National carers strategy

3. Health and Social Care Support

Strategic outcome

People who provide unpaid care are supported to look after their own health and wellbeing, including to reduce any negative impact of their caring role on their own health and wellbeing. (National health and wellbeing outcome 6)

Why this is important

There is a close relationship between social care support for carers and those they look after. Supporting carers in their own right improves outcomes for them and the person for whom they are caring. Sustaining caring relationships in this way has major benefits for our health and social care system. The Scottish Government will work in partnership with local government and other relevant public bodies to ensure that unpaid carers are fully supported to have a life alongside caring, in order to protect their health and wellbeing and better sustain their caring role.

There are already various ways in which we try to safeguard carers' health, including providing preventative support through the Carers Act. However, we know that many carers continue to experience a range of health problems, including poor mental health and difficulties accessing medical appointments because of their caring responsibilities. We also know that accessing social care support can be a challenge for unpaid carers, often for many of the same reasons.

The nature of some caring roles can lead to increased risks to the carer's health and wellbeing. There are a number of reasons that can give rise to this, including insufficient support for the unpaid carer, a lack of trauma-informed support from services, a lack of breaks and economic and social isolation. This can lead to poorer outcomes for the person who is being cared for.

A strategic approach is needed to tackle the causes of this kind of situation, to ensure that carers are not overwhelmed by their responsibilities and are empowered to look after their own health and wellbeing. This must be reflected consistently across the whole country to foster a balanced and sustainable lifestyle for unpaid carers.

How we will achieve this

Support under the Carers Act

The Carers Act^[15] is fundamental to carers' rights. It provides for each carer's right to a personalised plan to identify what is important to them. This should take account of their caring situation, their willingness and ability to care, and aspirations for work or study. Through the Act, carers have the right to support to meet their eligible needs. Local authorities must consider whether that support should include a break from caring. Every area must have a local carer strategy and carer information and advice service.

Ensuring that the Carers Act rights are delivered consistently for every carer is crucial to achieving the kind of outcomes we want for carers. We will continue to work with local authorities and others who have responsibilities under the Act to make sure these rights can be accessed by those who need them.

We have invested in implementing the Carers Act via the local government settlement, with baselined increases every year since the Act came into force in April 2018, bringing the total additional investment to £88.4 million per year in 2022-23. We will continue to encourage local authorities to spend their full share on expanding carer support, and will work with them to support this.

Workforce

The role of the social care workforce is critical in securing the best outcomes for unpaid carers. Some of the key actions under the national plan for implementing the Carers Act are to ensure that the people who work in health and social care have the skills, knowledge and confidence to identify, support and involve carers in line with the Act. The challenges of recruiting and retaining social care staff have a significant impact on the delivery of care and support and inextricably on the level and intensity of the caring role for unpaid carers.

Social care and social work staff

The Scottish Social Services Council (SSSC) regulates and produces training for the social care workforce. SSSC's 'Personal Outcomes Planning eBook'^[16] supports practitioners undertaking carers' personalised plans under the Carers Act. SSSC, in partnership with NHS Education for Scotland, created Equal Partners in Care^[17], an educational resource for the health and social care workforce to help them best understand their roles and responsibilities in identifying, including and supporting unpaid carers.

In partnership with COSLA we have developed a social care workforce programme and are working with our partners across Local Government, Trade Unions, and the third and independent sector to improve terms and conditions, recruitment and retention of social care staff as well as enhanced career progression through learning and development. Recognising the important role of carers is a key part of this.

Local carer centres and young carer services

Carer centres and young carer services have an integral part to play in making a lasting difference to unpaid carers and they have a central role contributing to outcomes and priorities for unpaid carers at local and national levels. We fund the Coalition of Carers in Scotland to help local carer support organisations build capacity to deliver under the Carers Act and strengthen collaboration with their local statutory partners. We have provided a series of grant funds to help local carer organisations update their resources, technology and systems and improve their capacity to support carers.

"Thank you for remembering carers and making them remember themselves even for a little while. It allowed me to give myself permission to do something for me. I am usually the last one on the list."

Understanding caring and measuring progress

The Carers Census^[18] collects information from integration authorities and carer organisations on local Carers Act implementation. It aims to establish the number of carers receiving support; what that support looks like; and an overview of progress across the country. We are funding Healthcare Improvement Scotland (HIS) to work with local services to explore challenges associated with this and consider the future purpose of the census and opportunities for local and national data.

