Caring Together: The Carers Strategy for Scotland 2010 - 2015

2. INTRODUCTION

Terminology

2.1 A range of terms is used to describe a person who cares for another including: 'unpaid carer,' 'carer,' 'family carer' and 'informal carer.' All partners involved in the development of this strategy prefer to use the term 'unpaid carer' or 'carer.' In this strategy we abbreviate 'unpaid carer' to 'carer,' as do many organisations and carers themselves. It is important that carers are not confused with paid workers, who are sometimes incorrectly called carers too: paid workers are care workers.

2.2 Equally, carers are not volunteers. There may well be volunteers supporting the cared-for person and/or the carer, but they are not the carer.

What carers do

2.3 Carers provide care to family members, other relatives, partners, friends and neighbours of any age affected by physical or mental illness (often long-term), disability, frailty or substance misuse. Sometimes the cared-for person will have more than one condition. Some carers care intensively or are life-long carers. Others care for shorter periods. The carer does not need to be living with the cared-for person to be a carer. Anybody can become a carer at any time, sometimes for more than one person. Carers are now, and will remain, fundamental to strong families and partnerships and to resilient and cohesive communities. The lives of carers and the cared-for are closely intertwined, but they are not the same.

Who this strategy is for

2.4 This strategy will be of interest to those who can improve the lives of carers, in partnership with carers, and who can influence the support provided to carers. It is for decision-makers, managers and practitioners, especially in local authorities, Health Boards, the NHS, Community Planning Partnerships, Community Health Partnerships and in all statutory agencies involved in supporting carers.

2.5 The strategy will interest the National and Local Carer Organisations, condition-specific organisations and others in the Third Sector.

2.6 Those who support mainly young carers will be interested in Caring Together. Although there are important distinctions to be drawn between young carers and carers, there are similarities in the caring experiences. There are also important transition issues, especially with regard to support for older young carers aged over 18.

2.7 The strategy will also be of interest to unpaid carers in Scotland. We do not need to change carers' hearts and minds because they are acutely aware of what caring means. However, we do need to change how services and support are planned and delivered and take forward action which will benefit carers now and in the future. This strategy, together with other policies, will seek to achieve this.

"I am actually quite proud to be a carer. It's not something I would have chosen to do but my philosophy has always been, if you are going to do something, do it well."

Paul, who is a carer for his wife with MS and for his daughter with cerebral palsy.

Vision into Action

2.8 To advance this strategy and to build on and improve support to carers, it is necessary to articulate a clear vision of the future for carers.

2.9 Many carers say that it is a privilege to care for a loved-one and that caring brings rewards and a great deal of satisfaction. However, being a carer means that a loved-one, friend or neighbour is ill or frail or has a disability or a substance misuse problem. This can have a significant impact on carers' lives. Sometimes carers look after family members and others in very difficult and challenging circumstances, and because they feel obliged rather than because it is what they want to do. Statutory and Third Sector agencies providing services to the cared-for person should never assume that people want or choose to be carers and should also not make assumptions about the time commitment people have for caring.

2.10 Carers, whatever their circumstances, should enjoy the same opportunities in life as other people without caring responsibilities and should be able to achieve their full potential as citizens.

2.11 Our shared vision is a society in which:

• Carers are recognised and valued as equal partners in care.
• Carers are supported and empowered to manage their caring responsibilities with confidence and in good health and to have a life of their own outside of caring.
• Carers are fully engaged as participants in the planning and development of their own personalised, high-quality, flexible support and are not shoe-horned into unsuitable support. The same principle applies to carers' involvement in the services provided to the people they care for.
• Carers are not disadvantaged, or discriminated against, by virtue of being a carer.

2.12 The vision is underpinned by the mutual health and social care approach. In its broadest sense this means an inclusive Scottish society in which carers are reaffirmed as partners and are not passive recipients of health, care and other support services. The knowledge and skills of carers need to be harnessed to make decisions about the shape and structure of services.

Outcomes

2.13 This strategy will seek to achieve and sustain a number of key outcomes. Carers will:

• Have improved emotional and physical well-being.
• Have increased confidence in managing the caring role.
• Have the ability to combine caring responsibilities with work, social, leisure and learning opportunities and retain a life outside of caring.
• Not experience disadvantage or discrimination, including financial hardship, as a result of caring.
• Be involved in planning and shaping the services required for the service user and the support for themselves.

