Home | Press | Publications | What We Do | Who We Are | Search | Site Map | Contacts | Links
Consultations
> Publications

< Previous | Contents | Next >

REPORT OF THE SCOTTISH CARERS' LEGISLATION WORKING GROUP

A New Vision for Carers in Scotland

1. The Carers (Recognition and Services) Act 1995 brought a fundamental shift in the position of carers. It was the first time that legislation attempted to address specifically the needs of carers, and the first steps taken to define rights for carers. Unfortunately, while that legislation brought in new rights for carers to have an assessment of their own needs in some circumstances, the available evidence suggests that in practice far fewer carers are benefiting from these rights than would be expected or hoped. The first-hand experience of members of the Group supports this view.
This situation can and must change: implementing this Group's recommendations would be a major step in that direction.

2. In practice, many carers are still unaware of their rights under the 1995 Act, and in some areas carers encounter difficulties in finding out about and accessing services or other support. The Group believes that the recognition and protection provided by the 1995 Act were extremely important, but in themselves have not proved enough to ensure carers consistently get the level of support they need and deserve.

3. The Group recognised that the potential impact of the 1995 Act was partly dissipated by the fact that its implementation coincided with the major reorganisation of local government in Scotland, which affected all social work departments. An additional factor was the introduction of the Children (Scotland) Act 1995 which also brought substantial changes for social work professionals at the same time. The Group's own recommendations should be seen as an attempt to give new impetus now to the policy and approach that underpinned the 1995 Act, and more importantly, to involve a wider range of agencies than just local authorities in supporting carers.

4. The Government's National Strategy for Carers in February 1999 and the Executive's Carers Strategy for Scotland in November 1999 brought further major steps forward for carers by spelling out clearly in Government policy statements the invaluable contribution made by carers and the Government's commitment to supporting them. A number of very important practical changes have already flowed from the Strategies - including the establishment of this Group - and we welcome these.

5. We believe the time is ripe to reinforce the legislative recognition and rights provided for carers. Our recommendations are intended to help achieve this. If the Executive implements our recommendations and supports them adequately, we believe they will be as important in moving the agenda forward as the 1995 Act was in its time. Crucially, we do not believe that radical changes in legislation are needed to achieve these changes. What is needed is to redefine and clarify the way carers are viewed, and for statutory agencies and others involved in supporting carers to change the way they treat carers. The recommendations of this Group should be a lever to stimulate these subtle but important changes.

6. The Group considered a wide range of issues and potential changes. Some points became clear at an early stage - eg, the importance of ensuring that carers had a right to an assessment of their needs in all circumstances, and the need to develop and improve assessment processes. But other issues were less straightforward, and led the Group to complex discussions about the position of carers who needed support to continue their caring, and the resourcing of such support. The Group also considered at length the potential areas of conflict between the rights of the cared-for person and the carer.

PROVIDING CARE

7. The foundation for our recommendations is the recognition that carers are essentially involved in providing care. Indeed, for very many of the hundreds of thousands of people who are looked after by carers, carers are the main or only providers of care. Previous attempts to put a financial value on the care provided by carers have drawn attention to the economic significance of unpaid care giving. The Institute of Actuaries 1993 report "Financing Long-Term Care in Great Britain" estimated that the value of the care provided by carers across the UK was in the region of £34 billion a year (a rough rule of thumb might suggest £3.4 billion in Scotland). While the Group recognises the power of this insight, it also believes that it is self-evident that the care provided by carers is beyond simple financial valuation -and that the impact on other support services of any single carer giving up caring is significant. The impact on other services of large numbers of carers ending their caring would be overwhelming. Quite apart from the moral arguments for supporting carers, there are therefore also powerful practical and financial reasons to ensure that as many carers as possible are enabled to continue to care as long as they wish.

8. We believe that the most fundamental changes to the position of carers can be made by formally recognising that carers are providing support, not consuming services. The 1995 Act already implicitly recognises this, but we believe there is a need for an unequivocal definition of the nature of caring. Everything else flows from that. Crucially, the recognition of carers as partners with other providers of care will underline to statutory agencies the central role played by carers (which they may acknowledge in theory, but which existing systems and approaches may not always recognise in practice) and the need for them to act in partnership and complementary support with carers. In this way, the overall quality of care provided must also inevitably improve, as carers are often the best sources of information on the needs and resources of the cared-for person.

RESOURCING CARERS

9. Once the role of carers as support givers has been reinforced, the potentially perverse consequences of considering carers who receive external support as clients or users of services - like the people they care for - should disappear. Like all other care providers carers require resources to provide support. While there is no typical carer, every carer puts their own personal resources -physical, emotional, practical and financial - and time into supporting the person they care for. Many carers are caring for tens of hours every week, sometimes through the night as well. This is extremely challenging and tiring for the carer, and what many carers need most are regular short breaks (traditionally referred to as "respite care") from the demands of caring in order to be able to carry on again. But carers may also need other kinds of help: eg, information about what services are available, emotional or practical support, or advocacy to help them express their own needs.

