SWSG Guidance Package, Index Ref: F1

29 March 1996

Chief Executives: Unitary Authorities

Copy to: Directors of Social Work and Chief

Social Work Officers: Unitary Authorities

Association of Directors of Social Work

Convention of Scottish Local Authorities

General Managers: Health Boards

General Manager: Common Services Agency

General Manager: State Hospitals Board for Scotland

Chief Executives: NHS Trusts

Appropriate Professional and Voluntary Bodies

Holders of SWSG Guidance Package

Dear Sir/Madam

CARERS (RECOGNITION AND SERVICES) ACT 1995: POLICY AND PRACTICE GUIDANCE

Summary

1. This guidance sets out the Government’s views on the implementation of the Carers (Recognition and Services) Act 1995 which, from 1 April 1996, amends Section 12A of the Social Work (Scotland) Act 1968 by adding new provisions relating to the assessment of carers who provide care for adults.

2. Detailed policy and practice guidance already exists on assessment and care management. The attached policy guidance is intended to supplement that, with regard to what local authorities should be doing to implement the Act. The accompanying practice guide gives advice on how the Act might be implemented. Rather than repeat information which is contained in other reports the practice guide, where relevant, cross refers readers to existing material.

3. This guidance is associated with the Guidance on Respite Care (SWSG10/96) which provides guidance for local agencies on the planning and provision of respite care services to assist people with community care needs and their carers.

Contact Point

4. Any enquiries about the terms of this circular or requests for advice should be directed to Mr Neil Rennick, Room 48C at the above address or by telephone (0131 244 5389). [ To holders of the SWSG Girculars and Guidance Package:- This circular should be placed in Section F1 of the volume containing "F. Community Care (Sections 1-2)" circulars.]

Yours faithfully

GAVIN ANDERSON

Social Work Services Group

CARERS (RECOGNITION AND SERVICES) ACT 1995

POLICY GUIDANCE

Context - Policy Aims and Objectives

1. The White Paper, ‘Caring for People’ has as its second key objective "to ensure that service providers make practical support for carers a high priority" and that "assessment of care needs should always take account of the needs of caring family, friends and neighbours". The provisions introduced by the Carers (Recognition and Services) Act 1995 are consistent with that objective. The Children (Scotland) Act 1995 which will be implemented from April 1997, relates to carers of children. Separate guidance will be issued on these provisions.

2. The Carers’ Act is concerned with carers who are either providing or intending to provide substantial amounts of care on a regular basis. A carer (aged 16 and over) meeting these requirements is entitled, on request, to an assessment when a local authority carries out an assessment (or re-assessment) of the person cared for, in respect of community care services (under Section 12A of the Social Work (Scotland) Act 1968, as inserted by section 55 of the NHS and Community Care Act 1990). The results of the carer’s assessment should be taken into account when the local authority is making decisions about services to provide to the user. Alternative arrangements can be put in place to assess the needs of carers aged under 16. (See Paragraph 11).

3. Local authorities can also assist carers:

(a) by continuing to use their general powers to provide or support services such as carer support groups and information. Such services should be available to all carers without requiring an assessment;

(b) by acting on their continuing responsibility to involve carers who are not covered by the scope of the Carers’ Act in a user's assessment². Section 8 of the Disabled Persons (Services, Consultation and Representation) Act 1986 requires the local authority to have regard to the ability of a carer to provide or continue to provide care when deciding what services to provide to the disabled person; where a carer is requesting help, but the user refuses an assessment local authorities are reminded of their responsibilities arising from Section 12A of the 1968 Act. Section 12A(4) of the 1968 Act allows for local authorities making assessments, to make decisions about the services required, as mentioned in Section 4 of the 1986 Act, without the person concerned having requested them to do so.

Scope of the Provisions Introduced by the Carers Act

4. The provisions introduced by the Act cover adults and young people (see paragraph 11) who provide or intend to provide a substantial amount of care on a regular basis for people in receipt of, or who appear to a local authority to require, community care services. "Community care services" are taken to be those as defined in section 5A of the 1968 Act, inserted by section 52 of the 1990 Act, (ie services provided under Part II of the 1968 Act or under Sections 7, 8 and 11 of the Mental Health (Scotland) Act 1984 other than those for children).