2.14 The particular needs of certain groups of carers, for example, carers who are older, Black and Minority Ethnic ( BME) or Lesbian, Gay, Bisexual and Transgender ( LGBT), and carers with disabilities, will be recognised and supported.

2.15 Good outcomes for carers are dependent on a number of other factors including, crucially, the provision of good quality services for the person they are caring for.

2.16 The carer outcomes above are directly linked to the Government's National Outcomes, in particular:

• We live longer, healthier lives.
• We realise our full economic potential and more and better employment opportunities for our people.
• We have tackled the significant inequalities in Scottish society.
• Our public services are high quality, continually improving, efficient and responsive to local people's needs.

2.17 Key drivers for change include tackling health inequalities, improving people's mental health, maximising household income and promoting employment and lifelong learning opportunities.

Key role of carers: now

2.18 Carers play a crucial role in the delivery of health and social care provision in Scotland. The identified 657,300 ¹ carers in Scotland - 1 in 8 of the population - are an essential part of the workforce, in its broadest sense, contributing savings to health and social care services in Scotland of an estimated £7.68 billion ² every year.

"We are a good thing, a fundamental building block of society, and through our efforts we save the public purse billions of pounds."

Paul, who also provided the first quote.

2.19 Carers, as equal partners in the delivery of care, enable people with illnesses or disabilities to remain at home and in their own communities safely, independently and with dignity. Carers can, for example, prevent avoidable hospital admissions and contribute to people's overall health and well-being.

Key role of carers: future

2.20 Carers' role and contribution will be critical in the future due to demographic and social changes:

• Scotland's 65+ population is projected to rise by 21% between 2006 and 2016 and by 62% by 2031; and
• For the 85+ age group, a 38% rise is projected by 2016 and by 2031 the increase is a projected 144%.

2.21 By 2031 there will be larger numbers of very old people and a proportionately smaller, younger working and tax-paying population. This is a success story in terms of health and well-being, but it carries huge implications for the future of care in Scotland. There will be an additional 25% demand for health and social care services by 2031.

2.22 There will be more people living alone - an estimated 400,000 by 2031. More older people will also be living in remote and rural areas.

2.23 Older people provide far more care than they receive and are a major strength and resource, contributing much to society. With the ageing population, the number of carers is expected to grow to an estimated 1 million ³ by 2037. Three out of five people in Scotland will become carers at some point in their lives. Some older carers may require more support in their own right. Society as a whole will become even more dependent on carers' vital contribution to health and social care delivery. Carers are at the heart of the solution.

2.24 Shifting the balance of care from residential and institutional settings to care at home and more people being cared for at home for longer has implications for carers. Carers will play an increasingly important role in the support, care and treatment of people with long-term and/or multiple conditions, disabilities, illnesses, including dementia, and alcohol and drug dependency. However, this greater role must not place additional burdens on carers or prevent them from working, learning or having a life outside of caring.

2.25 The age structure of the established BME communities is markedly different to the white population, with a much younger age profile. However, this will change within the next 10 years as the number of BME older people increases. This shift in the age profile presents an opportunity to provide suitably tailored and proactive support to BME carers.

2.26 There are other changes, for example, 'delayed motherhood' where an increase in births to women aged 40 and over might mean more younger people caring for elderly parents in future years.

2.27 There are also more children with complex and exceptional needs being cared for at home by parent carers. This is due, in part, to population increases but also to medical advances and to increased diagnosis and reporting. In Scotland there are approximately 70,000 disabled children under the age of 16. ⁴ For the first time, there is a generation of people with learning disabilities and complex needs who are outliving their parents.

2.28 There is a relatively new migrant population, including asylum seekers. Updated figures on the new migrant population will be provided in the 2011 Census. Many carers who have recently settled in Scotland do not generally access support for their caring role. Identifying these carers and providing support is important.

The case for action

2.29 Over the last few years, much has been achieved in taking forward the carers' agenda at a policy level both nationally and locally. There has also been real progress in providing practical support to carers. However, policy developments have not always resulted in real improvements in carer support, leading - sometimes - to a breakdown in trust between carers and decision-makers and service planners. This strategy is therefore being published with a high expectation of change.

Much more needs to be done to achieve practical support on a consistent and uniform basis.

