National carers strategy

2. Valuing, Recognising and Supporting Carers

Strategic outcomes

• Carers are recognised and their contribution is understood and valued by society.
• Carers' voices are heard and their views and experiences are taken into account in decisions which affect them.

Why this is important

Our health and social care system could not survive without the commitment of unpaid carers. People have provided unpaid care for family and friends since before there was a health and social care system. But the way our public systems work and interact has a profound effect on the lives of those who provide unpaid care and whether caring is sustainable.

Many carers have told us that fighting their way through multiple systems is an exhausting feature of their lives, which contributes to stress. Carers can spend a lot of time trying to navigate through the system to find the right service for the person they care for or the right support for themselves. Carers have also told us that social attitudes, particularly to roles often perceived to be for women, contribute to keeping caring invisible and undervalued.

The pandemic made all of these issues worse, and for many unpaid carers, it is likely that the effects of the pandemic will continue for some time.

The Scottish Government and others responsible for developing policy and planning and delivering support or services must learn from carers' experiences and knowledge to ensure that systems are fit for purpose at a national and local level.

At an individual level, genuine communication is the key to enabling choice. Professionals need to understand and value carers' skills and insights to ensure that support for both them and the cared-for person is as good as it can be. Effective collaboration with carers includes empowering them with information about the types of support available and choices over how it is delivered. However, it is important to recognise that some carers may find it difficult to properly participate due to their own heavy caring commitments and may be excluded, especially from more intensive carer participation. Encouraging the provision of practical support to facilitate carer participation should also feature in the range of measures to support involvement.

There are already many effective processes in place to support carers, but we know that particular aspects of caring remain challenging. We will build on the existing structures that work while addressing things that need to be improved.

How we will achieve this

Recognising, valuing and raising awareness of carers and their rights

The Independent Review of Adult Social Care identified that greater recognition and support is needed for unpaid carers.

We want to foster a profound culture shift to make caring visible, valued and supported by a connected approach across communities and systems. We will use this strategy to drive a national approach to doing that.

The review of the National Outcomes also offers an opportunity to increase the visibility of caring.

We will ensure carer awareness and visibility are supported through our ongoing commitment to promote equalities and embed international human rights obligations in Scots law.

We work with the Carers Rights and Support Steering Group bringing together carers, carer organisations, COSLA, integration authorities and others to support and guide the implementation of the Carers Act. The group has agreed that the aims of the Act cannot be realised without greater public awareness of caring and carers' rights to support. The group's national implementation plan covers key priorities including workforce development; awareness and communications; and measuring progress and impact. National carer organisations already have a focus on awareness raising while statutory agencies and carer centres play a key role locally.

In designing Scottish Carer's Assistance, we will make sure that carers applying for it are told about other social security benefits and wider services that are available to them. We know from our engagement to date that there are some areas and points in carers' lives where links to other services could be particularly useful. For example, at the start of a caring role, when young carers are moving on from young carer services and support to adult services, or when a caring role comes to an end, especially if this is due to the loss of the cared for person. Links to information and advice on education, training and work would help carers who would like too, and are able to take part in these opportunities.

We remain committed to recognising the immense contribution carers make, increasing public awareness of caring and involving carers to ensure that our policies are informed by their lived experience.

We launched a national communications campaign in December 2020 to help more people recognise when they are in a caring role and access support. The evaluation indicated that the campaign was successful. We ran the same campaign again in March 2022.

Effective carer involvement also involves empowering carers with information about their rights. We have published a Carers' Charter^[12], which summarises carers' rights under the Carers Act. Some kinship carers will also have rights as unpaid carers where the child they are looking after has a disability or long term health condition or where they are also supporting the birth parent alongside looking after their child. This strategy will help support and embed those rights.

Identifying carers

There are a number of different ways of helping to identify carers such as through practitioners in the NHS and social care professions who are best placed to identify carers due to their contact with patients and their families.

The Scottish Government ran a public communications and awareness campaign in 2020 and again in March 2022, focused on helping more people recognise themselves as unpaid carers and making them aware of the support available.

People can self-identify as carers. However, that is not straightforward and may take some time. There is a widespread view that caring for or looking after a loved one is 'what you do'. For example, parents of disabled children will see themselves as parents first and foremost, not necessarily as carers. Once identified, many will rightly call themselves parent-carers. Similarly, many younger people supporting siblings and/or parents do not consider themselves to be young carers. Older people caring for their partner or other relative do not always view themselves as carers. We also recognise other family structures, including kinship carers or guardians.

