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REPORT OF THE SCOTTISH CARERS' LEGISLATION WORKING GROUP

SUPPORTING AND RESOURCING CARERS

1. The previous chapter sets out the Group's recommendations about the strategic vision of the role of carers which legislation and accompanying guidance should reinforce. To turn that vision into practical changes on the ground which will immediately and tangibly help carers, the Group identified a number of areas where specific changes are needed. Above all, existing processes, attitudes, approaches and services need to develop or improve in order to deliver the change of focus of carers as partner providers of care, rather than potential consumers of support services. While we recognise that there is a lot of goodwill to carers and some good practice amongst statutory agencies, there is a pressing need for these to become the rule.

2. We consider the areas where carers would benefit from change under headings which cover the chronological stages involved in supporting carers: information & awareness, identification and access, assessment, resources, and review.

INFORMATION & AWARENESS

3. For all carers needing support, the first requirement (both chronologically, and often in priority terms) is ready access to a range of sources of information. Information which both clarifies and recognises the nature of the carer's role, explains the rights and entitlements of carers, and which points carers on towards sources of possible support. The Group recognises the work done by the Executive nationally to raise awareness of carers' issues and to improve the information available to carers. The Group felt there was particular scope for the Executive to seek to reflect the needs of carers in future health education and health promotion campaigns.

4. Despite this national publicity, the Group believes that at local level many carers are often unaware of the range of support or other resources which may be available to them. This may be due both to limited penetration of national publicity, and to inadequate commitment by some local agencies to inform carers of their rights. We know there is much good practice and that some agencies are very effective and proactive in identifying and offering information to carers, with effective support in some areas by NHS staff. And we recognise the very important role played by high street "one-stop shop" centres for carers in making information available, particularly those affiliated to the Princess Royal Trust for Carers.

5. The Group believes that a more proactive and joint approach by all the main agencies with whom carers have contact should be encouraged to ensure carers are offered the information they need. People who care should not feel pressured into fitting a standard model of "carer" which may not be appropriate to an individual's own view of themselves, or their personal motivation. But it is essential that any individual involved in caring has the opportunity to find out about and access support that is available, if they choose. The Group believes that wherever they are aware of or suspect the presence of a carer, local authorities should have a duty to offer information for the carer, which clearly identifies the support options available, and how to pursue these. The Group felt there was a case for a similar duty on the NHS: see paras 8-10 of this chapter below.

6. The Group's main recommendations are likely progressively to lead to more carers having their support needs assessed and addressed. A crucial source of support available to many carers is that provided through the DSS benefits system, and the Group believes that information provided to carers by local authorities and other agencies should explicitly identify the main social security options which may be available, and provide clear advice on how to pursue these.

7. The Group also concluded that it was important that information for carers, from whatever source, should be available in the carer's own language or in a format accessible to them (eg, for deaf or blind carers). This is particularly important as many carers are as a result of their caring not necessarily closely involved in the life of the community, and are therefore less likely to come across or be offered information they can easily use. This is a key issue for carers from minority ethnic communities, who may find it even more difficult than other carers to find out about and access support.

IDENTIFICATION & ACCESS

8. The majority of cared-for people will be in contact with the NHS at some time, either at the onset of their illness or disability, or when matters progress to the stage where they need the support of a carer. The Group believes that staff working within NHSScotland are usually best placed to identify carers, provide them with initial information and signpost them on to further support. We are aware of a number of projects under way in different localities which are working with GP practices to explore how front-line contacts between patients and NHSScotland could be developed to identify carers and offer information to them. Some of these projects are producing good results in identifying previously "hidden" carers. The full impact of this work will only become clear over the longer term, once it can be established whether the identification of these carers leads to them getting better support. The Executive should explore ways of ensuring that good practice in these areas which is being developed in local projects is shared more widely.