2.30 Providing support to carers makes economic sense by saving resources in the longer term. With appropriate and timely support carers are able to care for longer, and enjoy better health and improved well-being. Carers do not usually 'down tools,' but unsupported they can experience real hardship financially, physically and emotionally. It is much more likely that a cared-for person will be admitted to hospital and the carer's own health deteriorate if the carer is unsupported. Carers can easily reach crisis point without appropriate and timely intervention. Such interventions can:

• Maintain carers' capacity, reducing the need for paid service delivery to the cared-for person; and
• Help keep carers healthy, reducing their own need for support from the health and the social care system.

2.31 Local partnerships between health and social care, with carer involvement, can drive change at local level. Some changes required could be achieved by improvements to existing services and supports, rather than requiring the development of new interventions. For instance, well-planned hospital discharge can result in efficiency savings.

2.32 If hospital discharge is well-planned and the right services put in place then there is a much greater likelihood of the cared-for person remaining at home with carer support. This means identifying the carer at an early stage when the person is admitted to hospital and ensuring that the carer is part of the care and discharge plan.

2.33 Although carers should receive support to help sustain them in their caring role, they are providers of services, not service users. This is an important distinction, and one which carers are keen to maintain.

2.34 The impact of caring can be immense: ⁵

• Intensive caring can result in carers being twice as likely to suffer from ill-health as non carers.
• Up to 70% of carers will hide the fact that their health is suffering.
• One in five give up work to care.
• 46% need to see a GP due to the impact of caring on their own health.
• Many carers are isolated or experience poverty of opportunity.
• Sometimes, the financial impact of caring can be acute (for example, by requiring additional heating, paying for special diets, refurbishing the home damaged by a child with autism and spending more on transport, especially in remote and rural areas).
• Where spouses or partners provide caring support to each other and where one person in the partnership falls ill or experiences an adverse event, this can result in both being admitted to hospital at much greater cost to health and social care budgets.

"Caring for our son was placing a strain on our relationship, our employment and our health. We were both physically and mentally exhausted. We never had a holiday without the stress of caring for our son."

Mary and her husband, who care for their 18 year-old son who has autism, a learning disability and challenging behaviour.

The evidence

2.35 The available evidence base points to current and future savings across health and social care arising from effective carer support:

• Training for carers can enable patients, especially those with chronic long-term conditions, to be supported longer within the community; and for older people it can delay a move to residential care. ⁶
• Improving skills of carers during the rehabilitation of in-patients reduces costs for stroke care and improves their quality of life without increasing the burden of care to families or transferring costs to the community. ⁷
• Carers provided with training are less likely to present at GPs with their own health issues. ⁸
• A recent report in England ⁹ exploring the social and economic benefits of short breaks provision aimed at those with the most complex needs (families with disabled children) estimated financial savings for the state of £174 million each year. This could be achieved through the effective delivery of short breaks combined with a range of activities, including extra-curricular and other activities in which disabled children can participate. The estimated financial savings for the state from full coverage of short breaks provision and other activity aimed at disabled children would include savings from less being spent on long-term residential care and health services. A key message is that families should have regular short breaks to sustain their health and well-being and to maintain savings to the state. Carers in Scotland say they benefit most when they have good quality, flexible respite as and when required.
• Providing telecare to people can result in savings to health and social care by reducing personal health problems as well as reducing unplanned admissions to hospital and admissions to residential care. ¹⁰

The personalised approach

2.36 Ensuring a personalised approach can help support change. Each caring situation is unique. However, carers - whatever their caring situation - require similar types of support but personalised to the caring situation and responsive to particular needs and individual circumstances.

2.37 Building on 'Changing Lives,' ¹¹ the Association of Directors of Social Work ( ADSW) has given a clear commitment to advancing personalisation, recognising that more of the same will not work.

2.38 The personalisation approach is seeking to influence policy and local practice, promote innovation and empower frontline staff. ADSW will be engaging with managers in local authorities in order to achieve wider change in culture, systems and processes that will benefit both carers and those with care needs. Of course advancing personalisation - moving towards more personalised supports - is a shared agenda relevant to all sectors and across all services.

ACTION POINT 2.1

Councils, with partners in NHS Boards, the national carer organisations and other Third Sector organisations, will continue to promote personalisation, working towards a position whereby staff at all levels receive induction training and continuous professional development on this approach, including having specific regard to the personalisation of carers' support (also see chapter 14 on training).

