Chapter 3 Information and Advice
This chapter covers:
- carers' and young carers' access to information and advice, including to the Carers/Young Carers Rights Charter; and
- maintenance of information.
The aim is to complement existing and new policy and practice developments with provisions in law which would help to ensure that carers and young carers have access to comprehensive, accessible and carer-friendly information and advice so that they can then make decisions about what further support might be necessary. Information and advice for young carers should be tailored to be age-appropriate. Access to accurate and timely information and advice is empowering for carers and young carers and helps to promote and achieve positive outcomes. Information and advice is a form of support which should be available on a universal, preventative basis.
1) Caring Together states:
'It is necessary to maintain a focus on the provision of timely, accurate and good quality information and advice not only when someone is new to caring but also whenever information and advice is needed.'
2) Carers tell us that access to relevant and accessible information and advice is key to supporting them and the individuals they care for. Indeed it can be the golden key which then opens the door to further support. The provision of information and advice is important when someone is new to caring and at relevant points throughout the caring, including at transition points and as the nature or intensity of caring changes.
3) Lack of accessible and comprehensive information and advice both about services for service users and support for carers can be costly both in terms of future crisis management and the health outcomes of both carers and the individuals they care for. Carers sometimes tell us that the information they get comes too late or is not the right level of information. They say that their outcomes would be much better if only they had access to the right information at the right time.
4) This is summarised well in recent research:
'Both staff and carers felt that finding and giving information about services and resources (particularly local ones) was a challenge, yet knowledge and information were considered to be crucial enablers for the achievement of personal outcomes. Carers especially valued effective signposting from professionals to enable them to navigate the complex systems of health and social care with greater ease, but also felt this could be improved. Carers also suggested that information giving techniques could be improved, for example by revisiting information with someone once it has been given. These implications are relevant to all organisations, but it is likely that effective joint working and further development of information systems and provision to the public might be key enablers.'
5) There is an important point about information-giving techniques. Some social work and health staff will say that relevant, helpful information has been passed on to the carer but it has not been understood or accepted. When carers are under a lot of stress and pressure, their ability to absorb and make sense of information will be impaired and that is why it is so important to deploy effective information-giving techniques.
6) The same applies to signposting and the provision of advice. The Carers Reference Group which advises the Scottish Government has made clear that carers can feel let down or abandoned by signposting which is ineffective. Sometimes the signposting needs to take the form of helping the carer on a one-to-one basis to navigate through the system to appropriate supports and services.
7) The availability of relevant and easily accessible information and advice is key to a preventative approach to supporting carers. This support ensures that carers feel informed and prepared and minimises the likelihood of caring relationships descending into crises.
Further policy and practice developments
8) Some of the funding the Scottish Government provides to Health Boards for Carer Information Strategies has supported the provision of information and advice. This has been helpful in providing a wide range of information and advice to carers.
Living it Up is a three year programme working with five local partnerships across Scotland aimed at empowering people to improve their health and well-being. Living it Up will deliver innovative and integrated health, care and wellbeing services, information and products via familiar technology enabling people to keep better connected with their communities and those they care for and receive care from. These technologies will include TV, mobile phone, games consoles, computers and tablets. The five partnership areas are: the Western Isles, Forth Valley, Lothian, Moray and Highland/Argyll & Bute. It is initially aimed at the over 50s but will also be of benefit to people living with long-term conditions, carers and those who just want to keep healthy, happy and safe.
Living it Up will provide a personalised and integrated menu of services, information, products and social activities to support social, health, care, and personal interests which will keep people connected, creating and sustaining relationships with family, friends, neighbours, local communities and health and care professionals.
Care Information Scotland is being redesigned to provide information and advice for carers and those being cared for across Scotland. The service will provide information both nationally and locally. This service aims to enhance other information which is already available. It is proposed that the service will be operational from December 2014.
Existing legal provisions on information and advice
9) Presently, there is statutory provision which requires local authorities to notify carers that they may be entitled to request a carer's assessment. With regard to Health Boards, Scottish Ministers may require Health Boards to prepare and submit to them a Carer Information Strategy for informing carers who appear to the Board to be entitled to a carer's assessment that they may have such rights.
10) There are also provisions in law requiring local authorities to provide service users with information and also to publish information, for example, about relevant services they provide in respect of children.
11) The Patient Rights (Scotland) Act 2011 also contains provisions about providing information to patients and the provision of patient advice and support services.
12) The Social Care (Self-directed Support) (Scotland) Act 2013 includes duties for local authorities to provide information to adults, children, carers and young carers about self-directed support in relation to the four options available to service users and carers.
13) There are provisions in the Children and Young People (Scotland) Bill for service providers to communicate information about the role of Named Persons and help the child, young person or their parent to access a service or support.
Proposals for new legislative provisions
14) Although there are policy and practice developments underway to support service users and carers with information, our view is that further impetus should be given through law to the provision of both information and advice. There would be suitable dovetailing between new information developments and those proposed in law. Moreover, the only provisions presently in law with regard to the provision of information directly to carers relate to the specific areas of the carer's assessment and the options under self-directed support.
15) We therefore propose to introduce a duty for local authorities to establish and maintain a service for providing people in its area with information and advice relating to the Carer's Support Plan, support for carers and the Carers Rights Charter. (Annex D provides further information on the Carers Rights Charter). We also intend that the information and advice must be accessible to, and proportionate to the needs of, carers. Information should be provided about support to carers provided by the Third Sector.
16) We envisage that the provision of information and advice will be available to all carers whether or not they have received a Carer's Support Plan.
17) We will set out in statutory guidance the level and type of information and advice that is to be available through the service. We envisage a service which, amongst other things, takes account of different caring roles, which provides information and advice on, or signposts carers to, services on welfare benefits checks/income maximisation, and which provides information and advice on advocacy for carers and short breaks.
18) We also propose to repeal section 12 of the Community Care and Health (Scotland) Act 2002 about the submission of Carer Information Strategies to Scottish Ministers. Our view is that the provision will be redundant when the integration of health and social care is established. Subject to Spending Review decisions, the Scottish Government would still be able to provide funding towards the costs of information and advice services and for the other forms of support to carers provided by Carer Information Strategies. Indeed, the role of Health Boards has been crucial in developing support to carers and young carers and we would like to see this maintained.
19) The proposals for changes in the law about information and advice should apply to young carers in the way they apply to adult carers (but for information and advice on the Carers' Support Plan, read Child's Plan). There would need to be appropriate dovetailing with information provided under the Children and Young People (Scotland) Bill and the Education (Additional Support for Learning) legislation.
What Do We Want To Know From You?
Question 7: Should we introduce a duty for local authorities to establish and maintain a service for providing people with information and advice relating to the Carer's Support Plan and support for carers and young carers?
Question 8: Should we repeal section 12 of the Community Care and Health (Scotland) Act 2002 about the submission of Carer information Strategies to Scottish Ministers, subject to reassurances, which are subject in turn to Spending Review decisions, about the continuation of funding to Health Boards for support to carers and young carers?
Email: Alun Ellis