9. While the Group hoped that local projects would highlight ways of achieving lasting improvements for carers, they were concerned that the wide range of other priorities faced by the NHS might make it difficult to maintain the new approaches once specific projects had ended, and the associated support and encouragement had been withdrawn. The Group discussed whether a statutory duty should be placed on NHSScotland (perhaps on GP practices) to identify carers and offer information to them. An obligation like this might not sit easily with the general principle that NHSScotland should address the health needs of the population as a whole, rather than giving specific priority to particular needs or groups.

10. The Group believes very strongly that the frontline of the NHS holds the key to finding and beginning to support carers. Yet, while the NHS is likely to know most about who and where carers are, it is local authorities which have the statutory responsibility for supporting carers: it is essential to find a way of creating clear and firm links between these parts of the overall picture. The Group concluded that the Executive should consider seriously the introduction of a statutory duty on NHSScotland to identify carers, give them information, and refer them as appropriate to further support.

11. While working with NHSScotland appears the most obvious and immediate route for identifying "hidden" carers, the Group believes there are also other potential avenues and approaches, which should be explored. We understand that the Department of Health in London intends to take these issues forward through a UK-wide group, and the Group believes that the Scottish Executive should ensure it is closely involved in this work.

ASSESSMENT

12. Members of the Group believe very strongly that the right to, and availability of, an assessment is the most important and powerful means of ensuring that carers can access the support they may need to enable them to carry on caring. A sensitive and open assessment process should provide the gateway to support, and thus the key to ensuring that carers can continue to provide care. Group members had extensive experience and knowledge of how the assessment process works in practice, and identified a number of ways in which current arrangements should improve. Assessments of carers were frequently felt by carers to be confusing and unclear _ carers were not always aware that they had been assessed, and carers sometimes felt there was insufficient support available to them around the assessment process itself.

13. One issue that the Group was explicitly asked to consider was the extent to which the 1995 Act is adequate in allowing a carer to have their own support needs assessed only when the cared-for person agrees to have their own needs assessed. The Group believed that it is essential for carers to have a right to an assessment of their own needs, whether or not the cared-for person chooses to have an assessment.

14. We also concluded that the right to an assessment should be backed up by a duty for local authorities to offer a carer an assessment where they are aware of the presence of a carer. We believe this additional provision is necessary to ensure that local authorities take a more proactive approach to offering carers assessments, and that the provision of adequate information is recognised as an essential part of supporting carers.

15. The Group recognised the importance of ensuring that carers have complete choice over whether to have their needs assessed, or whether to accept any support offered to them. Nothing in our recommendations should undermine that principle. Local authorities and other agencies must ensure that in making carers aware of their rights, they also make clear that carers are not obliged to make use of them if they do not wish to, and can be offered advice on other options for those who do not wish to have a formal assessment, eg, referral to a local carers' centre or other body.

16. The nature and purpose of a carer's assessment also needs clarification. It follows from our main recommendations that carers should not be seen as needing services to meet their own needs, but resources to enable them to continue to provide caring support. An assessment of a carer should be seen not as a gateway to providing services to the carer in their own right, but as a means of identifying the full support needs of the cared-for person, whether directly or indirectly by maintaining the caring relationship. With the focus on the carer as a provider of care, in partnership with other agencies, the process of assessment for carers in practice should become a process under which:

a. the carer and other support agencies (most often social work and NHS) agree the proportion of care that will be provided by each;

b. other resources required by the carer are identified and agreed; and

c. contingency arrangements are agreed to cover non-availability of the carer (eg, through illness, parenting or other caring responsibilities).

17. The Group discussed the case for adopting a different term for carers' assessments, but concluded that this could create unnecessary legal complexities and confusion for carers and agency staff. The Group believed, however, that it would be helpful to see carer's assessment as a "carer's resource assessment".