Resources

2.39 Resources for services to people with care needs and for support to carers are within local authority social care budgets. Other local authority budgets will also be relevant, especially in relation to housing and education.

2.40 The National Health Service ( NHS) in Scotland is also responsible for providing health services to people with health care needs and for support to carers.

2.41 Local authorities' net revenue expenditure on support for carers, including respite care, was: £100 million in 2006-07, £117.034 million in 2007-08 and £134.740 million in 2008-09. ¹² In addition, other organisations such as Alzheimer Scotland have received grants to help support carers.

2.42 Since this Government took office in May 2007, it has invested at least £15.814 million in support to carers and young carers. Some of this carries forward to 2011. The breakdown of financial support from the Scottish Government is set out in Appendix 4. The considerable level of investment in the telecare programme (over £20 million since 2006) also benefits carers.

2.43 The BIG Lottery announced in March 2010 that £50 million would be available from 2011 to support people with dementia and their carers and young people leaving care. While lottery funding decisions are taken independently of Government, the Scottish Government is working closely with the BIG Lottery Fund on this initiative.

Challenges

2.44 This strategy is being published in a difficult economic climate, with pressures on public finances and at a time when the population is ageing significantly. It is difficult to predict with certainty the duration of the economic difficulties. However, public spending will be under considerable pressure over the next few years.

2.45 Despite the economic challenges, local authorities and Health Boards will commit to delivering incremental improvements in support for carers, recognising that demand on statutory health and social care provision is unsustainable without changes in the pattern of service delivery.

2.46 Service redesign, while necessary, has the potential to adversely affect the health and well-being of carers, if they do not have access to appropriate support.

Opportunities

2.47 Support for carers is an essential part of key strategic developments such as the Reshaping Care for Older People programme, Shifting the Balance of Care, Scotland's National Dementia Strategy ¹³ and the programme of work on Independent Living, all being taken forward by the Scottish Government with its partners. The Scottish Government, local authorities and Health Boards, with key partners, can optimise the use of resources and harness the effort better by stronger strategic planning and more joined-up approaches to carer support.

2.48 Within existing financial resources, reducing avoidable hospital admissions by providing appropriate support and services in the community is the single most significant area that can deliver better outcomes for people. It also has the potential to release resources to use elsewhere in the health and social care system.

2.49 A philosophy of care that promotes people's independence and control of their situation by using current resources to optimum effect will reduce, but not eliminate, the need for additional resources to support carers.

Role of Scottish Government, COSLA and partners

2.50 The Scottish Government's role in respect of support to carers is to set out the strategic context, as we have done in this strategy. The strategic context provides the reference point, on a Scotland-wide basis, for local authorities, Community Planning Partnerships, Health Boards, Community Health Partnerships, statutory agencies and the Third Sector to locate their plans of action. The Scottish Government's lead in this area will be important to help support local implementation.

2.51 COSLA is the Scottish Government's formal partner in the development of this strategy. COSLA's leadership will be important to support local implementation.

2.52 Local authorities are responsible for decisions made at local level and they are best placed, with partners, to determine local priorities.

2.53 Given the evidence about demographic and social changes and the pivotal role of carers in sustaining care in the community, the Scottish Government and COSLA expect local authorities to have regard to the key messages in this strategy and to implement the Action Points relevant to them, as local priorities dictate.

2.54 As NHS Health Boards are accountable to Ministers, it was not appropriate or necessary for them to have the same formal partner status as COSLA in the development of this strategy. However, they were of course vital contributors to the work on the strategy. The Scottish Government expects NHS Boards to support implementation of the strategy as set out in the Action Points. Health Boards are expected to make further progress and to take forward beyond March 2011 the good practice in the Carer Information Strategies ( CIS), which the Scottish Government funded to March 2011.

2.55 The Scottish Government cannot determine the priorities of the Third Sector, although we may influence them through Scottish Government funding to voluntary sector organisations to support carers. However, we encourage the Third Sector to consider and take forward the Actions within this strategy to support carers. In particular, the national carer organisations have a key role in implementing the strategy, and some of the Action Points are specifically aimed at them.

2.56 The Scottish Government expects local authorities, Health Boards, Community Planning Partnerships and Community Health Partnerships to directly involve a wide range of partners, including Alcohol and Drugs Partnerships, in decisions about planning and delivering support to carers.