We also need to improve our understanding of carers and caring more broadly. We will do this by drawing on the 2022 population census and other national surveys to review and refresh Scotland's Carers.^[19]

Actions about the Carers Act

Where possible, we will increase funding to carer centres and young carer services.

We will continue to encourage authorities to spend their full share of carers Act funding on expanding carer support, ahead of establishing a National Care Service making Ministers responsible for social care spending decisions.

We will support improvements in the data collected under the Carers Census so that only the most necessary information is collected and used to improve support for unpaid carers.

We will review and update Scotland's Carers.

Breaks from caring

We know that access to personalised, flexible short breaks can make a real difference for carers. It is vital that carers are able to take breaks from their caring responsibilities, especially for the mental health benefits they provide and the opportunity for people to recharge their batteries. This can help to sustain caring relationships and enable carers to have more of a life of their own. Breaks need to be accessible throughout the caring role and be a positive experience for both the carer and cared-for person. Making sure all carers are able to take regular breaks from caring is key to building a resilient and sustainable caring relationship.

Breaks are currently provided for through various routes, but we know that not everyone is able to access them. We must change this. We will ensure that every carer who needs that support has a right to breaks from caring and is able to make use of these rights on a consistent basis in a way that suits them and the person for whom they care.

Breaks under the Carers Act

Local authorities and integration authorities have a specific duty under the Carers Act to consider whether support to a carer should include a break from caring. Even when authorities decide to fund this support, many people struggle to find suitable breaks. This was exacerbated by the closure and then restricted capacity of services during the COVID-19 pandemic.

To provide better access and improve the availability of different short break opportunities, we have commenced a range of improvement work:

1. 'Promoting Variety in Short Breaks' programme, to expand short breaks by supporting health and social care partnerships to use strategic commissioning to strengthen the variety and availability of statutory short break services. This includes funding local test of change projects and learning exchange workshops, supporting the sharing of good practice and ideas.

2. Expansion of Creative Breaks^[20] funding, in line with Better Breaks^[21], to support and expand alternative third sector short break provision.

3. Funding local carer organisations to build their short breaks capacity to improve short breaks options for carers, such as short break brokerage services, staff training and participating in Respitality.^[22]

4. Providing guidance and other support to encourage the full reopening of local day care and respite services.

5. Funding Health Improvement Scotland to conduct a landscape review of the short breaks sector to improve our understanding of the issues facing the sector, the availability of different types of breaks and barriers to improvement.

We will continue to work with Local Government to ensure safe provision of day and respite services following the pandemic. We will also support local authorities to transform or redesign services to better suit people's needs.

Right to breaks from caring

We are committed to establishing a right to breaks from caring and have brought forward draft legislation in the National Care Service (Scotland) Bill. This proposes a new duty for authorities to consider whether a carer is already achieving sufficient breaks (e.g. with a limited caring role; by having family or friends step in; or due to the cared-for person's existing care package). If not, they would be entitled to receive support to meet their need for breaks.

As the NCS Bill documentation makes clear, this right to breaks legislation can be implemented ahead of establishing the National Care Service, and it is our intention to do this before the NCS comes into being.

Innovative approaches to short breaks

Alongside statutory support, we want to improve the availability of easy-access short breaks. We increased the third sector Short Breaks Fund from £3 million to £8 million in 2022-23, including £3.5 million for local carer centres. The fund is split into four programmes administered by Shared Care Scotland and Family Fund to provide preventative breaks for carers alongside (and not in place of) statutory support under the Carers Act.

• Better Breaks and Creative Breaks programmes provide 12-month grants to third sector organisations to develop and deliver short breaks projects;
• Time to Live provides micro grants, to help carers fund short breaks; and
• Take a Break Scotland provides direct grants to carers of disabled children and young people to support personalised short breaks.

Alongside the Short Breaks Fund, Respitality encourages local businesses to donate a range of gifts and experiences to unpaid carers in the area.

Time to Live Case Study

James has been a carer for his wife for many years. While he wouldn't have it any other way, he has recently become aware that he is more isolated than perhaps he should be as a result of his caring role and his creative break was the epiphany.

He spent his money on woodworking tools with the intention of getting some time to himself. "It's important for both people in a relationship to get some time away from each other." However, his wife mentioned needing a set of shelves so James decided he would like to try and make them instead of buying a ready-made set. He sourced the wood from a local supplier and while chatting with the woodman it was here he realised how much he missed company.

James found himself able to forget all about caring as he sanded and honed his shelves, taking time to admire the grain in the wood and feel its texture. Before not too long the shelves began to take shape.