5. For this purpose the term "carer" includes people who may or may not be relatives and who may or may not be living with the persons for whom they are caring. Excluded from the definition of carer are volunteers working for voluntary organisations and anyone who is providing care by virtue of a contract of employment or any other contract. This would exclude anyone who is providing personal assistance for payment, either in cash or kind. Carers in receipt of the Invalid Care Allowance or expenses would not automatically be excluded and local authorities will have to consider what informal contribution towards a carer’s expenses are reasonable.

6. It is important to recognise that the effects of these new procedures will be gradual. Many authorities already offer carers an assessment; the new legislation enshrines good practice in statute.

7. The results of a carer's assessment are linked to the local authority's decision about services for the user. Local authorities have powers and duties to provide community care services to meet the assessed needs of people being cared for. However, the aim is to encourage an approach which considers support already available from family, friends or neighbours, the type of assistance needed by the person being assessed; and how and whether the current arrangements for care can sustain the user in the community. Many of the services which assist carers are provided to the user. Views and circumstances of users and carers may be distinct but the nature of caring requires that they are considered together and reflected in the services to be provided to the user.

8. The Department considers that the terms `regular' and `substantial' in the expression, `a substantial amount of care on a regular basis', should be interpreted in their everyday sense since Parliament has not provided otherwise in the Act.

9. The reference to "a substantial amount of care on a regular basis" means that not all carers will be eligible for an assessment under the Act. Paragraph 6 of the Practice Guidance on the Act suggests some factors which local authorities should consider when determining whether somebody is providing substantial and regular care. Annex 1 of the Practice Guidance offers as brief summary of research on different types and levels of care. However, it will be for local authorities to form their own judgement about what amounts to regular and substantial and to make their views known. In so doing, they may need to make decisions about the relative needs of carers in their area to ensure that those with regular and substantial caring responsibilities can receive, where requested, an assessment under this Act. The Act reinforces existing good practice; over bureaucratic responses or procedures should be avoided.

10. Local authorities should ensure any eligibility criteria (or other statements) which describe levels of need which they will meet under current community care legislation also reflect their responsibilities under this Act and allow the consideration of a carer's ability to provide and continue to provide care.

Young carers

11. Many young people provide care for other members of their families and therefore to determine what services may be required they need to be assessed with the people they care for. Under current legislation, carers under the age of 16 years do not have an entitlement to request an assessment under the provisions introduced by the Carers’ Act. This arises because the Age of Legal Capacity (Scotland) Act 1991 provides as a general rule that children under that age do not have the capacity to enter into a transaction having legal effect. In such cases, the parent or guardian would have to act on behalf of the children. Consideration may be given to that position, or to reform by legislative means. However, it may be that local authorities can assess the needs of young carers under the powers in section 12(1) of the Social Work (Scotland) Act 1968 as part of their duty to promote social welfare. Where young carers are being assessed authorities will need to ascertain and give due weight to their views, wishes and feelings. The authorities should have regard to the need to promote the children’s upbringing by their families.

12. It will be important to provide integrated services through clearly identified links between community care and children's services so that adequate support is available for the family via community care services for the adult and children's services for the child. It will be up to local authorities to make the relevant management arrangements according to local structure and organisation. They should, however, ensure that staff have sufficient knowledge of the range of the Social Work Department's responsibilities and provision so that they can make appropriate arrangements to support families where young people have assumed caring roles.

When to do a Carer's Assessment under the Carers (Recognition and Services) Act

13. Local authorities should carry out a carer's assessment when requested by a carer

(a) at the time of a user's assessment and the carer is:

n a carer as defined in paragraph 5

n and either providing a substantial amount of care on a regular basis

n or intending to provide a substantial amount of care on a regular basis.

(b) either as part of a review of the circumstances of the user or when because of change in circumstances of either the user or carer, a user is being re-assessed and the carer is otherwise eligible

14. By including carers both providing or intending to provide care, the Act covers those carers who are about to take on substantial and regular caring tasks for someone who has just become, or is becoming, disabled through advancing age, accident or severe physical or mental ill health. Local authorities and health boards will need to ensure that staff involved in hospital discharge arrangements are aware of the Act and that discharge procedures take account of its provisions. Carers should be involved at the outset in planning for discharge.