It can also be difficult to determine when the caring journey starts, depending for example, on the condition of the person receiving care, who may be reasonably healthy initially. As people become older, frailer or sicker, become more disabled, experience addiction or have a mental health problem diagnosed, the role of carer becomes more apparent, especially to the unpaid carer. The role can also be impacted by the level and type of support available to the cared-for person, both formal and informal.

Even when people do see themselves as carers, this may not always be recognised more widely. Raising the profile of unpaid care will help people to understand what it involves and what it means for a person who is an unpaid carer.

"It's difficult to stand up for your kids and be that person. It's taken a long time for me to say I am a carer. I need other people to recognise my role as a carer and value it."

Many people who support family members with mental health problems or drug or alcohol issues do not identify themselves as carers and there is still a lack of understanding from others surrounding this caring role. In addition, the person with care needs may deny that they need or are getting support from a family member or partner. This makes it difficult for people to self-identify as carers and for others to see them as such.

There are those whose voices are furthest from being heard and who are often hidden carers. This can be particularly true for minority ethnic and LGBT carers.

By helping people to self-identify as an unpaid carer or raising awareness so that others can recognise that they are providing care, we can open up access to information and other forms of support. This is an important first step to ensuring an unpaid carer can access support, including any social security benefits to which they be entitled. As part of this, health and social care professionals, as well as professionals in other sectors such as schools and further education, need to be aware of unpaid care to help people to access appropriate support.

Actions to raise awareness

We will make it easier for people to recognise themselves as carers and to access support and advice.

We will foster a culture shift towards greater recognition and valuing carers and a connected approach to carer support across government by: connected leadership in the delivery of this strategy, ensuring carers issues are represented in the review of the National Outcomes.

We will update the Carers' Charter to reflect carers' rights to information and advice; new rights for carers of people with terminal illness; and, subject to Scottish Parliament approval, the right to breaks from caring.

We will support local carer centres to build capacity and ensure all carers can access consistent and up-to-date information.

We will keep the need for further national communications campaigns under review.

Involving carers at national level

Carers Parliament

The annual Carers Parliament is funded by the Scottish Government and delivered on our behalf by Carers Scotland in partnership with a steering group of other relevant organisations, informed by carers to:

• Enable carers from every locality in Scotland to come together to consider, at a strategic level, the policy and legislation that affects their lives;
• Influence the way forward, reflecting on the impacts of recent developments and sharing good practice; and
• Ensure policymakers and politicians can hear directly from carers about their lives and the impact of policy and legislation on them.

Scottish Young Carers Festival

The Festival is an annual event for young carers from across Scotland. It offers fun activities and respite for attendees, as well as allowing them to speak directly to national policymakers and politicians about their experiences and what matters to them.

Carer voices in national policy making

The Scottish Government funds a number of national carer organisations to engage with carers, raise awareness, highlight carers' concerns and help provide a voice for adult and young carers and local carer services in national and local decision making. This includes the voices of carers from rural and island communities, different ethnic communities and minority groups.

We work with these organisations and with individual carers on a variety of carer-focused policy issues.

We include carer organisations and individual carers on national policy and advisory groups to learn from carers' experiences and knowledge and ensure that national systems are fit for purpose, including through the Carers Rights and Support Steering Group, Carer Centre Managers Network, Statutory Carer Leads, Young Carers Working Group and the Social Care Systems Pressures Group.

We have been listening to, and working with, carers and the organisations who support them to develop our proposals for Scottish Carer's Assistance. This includes the Social Security Scotland Experience Panels, our Carer Benefits Advisory Group and the Independent Disability and Carers Benefits Expert Advisory Group. We are grateful to everyone who is contributing to the development of these proposals.

It is essential that carers' voices continue to inform the development of policy. We will use this strategy to build on our current approach to ensure that carers can influence and shape policy that affects their lives. A key part of this will be to ensure that it not limited to issues that affect only carers, but that a strategic approach is taken to reflect the interaction of different policy areas on the lives of carers.

National Care Service

As part of the development work to design and establish the National Care Service (NCS), a Social Covenant Steering Group has been set up. This includes people with lived and living experience of social care to review our plans for co-design and engagement, helping us to ensure the new service is designed around the needs of people who access social care and supports the needs of unpaid carers and care workers. As the NCS moves forward we are committed to engaging with people with lived experience of social care to co-design the detail of the new system.

Other key points include the rights of carers to ensure their interests are heard under the NCS. Carers will be voting members on new care boards which will replace integration authorities.

The National Care Service (Scotland) Bill emphasises the importance of inclusive communication and independent advocacy to enable people accessing care and their carers to claim their rights, specifically through the NCS Charter and complaints and redress. Data and digital processes will be reformed which will see improved delivery of social care support.