They are now securely fixed to a wall and every time James walks past them he feels really proud as he thinks 'I made those'. It has done his confidence no end of good. He is continuing to use the tools for other projects and that is bringing him into regular contact with the woodman, now a good friend. "Every time I collect some new wood I get the chance for a good old chinwag". In addition, James has taken the courageous step and joined the local carer café where he gets the chance to socialise with other carers once a month.

His creative break has not only improved his wellbeing and resilience to continue caring, it has also opened up a world of new people to him.

Actions about breaks from caring

We will introduce a statutory right to breaks from caring under the Carers Act and fully fund its implementation.

We will work with stakeholders to improve the availability and range of short breaks, supported by evidence to support our approach.

We will continue to work with local service commissioners, Shared Care Scotland and others to promote greater availability and choice of short break support in different areas.

We will build on our recent investment to increase funding for short break support to increase availability of easy-access preventative breaks support.

We will continue to promote the importance and regular review of Short Break Service Statements, to ensure carers understand their right to a break and the breaks available in their area.

Ensuring self-directed support access and flexibility

Self-directed support - overview

Self-directed support (SDS) remains crucial to unpaid carers. It can be vitally important in enabling unpaid carers to balance care and other parts of their lives. SDS applies across all ages and user groups, including children and young carers. It is at the heart of Scotland's approach to social care support.

People have told us that they welcome the choice and control SDS gives them over their own support, and that it works well when it is implemented effectively at local levels. To support this, the SDS Framework of Standards (2021) helps to ensure the principles of the SDS Act are embedded in a way that supports people and carers to best meet their own personal outcomes. For example, the Framework encourages the practice that 'authorities and partnerships have clear and equitable systems and processes in place to involve people in the development of their budget' (Standard 12: Access to Budgets and Flexibility of Spend).

The statutory guidance for the Carers Act makes it clear that carers must be involved in assessment for SDS options and decision-making for the supported person where appropriate. This may involve a carer assisting the person they care for in decision making.

Recent evidence, including the Independent Review of Adult Social Care, has identified a number of challenges to SDS implementation. These challenges include the potential for SDS options to not be offered or explained to the supported person, as well as the reduced availability of options or services – in some cases, according to the My Choice My Support report (2020) up to 50% of people are not being offered the choice of all the SDS options.

These present significant and systemic challenges for many parts of the social care system and for people in receipt of SDS, which have been made worse by the impact of the pandemic and the cost of living crisis. For carers, a good experience of SDS can help to create a manageable and appropriate balance between caring responsibilities and other parts of their life. Shortcomings in the delivery of SDS have negative implications for both those in receipt of SDS and their carers.

Actions about self-directed support (SDS)

In addition to updating the SDS Statutory Guidance, we will continue to work with and through delivery partners, including Local Authorities, to support and improve delivery of SDS consistently throughout Scotland and to support national conversations promoting improvement, early intervention, capacity-building, innovation and good practice.

In the medium-term, we will embed SDS principles and a human rights-based approach into the development of the National Care Service.

We will continue to focus on creatively and flexibly supporting carers through SDS.

Carers' healthcare

Health checks and flexible healthcare appointments

Caring can have a significant impact on the health of unpaid carers, and this can be compounded by difficulties in getting healthcare appointments that fit around their caring responsibilities. There is scope to improve carers' access to routine healthcare and to make sure that the specific circumstances of carers is taken into account when offering healthcare appointments.

Carers often experience complex socio-economic and other inequalities and challenges with accessing care. There is a renewed emphasis on the potential primary care has to address health inequalities and the wider determinants of health.

There are already a range of services in place that can support unpaid carers to better manage their health. Some have a carer-specific focus, while others are more general. We will commit to raising awareness of these services among unpaid carers and to ensuring that our health services consider the needs of carers. Taking a strategic approach to this will support a joined-up approach that supports all aspects of carers' lives, rather than through the narrow prism of their caring role.

The following section describes healthcare challenges that often affect unpaid carers and some of the services that are in place. These can be a model for how we ensure the needs of unpaid carers are considered in designing service provision.

When the cared-for person is in hospital

Hospital visiting arrangements are very important for carers when the person they care for is in hospital. We have worked with NHS Boards to implement person-centred visiting across Scotland.

Person-centred visiting shifts most of the control over visiting to the patient, carers and their immediate family, much like the arrangements commonplace in children's hospital settings. It is a partnership approach between patient, carers and clinical staff to ensure people stay connected, on their terms, to the people that matter most to them.