Carers with community care needs

15. Carers may have community care needs in their own right by reason of their old age, physical or mental ill health, physical or learning disability. Where it appears to the local authority that a carer may have a need for community care services (see paragraph 4), then the local authority should carry out an assessment under Section 12A of the Social Work (Scotland) Act 1968.

Carers who either do not want or do not qualify for a carer's assessment

16. It should not be assumed that all qualifying carers will want their own assessment. Local authorities should continue to follow current policy and practice guidance on involving carers when either regular and substantial carers do not want their own assessments or when carers are providing care on less than a substantial and regular basis.

Information

17. Local authorities should ensure that their published information about community care tells carers about their right under this Act; describes which carers will be eligible for an assessment and how the authority's assessment procedures work.

18. Many carers with substantial caring responsibilities may not know about their right under the Act. Local authorities should ensure that it becomes part of routine assessment practice to inform any carer who appears to be eligible under this Act of his or her right to request an assessment.

The Assessment

19. The focus of the carer's assessment for the purposes of this Act should be on the carer's ability to care and to continue caring. The assessment should take account of the carer's circumstances, age, views and preferences and the amount of support available to him. It should not automatically assume a willingness by the carer to continue caring, or to continue providing the same level of support.

20. Where the carers are young persons the impact of caring may be different as it may affect their health and development by the restrictions which providing regular and substantial care might place on their educational and leisure opportunities. This should be carefully considered as part of the assessment. It is equally important that the assessments focus on how best to enable an ill or disabled parent (or other adult family member) to live independently so that the parent's ability to parent is supported rather than undermined. Consideration should be given as to whether the young carer is a "person in need" for purposes of section 12 of the Social Work (Scotland) Act 1968.

21. Many local authorities already offer carers an assessment. Recent studies [ The use of this term is not uniform. Here it refers to the practitioner who is carrying out the assessment.] have shown that carers are not always aware either that they have been offered or that they have had an assessment. Authorities should ensure that good practice and adequate recording are developed so that both carers and professional staff share the same understanding of the process which has taken place and its results (see paragraph 34). It should not be necessary to create elaborate systems and procedures to achieve this.

22. It should not be assumed that any request by a qualifying carer for an assessment under this Act can only be met by a separate assessment. In some cases it may be appropriate to carry out the carer's assessment at the same time as the user's assessment, whereas in others carers and/or users may want the opportunity for private discussion with the care manager^*. Authorities should discuss with the carer how the assessment is to be done and agree whether a separate assessment or an assessment with the user is appropriate.

Equal Opportunities

23. Existing guidance 1-2 emphasises the importance of ensuring that assessment is equally available to all members of the community and that

(a) assessment procedures should be readily accessible to all potential users and carers

(b) where individuals have communication difficulties arising from disability and/or sensory impairment, authorities should take active steps to make suitable arrangements to ensure that, in this case, the carer, can fully participate in the assessment

(c) authorities should also ensure that carers from black and ethnic minority backgrounds, whose first language is not English, can participate fully in any assessment.

Authorities will need to respond sensitively to the particular circumstances of carers from all backgrounds, ethnic origins and different lifestyles.

Inter-Agency Working

24. Health, housing and education authorities can have an important role in identifying carers, including young carers, in need of assistance. Section 12A of the Social Work (Scotland) Act 1965 requires Social Work Departments to bring apparent housing and health care needs to the attention of the appropriate authorities and invite them to assist in an assessment of a person's need for community care services. Authorities should, therefore, already have collaborative arrangements in place for obtaining the input of health or housing, when appropriate. Social work departments should work closely with local education authorities when carrying out assessments of young carers. A carer's assessment may identify education, health or housing needs. Social work authorities and all other agencies will need to ensure that existing inter-agency arrangements are appropriate for referrals resulting from a carer's assessment.

NHS Involvement

25. Increased patient involvement in purchasing is a specific objective in the 1996/97 NHS Priorities and Planning Guidance [ ] which states:

"In all contacts with the Health Service, ensure patients are treated with respect and dignity". "Improve the quality of communications with patients including informing them in advance of the type of accommodation they can expect on admission to hospital ....." (Page 9).

Collaboration with local authorities in the implementation of the Carers (Recognition and Services) Act is, therefore, part of the achievement of existing NHS priorities.