18. The Group discussed the range of approaches to assessment. The traditional approach of a structured interview between the subject and the social work professional was seen as limiting and often produced unsatisfactory outcomes, particularly for carers who often felt peripheral to the system. The Group felt that a wider range of approaches to assessment should be encouraged. The emphasis on carers as one element in the overall provision of support to the cared-for person points to the development of more holistic approaches to assessment that look at the total support needs of the situation, rather than distinguishing artificially between the needs of the cared-for person and the carer. In particular, the Group was keen to encourage the use of self-assessment methods which were being trialled in some areas: self-assessment gives the carer an active role, ensures that the information in the assessment is agreed by the carer, and allows local authority social work staff to use their own time and resources more effectively.

19. The needs of carers from minority ethnic and black backgrounds need to be considered explicitly in developing assessment approaches. The Group believes that assessment processes need to become more flexible and culturally sensitive to the needs of carers from minority ethnic and black communities.

20. In order for carers to return to work or continue to work, care services also need to be sensitive to the work/care balance. The Group agreed that there was a need for the assessment process also to offer an explicit opportunity to address the circumstances and needs of carers in relation to work, in order to assist those carers who are able and want to work to be able to do so.

PARENT CARERS

21. The Group is aware that the position of parent carers who look after disabled children (under 18) is not fully integrated into its recommendations for new legislation. The Carers (Recognition & Services) Act 1995, as it applies in Scotland, does not include a right to assessment for people with parental responsibility for a disabled child. However, parents who care for their own child already have a separate right to an assessment under section 24 of the Children (Scotland) Act 1995. The Group recognises that the position of parent carers and their children differs in significant ways from that of other carers, but believes that it would be desirable for parent carers to have as far as possible the same rights to an assessment in their own right as other carers.

YOUNG CARERS

22. There are particular issues around the question of assessments for young carers under the age of 16. The 1995 Act and its supporting guidance suggested that carers under the age of 16 may not in practice be legally entitled to receive an assessment as in view of the Age of Legal Capacity (Scotland) Act 1991 it would probably not be considered as a transaction commonly entered into by young people of that age. The Group felt this possible anomaly should be clarified in order to ensure that young carers, in common with all other carers of other ages, are able to have their needs assessed and additional resources offered to them if necessary.

23. The Group also considered arguments, however, that existing legislation and practice relating to children already provides in practice for the needs of young carers to be assessed and addressed adequately. The Children (Scotland) Act 1995 (section 23) provides for local authorities to assess a child when requested to do so by the child's parents. The guidance issued to local authorities by the Scottish Office on this Act stated that it was good practice for local authorities to consider any request for help made by the child directly and suggested that care managers could encourage the parent or guardian to request an assessment.

24. In seeking to ensure that young carers have equal access to assessment and support, the Group considered some of the basic principles involved. It is vital that the rights of disabled adults to establish families and live as other families and the rights of children to live in families that provide for their needs as children are seen as compatible and that assessment seeks to support this principle. We recognise that there will be difficult questions and that it may be necessary for the right to assessment for young carers to be linked with a requirement to show parental consent, in appropriate circumstances. We would, however, emphasise the need for family assessment as a means to recognise common and individual needs.

25. For young carers therefore, it is particularly important that assessments are carried out in a way that is least disruptive or intrusive to family relationships, and which considers the support needs of the young carer within the context of the needs of the family as a whole. There may still be situations where this is not possible, for example, if family members cannot agree about the need for support: in these circumstances, it is essential that there are recognised arrangements for resolving differences. This might normally be facilitated by local authority social care professionals, although external mediation may have a part to play in some cases.

26. While most assessments of carers and other people are led by local authority social work teams, the needs identified may be met from a variety of sources, including social work, NHSScotland, housing and education services, and benefit support. The Group discussed how different support agencies worked together to minimise the complications for the person assessed, and concluded that current arrangements were frequently fragmented, and regularly involved more than one assessment process during which the same information was collected by different bodies. Too often the assessment process is confusing to the assessed person and appears to be geared to the needs of the bodies carrying out the process. The Group recognises that improved joint working is an aim already being pursued by the Executive and other agencies, encouraged by the Joint Futures Group, and lends its support to this work which should bring major improvements for carers and the people they care for.

