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

Chapter 14

INDIVIDUAL AND COLLECTIVE ADVOCACY

Rights to individual advocacy

1. Currently, not all mental health service users have access to an advocate at times when they may wish one. We have considered whether rights to obtain access to advocacy should be strengthened.

2. Our consultation process indicated a wide consensus in favour of the principle of advocacy. Many consultees told us in detail of the importance to service users of independent advocacy. In our consultation with users and carers the need for advocacy was a recurring theme.

3. In the context of the NHS, advocacy means:

"enabling people, so far as possible to make informed choices about, and to remain in control of, their own health care"¹⁷.

4. Its objectives can be seen as

• To promote respect for the rights, freedoms and dignity of vulnerable people, both individually and collectively.
• To ensure people receive the care or services to which they are entitled, and which they wish to receive.
• To enhance people's autonomy.
• To assist people to live as independently as possible and in the least restrictive environment.
• To help protect disadvantaged people from abuse and exploitation.

Who can benefit from advocacy?

5. Any person can benefit from advocacy if, for whatever reason, they find it difficult to put their own case to service providers or do not feel in a strong position to exercise or defend their rights. It is particularly helpful for people who are at risk of being mistreated or ignored, or who wish to negotiate a change in their care, or are facing a period of crisis.

6. Advocacy can be used by people with physical or mental disorders, or by people who simply feel overwhelmed and confused by institutions and care, or by carers of such people. It can be difficult, for a number of reasons, for service users to speak up for themselves. Advocacy gives them a route by which this may be achieved.

7. The Accounts Commission for Scotland, in its recent report on mental health services¹⁸ highlighted the need for agencies to support both individual and collective advocacy. Similarly, the Royal Commission on Long Term Care has emphasised the importance of advocacy for older people¹⁹.

Types of advocacy

8. At present, there are several types of individual advocacy, all of which are used in different parts of Scotland. They are complementary in nature, and each of them may be appropriate at different times. Advocacy is still developing, and the list below is not a comprehensive view of all the ways in which it may operate. However, it aims to provide an overview of some of the ways that advocacy can work.

Citizen advocacy

9. Citizen advocacy normally takes the form of a long term involvement with a person by a trained volunteer attached to an advocacy project. The citizen advocate develops a relationship with the person, and works to promote their interests. This type of advocacy will be appropriate in many different circumstances, but crucial to the success of citizen advocacy is an understanding by the volunteer advocate of when specialist expertise is required, and the development of relationships by the advocate with people who may be able to provide it. For example, it may be appropriate to seek legal advice at times, or advice from specialists on benefits entitlement.

Crisis advocacy

10. Crisis advocacy is one-off involvement with a service user centred on a specific situation. In the case of mental health service users, for example, it might be used at times when detention procedures are being considered, or when a person is due to be discharged from hospital. We have heard evidence that the help of a well-informed, neutral third party to help a person express their views at such times can help to make the experience less difficult.

Peer advocacy

11. Peer advocacy is when a person advocates for another person experiencing similar difficulties. This has the advantage that the advocate will have first-hand knowledge of the service user's situation, but is not personally affected by it.

Advocacy on behalf of people unable to express their views

12. Advocacy on behalf of a person who is not able to make his or her views known, in order to safeguard their best interests, is a different process from other forms of advocacy, where a person's views can be ascertained and put forward by an advocate. Advocates acting in this role must attempt to ascertain the person's views, preferences and value base as far as this is possible, by reference to any current or previously-expressed wishes and information provided, for example, by carers.

The legal position of advocacy

13. At present there is no legal right to an advocate for people with mental disorders. In 1986, the Disabled Persons (Services, Consultation and Representation) Act was passed. Sections 1 and 2 of this Act would give disabled people (including people with mental disorders) the right to a 'representative' who would have the right to accompany the disabled person to meetings, receive information about the disabled person and act for them in dealings with the local authority. However, these sections have not yet been brought into force.

14. However, there are some ways in which the access to an advocate has been facilitated. For example, the Patient's Charter in Scotland stated in 1991 that all users of health services have a right to advocacy, and a patient can insist on having a 'patient's supporter' with them when in discussion about their NHS care and treatment.

15. Recently, policy guidance has consistently emphasised the importance of independent advocacy²⁰.

16. The Adults with Incapacity (Scotland) Act 2000 does not make specific reference to advocacy, but one of its key principles is that:

"In determining if an intervention is to be made and, if so, what intervention is to be made, account shall be taken of -

(a) the present and past wishes and feelings of the adult so far as they can be ascertained by any means of communication, whether human or by mechanical aid (whether of an interpretative nature or otherwise) appropriate to the adult²¹".

17. This is intended to include the services of an advocate, and we understand that the Codes of Practice for the Adults with Incapacity Act are likely to include specific references to advocacy.

Existing advocacy services

18. Advocacy has existed in Scotland for a number of years. It has mainly been aimed at the most vulnerable groups, including people with mental disorders. However, it has developed in an ad-hoc manner, encouraged to various degrees by health boards, NHS trusts and local authorities.