26. The guidance, "NHS Responsibilities for Continuing Health Care" [ ] provides a further opportunity for local authorities to review with NHS commissioning agencies and NHS providers how they might best involve carers' in joint assessment of local and individual needs. The guidance contains over 10 specific references to the involvement of patients’ advocates and/or carers in the care assessment considerations.

27. Primary care staff, including GPs and community nurses through their contact with users and carers, are in a good position to notice signs of stress, difficulty or rapidly deteriorating health particularly in carers. GPs, nurses and other members of multi-disciplinary teams, may be able to assist in an assessment of a carer’s ability to provide and to continue to provide care and in considering what additional medical and nursing services may be required by the person being cared for. When making a referral for a user's assessment primary care staff should be able to inform the carer that they may also have a right to request an assessment; and will be well-placed to encourage carers whom they consider will benefit most to take up the opportunity. Social Work Departments should make sure that primary care staff have relevant information about social work criteria and know who to contact to make a referral. GPs, nurses and other members of multi-disciplinary teams, may be able to assist in an assessment of a carer's ability to provide and to continue to provide care.

The Decision

28. The Act requires the local authority to have regard to the results of carers’ assessments into account when making decisions about services to be provided to the user.

29. The decision about services to be provided should be informed by the assessment of carer and user taken together. Both user and carer should be fully involved in any discussion about the results of the assessment and proposed care plan. This should describe needs to be met by the local authority, services to be provided to the user, how they will assist the user and where relevant, how services provided to the user will assist the carer. The relevant user services will be those referred to in Section 5A(4) of the Social Work (Scotland) Act 1968 as inserted by Section 52 of the NHS and Community Care Act 1990. Young carers may be entitled to receive services under section 12(1) of the Social Work (Scotland) Act 1968 or section 2 of the Chronically Sick and Disabled Persons’ Act 1970 and, from 1 April 1997, under the Children (Scotland) Act 1995.

30. The care plan and results of assessment should be confirmed in writing or in a format which is accessible to both user and carer. It is important that local authorities record the results of the assessments and that users and carers are informed of complaints procedures. Under section 5B of the Social Work (Scotland) Act 1968 (introduced by section 52 of the National Health Service and Community Care Act 1990) carers may complain in their own right about a local authority’s failure to undertake an assessment under the terms of the 1995 Act, or about the conduct of the assessment procedure. Carers can also complain on behalf of service users about the types and levels of community care services provided, including those provided in response to a carer’s assessment.

REFERENCES

1 - 2 Assessment and Care Management SW11/1991, HHD/DGM(91)40

Care Management and Assessment Managers' Guide - SSI/SWSG, HMSO 1991

Care Management and Assessment Practitioners' Guide - SSI/SWSG, HMSO 1991

3. `Caring Today' - Findings of a National Inspection; `What Next for Carers' - Report of an SSI Project - Department of Health, Social Services Inspectorate 1995.

4. Priorities and Planning Guidance for the NHS in Scotland 1996-97

NHS in Scotland, Management Executive Letter, 3 August 1995

5. NHS Responsibility for Continuing Health Care 6 March 1996 -

NHS MEL(1996)22.

CARERS (RECOGNITION AND SERVICES) ACT 1995

PRACTICE GUIDE

Introduction

1. The practice guidance follows the ordering of the policy guidance and the Act itself. Recent SSI reports on carers and young carers address a number of issues, including assessment, in more detail than this guidance. These reports are referred to frequently; other useful material is listed at the back.

2. Most carers are adults, many are older people caring for another older person. These carers' lives will be significantly affected by caring for an ill or disabled person. Recent work has drawn attention to the situation of children and young people who take on considerable caring responsibilities within families. While young carers (under 16) do not have the right to request an assessment, under the terms of the Act, on their own behalf, (see paragraph 11 of Policy Guidance), proper consideration should be given to their needs. The guidance goes into some detail about assessment of young carers as this has not been dealt with previously in guidance.

Practice aims and objectives

3. A shift in practice towards :

• greater recognition of carers; paying attention to and taking account of what they say

• an assessment of the "caring system" which considers the range of support available to service users and carers and encourages intervention at the right time without destroying existing informal support networks

• an integrated family based approach which does not see either the service user or carer in isolation

• improving practice; not increasing bureaucracy and without an elaborate procedure. Trying to ensure that carers are not having repeatedly to provide the same information.