27. The Group also identified shortcomings with existing assessment approaches, which sometimes appeared to be driven by the availability of support services rather than the full range of needs expressed by the person(s) being assessed. The assessment process must be regarded by the professionals involved as a means of identifying the full range of support needs felt by the person(s) assessed, rather than a process which - perhaps unintentionally - expresses those needs in terms of the available range of services or solutions. This is an issue, which affects everyone who receives an assessment, not just carers, but the Group believed it should be addressed in guidance to social work and other professionals.

28. In our discussions about assessment, the Group recognised that the success or otherwise of any assessment depended more than anything else on the training, skills and sensitivity of the professional staff involved in the process. This is true for everyone who receives an assessment, but the Group felt it was particularly true for carers as social work and other professionals had generally had fewer opportunities to build up experience with carers and become attuned to the issues carers faced. The Group believed that the implementation of changes in the law to clarify the role and support needs of carers should be supported by comprehensive and adequately resourced training for social work and NHSScotland staff, and staff in other agencies providing direct support.

RESOURCES FOR CARERS

29. In line with our headline recommendations about the role of carers and their legitimate rights to resources to support them in providing care to others, the Group believes the term "services to carers" is inappropriate and unhelpful. We believe the correct focus should be on resourcing carers to enable them to continue their caring.

30. As discussed elsewhere in this report, the Group concluded that the existing structures and underpinning legislation for social work enable a flexible approach to providing carers with support or resources. The Group did not feel it was necessary to make detailed recommendations on particular kinds of support to carers, either direct or indirect, as in practice it believes that the current arrangements are already sufficient if used to the full. The Group decided to make specific recommendations only where it felt that there were issues about resources for carers that were not being properly addressed currently.

BREAKS FROM CARING

31. A key form of support which benefits carers is the provision of short breaks to cared-for people. Such breaks, traditionally referred to as "respite care", are provided to the cared-for person, but clearly directly benefit the carer as well as the person cared for. The Group recognised that the availability of appropriate short breaks, at a time that suits the cared-for person and the carer, is central to ensuring effective support for carers.

32. The Group considered the case for seeking a statutory minimum entitlement to a short break for carers who met certain criteria. On the one hand we recognised the importance of short breaks as one of the most important kinds of concrete support for carers. On the other hand, there was a risk of reducing the flexibility of agencies to support carers in a range of ways and a risk of hindering the development of innovative alternatives to short breaks. There was also concern that the rights of cared-for people should not be infringed. The Group felt that the Executive should consider these issues raised by the possibility of providing for an entitlement to short breaks.

33. The Group believed that the current guidance to statutory and voluntary bodies on the provision of respite care (Scottish Office Circular No SWSG 10/96 and DD 7/96) was still a useful statement of policy and good practice. The Group felt that the Circular should be re-examined and updated in the light of the UK and Scottish Strategies for Carers and other recent policy developments.

34. The Group also felt that carers could benefit particularly from support in identifying and expressing their needs and the needs of the person they care for, through skilled advocacy services. Carers are not alone in having a need for advocacy support, and the Group recognises that this kind of support is not universally accessible across the country. Nonetheless, the Group wished to highlight the particular importance of advocacy support to carers. Advocacy support is particularly important to carers from minority ethnic backgrounds, who may face particular difficulties in approaching agencies.

CARERS FROM BLACK AND MINORITY ETHNIC COMMUNITIES

35. The Group commissioned a consultation exercise with minority ethnic carers in the Edinburgh area in order to increase its understanding of the particular issues faced by carers from black and minority ethnic backgrounds. The outcomes of this consultation reinforced the Group's own impressions that carers from these backgrounds encounter significantly greater difficulties than other carers in finding out about and accessing support. The Group identified a number of respects in which carers from minority ethnic and black backgrounds might be particularly disadvantaged. It was not always easy for carers to access information in their own first language, and the Group also recognised that assessment processes might not be sensitive to important cultural differences which could have an influence on the carer's perceptions of their own role and support needs.