Actions to involve carers in national policy and legislation

We will ensure that policy is informed by lived and living expertise, by working with carers and carer organisations to ensure carer voices are represented and heard in national policy making, including in shaping the National Care Service.

We will continue to support the Carers Parliament to engage carers in policy making and ensure their voices are heard by decision-makers. We will engage with carers to shape future Parliaments.

We will continue to support national work to engage, raise awareness and support carers' voices to be heard across all relevant issues.

We will involve carers through the Social Security Experience Panels and Social Security Scotland research, including the Client Survey and the Client Panels.

Involving carers in local strategic planning

Local health and social care planning under the current system

Under the current social care system, carer representatives must be included in both the governance structures of integration authorities and their strategic planning groups for health and social care strategies. This ensures carers have a voice and can influence decisions made at strategic level, including decisions about service planning and design. Carers are not voting members of Integrated Joint Boards (IJBs) but, as above, will be voting members on care boards when the NCS is established. This will help to ensure carers' views have the same weight as others.

To support carer representatives in their roles on integration authorities, we fund the Carers Collaborative which is supported through the Coalition of Carers in Scotland. This provides a forum for carer representatives to engage with their peers from other integration authorities, providing support via training and networking. It also highlights good practice and common concerns to integration authorities through its 'Equal, Expert and Valued' series of reports.

Alongside these general duties are specific duties to involve carers in strategic planning under the Carers Act. Health and social care partnerships, local authorities and health boards must also involve carers and carer representatives in planning services to support carers. This includes:

• local carer strategies, which cover carer services and plans to identify and support carers;
• local eligibility criteria for carer support in line with work underway on the National Care Service; and
• 'short breaks services statements', to help people understand what short breaks are available locally and nationally.

Local authorities must produce a local carer strategy. We have provided a checklist on what these must include.^[13] While they are primarily about Carers Act duties, we also encourage authorities to use them to take a more holistic view of how carers are supported across public services (for example education, housing and transport). As part of this Strategy, we will work with local carer leads to explore how we can support this and develop a consistent approach across the whole of Scotland.

Engaging with third and independent sectors, including the Coalition of Carers in Scotland, Scottish Care (Partners for Integration programme) and the ALLIANCE, we will continue to focus on enhancing reporting mechanisms, measuring the impact of outcomes, and supporting carers in their role on integration authorities.

We will work with Integration Authorities, their Chief Officers, Boards and stakeholders to realise the full potential of integration and ensure that the people of Scotland get the right support, in the right place, at the right time, no matter their care needs.

The Independent Review of Adult Social Care identified the need for better representation of carers in local planning, commissioning and procurement. We will continue to work in partnership to deliver ongoing improvement within the current system ahead of the establishment of a National Care Service.

We want to ensure that everyone in our society has equal access to support and services and that the systems we put in place do not act as a barrier to achieving that. Local authorities must take account of the impact of having one or more protected characteristics when identifying carers' personal outcomes and needs for support and in providing carer information and advice services. The public sector equality duty means integration authorities, local authorities and health boards must consider how their policies or decisions affect people with protected characteristics. Ensuring that this extends to discrimination by association, where someone is treated less favourably because of their link or association with the protected characteristic of someone else (such as a carer's link to the disabled person they are looking after), would help carers (and duty bearers) to realise their rights.

We have already developed extensive guidance and resources, and investment to support local implementation. We worked in partnership with carers and carer organisations, including MECOPP, to ensure resources met the diverse needs of carers.

We will continue to work with local authorities to support the delivery of these duties, working strategically to ensure that the rights of carers are protected throughout Scotland.

Actions to support involvement in local planning and decision making

We will continue to support the Carers Collaborative and draw on reports and use this knowledge to inform future activity.

We will continue to prioritise the enhancement of carer involvement in local strategic decision making under the current system. Providing carers with support and access to national training events remains a primary focus of this work.

We will also continue to collaborate with third and independent sector bodies that enable carers in their role within integration authorities.

We will ensure that unpaid carers are involved in planning support and services under a future National Care Service through their involvement in co-design activity.

We will continue to work with partners and people with lived and living experience to make sure that our social care services work for everyone, including ensuring support for carers becomes more accessible and consistent.

Involving carers in individual decisions which affect them

There are already a range of duties on public bodies to ensure that carers are involved in decisions that affect them. We know that this does not always happen consistently across Scotland. We will work in partnership with public bodies to make sure that carers are always involved in decisions that affect them, and that they are involved at the right times. The development of the Getting It Right for Everyone (GIRFE) practice model will support our strategic approach, helping to embed greater joint working and the involvement of people in decisions that affect them.

