Report on the Review of the Mental Health (Scotland) Act 1984

Chapter 16

RIGHTS OF INFORMAL CARERS

Introduction

1. Relatives are currently given certain rights and responsibilities under the 1984 Act. The 'nearest relative' may initiate detention or guardianship proceedings, may oppose an application by the mental health officer (MHO) for long term detention or guardianship, or may seek to have a detained patient discharged. There are duties to give the nearest relative information about proceedings taken under the Act. Where a patient is detained under emergency measures (s24), either a relative (not necessarily the nearest relative) or an MHO must consent to the detention, unless this is not practicable in the circumstances.

2. We discuss the role of relatives in relation to consent to detention in Chapter 7. In addition to reviewing these, we have also given consideration to how carers should be defined in the new Mental Health Act, and how that Act could help carers in their role and promote understanding and respect for the work that they carry out.

3. We propose a more flexible arrangement which would allow a relative or informal carer to be appointed as a 'named person', with rights to information and involvement in any proceedings under the Mental Health Act.

The nearest relative in the 1984 Act

Relatives and nearest relatives

4. At present, s53 of the Mental Health Act contains a lengthy description of what a 'relative' is and how a 'nearest relative' may be defined.

5. In essence, despite the elaborate drafting of the section, the reference to the person 'who is caring for the patient or was so caring immediately before the admission of a patient to hospital, or his reception into guardianship' means that the 'nearest relative' is the carer most closely related to, or married or cohabiting with, a patient subject to compulsion under the 1984 Act. There is a hierarchy of 'nearness' given in s53(1), and the nearest relative will normally be the person nearest the top of the list, unless they are not caring for the person, in which case the carer nearest the top of the list will be the 'nearest relative'. The carer, however, must fall within one of the categories of relative outlined in the section.

6. We have heard evidence that there are several problems with the way the nearest relative is defined.

Who may be the nearest relative

7. The current Act distinguishes between marital relationships and other types of relationships. A husband or wife is automatically the nearest relative, unless they are separated from the service user. Other partners may only achieve the status of 'spouse' after cohabiting for a period of six months³⁰.

8. A homosexual or lesbian partner cannot be treated as a 'spouse'. They therefore necessarily fall under the provisions of s53(6). A person who comes under this latter section can only be treated as a 'relative' after cohabiting for five years, even if they are the person's primary carer, and can only be treated as a 'nearest relative' for the purposes of the Act if no other nearest relative from the list given in s53(1) is caring for the service user. A person coming under s53(6) cannot gain the status of 'spouse', no matter how long their relationship with the service user.

9. In the Adults with Incapacity (Scotland) Act 2000, the definition of nearest relative in the 1984 Act is employed, but there is an additional provision that a person of the same sex who has been living, for a period of not less than six months, with the adult in a relationship which has the characteristics of the relationship between husband and wife, is given equivalent status to a spouse.³¹

10. The 1984 Act also lacks flexibility regarding the role of distant family members or unrelated people who may care for the service user. Again, they will have to have lived with and cared for the person for five years before they may qualify as a 'nearest relative'. A carer of four years' standing could thus be overruled by a relative who does not care for the service user. We do not believe that this is appropriate.

11. We also take the view that, in general, a hierarchy of family relationships as given at s53(1) is unlikely accurately to reflect the great variety of ways in which families may be living.

12. We believe that many of these difficulties are based upon the fact that the Act is specific about which family members have the right to be considered as nearest relatives, and does not mention certain possible significant others. In our view the rights of relatives and carers under the new Mental Health Act should be based primarily upon the existence of a caring or supportive role, rather than a family relationship.

Replacement of nearest relative

13. The powers attached to the nearest relative by the 1984 Act mean that it is important that a suitable person is given this designation. However, when the nearest relative is an inappropriate person it is extremely difficult to have him or her changed.

14. The reasons why a nearest relative is inappropriate may vary. The service user may not in fact have a close relationship with the nearest relative, or there may even be hostility between them. Indeed on rare occasions a nearest relative may be physically, sexually or otherwise abusive towards the service user. It is clearly inappropriate that in such cases the person should remain as nearest relative.

15. Currently, an application for the nearest relative to be changed may be made to the sheriff by the nearest relative, a person with whom the service user lives or an MHO³². The service user him or herself does not have the right to petition for the nearest relative to be changed.

16. There are three grounds upon which a nearest relative may be changed:

• the patient has no nearest relative, or it is impractical to find a nearest relative; or
• the nearest relative cannot act as such because of mental disorder or another illness; or
• the nearest relative has made the application, and he or she no longer wishes to act as nearest relative.