19. Advocacy services come in a variety of forms. Generic services offer assistance to people with a variety of physical and mental problems, and those who may require advocacy or advice for other reasons. Other services are solely aimed at one client group, for example, people with mental health problems, or persons being discharged from a learning disability hospital. Members of the Committee visited a generic advocacy service in the north-east of Scotland, and we took evidence from advocacy service providers working within other models.

20. Differences in the ways services are set up and delivered are not necessarily a disadvantage. One of the key advantages of local schemes as opposed to centrally imposed advocacy services is that they are flexible enough to address local needs.

Advocacy 2000

21. One service from which we took oral evidence is Advocacy 2000. It was set up in 1999 by a consortium of 11 different voluntary sector organisations involved with and committed to safeguarding independent advocacy in Scotland. We see its introduction as a significant development in ensuring that advocacy develops throughout Scotland.

Scottish Executive policy towards advocacy

22. The Scottish Executive is supportive of the development of advocacy services.

23. In 1997, the Scottish Office Health Department published 'Advocacy: A Guide to Good Practice', aimed at health boards and other service providers. We understand the guidance for commissioners on the development of local independent advocacy services is likely to be issued soon by the Executive.

24. In a speech on 18 February 2000, the then Deputy Minister for Community Care announced that funding was to be made available to appoint an Advocacy Development Officer to work with local health and social work services to develop an integrated advocacy service for every health board area in Scotland.

25. We welcome these developments, but believe that stronger measures are required.

Problems faced by advocates

26. We received evidence from advocacy workers that some advocates have to spend a good deal of time justifying their role to professional staff. While it appears from the evidence available to us that advocacy is becoming increasingly accepted by staff, there is still room for improvement in this regard.

27. We are also aware that conflict can occur between carers and advocates regarding the latter's involvement with the service user. We believe that the two have complementary roles, and it might be that better provision of information to the carer about the role of an advocate would reduce this type of difficulty.

A legal right to access to advocacy

28. We have considered whether there should be:

• a right to advocacy for all service users; or
• a right to advocacy only for those service users subject to compulsion; or
• whether it would be adequate merely to encourage the development of advocacy, perhaps by way of the Code of Practice.

29. Our consultation indicated a high level of support for a legal right to advocacy. In our first Consultation most local authorities and health agencies and all voluntary sector organisations were in favour of such a right. In our second Consultation we found the same pattern. Nearly all of our many respondents on this point were in favour of a right to advocacy for mental health service users, irrespective of legal status.

30. We believe that access to advocacy should be a right for all mental health service users. One of the fundamental principles of the new Act that we propose is that of Participation. This principle indicates the importance of ensuring that, as far as possible, a service user is able to indicate his or her preferences and have them taken into account. Advocacy is a powerful tool for ensuring that this happens.

31. We did, however, give consideration to the question of whether only patients subject to compulsion should have a right to access an advocate, and have concluded that this would not be appropriate. Some particularly vulnerable people are not subject to any compulsion, and may require the protection of advocacy. More generally, though, many other service users may feel, for whatever reason, that they cannot make their voice heard. We therefore believe that this right in the Mental Health Act should extend to all mental health service users.

How the right would work in practice

The right of access to an advocate

32. The right to access would mean that service users would have to be informed, in an appropriate fashion, that advocacy services exist in their local area, and of what they are and what they can do. They would also need to be advised that they are legally entitled to make use of their services, and of the steps a user should take to contact them.

33. If the user expresses an interest in using an advocacy service, all necessary steps should be taken by health or social work to contact the advocacy service and make advocacy available to the user.

34. However, this right to access advocacy would not place any obligation on the service user. A service user who did not wish to make use of an advocate, or who had been using an advocate and wished no longer to do so, could decline to use the service.

Duty to provide advocacy

35. The right in law for all mental health service users to access an advocate will place an obligation on service providers to ensure the provision of advocacy. However, it is important to establish onto which service provider(s) the duty to provide advocacy would fall. Consultation responses were mixed on this question. Some strongly favoured the introduction of a new national body to provide advocacy. This would have certain advantages in terms of independence from existing service providers, and consistency of service provision. However, there are also problems with such a model. Primarily, there is a danger that the imposition of advocacy from a central body could stifle local innovations in advocacy provision. Such a body might also prove to be costly to operate.

36. We considered whether the responsibility should fall on health boards alone. Most people with mental health problems or learning disabilities are in contact with health services. However, we concluded that the responsibility should be a joint one between health boards and local authorities. People who use mental health services will in most cases have contact with both hospital and community services. It is important, therefore, that their access to advocacy is not based upon their place of residence at any one time.

37. We therefore favour responsibility for ensuring that advocacy is in place lying jointly with health boards and local authorities, who should be obliged to provide a joint plan for the provision of advocacy. This does not mean that health or social work staff would have any direct involvement in the provision of advocacy services. As at present, these services would be commissioned from services which would remain operationally independent from the purchaser, but we envisage health boards and local authorities working to ensure that responsive local schemes are set up and developed in their area.