Decisions about social care support for carers and the person being cared for

Health and social care partnerships must take the carer's views into account when assessing the needs of the person being cared for.

Decisions about hospital discharge of the cared-for person

NHS boards have duties under the Carers Act to involve carers in planning the return from hospital of the person they care for (or will be caring for). This helps to improve patient recovery and outcomes for the carer, as well as reducing the risk of re-admission.

We continue to support health boards to improve practice and learn from each other's experience of delivering this new duty, including by funding

Healthcare Improvement Scotland (HIS) and NHS Education for Scotland (NES) to work in partnership to explore what involvement in hospital discharge means to unpaid carers and what good practice looks like.

We recognise the importance of timely discharge from hospital as soon as patients are medically fit, with delays being linked to poorer outcomes. We continue to invest in Care at Home capacity, community-based multi-disciplinary teams, and intermediate care models both as step-up or step-down options. We must ensure a strategic, joined-up approach, and a range of initiatives are being taken forward tackle delayed discharge and promote better outcomes for people.

Our Discharge without Delay Improvement Programme, backed by £3 million, is supporting all health boards and health and social care partnerships across Scotland to improve discharge planning procedures. The programme recommends that 'discharge planning should begin the moment someone is admitted to hospital. This process should begin with engaging with the patient, carer and family, indicating when the person is likely to be going home'. Carers have rights under the Carers Act to support, information and advice (see following chapter). We continue to support health and social care partnerships to make carers aware of these rights.

Decisions where the cared-for person has mental ill health

If a person is being treated under the Mental Health (Care and Treatment) (Scotland) Act 2003, it is important that the views of the carers are taken into account and we will work to ensure this happens. Anyone involved in the care and treatment of the cared-for person must also provide carers with the information they need to provide effective care. However, a carer will not receive any information that the cared-for person does not want to be shared.

We know that it can sometimes be difficult for unpaid carers to engage and communicate with mental health practitioners. An independent review of mental health and incapacity legislation has proposed changes to the Supported Decision making regime which relies on unpaid carers to ascertain the will and preference of the adult. We will work in partnership with relevant public bodes to ensure that unpaid carers are consistently involved in these cases.

Adults with incapacity

Under the Adults with Incapacity (Scotland) 2000 Act carers can apply to be appointed as legal proxies if the person they are caring for is assessed as not having capacity to manage their own welfare and care support, or to make financial decisions

The Act sets out arrangements for appointing legal proxies which can include carers to make some or all decisions regarding welfare and/or finance and property matters on behalf of an incapacitated adult. Any intervention that takes place under the Act must take into account the principles of the Act.

One of the key principles of the Adults with Incapacity (Scotland) Act 2000 is that anyone considering intervening under the Act must consider the views of the primary carer and consider any information that a carer has about an adult's past or present wishes.

We will update the Code of Practice for continuing and welfare attorneys. This will reflect changes in the legislative environment, taking into account the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) as well as recent case law. The UNCRPD emphasises the use of supported decision making and one of the likely sources of this will be family and friends, which might include unpaid carers.

We will work with carers, carer organisations and relevant public bodies to ensure that these principles are reflected in practice.

Triangle of Care

The introduction of the Carers Act established rights for all carers to support, information and advice; and to be listened to in decisions about the care and support of the person they are caring for, including a responsibility on health boards in relation to carer involvement in discharge planning. The Triangle of Care^[14] helps mental health services support carers in exercising these rights by providing the information, advice and support that carers require to continue in their roles as expert partners in care.

A new Child and Adolescent Mental Health Service (CAMHS) assessment tool has also been developed, heavily based on the main Triangle of Care self-assessment tool, enabling CAMHS teams to get a true picture of how they engage with carers and families, supporting them to create action plans to improve.

Actions to involve carers in individual decision making

We will continue to support improvement work to ensure health and social care professionals are aware of their duties to involve carers and have the skills and resources they need to work together as equal partners in care.

We will ensure that the Independent Review of Adult Social Care recommendations on effective carer involvement are delivered as a key element in a NCS.

We will continue to fund Healthcare Improvement Scotland (HIS) and NHS Education for Scotland (NES) to work in partnership and explore what 'involvement' in hospital discharge means to unpaid carers and what 'good practice' looks like.

We will improve the involvement of carers in decisions where the cared-for person has mental ill health.

We will respond to any recommendations of the Mental Health Law Review for improvements to the experience of unpaid carers, including young carers, within mental health.

We will update the Code of Practice for continuing and welfare attorneys to reflect changes in the legislative environment, taking into account UNCRPD as well as recent case law.