10. Carers can be supported in a range of ways. One of the most important ways of ensuring carers can continue to care is to allow them to take breaks from their caring responsibilities, most commonly through short break services. To allow this, alternative care needs to be given to the cared-for person. All forms of alternative care remain services provided to and used by the cared-for person, although the carer obviously benefits as well, and may be viewed as being indirectly resourced through them. Support that is provided directly to a carer to enable them to continue caring should properly be seen as a resource, which the carer needs in order to provide care to the cared-for person. Resources of this kind could include advice, information, or training.

11. We are not proposing changes in the way social care services are supplied or funded currently. Resources that are supplied directly to the carer should continue to be funded by statutory agencies as at present. Alternative care services provided to a cared-for person should continue to be funded in the existing way by statutory agencies, subject to the contribution from any charges paid by cared-for people. There should be no question of carers being asked to contribute to the costs of support they receive directly or benefit from which enables them to continue to provide their own (unpaid) service.

12. There may be occasions of course when carers need support or help to meet their own needs for practical help to support their own independent living. When this happens we believe a carer should be treated in the same way as other people with personal support needs, ie, as a user of a service. Examples might include where a person who is a carer also needs meals on wheels, or home help assistance in their own right unrelated to their caring role. In these circumstances, a carer - as a service user - may be asked to contribute to the cost of such support, within the overall framework of local charging policies.

13. For the Group, the key distinction is that where a carer needs support solely or mainly in order to continue to be able to care, and in response to needs that the carer would otherwise not have, that support should be regarded as a resource required within the overall context of providing care. We recognise that there may be a small number of cases where there may be differences of interpretation between carers and statutory agencies about whether a carer needs support in their own right or in order to continue their caring role. We believe these should be limited, and should normally be capable of being resolved by sensitive consideration on the ground. In most cases, staff trained in mediation skills will be best placed to help reach agreement.

14. It is important to stress that the rationale for this approach is not a narrow one of simply avoiding carers having to pay towards the cost of support they get from other sources. Rather, it is about establishing the fundamental position and role of carers within the network of care, and ensuring that it is correctly defined and supported.

15. If legislation establishes as we recommend that a carer has a right to an assessment as part of defining the overall support package required, and that any help the carer needs is explicitly designed to allow them to continue their caring role rather than as a competing personal need, many tensions between carer and cared-for (which may centre round fears that the carer will impose alternative care options on the cared-for person) should be defused. We recognise that there will continue to be situations where the wishes of carer and cared-for person do not coincide, and in these circumstances assessment staff will need to mediate. It is important to acknowledge that there are a minority of caring situations, which are not positive and may even involve elements of exploitation or abuse by either party. The Group believes it is important that the needs of carers are not regarded as inherently subordinate to those of the cared-for person - professionals from all support agencies owe an equal duty of care and protection to both carer and cared-for.

16. There is an argument that the potential for such differences should be recognised and specific channels formally identified to help resolve them. The Group concluded, however, that this was not necessary: mediation and resolution of different views is an integral element of existing social work functions, and there are established channels for pursuing complaints about decisions reached by social work staff if necessary. In some circumstances, advocacy support may help to resolve such differences.

FORMER CARERS

17. The Group also identified particular concerns about the needs of "former carers" at the point where their caring role ends, for whatever reason. Carers invest huge personal resources in their caring role, which may have continued over a long period: the time when their caring stops can be very demanding, both practically and emotionally as the carer may experience very strong feelings of guilt and failure about ceasing to care. During this period carers may also face a range of additional pressures, including consequences for their own health, stress-related difficulties, housing and financial uncertainties. Many carers may also face the challenge of re-establishing their own identity and position in the community now their caring has ended.

18. During this very difficult transitional period carers may have particular acute support needs which are directly related to their former role as carers. We believe that the law should formally recognise this reality and provide that former carers continue to be treated as carers in all respects for a defined period after their caring role ends. The existing rules on eligibility for Carer Premium which extends for up to 8 weeks after the end of caring may offer a suitable precedent, as does the UK Government's intention to allow Invalid Care Allowance to be extended for up to 8 weeks after the caring role has ended.

< Previous | Contents | Next >

The information contained on this WWW site is Crown Copyright but may be reproduced without formal permission or charge for personal or in-house use. Privacy and Content Disclaimer.

For general enquiries about this web site email ceu@scotland.gov.uk or fill out our online questionnaire.