Scope of the Provisions introduced by the Act

4. The provisions produced by the Act cover adults and young people who provide or intend to provide a substantial amount of care on a regular basis for people in receipt of, or in need of, community care services (see paragraph 4 of the Policy Guidance).

5. For this purpose the term "carer" includes people who may or may not be relatives and who may or may not be living with the person for whom they are caring. (See paragraph 5 of Policy Guidance).

6. The Act describes local authorities' duties in relation to carers who provide or intend to provide a substantial amount of care on a regular basis. (See paragraph 9 of Policy Guidance). There has been a considerable amount of research undertaken about carers and caring.

Annex 1 provides a precis of some of this research which identifies factors associated with different types of carer and caring. Information about a carer's involvement should be gathered as part of a user's assessment. This will enable the following questions to be answered which may indicate whether somebody is providing substantial and regular care.

• What type of tasks does or will the carer willingly undertake?

• How much time does or will the carer spend providing assistance for the user?

• How much supervision does the user require to manage her/his life?

• Is this (or will it be) a continuing commitment for the carer?

7. The nature of the caring task will vary according to the disability or illness of the user, with some conditions requiring, for example, intensive supervision or emotional support rather than physical or personal care. Some users with mental health or substance misuse problems or with conditions such as neurological disorders, dementia, cancer or HIV/AIDS will have care needs which vary over time but may present regular and substantial burdens for carers. Arrangements should be in place for the regular review of both service users and carers needs.

Information

8. Though many authorities offer carers an assessment, often carers do not know that they could have their needs assessed. Similarly some carers are not clear when their needs had been assessed as this is not made explicit. The process, therefore, needs to be formal insofar as it is:

(a) documented

(b) mutually understood by user, carer and care manager and the results of the assessment and the care plan confirmed in writing.

A Way Ahead for Carers and Caring Today give examples of local authorities' approaches to providing information for carers and underline the importance of a strategic, targeted approach¹.

The Assessment

9. Some Key Issues

9.1 The assessment is not a test for the carer. It should not be prescriptive but recognise carer’s knowledge and expertise. The assessment should listen to what the carer is saying and offer an opportunity for private discussion in which the carer can candidly express views including whether he or she will willingly provide care.

9.2 In some cases it may be appropriate to offer a private discussion to both user and carer. The user and carer will need to be assured about confidentiality but it will always be important to reach agreement about how the results of such discussions will be shared with either the user or carer. Carers should be involved in the arrangements for monitoring and in all reviews. Particular aspects of the carers’ circumstances may point to the need for regular review². Carers value the co-ordination of services achieved by care management and appreciate having named persons whom they can contact.

9.3 Carers often give most of the assistance needed by the person for whom they care, and may only want a fairly small amount of help to enable them to continue caring. A PSSRU study³ found that some of the most cost effective care packages were where carers continued to perform caring tasks but were given sufficient support and respite to enhance their well being and maintain their own health. Equally it is important that care managers do not make assumptions about carers' willingness to undertake the range of caring tasks, particularly those related to intimate personal care. This is highlighted in a discussion of spouse carers⁴ which emphasises the difficulties faced by some husbands or wives when their ability to cope with changed behaviour or personality and/or tasks involving physical intimacy is taken for granted.

9.4 Carers and users are not a single, homogenous group. Practitioners need to be sensitive to relationships between users and carers and to some of the stresses and difficulties, as well as benefits, of caring. Some situations will require skilful counselling and mediation, using core social work skills.

9.5 Information on charges for services and financial assessment should be clearly explained to the user and carer. A financial assessment is separate from either an assessment under Section 12A of the Social Work (Scotland) Act 1968 or under the Carers (Recognition and Services) Act⁵. Any charges for services provided to the person being cared for should be based on the user’s financial assessment only. Carers, with the exception, in certain circumstances, of spouses, cannot be charged for services provided to the user.

9.6 When undertaking a carer's assessment it is important to recognise the value of early intervention and on-going support in preventing deterioration in the carer's and user's welfare. In many instances, early access to advice and practical help can minimise the subsequent need for increased levels of services. A swift response to requests for emergency, short-term care can alleviate carers' anxieties and avoid a possible breakdown in the caring arrangements and need for long term care.