Duty to ensure advocacy is of a satisfactory standard

38. Concerns were expressed from time to time about the quality of advocacy. In particular, we heard concerns about the level of training that advocates have, and linked to that, problems with ensuring that the views being presented are the views of the service user and not his or her advocate.

39. If advocacy is to be made more widely available, the question arises of how at least a minimum level of quality may be ensured. We heard evidence that there is a diversity of view amongst those working in advocacy about whether national standards for advocacy are desirable. There is concern that advocates should retain a primary responsibility to the service user, and their role should develop from the relationship between them. This is particularly relevant for citizen advocacy, where it is felt to be important that the advocate does not become another professional worker.

40. Our view is that advocates should not be unduly 'professionalised' but that they should be trained and competent, and prepared to refer the service user on when they are unable to meet their requirements. Any standards that may be set for advocacy should not be overly rigid. The responsiveness of small-scale advocacy projects to local needs is one of their key strengths.

41. The primary responsibility for ensuring the quality of advocacy should rightly lie with the advocacy services themselves. However, health boards and local authorities, which would have the statutory obligation to ensure that advocacy services are available, should also have the ultimate responsibility for ensuring that they are of a reasonable quality. This would mean that health boards and local authorities would have to monitor standards in the local projects that they support, and compare them against national best practice. Service commissioners would have discretion, if it can be shown to be justified, to require improvements or remove their support from local advocacy projects.

42. This responsibility to monitor quality should not serve as a means to exert control over advocacy organisations, in a way which would restrict their ability to challenge service providers, in the interest of their clients.

43. There may be a case for some form of oversight at a national level, but we take the view that this is a matter which should be considered by the Scottish Executive in relation to advocacy generally, not only advocacy for mental health service users.

Resources

44. Some consultees raised concerns about what the practical implications of the right to access to advocacy would be. Clearly, there would be resource implications. Many advocacy projects struggle to find funds to continue their support of service users. We believe that advocacy is too important to continue on such an insecure basis year on year.

45. We would hope that the Executive's stated commitment to advocacy, and the new right to advocacy under the Mental Health Act which we are proposing, would lead to the provision of appropriate levels of resourcing.

46. Furthermore, if done well, advocacy is a cost-effective way of improving the responsiveness of services. In the context of mental health, it may help to engender genuine sharing of responsibility between patients and professionals, which may lessen the need for compulsory measures.

Advocacy for carers

47. We discuss the rights of carers further in Chapter 16, but one issue which has been raised with us is the question of whether advocacy should be developed specifically for carers.

48. We have heard that carers are often bewildered by the experiences they face, and feel that their voice is not being heard. Advocacy for carers is one way in which these difficulties could be ameliorated.

49. We are aware that this is an area which is developing at present. There are a small number of dedicated carer advocacy services in Scotland at present. We welcome the development of these services, and recommend that the Scottish Executive give consideration of what steps it should take to further promoting carer advocacy in Scotland.

Rights to collective advocacy

50. Collective advocacy may be defined as a group of service users, working together to promote their joint views with service providers and others. User empowerment is a growing force, not only in mental health services, but throughout the NHS and elsewhere. There was wide support in our consultations for the concept of collective advocacy, which we also endorse.

51. As with individual advocacy, collective advocacy comes in a variety of forms. Patients' Councils are a form of collective advocacy, which work in hospitals to present the views of patients to management. There are also an increasing number of collective advocacy groups which have been set up and are run by users themselves.

52. We heard evidence from the groups themselves and from service providers of the impact the existence of such a group can have. The users themselves feel empowered, and service providers are made more aware of their views and wishes. Collective advocacy can also permit users collectively to bring pressure to bear on the Scottish Executive, health boards and local authorities. This works well where such collective bodies are encouraged and supported.

53. There are, unfortunately, still areas of Scotland where service users have indicated to us that they feel their voice is not being heard, and that they do not perceive any desire on the part of the statutory authorities to facilitate this.

54. We gave consideration therefore to whether collective advocacy should be put in place by statutory services. However, we concluded, after listening to the views of users, that much of the value of collective advocacy is in its user-run nature and independence of the statutory services. We do not believe, therefore, that there should be a statutory obligation on service providers to develop collective advocacy in their area.

55. However, that is not the same as allowing service providers to deny a hearing to users' groups, by discouraging collective advocacy deliberately or by omission. If collective advocacy is to work properly, it has to be encouraged and financially supported by service providers, and facilitated by organised support staff even although the overall management of the collective advocacy project should be undertaken by users supported by professionals.

56. In this context, one problem which has been raised with us is that some collective advocacy groups, usually user-led community groups, are not being accorded recognition by statutory bodies. We asked in our second Consultation whether there should be a statutory obligation on service providers to recognise collective advocacy groups as a legitimate voice of users in their area. The great majority of respondents were of the view that there should be such an obligation.

57. There is obviously a need for enquiry to be made as to how representative any particular organisation may be. Where they are so representative, we recommend that there should be a statutory obligation on service providers to provide support services to collective advocacy groups as required, to recognise these groups as a legitimate voice of service users and involve them in decisions on service development and policy.

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