36. The Group concluded that it was essential that guidance to social work and other agencies highlighted explicitly the importance of considering the position of carers from black and minority ethnic backgrounds. The Group heard that the guidance which accompanied the Children (Scotland) Act 1995 was viewed as a good model, and urged the Executive to consider this approach in guidance accompanying future carers' legislation. The Group also considered it vital that support agencies involve representatives of these communities in planning and designing resources for carers to ensure they are sensitive to their particular needs.

CARERS IN RURAL AREAS

37. The Group also considered in detail the particular issues faced by carers in rural areas. The Group recognises that rural areas are not all alike and there are significant cultural and geographical differences between differing rural communities. Ease of access to information and support can be dramatically different in some rural areas. Carers in rural areas also face greater difficulties and costs with transport, and often have fewer choices or alternatives about a wide range of day to day services. Some rural communities are very supportive of those needing care and their carers, while in other communities attitudes may be less open, which can make for increased isolation for carers and the people they care for. There is little information about how carers in rural areas cope, and approaches to supporting carers that are developed in urban or semi-urban areas may not work in rural areas. There is a need for agencies to think imaginatively about how best to provide support to carers in these areas. The Group believes that guidance should emphasise the importance of support agencies consulting carers who live in rural areas in developing local approaches.

REVIEW

38. An important area of concern to the Group was the extent to which carers' support needs, identified through an assessment process, cannot be fully met or met in a suitable timescale by other agencies. This issue, often termed "unmet need", is not unique to carers, and occurs across all services that seek to respond to the needs or demands of others. The Group believed though that it could be a particular issue for carers because carers were not yet widely recognised by local authorities or other agencies as a primary group requiring support, so there was a greater potential risk that where there was pressure on resources, the needs of carers might be neglected or given lesser priority.

39. The Group felt it was essential that the gap between the needs identified and the support or other resources which could be provided immediately was recorded and used as a tool to target and develop future services. The Group was pleased to learn that definitional work on carers and un-met need is shortly to be taken forward by the multi-agency Data Standards Project, sponsored by the Modernising Government Fund, and that carers and service users would be consulted throughout the exercise.

FINANCIAL & RESOURCE IMPLICATIONS

40. The Group considered the potential implications of its recommendations for local authority social work and NHSScotland resources. It is impossible to predict accurately the effect of progressive changes in attitudes, linked with extended statutory rights for carers to assessment and support. But it is clear that if the Group's recommendations were implemented, the intended outcome would be that over time increasing numbers of carers would become more aware of their rights, and would seek information, assessment, and support in greater numbers. The potential resource implications of the Group's recommendations could be seen to fall in three areas.

"FRONT END" / INITIAL IMPLEMENTATION AND SUPPORT COSTS

41. Our recommendations should stimulate the provision of information and advice to increasing numbers of carers, along with wider provision of advocacy support to carers, and more carers' assessments being carried out. Costs in these areas will inevitably rise if more carers come forward to seek support, but the Group believes these costs will increase gradually and will simply reflect carers as a whole receiving support at a level closer to that originally intended under the 1995 Act. Statutory bodies already seek to implement the provisions of the 1995 Act from their current resources, and the main effect of our recommendations should be to stimulate development of these services within the overall context of social care provision.

SERVICES TO CARED-FOR PEOPLE

42. As more carers are assessed, and as a result more services are provided to cared-for people to help support carers, there are clear potential cost implications. The Group believes that changes of this type will also be incremental over a period of time, not immediate, and that the financial implications of volume increases should be addressed in the overall discussions between local authorities and the Scottish Executive about resourcing of social work services. This approach is appropriate as increases in service volumes resulting from improved support to carers cannot be viewed in isolation: there are complex interactions with other elements of community care, and potentially offsetting changes in other areas of expenditure, for example, in spending on long term residential care as many older people can continue to be cared for at home, or from increased use of home-based short break services rather than more expensive residential short break services.