9.7 By including carers who are intending to provide regular or substantial care, the Act provides an opportunity to consider fully the circumstances of carers in employment who are taking on this type of caring commitment. Many carers provide regular and substantial care while they are in employment (elsewhere).

9.8 In assessing the carer' ability to care or continue to care, care managers should not assume a willingness by the carer to continue caring, or to continue to provide the same level of support. They will wish to bear in mind the distinction between caring about someone and caring for them. Many carers continue to care deeply about a person even though their ability to care for them may change.

10. Carers living in rural areas will be affected by the type of transport available and increased travelling times and so may have extra difficulties in gaining access to services and facilities. Care planning should take account of how best to support carers in such circumstances.

11. Tension and conflict between user and carer

11.1 Illness and disability often create stress in family relationships and may give rise to significant tension and conflict between users and carers. Care managers will be working with complex relationships. Assessment, in such cases, is a skilful process the aim of which is to support family and other caring relationships and to assist individuals in finding their own solutions. Conflict may arise over the user's refusal of services. It can be helpful, particularly if a multi-disciplinary team is already involved, to use two workers to negotiate a resolution.

11.2 If a user refuses to co-operate with an assessment or re-assessment of his or her needs, or to accept services suggested by the carer’s assessment, care managers will need to work closely with the family, user and carer to seek to resolve the situation. In such circumstances it is important that care managers see carers as individuals who may have a need for services and whom they therefore may be able to assist in their own right. A carer may appear to have a need for community care services and so be eligible for an assessment under Section 12A of the Social Work (Scotland) Act 1968.

Many such situations will be resolved through discussion and negotiation, but it is important that care managers are aware of their functions outside of this Act to assist carers in these very difficult circumstances.

11.3 Tension can arise when either the user's or the carer's ability to communicate is affected by a learning, physical or mental disability. This can also be the case where either the user's or carer's first language is not English and one interprets for the other. Care managers need to communicate effectively with both users and carers so that both perspectives are known. A carer, for example, may have a long history of involvement which must be taken seriously. There are ways of overcoming communication difficulties so that all views can be sought⁶.

11.4 Some carers find it difficult to relinquish the care of the person for whom they are caring. What Next for Carers (Chapter 4) discusses how practitioners (and other carers) might assist carers who are reluctant to accept help. A useful model for intervention is one which aims to maximise the disabled person's independence and support the carer in relinquishing some of the care. Conflict of interest is fully recognised from the view point of both people⁷.

11.5 The care plan should be a result of careful discussion with the user and carer and where differences arise, these should be recorded. Care should be taken to ensure that when requested by the user or carer, information given remains confidential and where there are conflicts of interest, interviews should be recorded separately on the file. In some cases thought is required as to whether the carer and user should have separate records in view of possible conflicts of interest and confidential information each may give⁸.

11.6 Tension and conflict can result in physical or other forms of abuse. Should this occur. No Longer Afraid - The Safeguard of Older People in Domestic Settings (HMSO 1993) provides advice on developing policy and practice to respond to cases of older people.

12. Equal Opportunities

12.1 All caring situations are unique and, as such, are influenced by personal and family lifestyles, relationships, religions and cultural factors. Assessments should take account of the cultural context and relationship within which caring takes place.

12.2 At the start of the assessment, ascertain whether there are any language, communication and comprehension difficulties and take steps to overcome these. A range of communication methods including British Sign Language, Polartype and Deaf, Blind Manual should be considered.

12.3 Local authorities should have arrangements in place so that care managers can bring in appropriate personnel which may involve the use of interpreters and/or signers when necessary. It is important that interpreters and signers receive appropriate training and understand the nature of their task. It is not appropriate to assume that users and carers should interpret or sign for each other.

12.4 There are concerns that some groups of carers are less well served than others, this included carers of very elderly people and of people with mental health problems.

12.5 Effective consultation with black and ethnic minority communities can improve assessment and services. Practical examples of some initiatives to consult with black and minority ethnic communities are described in Chapters 3 and 6 of What Next for Carers? and Chapters 6 and 8 of Caring Today.