2.57 The Scottish Government values the work of those statutory and Third Sector organisations which actively support carers. To reinforce and build on that work, across all of the statutory sector and relevant Third Sector agencies, the Scottish Government expects a change in culture so that it is everyone's job to actively identify and support carers.

Baseline Position

2.58 In order to evaluate progress in support for Scotland's carers over the next 5 years, it is necessary to establish a baseline position as at 2010. Nationally, there is one key area where information is collected systematically. This is:

• The number of respite weeks provided each year.

2.59 The number of respite weeks provided in 2008-09 was 193,650 ¹⁴ across Scotland (with many local authorities using a new methodology to calculate their respite weeks). The 2009-10 figures will be published later in 2010 and will be comparable with the 2008-09 figure. Thereafter the Scottish Government will collect the figures from local authorities every year. The baseline position in 2008-09 is 193,650 respite weeks.

2.60 Under the Community Care Outcomes Framework, local Community Care Partnerships are encouraged to collect data against 16 inter-related measures. These include measures on:

• The % of carers who feel supported and capable to continue in their role as a carer;
• The % of carers who are satisfied with their involvement in the design of the care package for the person they care for; and
• The % of carers' assessments completed to national standard.

2.61 The data is examined and used for benchmarking purposes by the Community Care Benchmarking Network. A large proportion of partnerships are already using these measures and others are in the process of introducing them. The Scottish Government anticipates that such reporting will spread across Scotland in due course. Where local agencies are already collecting data against these measures, this will be published locally.

2.62 In addition, the Community Care Benchmarking Network is currently running a peer-led project on carer outcomes which includes collecting data on the number of carers assessments carried out in each partnership area across Scotland. Data on this range of activities will be published as part of a report on the project in Autumn 2010.

ACTION POINT 2.2

The Scottish Government will publish on its website each year the baseline position on respite support to carers and the position in all years up to 2015.

ACTION POINT 2.3

Each year, participating local partnerships will collect the relevant data on outcome measures relating to carers in the Community Care Outcomes Framework and will publish progress against the three outcome measures.

Good Practice

2.63 The Scottish Government has received a wide range of good practice examples/case studies from the statutory, voluntary and private sectors. These good practice examples demonstrate the commitment of local authorities, NHS Boards, the Third Sector and the private sector to ensuring support for carers in a meaningful and sustainable way.

2.64 It is not possible to showcase all the good practice examples in this strategy. We are therefore publishing in a separate document the good practice examples received, as well as examples of good practice within the NHS Boards' Carer Information Strategies. We make reference in this strategy to some of the examples. The full transcripts are in the separate document.

2.65 The challenge is to spread the good practice, recognising that local variation is sometimes necessary to reflect differing populations, geographical considerations, the existence of services already in place and so on. Certainly, some of the examples such as e-learning modules for NHS staff in one area can be rolled out at very little cost, and with high impact. A high proportion of healthcare practitioners in Lothian have received training in carer awareness through NHS Lothian's e-training programme.

2.66 However, to achieve consistent, high quality standards and approaches across the country, it is not enough simply to copy a service or support that works in one area. What is required to produce good outcomes for carers is an understanding of the changes needed to existing services and supports to make them more effective and efficient, and a commitment by decision-makers to implement these changes.

ACTION POINT 2.4

Over the next 5 years, councils and Health Boards, with partners, will take account of good practice promoted in local authority and Health Board areas. They will consider how the good practice can be transferred, if appropriate, and/or will consider whether or how existing services and supports can be reconfigured to achieve the best outcomes for carers and for those they care for. As a first step, councils and Health Boards, with partners, will consider the good practice contained in the publication accompanying this strategy.

ACTION POINT 2.5

By 2015, the Scottish Government will ensure that the planned acceleration in pace of sharing good practice under Reshaping Care takes account of good practice in supporting carers.

Care 21: The Future of Unpaid Care in Scotland

2.67 The Care 21 Report ¹⁵ made 22 recommendations about support for carers and young carers. The then Scottish Executive gave detailed consideration to each recommendation and provided a response in April 2006 ¹⁶. This strategy builds on the 22 recommendations in the Care 21 report. The 22 recommendations are set out in Appendix 5, which also details the progress made since 2006.