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1. Carers are a vital and central part of the whole health and community care system. Around 500,000 people in Scotland act as carers, giving their time, resources and energies to the care of others. Carers enable many thousands of disabled people and others who need some support to continue to lead independent lives in the community. And at the same time, carers reduce the amount of caring input that social services, NHSScotland and other agencies need to make.
2. Against the background of the enormous contribution made by carers, the Group was acutely aware of increasing disincentives to caring, and the social and demographic trends, which threaten to reduce the extent of unpaid or informal caring in the future. We believe it is essential that Government / the Executive acts positively to protect the interests of carers. Through its commitment, the Executive should seek to foster a climate where people can continue to care for as long as they wish and are able to do so, without jeopardising their health or financial security, or reducing their own expectations of a reasonable quality of life.
3. Carers already have statutory rights, particularly to have their needs for support assessed in some circumstances. The Group was invited to consider whether these provisions are adequate, or whether further changes to the law are needed to ensure that the interests of carers are safeguarded more fully.
4. The Group benefited from the active involvement of a range of carers' organisations, carers and disabled people, and service providers (particularly local authorities). This enabled the Group to explore the wide range of issues that affect carers directly or indirectly, and to make recommendations for change that we believe will make a difference in the most important areas. The Group consciously did not limit itself to recommendations, which require legislative change alone - many of the changes that would make most difference to carers do not need a change in the law, but a change in how things are done.
5. While we believe some legislative changes are needed, it is equally important to ensure that existing as well as future legislation is implemented fully. Carers have had a right to an assessment of their own needs since the Carers (Recognition and Services) Act 1995, yet in practice very low numbers of assessments are being carried out - and even where they do take place, carers often do not realise that they have been assessed, or they feel the process does not meet their needs.
6. We also concluded that the most important and far-reaching changes to the lives of carers will be brought about by changes in the way statutory agencies and other bodies view and treat carers. We hope and believe that the most important outcome of our work will be to encourage a new vision of carers, their contribution to society, and how society should support them.
CARERS AS KEY PARTNERS
7. The Group's most fundamental conclusion is that carers should be recognised by Government, local authorities, the NHS and other agencies as key partners in the provision of care. By this we mean that carers should be seen as part - very often the only or major part - of the overall provision of care and support to the person they look after. A carer however has a unique relationship with the cared-for person. In their partnership with carers, other agencies or care-providers should value and recognise that relationship and the care given by the carer in their joint responsibility for the cared-for person. Carers must have equal status with other providers of care.
8. We do not believe the law needs to be changed to achieve this shift in approach - it can be brought about by clear messages and examples from Government and by encouraging other agencies to adopt good practice that already exists in many areas.
CARERS NEED RESOURCES
9. Changing the emphasis to look at carers as integral partners in the provision of care allows the legitimate support needs of carers to be viewed in the right way too. Carers are involved in providing care, and like any other provider of care they need resources to carry out this role. Most of the resources which carers devote to caring are their own - their time and energy. Often there is also a wider cost to the carer's own financial position, employment prospects, or their personal health. We have no wish to undermine the intensely personal commitment involved for most carers, but no carer should be unduly disadvantaged by their caring activity.
10. In order to carry on caring, carers need support from time to time in a range of ways. This support may consist of information, advice, training for carers in lifting skills, or enabling the regular carer to take a much-needed break while another body provides care in place of the carer. Support of any kind which a carer receives which is to enable them to continue caring should be seen as the provision of a resource to the carer, which helps them play their role in the overall provision of care to the person they look after, not as a service used by the carer.
11. From this it follows directly that there should be no question of carers being asked to pay towards the cost of support they receive. Carers eloquently point out that they do not need this support for their own reasons, but simply in order to be able to continue as a carer. This is an area of great concern to carers, and we believe that the Executive should take whatever action is necessary to clarify that carers have a legitimate right to support, and that they will not be required to pay for it.
12. We recognise that people who are carers may sometimes need support on their own behalf, for reasons not directly connected with their role as a carer. In these circumstances, the person will continue to be in the same position as others who need social care support, and may be asked to pay towards the cost under existing policies. Our proposals would not affect this position.