17. However, there are certain significant omissions from this list. The nearest relative cannot be changed because:

• the service user does not wish him or her to be the nearest relative; or
• he or she is unsuitable for a reason other than illness; or
• he or she is not acting in the best interests of the service user.

18. This may be at risk of challenge under the European Convention on Human Rights. In a case brought under the Convention, the fact that the applicant, despite having good grounds to do so, was not able to change her nearest relative under the English Mental Health Act was ruled in breach of Article 8 of the Convention³³. However, it is important here to note that the general concept of the nearest relative having powers under the Act was not ruled to be in breach.

19. The Adults with Incapacity (Scotland) Act 2000 allows an incapable adult to apply to the sheriff to change the nearest relative or to stop certain information being disclosed to the nearest relative³⁴. A new person can be made nearest relative if the sheriff is satisfied that 'to do so will benefit the adult'. The grounds are not otherwise defined in the Act. However, the nearest relative must still be a person eligible to be a 'nearest relative', under the terms of the 2000 Act.

Proposals for the named person

20. Having considered these various concerns, we have concluded that there is a need for a new framework for families and carers in the Mental Health Act.

21. We believe that there are two separate issues which the Act must address in relation to relatives and carers. Many of the powers given to nearest relatives in the 1984 Act are intended to allow that person to represent the interests of the service user, for example by objecting to detention. This is essentially a role of advocacy and support.

22. However, there are also rights which we believe should apply to carers in their own right, to assist them in carrying out the caring role, particularly in relation to access to information. We discuss these later, and confine our discussions at this stage to the role of representing the interests of the service user.

23. Our proposed reforms have the following aims:

• To give service users a greater opportunity to specify the person they wish to represent their interests, while providing protection against decisions taken which are the result of impaired judgement caused by illness.
• To base legal rights and responsibilities more closely on the actual role played in relation to the service user.
• To ensure that statutory definitions are flexible, and reflect the range of family relationships.

24. We propose procedures to identify an individual who would have the following rights in relation to a service user:

• The right to seek an assessment of the service user's needs, including the possible need for compulsion.
• The right to be notified and consulted in relation to applications for compulsory measures.
• The right to be heard by the tribunal in relation to any such application.
• The right to appeal against a decision to impose compulsory measures.

25. We call this individual the 'named person'.

26. In accordance with the principle of Participation, we propose that service users should have the right to nominate the person they would wish to act as their named person. Where there is no nominated person, the primary carer would assume the rights and responsibilities of the named person. Should there be no primary carer, the person who is the nearest relative, in terms of the Act, would take on the role. At each stage, it would be possible for the service user, or other interested parties, to challenge the appointment, and for the specified person to decline, or resign from, the appointment.

27. In many, perhaps most cases, the person nominated by the service user, the primary carer, and the nearest relative would be one and the same. As is the case with nearest relatives under the 1984 Act, it would be possible for a service user to have no named person.

Nominating the named person

28. We believe that service users, when able to do so, should be able to determine who has powers under the Act relating to them.

29. We therefore recommend that service users should have the right, when able to do so, to nominate a person to take on the functions of the named person. The nominated person would not necessarily have to be the primary carer, nor a relative, although in many, perhaps most, cases the nominated person will be both.

30. Such a nomination would not, of course, be mandatory. Service users should be made aware of their right to make a nomination but, if they are unable to do so because of the severity of their disorder, or they do not wish to do so, the primary carer would then assume the responsibilities (see below).

31. We asked in our second Consultation document about the concept of a nominated person, and found that there was widespread support for this proposal, especially from user, carer and voluntary sector groups.

32. There would require to be clear guidelines for how the nomination could take place. A nomination should be made in writing and be witnessed and signed by an appropriate person.

33. The procedure would be similar to that in relation to the granting of a continuing or welfare power of attorney under the Adults with Incapacity (Scotland) Act³⁵. The appropriate person would be drawn from a prescribed set of people to witness the document. This class would include solicitors and doctors, alongside other suitable people. The witness would certify that, so far as could be ascertained, the nominating person appeared to understand the nature and effect of the document and was not acting under any form of undue influence.

34. Notwithstanding this protection, there could clearly be concerns that the service user has not understood the implications of his or her actions, or is not well enough to take a rational decision, or was under inappropriate pressure from a third party. These concerns could be the basis for a challenge to the nomination.