Organisations which have developed this kind of carer-friendly culture have demonstrated a positive impact which can include reductions in falls and complaints, as well as improved patient and carer experience. There is growing evidence of the benefits of allowing people better access to carers while they are in hospital, for patients as well as staff.

The COVID-19 pandemic resulted in various restrictions to hospital visiting; however our guidance has been clear that family members who have caring roles should not be treated as "visitors", but should be able to continue to provide support as much as possible.

We will continue to work with NHS Boards to develop and implement person-centred visiting.

Community link workers and welfare advisers

Sometimes caring can arise from a lack of choices, and the challenges faced by carers can both cause and be exacerbated by inequalities of low incomes and poor health. A community link worker's (CLW) knowledge of local services should include local carer organisations and support so that they can support carers to appropriate services. In March 2022, there were over 300 CLWs working in general practice across Scotland supporting people with a wide range of issues, including debt, social isolation, benefits and housing.

We will continue to encourage the use of CLWs and ensure that they understand how best to support carers.

Actions about carers' healthcare

We will consider how to provide flexible health appointments for carers, including how we provide replacement care for appointments.

We will continue to engage with NHS Boards to help drive implementation and support them to test and spread improvements to person-centred visiting.

We will reinforce to NHS Boards their statutory duty to involve carers in decision making about when the person they care for leaves hospital, and work in partnership to help them deliver this consistently.

We will support effective and carer-aware multi-disciplinary teams in every locality, both in and out of hours, involved in the strategic planning and delivery of services, including through the development of GIRFE.

Carers and mental health

The demands of caring can have a negative effect on carers' mental health, particularly where the carer is unable to find an appropriate balance between the care they provide and other parts of their life. Evidence suggests that there is a higher risk of suicide among carers, both male and female and across different ages, than those who do not have caring responsibilities. This stark reality has been worsened by the pandemic, and we need to ensure that we take a strategic approach to improving the conditions that can give rise to this.

We will commit to tackling the issues that give rise to poor mental health in carers, both directly and through improving carers' situation through the totality of the actions set out in this strategy.

There are already a number of resources in place to support people's mental health, including the National Wellbeing Hub. GPs are crucial to recognising and supporting both the physical and mental health needs of unpaid carers, and can provide information, support and signposting.

We will continue to ensure such resources reflect the needs of carers, including placing them alongside the social care workforce in considering the potential impact of caring on a person's mental wellbeing. We will work in partnership with primary care and support services to ensure that the needs of unpaid carers are understood and recognise, and that approach appropriate action is taken when needed.

Actions about mental health and carers

We will consider what further resources and signposting of support may be needed to support carers' mental wellbeing within the National Wellbeing Hub.

We will work with relevant stakeholder groups to ensure that carers are aware of the range of mental health and wellbeing resources and advice available to them, and to consider whether carer-specific advice is needed.

We will share learning and examples of practice that emerge through our work on the Communities Mental Health and Wellbeing Fund projects in relation to supporting the mental health and wellbeing of carers.

We will improve training and support for health and social care professionals to help identify and support unpaid carers at risk of suicide and those who care for people at risk of suicide by promoting learning resources and awareness-raising on suicide prevention.

By spring 2023, we will publish a long-term delivery plan for the National Trauma Training Programme setting out how we will continue to support, embed and sustain trauma-informed workforces, services and care. This will include a priority focus on trauma training and support for adoptive parents, kinship, foster and supported carers to support delivery of The Promise.

Palliative and end of life care

We want to ensure that carers are valued and supported to care for family members or people who are dealing with a progressive illness or are dying, in partnership with professionals and other carers. This is one of the toughest challenges a carer can face. We are committed to developing a new strategy for palliative and end of life care that reflects what matters to people – patients and their families and carers – experiencing serious illness, declining health, dying and bereavement.

We will ensure that the voice of carers is heard through our Strategy Steering Group for Palliative Care, and through engagement with those with experience of caring for someone with declining health or who has died, so that the strategy can address how we can best support those carers emotionally, physically, socially and financially.

Dementia and other neurological conditions

National Dementia Strategy

Scotland's most recent National Dementia Strategy 2017-2020^[23] set out national action to support better services and supports for people living with dementia and their carers. Key areas included more and earlier diagnosis, increasing access to support after diagnosis, improving integrated home care and taking a national approach to dementia palliative and end of life care. Like the two predecessor strategies, it took a specific focus on better supporting and enabling family carers of people living with dementia.

