2. Carer Voice and Engagement
Carers voices are heard and their views and experiences are taken into account in decisions which affect them.
2.1 Why this is important
Those responsible for planning support or services and developing policy need to learn from carers' experiences and knowledge to ensure that systems can be 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 also involves empowering them with information about the types of support available and choices over how it is delivered.
2.2 Our approach
We support a variety of national forums and opportunities for carers to engage and have their voices heard. Recent legislation sets requirements for carers' involvement in local strategic planning as well as in individual decisions which affect them. We recognise that caring roles can restrict people's opportunities to engage and we may need to design our engagement opportunities in a different way as a result.
We want to ensure professionals and carers have the skills and resources they need to work together as equal partners in care. That involves ensuring that professionals and carers understand carers' rights to be involved in decisions about support for them and the person they care for.
2.3 Involving carers at a national level
2.3.1 Carers Parliament
The Carers Parliament is an annual one-day engagement event for carers from across Scotland 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.
The 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. A report is produced and published after each Parliament to share the day with other carers from across Scotland; to assist the Scottish Government to take forward issues raised; and to help shape future Parliaments.
2.3.2 Scottish Young Carers Festival
The Festival is an annual event for young carers from across Scotland. It offers fun and respite for attendees and the opportunity for them to share experiences with peers. It also enables national policymakers and politicians to hear directly from young carers. See section 5.3.1 for more information.
2.3.3 Carer organisations
The Scottish Government funds a number of national carer organisations (NCOs) to support their work engaging with carers, raising awareness, highlighting carers' concerns and helping provide a voice for adult and young carers in national and local decision-making. This includes the voices of carers from disadvantaged groups and different ethnic communities.
We work with these organisations, and with individual carers on a variety of carer-focused policy issues, including through the Carers Act Implementation Steering Group (see 3.3.2) working on our key priority to embed carers' rights to support under the Act.
2.3.4 Adult Social Care Reform
We are working together with people who use social care support, carers, COSLA, Health and Social Care Partnerships, the social services sector, and other partners on a national programme to support reform of adult social care. As part of the People-led Policy Panel and through the NCOs, carers have played a central role in the development of a vision, priorities and workstreams for the reform programme. This is both in their capacity as users of social care themselves, and providers of support for people who use social care. They will continue in this important role as the programme now moves to the implementation stage.
2.3.5 Social Security Experience Panels
Scotland's social security system is being shaped by people with direct experience of the benefits system. Since the Experience Panels were set up in 2017, more than 2,400 volunteers from across Scotland have shared their views and experiences. Many of these volunteers are carers. The experience panels will last for four years and will contribute to all aspects of Scotland's new social security system. See also section 5.3.2 on the Young Carer Panel's role in shaping the Young Carer Grant.
2.4 Involving Carers in local strategic planning
2.4.1 Local health and social care planning
The integration of health and social care support is a key priority for Scotland. Carer representatives must be included in both the governance structures of Integration Authorities and their strategic planning groups for health and social care services. This ensures carers have a voice and can influence decisions made at a strategic level, including decisions about service planning and redesign.
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.
2.4.2 Planning carer services
Alongside these general duties for Integration Authorities to involve carer representatives, there are also specific duties to involve carers in strategic planning under the Carers Act. Local authorities, health boards and Health and Social Care Partnerships must also involve carers and carer representatives in planning services that support carers. This includes:
- the local carer strategy, which covers carer services and plans to identify and support carers;
- local eligibility criteria for carer support; and
- 'short breaks services statements', to help people understand what short breaks are available locally and nationally.
2.5 Involving carers in individual decisions which affect them
2.5.1 Health and Social Care Standards
The Health and Social Care Standards, set out what we should all expect when using health, social care or social work services in Scotland. They explain how care and support for the carer and the person they look after should be delivered, and how they should both be involved. There is a booklet to help carers to understand the standards. The following standards are particularly relevant to caring situations:
- I am fully involved in developing and reviewing my personal plan, which is always available to me.
- I am treated as an individual by people who respect my needs, choices and wishes, and anyone making a decision about my future care and support knows me.
- If I have a carer, their needs are assessed and support provided.
The Care Inspectorate and Healthcare Improvement Scotland consider the Standards when regulating and inspecting services. The Standards are helping to change the way health and social care support is deigned and delivered, and are being used to improve the quality of services. They are also valuable to help people understand what to expect when accessing these services.
2.5.2 Decisions about social care support for carers
Health and Social Care Partnerships must involve carers in assessing their own needs for support and in deciding what support is provided and how. This is done by having a conversation with the carer to identify what is important to them in order to prepare an adult carer support plan or a young carer statement and then by offering the carer a choice of how any support is to be provided. See sections 3.3.1 and 3.5.1
2.5.3 Decisions about social care support for the person being cared for
Health and Social Care Partnerships must also take carers' views into account in assessing the needs of the person being cared for.
2.5.4 Decisions about hospital discharge of the cared-for person
NHS Boards have a duty to involve carers in planning the return from hospital of the person they care for (or will be caring for). We are supporting health boards to trial different approaches and learn from each other's experience of delivering this new duty - to help improve patient recovery and outcomes for the carer, and reduce the risk of re-admission. This sits alongside wider ongoing work to reduce both delayed discharges from hospital and unscheduled readmission to hospital and includes the Daily Dynamic Discharge Approach.
2.5.5 Decisions where the cared for person has mental ill health
There are separate provisions about involving carers in decision making under mental health legislation. The Triangle of Care project provides a framework to support involvement of carers in the care planning and treatment for people in mental health settings. There is more information about this in section 3.11.7.
If a person is being treated under the Mental Health (Care and Treatment) (Scotland) Act 2003, the rights and views of carers must be taken into consideration as much as possible when any decisions about the service user's care and treatment are made. Anyone involved in the care and treatment of the service user must also provide carers with the information they need to provide effective care. However, a carer will not receive any information that the service user does not want to have shared.
A service user may have a named person to help to protect their interests if they are being treated under the Mental Health Act. In the past, the primary carer would often automatically become the named person. Following changes to the law, a named person must now sign a declaration agreeing to take on the role and this must be witnessed by an appropriate person. The named person will have to be informed and consulted about aspects of care. The named person can put forward their views about the service user's care or treatment and has a right to have their views taken account of by anyone acting under the law (for example a doctor, psychiatrist, nurse, or social worker). It is important that the service user and named person understand that they do not always have to agree and can both act independently of each other.
If a person does not have the capacity to act in their own best interests at a Mental Health Tribunal, and does not have a named person then a listed initiator can act on their behalf. Listed initiators can initiate or start applications or appeals to the Tribunal if the service user does not have the capacity to start an application by themselves. People who can be listed initiators include the primary carer and the nearest relative.
2.6 Raising awareness of carers and their rights
We have published a Carers' Charter, to summarise carers' rights under the Carers Act.
The Act also requires an information and advice service for carers in every local authority area, to help carers understand their rights and how to access support. In many areas, this is delivered by the local carers centre or equivalent third sector organisation.
The Implementation Plan for the Carers Act includes agreed actions to ensure that people who work in health and social care have the skills, knowledge and confidence to involve carers in decision making under the Act. There is more information about that plan in Section 3.3.2.
The Carers Act Implementation Steering Group has agreed that the aims of the Carers Act cannot be realised without greater public awareness of caring and carers' rights to support. National carer organisations already have a focus on awareness raising, while statutory agencies and carer centres play a key role locally. To build on this, we will undertake a national marketing campaign next year to help more people recognise when they may be a carer and that carers have rights to support.