35. Having nominated a person, the service user would, of course, be at liberty to change the nomination. Concerns have been raised with us that the nominated person arrangements might encourage a service user frequently to change his or her nominated person, causing administrative difficulties and upset to family members and carers. This is a matter which could also be borne in mind in a challenge to the nomination.

The primary carer and nearest relative as the named person

36. Where the service user has not made a nomination, and either is not currently able or does not wish to do so, the primary carer would be next in line for the role.

37. We propose that 'primary carer' should have a broad definition. It would not be necessary for the carer to be living with the service user to be classed as the primary carer, and caring would include emotional support and practical help, in addition to physical care. The definition would include a person who had been giving such care prior to an admission to hospital or other institutional care.

38. The identity of the primary carer should be established by the MHO. If the primary carer is agreeable, he or she would then have the status of the named person until such time, if it occurs, as the service user is in a position to and wishes to make a nomination of his or her own.

39. If there is more than one person who could be classed as a carer, and it is unclear who the primary carer is, the MHO would decide which would be most appropriate for the role.

40. If there is no primary carer, the nearest relative would then, if agreeable, be given the status of the named person.

41. The nearest relative, for this purpose, would be defined in the same way as under the 1984 Act, but with the additional provision which has been made in the Adults with Incapacity (Scotland) Act to include same sex partners.

Removing or challenging the appointment of a named person

42. We take the view that it should be possible for a person with a legitimate interest to approach the tribunal, to seek the removal of the named person and, if appropriate, the appointment of another person to the role.

43. Such an application could be made by the service user, the MHO or responsible medical officer (RMO), any person purporting to be a carer or relative, or any other person who can demonstrate a legitimate interest to the tribunal. Amongst the possible grounds for a challenge would be:

• where the named person was nominated by the service user, he or she was not capable of making the nomination or was subject to undue
  influence
• there was evidence that the named person is unsuitable for the role
• the MHO has incorrectly determined the identity of the primary carer
• there has been a mistaken identification of the nearest relative.

44. It would also be possible, where there is no named person, for the tribunal to appoint someone who would not otherwise qualify under the above criteria.

Right to information and support

45. Carers are the people most involved with service users, and they have particular understanding of the people for whom they care and the progress of their mental disorder. Carers want and need to be involved and consulted in care planning and treatment decisions for the service user for whom they care, whether the service user is in hospital or in the community. We have been considering whether a certain level of information, consultation and support for carers of mental health service users should be a statutory requirement.

Information

General issues

46. Voluntary caring by friends or family can be a fundamental part of the support network of a service user. We believe that it is vital to the success of a carer's relationship with a service user that the carer is given the appropriate information that he or she needs, to allow him or her to continue in the caring role. We received particularly helpful evidence on this issue from the National Schizophrenia Fellowship (Scotland) (NSF (Scotland)). A survey they conducted of carers found that failure to obtain information can lead to inability to monitor the progress of the illness, the treatment and signs of relapse and, in some cases, unrealistic expectations of the service user's progress. The results of this lack of shared knowledge can include an increase in family conflict, feelings of guilt and hopelessness, and breakdowns in relationships between carers, staff and service users.

47. As they point out, informal carers can have considerable influence on the outcome of the illness, and so their need for information should not be ignored.

48. We have heard evidence from carers of the difficulties that they have faced in attempting to obtain highly relevant information from service providers. One told us:

'It is as if a shutter comes down when you get a relative admitted to hospital and you, the person who has been giving all the care, is left on the outside.'

49. At present, the nearest relative has a right, under s111 the 1984 Act, to be informed of the proposed date of discharge of a detained patient (unless the discharge is because of a challenge by the nearest relative or the making of a community care order). However, the patient, or the nearest relative, can request that this information should not be given³⁶.

50. The Chief Medical Officer's Bulletin of July 1999 included a communication to all GPs in Scotland emphasising the need to inform carers about the health and treatment of the cared-for person (with the cared-for person's consent and to consider on a case-by-case basis divulging information without that consent). The draft clinical standards for schizophrenia issued by the Clinical Standards Board for Scotland also place emphasis on the importance of sharing information with carers.

51. We believe that s111 requires updating in the light of our proposed changes to the 'nearest relative' system; our desire better to inform those who undertake a caring role; and the increased recognition of the importance of keeping carers informed, in a sensitive and appropriate manner. The general approach should be based on an expectation that informal carers will be kept informed and involved unless there is good reason not to do so.

