in-laws are entitled to. It would be great to have one website that provided the national position and pages where each local authority outlined their social care services and contacts. Social care services or GPs could provide this information too."
Comment on Healthier Scotland blog page

We also heard that there is stigma attached to social care and a need for better promotion and awareness of what social care is and how it helps a wide range of people. Some of you told us that accessing social care services can sometimes be viewed in a negative way, as it can be associated with difficult times.

"People think social care is for problem families, although the biggest caseload is with older adults."
Alliance event, Clackmannanshire

"Stigma can be a barrier to people accessing services they need."
Alliance event, Elgin

DID YOU KNOW?

• It is estimated that there around 759,000 adult carers (aged 16 or over) and 29,000 young carers in Scotland.
• The Carers (Scotland) Act 2016 will extend the rights of carers and young carers. The Act will make a meaningful difference to unpaid carers and will contribute towards the improvement of their health and wellbeing, ensuring that they can continue to care, if they so wish, and to have a life alongside caring.
• What is Self-directed Support? It's a new approach which gives adults, children and carers who require social care support more choice and control over how their support is delivered. This makes sure people are empowered to be equal partners in their care and support decisions and can access flexible support that helps them to live more independently. www.selfdirectedsupportscotland.org.uk
• If you look after someone, need care yourself or are planning for your future needs, Care Information Scotland has a range of information and advice that can help. www.careinfoscotland.scot