In response to the COVID-19 pandemic, the Scottish Government published the Dementia and COVID-19 National Action Plan in December 2020.^[24] The plan outlines how the Scottish Government will work with the Convention of Scottish Local Authorities (COSLA) and a range of stakeholders to strengthen community resilience and support people living with dementia and their families to continue to get the right care, treatment and support at the right time as we learn to live with COVID-19.

In particular, human rights-based Standards of Care for Dementia^[25] provide human rights-based standards that people living with dementia and their carers can expect across all care settings. Carers are entitled under the standards to be involved in all aspects of care planning to be well-informed about dementia and to access appropriate peer support. We fund two national dementia workforce programmes to support local implementation of the dementia standards.

We will continue to build on this approach to ensure a cohesive and joined-up approach to recognising and supporting carers' needs when they are caring for someone with dementia.

"I've been caring for my husband who has a diagnosis of dementia for 3 years, no-one told me there was support for me – not the doctor or the nurse who comes in. I could have done with help from the Carers Centre sooner. It's good to have it now but I've hit crisis and it's hard to pick myself up."

Supporting the Scottish Strategy for Autism

Scotland's National Autism Strategy's outcomes and priorities for 2018-2021^[26] sets out priorities for action to improve outcomes for autistic people and their carers living in Scotland.

Supporting the Learning Disability Strategy

In 2019, we published, with COSLA, a new joint framework to support the delivery of our 'Keys to Life' learning disability strategy. The framework emphasises the joint commitment of national and local government to people with a learning disability and their carers.

Neurological care and support: framework for action 2020-2025

This Framework for 2020-2025 sets out a vision for driving improvement in the care, treatment and support available to people living with neurological conditions – and their carers - in Scotland. An aim is to ensure people with neurological conditions and their carers are partners in their care and support.

We will continue to work in partnership with local authorities, the third sector and other relevant organisations, as well as with carers themselves, to ensure that existing actions in these areas are delivered in a way that best supports carers.

Actions about dementia and other neurological conditions

We will engage widely throughout 2022/23 and co-produce with people living with dementia, carers, statutory, third sector and independent sector partners to develop our new National Dementia Strategy, building on our internationally recognised action in areas such as rights-based care and post-diagnostic support.

We will use the framework priorities to increase support for people with autism and their carers.

We will work closely with people with learning disabilities as role models, their carers and leaders to raise awareness and challenge perceptions in Scotland.

We will work with the NHS boards, integration authorities, neurological and carer organisations to help ensure carers of people living with neurological conditions are aware of their rights under the Carers Act; and that local carer services know how to access the most relevant information and training for carers of people living with neurological conditions.

Supporting the wellbeing of families

It is critical that disabled children are provided with the right support to achieve their full potential, and that their families are supported at an early stage to enable them to cope with the stresses and demands of their caring role, and to look after their own health and wellbeing. There are a number of inter-related policies and strategies which underpin support and planning for children and young people, including disabled children and young people, these are:

Getting it Right for Every Child is the national approach in Scotland to supporting the wellbeing, and to improving outcomes, of our children and young people. Refreshed GIRFEC materials were published in September 2022 (GIRFEC resources).

In March 2022, we published the Scottish Government's Implementation Plan, setting out how we will work across Government to Keep the Promise we have made to Scotland's children and young people and their families and carers. Our commitment to Keep the Promise involves ensuring there is a co-ordinated approach to services which wrap around families, providing the right support to the right people at the right time and in a way that is respectful and empowering for families.

The Programme for Government 2021 announced new Whole Family Wellbeing Funding (WFWF), investing at least £500 million to help us to #KeepThePromise. The Promise highlights clearly the importance of un-stigmatised access to effective family support with early intervention and prevention at its core.

Actions about supporting the wellbeing of families

We have committed £32 million of funding in 2022/23 directly to Children's Service Planning Partnerships (CSPPs) to build local service capacity for transformation and to support the scaling of existing transformational practice of whole family support services in local areas.

We are working in collaboration with CSPPs to provide a range of support to accelerate and share learning to drive whole system change in family support at local and national level.

We have committed a further £2.974 million of funding in 2022/23 to provide support to families on a low income who are raising disabled or seriously ill children and young people through the Family Fund who deliver support, advice and direct grants to families in Scotland.

As part of the Tackling Child Poverty Delivery Plan commitment, we will engage extensively with parents, carers and children to draft a strategic framework for Out of School Care by the end of this Parliamentary term.

As we design a system of wraparound childcare, we will integrate food and childcare provision wherever possible recognising the benefit to children and families of coordinating food, childcare and activities before school and during the holidays.