52. Confidentiality should normally be respected, where the service user has requested this, but it should not be assumed that this is what the service user would wish. A distinction should also be made between those who expressly state that they do not wish carers or relatives to be given information, and those who, because of the severity of their mental disorder, are not able to consent to information being shared. For this latter group, it may well be appropriate for information to be shared.

53. It may also be appropriate in some cases to encourage the service user to consent to information being disclosed, or to seek consent again if their condition improves. The extent to which practical advice can be given without breaching confidentiality should also be explored.

Named person's rights to basic information

54. The 'named person', in particular, requires access to certain information in order to fulfil the responsibilities of the role.

55. Except in an emergency, there should be an expectation that such information will be made available in good time to allow the named person to take any appropriate action, such as to oppose an application for compulsory measures. As we go on to state, there should also be an expectation that the named person will be consulted in relation to these measures.

56. Because this information is seen as fundamental to the role of named person, the service user would not be entitled to refuse to allow the information to be given, although he or she could nominate a new named person, or ask the tribunal to discharge the current named person.

Primary carers: right to information

57. As we have already indicated, there is a balance to be struck between the right of the service user to confidentiality and the rights of those who may be intimately affected by the service user's movements and treatment to know what is happening. We believe that, in certain specific circumstances, the right of a carer to fulfil the caring role, or a party at risk to assure his or her own personal safety, must outweigh the right of a service user to confidentiality.

58. Such a balance is already struck, to some extent, when a community care order is made. At present, if an application for a community care order is being considered, the responsible medical officer (RMO) must consult with professional and care staff and:

• the nearest relative, if the patient so agrees;
• 'any person who the responsible medical officer believes will play a substantial part in the care of the patient after the order comes into force but will not be professionally concerned with the aftercare services', (that is to say, the primary carer);
• the nearest relative, whether or not the patient agrees, if 'the patient has a propensity to violent or dangerous behaviour'³⁷.

59. In most cases, the named person under our proposals is likely to be the primary carer. Whether or not this is the case, the primary carer may require access to information in order to undertake the caring role. It is notable that the requirements of confidentiality do not necessarily restrict information from being shared amongst a care team, and we believe it is unfortunate that this practice should sometimes cover everyone except a family member, purely on the basis that they are an unpaid, rather than paid, carer.

60. Where information is being passed on against the wishes of the service user, this should be on the basis of a need, rather than wish, to know. In our view, it would be extremely difficult to set out in legislation the precise nature of the information which the carer might need to know, since this will vary, depending on the nature of the relationship with the service user. It should, however, be addressed in the Code of Practice.

Consultation on compulsion

61. We state elsewhere (Chapter 7) that we no longer believe that relatives should be asked to consent to detentions. However, we believe that in all cases where compulsion is being considered, there should be a statutory duty, where practicable, to ascertain and take into account the views of the named person. Written reasons should be given if this has not proven to be possible.

Challenging of compulsion by named person

62. The nearest relative currently has a right under ss.33 and 34 of the 1984 Act to challenge detentions. We make recommendations in Chapter 8 regarding the rights of the named person in relation to appeals against compulsory measures.

General information to carers and families

63. We believe that general information about available services, carers' legal rights, what mental disorders are and their causes and effects, should be more readily available to carers, including carers of mentally disordered persons generally, not just those subject to compulsion.

64. At present, there is a range of information available to carers in various forms, if carers know who to ask and where to look. However, the evidence that we have heard is that carers struggle to find the information appropriate to them, and that sources of appropriate information are scattered throughout the statutory, governmental and voluntary sectors.

65. In particular, family members have told us of the great distress caused at the time when a relative is being detained. Often the family feel completely unaware of who to approach for help, or what their rights are.

66. We are aware that there are a range of local information services which are designed to assist carers, but we believe that there is a need for a central information strategy for carers of mentally disordered persons. We therefore recommend that the Scottish Executive should consider how a single point of contact may be made available for carers wishing information on their rights and on mental disorder in general. This may be as straightforward as a single helpline, well advertised, and manned by knowledgeable people, who would have sources of information to hand and be able to refer carers to local resources. In addition, new technologies should be harnessed to improve information availability.

Carers' needs

67. Carers currently have a legal right, under the Social Work (Scotland) Act 1968 s12A (3A)³⁸, to an assessment of their needs by social work services, in cases where a community care assessment is being carried out on the person for whom they care. To qualify as a carer, the person does not have to be living with the person for whom they care, but they do have to be providing or intending to provide 'a substantial amount of care on a regular basis'³⁹.