13. Inter-Agency Working

13.1 Strategic implementation of the Act will involve agencies besides social work. Future Community Care Plans and Community Care Charters should therefore cover the Act.

13.2 Voluntary organisations play an active role in supporting carers. Effective working between statutory and voluntary agencies can assist the implementation of this Act.

13.3 It will be important that local authorities use existing joint planning arrangements to ensure that effective systems are in place to implement the Carers Act as well as to discuss their judgement of what amounts to "substantial and regular care" with local carers groups.

13.4 Some carers will now have a right to request an assessment in anticipation of a patient's discharge from hospital. This reinforces the need to involve all carers in hospital discharge planning to ensure a smooth transition from hospital to community care and to ask carers their views and include them in discussions once discharge planning has begun and in any planned admissions for elective surgery.

Young Carers

14. This section of the practice guide concentrates on assessments of young carers (see paragraph 11 of the Policy Guidance). SSI, as part of its development programme on young carers, has recently published Young Carers: Something to Think About, a report of four SSI workshops held between May and July 1995. The report addresses more general questions of policy and practice concerning young carers.

15. Recognition

15.1 A young carer's (aged 16 and over) right to request an assessment and a parent or guardian’s right to request an assessment on behalf of a young carer (aged under 16), under the Carers Act occurs at the time of the user's assessment. The community care assessment will, therefore, be the starting point for an assessment of a young carer. Local authorities might wish to consider undertaking an assessment of a young carer’s needs under their powers in section 12(1) of the Social Work (Scotland) Act 1968. Such an assessment may be undertaken at any time when assistance appears to the local authority to be required, under the terms of the 1968 Act.

15.2 The provision of community care services to adults being cared for by young carers, should ensure that young carers are not expected to carry inappropriate levels of caring responsibilities. It should not be assumed that children should take on similar levels of caring responsibilities as adults. Children and young people are at an earlier and important stage of development. Denial of proper educational and social opportunities may have harmful consequences on their ability to achieve independent adult life.

15.3 Where there are children in the family, the care manager should, by careful exploration, establish how the disabled person is assisted with his/her care needs and parenting responsibilities and cover whether or how the children might be helping.

15.4 If it appears to the care manager that a child or young person is providing regular and substantial care and the young carer or the child’s parent or guardian do not request an assessment, the care manager should still consider whether there is a need to assist or relieve the child either through the provision of community care services for the user or through the provision of services to promote the welfare of the child. There may be some young carers who do not provide substantial and regular care but their development is impaired as a result of their caring responsibilities. In such situations local authorities will wish to consider whether they should exercise their existing duties towards children in need.

15.5 Social Work Departments should ensure that any young carers known to them have information on local arrangements for community care and children's services and that they are encouraged to discuss any concerns informally with social work.

16. There may be differences of views between young carers and their parents which have not been expressed. Care managers will need to be alert to the possibility that children's worlds are largely determined by their parents and that children may feel that their views have no weight. Equally they may be afraid that any admission of the difficulties may lead to a break up of the family. Such potential conflicts of views and interests may be very difficult to recognise and manage, especially for staff who have no experience of working with children. Arrangements may have to be made to ensure that the necessary range of skills and knowledge is made available to the whole family. It may have to be explained to families that children's divisions of Social Work Departments provide a wide range of services to help families.

ANNEX 1

CARERS (RECOGNITION AND SERVICES) ACT 1995

PRACTICE GUIDANCE

TYPES OF CARER

1. This annex provides a brief summary of research, which is described in much more detail elsewhere⁹. A secondary analysis of the 1985 General Household Survey undertaken by the Social Policy Research Unit at the University of York identified two different sorts of caring activity;

- those carers who are heavily involved* and providing a great deal of personal and/or physical care;

- those who might be more accurately described as `helpers' who provide practical help for friends, neighbours and relatives and who do not usually live in the same household.

*NB: The term "heavily involved carer" is not intended to define a carer providing "substantial care on a regular basis" under the terms of the 1995 Act. The summary set out below aims to assist local authorities in establishing their eligibility criteria.

2. It is from this analysis a figure of 1.6 million heavily involved carers is derived. An analysis of the 1990 General Household Survey broadly confirmed these figures and indicated that those carers who were heavily involved were now even more so.

3. Parker and Lawton developed a typology of caring activities based on the eight tasks defined in the GHS survey

• Help with personal care eg. dressing, bathing, toileting.