13. It is not possible to quantify the resource implications of our recommendations. We are not proposing changes in the way social care services are supplied or funded currently. To a large extent, our proposals are designed to make happen what is already possible under existing legislation. Alternative care arrangements, which may include short breaks services, still constitute a service to the cared-for person, although they may also be perceived as a resource which helps the carer to continue caring. These services should continue to be funded in the existing way from the budgets of statutory agencies, subject to the contribution from any charges which are levied on cared-for people. Where the resources for carers are supplied directly to the carer to enable them to continue caring, for example, advice, information, or training, the costs will fall to be met by statutory agencies themselves, as at present.
SUPPORTING CARERS
14. The Group considered how far and how effectively carers are supported by other agencies at present. We concluded that while carers already have the right in many circumstances to have their needs assessed, in practice this does not happen enough. Statutory agencies should have a duty as well as a power to provide information to carers and to offer them an assessment of their care needs.
THE ROLE OF THE NHS
15. The Group considered how carers might be recognised or identified in order to be offered advice and support. While local authorities take the predominant role in supporting carers in most cases, in practice the majority of carers are likely to be known to the health service first - either because of the health of the person they care for, or the impact of caring on their own health. We believe strongly that improving the capacity of NHSScotland to identify and refer carers on to other agencies is one of the most powerful ways of improving the lives of the large numbers of carers who currently get little or no support.
16. We recognise that work is going on in a number of local areas to develop links between NHSScotland and carers, and we applaud these initiatives. But we have concluded that this is a crucial area in ensuring adequate support for carers, and should not be left to variable local efforts. The Executive should consider imposing a formal requirement on NHSScotland to identify and support carers as part of its essential functions, which would provide both the necessary signal and would trigger the action needed on the ground.
CARERS' ASSESSMENTS
17. Once a carer has made contact with one of the various support bodies and agencies, the process of assessment is the key to ensuring the carer can receive the support they need. Assessment is not only the gateway to carers receiving support, but is also an important process in itself in helping carers to define for themselves their own situation, and in having their caring role and support requirements publicly acknowledged.
18. Carers already have a right to an assessment so long as the person they care for is also willing to have their needs assessed. The Group believes strongly that the law needs to be changed so that carers are entitled to an assessment in all circumstances. Even when the cared-for person does not wish to be assessed, it is essential that the carer who is supporting them has an explicit right to have their own support needs considered so that they can continue to care for that person.
19. The Group believes that the nature of carers' assessments must be clearly recognised as different from assessments of the needs of cared-for people. Our recommended model, which defines carers as partners in providing care who may need resources, makes it clear that a carer's assessment should not be about identifying the personal needs of the carer, but establishing instead how the care needs of the cared-for person are to be met, and agreeing how responsibility for providing care will be shared between the carer and other support agencies.
20. We considered the process of assessment widely and make a number of other recommendations for improving how it works for carers. In particular, we concluded that it is essential that assessment should be carried out in a holistic way that considers the whole situation, that the process should be open and agreed with the person(s) whose situation is being assessed - in other words, assessment should be done with, not "done to", the carer. Ideally, a carer's assessment should be part of a wider assessment of the whole caring situation, including the needs of the cared-for person, though we recognise this is not always possible. A range of different approaches to carers' assessment are being tried in different areas, and we urge the Executive to review these, and then to issue comprehensive new guidance to statutory agencies on best practice in assessment for carers.
YOUNG CARERS
21. The Group was asked specifically to look at the position of young carers and their entitlement to receive an assessment of their support requirements as a carer. We recognise that there are complex questions raised by the needs of young carers and the most appropriate responses to them by statutory agencies. But we believe it is essential that the pressing and real support needs of young people who are involved in caring now, and will continue to be, must be capable of being met fully. We therefore recommend that the law be changed if necessary so that all young carers are entitled to have their support requirements assessed in the same way as adult carers.
CONCLUSIONS
22. Underpinning all our recommendations is the belief that carers are in a unique position. They require specific rights and support only because they are involved in caring for another person, not because of their own needs or condition. We are arguing for appropriate treatment for carers, not special treatment.
RECOMMENDATIONS FOR LEGISLATIVE CHANGE:
(Numbers in brackets show the number of each recommendation in the full report.)
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