68. Carers' organisations have commented to us that the statutory definition may not reflect well the situation of informal carers of adults with mental health problems, where the care may be more sporadic, but still highly intensive should the service user experience a crisis.

69. It is also possible that a carer might him or herself be a 'person in need', in which case he or she would be eligible for a community care assessment of his or her own (see Chapter 13).

70. The right to a carer's assessment does not lead to any right to services, nor a separate plan of care for the carer, but the assessment should be considered alongside the community care assessment in formulating decisions about services for the user and his or her carer(s).

71. Unlike the assessment of 'persons in need' under the 1968 Act, the assessment of carers is not automatic. It depends upon a request being made by the carer, and is therefore dependent upon the carer knowing that a community care assessment is being carried out, and that he or she has the right to a carer's assessment.

72. The evidence that we have received is that most carers have not been in receipt of such an assessment. In most cases it seems that the carer has not been not aware of his or her right to such an assessment. We therefore believe that local authorities should consider ways in which carers might be better informed about their rights in this respect. In particular, we suggest that local authorities should work with mental health services to provide a coherent package of information to carers of mental health service users, which would include information on carers' legal right to an assessment of needs.

73. We note the commitment in 'A Strategy for Carers in Scotland'⁴⁰ that the Scottish Executive will introduce legislation to enable carers to have their needs directly assessed for the first time. We welcome these proposals, and note the setting-up of the Carers' Legislation Working Group, which is considering how this commitment may be taken forward.

74. We asked in our first Consultation whether the right to an assessment for carers should continue to be a social work duty, or whether it should be broadened to include mental health services. A clear majority of those respondents that answered this question were in favour of the duty remaining with social work.

75. We concur, and hope that the Scottish Executive's proposed direct assessment of the carer's needs by social work services, if introduced and consistently applied, will help to ensure that any needs that a carer may have are positively identified.

Consideration of carers' needs by the tribunal

76. The tribunal, in considering compulsory measures of care, should base its decision on the individual needs of the service user. The issue arises as to whether the carer's needs should also be taken into account. Clearly, the primary responsibility is towards the person who may be subject to compulsory intervention. However, it is important that any order, for example for compulsory treatment in the community, is not based on unrealistic or unfair expectations about the support that may be available from informal carers.

77. In carers' assessments, the local authority is expected to have regard to the ability and willingness of the carer to undertake caring responsibilities. We believe that the tribunal should have a similar responsibility.

Young carers

78. In Chapter 18, we discuss the needs of children and young people who experience mental health problems. We are also concerned about children and young people who may be caring for adults with mental disorders.

79. At the seminar organised for us by Children in Scotland (see Annex 6), there was discussion of the needs of young carers. It was observed that young carers face specific problems, such as fear of stigmatisation, concerns that they may be taken into care of the local authority if they ask for help, or a lack of information about available services. There is a need for any information produced for young carers to be age-appropriate.

80. It appears that carers under the age of 16 years do not currently have the right to request an assessment of their needs, as adult carers do⁴¹. The evidence that we have received is that this is placing an already disadvantaged group at greater disadvantage. There is provision for an assessment to be carried out under the Children (Scotland) Act 1995 on the basis that the young carer is a 'child affected by disability', but the child has no right to initiate this. We believe that a direct assessment of young carers' needs should be a legal right.

81. We therefore welcome the commitment in the Strategy for Carers in Scotland that the Executive's proposals for carers' assessments will extend to carers under the age of 16. We believe that this could make a significant difference to the lives of many young carers.

Respite

82. Some respondents to our consultation with users and carers told us of the importance of services designed specifically for the carer rather than the service user. The most commonly mentioned of these was respite.

83. We agree with the view expressed by several major carers' organisations that respite is a key factor in allowing carers effectively to undertake their role. We visited a respite facility in the north-east of Scotland and were impressed by the work that was being undertaken there.

84. We note the stated commitment of the Scottish Executive to providing quality respite care. As we have said, in its Strategy for Carers in Scotland, the Executive announced that it plans to introduce assessments of carers' own needs, which is likely, in many cases, to include the need for respite. The Executive also announced that national standards for residential respite care will shortly be introduced. These are both encouraging developments.

85. We are in favour of the greater use of respite services to help carers undertake the difficult role of caring. Although we do not believe that mental health legislation is the appropriate place to encourage the development of respite services for carers, we hope that the Scottish Executive will consider how the legal position of carers seeking respite may be strengthened.

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