43. The Executive already recognises and accepts the resource implications of shifts in provision of care - for example, in the substantial package of new money announced in October 2000 for initiatives to improve care for older people. This package includes new resources to fund increased volumes of short breaks for carers of older people who have never had a break: in practice these resources may go a long way to meeting the additional volume of services likely to be provided as a result of our recommendations.

RESOURCING CARERS

44. As discussed earlier in this report, the Group does not believe that its recommendations will provide for new kinds of support to be offered to carers, as carers already have rights to most forms of support they may need, although they may not be universally or consistently available. The resource implications under this heading are also about unquantifiable volume increases as more carers are identified, assessed, and their need for resources is established and addressed. Volume changes will probably happen incrementally here too.

45. Cost implications flowing from our recommendations are likely to be progressive and gradual, and should be addressed in the wider context of funding for community care support generally. In many senses, implementation of the Group's recommendations would effectively re-launch the policy underpinning the 1995 Act, with a view to making more of it translate into practice.

46. The approach outlined in the Group's recommendations is about recognising fully and practically the enormous contribution made by carers, and doing the right thing to support carers. The Group believes that its recommendations will have progressive implications for local authorities by stimulating volumes of services and support. These should not be viewed in isolation but be considered in the wider context of funding for local authorities and shifts in service patterns. This can properly be seen as investing in carers in order to maintain a cost-effective and highly personal form of care provision, which would be irreplaceable by local authorities or other agencies. Any financial implications that surface will need to be balanced directly against the incalculably greater financial implications of failing to invest in carers properly, and the real danger of allowing caring to dwindle away.

OTHER ISSUES

DIRECT PAYMENTS

47. The Group was specifically tasked with considering the case for amending legislation to enable direct payments to be made by local authorities to carers. The Carers and Disabled Children Act 2000 provides for carers in England and Wales to receive direct payments to purchase services they receive under that Act. The 2000 Act also provides for parent carers of disabled children, and 16/17 year old disabled children themselves to receive direct payments to purchase care.

48. In Scotland carers cannot currently receive direct payments in their own right as they are not entitled to specific services. Carers may however receive direct payments on behalf of the person they care for if they are explicitly nominated by the cared-for person to act on their behalf. While direct payments may make sense in the context envisaged under the 2000 Act of carers as users of services, in the alternative approach we are proposing for Scotland there is no requirement for carers to receive direct payments as they are not expected to receive community care services in their capacity as a carer. The Group therefore concluded that there was no case for amending legislation to enable carers to receive direct payments.

49. The Group was concerned, however, to ensure that people in the other groups covered by the 2000 Act - parent carers of disabled children under 18, and 16/17 year old disabled children - should have the same rights to direct payments as their counterparts in England. The Group recommends that the Executive consider whether legislative change is necessary to achieve this in Scotland, and if so, introduce such change as soon as possible.

VOUCHERS

50. The 2000 Act also provides for local authorities to run voucher schemes. Local authorities would issue vouchers either to a cared-for person, or to their carer, in order to enable them and their carer to benefit from a break. The voucher would be expressed either in monetary or time terms, and would entitle the cared-for person to purchase short break services or similar care from a body approved by the local authority, at a time and location that suited the cared-for person and their carer. The policy intention appears to be to give carers an entitlement to a break, and give the cared-for person flexibility and choice about how and when to arrange alternative care during the carer's break. These provisions will be brought into effect at a later date by Regulations, following consultation.

51. The Group has not considered these issues in detail. The pattern and tradition of service provision in Scotland may be significantly different, and voucher schemes may have less relevance in Scotland. There is probably a significantly less developed "market" in short break service provision in Scotland than has developed in England. Nevertheless, it would seem sensible for the Executive to consider carefully whether there is a place for voucher schemes of this kind in Scotland.

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