• Physical help eg. with walking, getting in and out of bed or up and down stairs.

• Help with paperwork and financial matters.

• Other practical help eg. preparing meals, doing shopping, housework or household repairs.

• Keeping the helped person company.

• Taking the helped person out.

• Giving medicine, including injections, changing dressings.

• Keeping an eye on the helped person to see that s/he is all right.

4. The analysis also documents a wide range of involvement in caring, from people providing under two hours of help a week to those providing a hundred or more. People providing substantial hours of help, tended to undertake a greater range of tasks; personal and/or physical care were highly associated with long hours of care. Of people providing 20-49 hours a week, 58% were providing personal and/or physical care. Of those caring for 50-99 hours, the figure is 75% and for over a hundred hours it is 85%. The analysis also found that typically such carers were more likely to be sole carers, receiving little help from others, were living in the same household and were caring for someone with a mental impairment.

5. The "heavily involved carer" is likely to be someone who

• provides long hours of help;

• carries out a range of helping activities;

• is likely to provide both personal and physical assistance;

• is more likely to be looking after someone in the same household;

• is more likely to be caring for someone with a mental impairment;

• is more likely to be caring without any help from others.

5. This analysis can be criticised for potentially excluding carers of people with chronic mental health problems, eg. Schizophrenia, because of its emphasis on tasks. The provision of personal care is not a major feature of caring for someone diagnosed as mentally ill. Responsibility and supervision can be a prominent feature. Other factors, for example, being the sole carer; caring for someone in the same household are likely to be common with other carers¹⁰. The circumstances of carers of people who misuse drugs and alcohol may be similar.

6. Carers of people with dementia often provide both personal care and supervision¹¹.

7. The analysis also shows that apart from those supporting people aged over 85, those caring for children (whether young or adult) and spouses in the same household are the most likely to be heavily involved and that almost the same proportion of male carers as female carers are heavily involved.

ANNEX 2

BIBLIOGRAPHY AND REFERENCES

A Way Ahead for Carers - Department of Health, Social Services Inspectorate 1995.

Caring Today - Department of Health, Social Services Inspectorate 1995

What Next for Carers? - Department of Health, Social Services Inspectorate 1995

Young carers Something to Think About - Department of Health, Social Services Inspectorate 1995

Carers National Association Carers Code - 8 key principles for health and social care providers

Fife Carers Strastegy and Action Plans

Lothian Carers Strategy - Towards 2000

Strathclyde, Carers Forum Code of Practice

Carers Claim of Rights - Central Regional Council

References

1. Information on Community Care Post April 1993 Department of Health 1994.

2. See What Next for Carers Chapter 4 page 25

3. Care Management and Health Care of Older People, D Challis et al, PSSRU, Canterbury 1995.

4. Similarities and Differences between Informal Carers K Atkin in Carers Research and Practice, HMSO 1992.

5. Discretionary Charges for Adult Day and Domiciliary Social Work Services. Final Scottish Office guidance circular to issue shortly.

6. Inspecting for Quality: Standards for the Residential Care of Elderly People with Mental Disorders - Department of Health, Social Services Inspectorate, HMSO 1993.

Synthesises practice and research with reference to obtaining the views of older people with dementia.

Oi, Its my Assessment, obtainable from People First, 207-215 Kings Cross Road, London WC1X 9DB, describes some ways of conducting assessments with people with learning disabilities. See also paragraph 12, Equal Opportunities, of this guide.

7. Carers in the Service System J Twigg in Carers Research and Practice

HMSO 1992.

8. SWSG SW1; Code on Confidentiality of Social Work Records, 6 February 1989.

SWSG SW2, Access to Personal Files (Social Work) (Scotland) Regulations 1989, 10 February 1989.

9. Counting Care: numbers and types of informal care. Parker in Carers Research and Practice - HMSO 1992

10. Families Caring for People Diagnosed as Mentally Ill - Perring, Twigg and Atkin, HMSO 1990

11. Family, Services and Confusion in Old Age - A Levin et al. Avebury 1989

Department of Health publications are available from:

Department of Health

PO Box 410

Wetherby

LS23 7LN

Telephone: 01937 840 250

Fax: 01937 845 381