Guidance for Unpaid Carer Advocacy in Scotland

Boundaries and expectations

The boundaries and expectations of the carer advocacy relationship should be clear from the outset.

General boundaries and expectations

Common to all forms of advocacy, the advocate should:

• discuss the carer's objectives with them in getting their voices heard
• be aware of the unique role of carers and the complexities of the caring role
• make it clear to the carer if the advocacy relationship will be on-going or will be related to a specific issue(s). Typically citizen advocacy may be on-going, whereas one-to-one advocacy is generally time limited
• share all information disclosed by a third party with the carer and the advocate must explain this to any third party that discloses relevant information to the advocate
• safeguard the rights of the carer(s) and inform others of their rights if need be
• where required, signpost carers to other appropriate sources of support

Confidentiality

• The boundaries of confidentiality within the advocacy relationship should be explained to the advocacy partner at the outset.
• The advocacy partner's case notes and files should be locked away and electronic information held securely. The holding of all data must comply with current data protection legislation. The advocacy partner has the right to access their own case notes.
• At an organisational level, the advocacy partner's information should be kept confidential between the carers' advocacy worker and their line manager. It is important that information about their case is not made available to other members of the team. For an advocacy organisation, disclosure of information about a carer could lead to a conflict of interest if the cared for person also has an advocate from the same organisation. For a carers' centre if a carer receiving advocacy also receives other support where there personal information is shared between staff, e.g. at a team meeting, this could lead to a conflict of interest.
• When a carer discloses, or the advocacy worker becomes aware, that there is a risk of harm to themselves or others, the advocate will be required either by law or by their own organisational policies to act on such information

One to one or individual advocacy

(A full description of the different types of advocacy can be found in Appendix 2.)

The advocate should:

• ensure that carers have an understanding of what advocacy is and that this is what they require
• have sufficient knowledge of local support and services for carers e.g. welfare rights, condition specific support organisations, local carer services, to refer or signpost carers on to
• at the outset and throughout the advocacy relationship the advocate and carer will identify and record the advocacy issues, desired outcomes and planned course of action
• ensure the carer understands the process and options and can help them think through the likely consequences of their preferred course of action, without giving them advice

Collective advocacy

Collective advocacy development workers should:

• explain to the group what advocacy is and how it can help them
• be clear on the objectives of the collective advocacy group and ensure group members are clear on their respective roles
• ensure that the work of the group is directed and prioritised by its members and at the pace set by the group
• ensure that their personal opinions, choices and values do not influence the decisions of the group
• act within the law and the rules of the organisation
• ensure all group members have the opportunity to have their say
• support the group to regularly review the way it works and if this could be changed or improved

Self-advocacy

Advocacy workers helping carers self-advocate should:

• help the carer(s) equip themselves with the tools and techniques to feel confident enough to get their voice(s) heard. This would include giving them options on ways of communicating, negotiating, and approaching stressful situations.
• explain good practice in self-advocacy, such as recording information and accessing the right person to speak to
• offer to be a 'mentor' for them - but being careful not to advise on their personal situation - as they begin to self-advocate with systems or if they experience difficulties
• for carers who have successfully self-advocated, provide them with the opportunity to pass on their experiences and good practice to carers who are just about to start making their own voices heard

Carers Scotland have produced 'Being Heard' a self-advocacy guide for carers which provides information and suggests techniques to help carers advocate for themselves

Case studies

Advocacy worker Marion visits Catherine, who cares for her daughter who has physical disabilities, for an initial assessment. Catherine discloses information about her own experiences of being abused while growing up in a social care setting, and how this influences her relationship with professionals involved with her daughter. The next time Marion visits, Catherine attempts to discuss the abuse again, going into more detail, and Marion reiterates the boundaries of the advocacy role. It becomes clear that what Catherine is actually looking for is an outlet to discuss her own past experiences. Marion is able to offer Catherine help to make contact with a local counselling organisation which could help her with her feelings, leaving the advocacy worker freer to help Catherine to get her voice heard in meetings about her caring role.

Sarah is the advocacy worker for David who cares for his wife. David has asked for advocacy to help him express his views to the local housing office that the couple would like to move to a property in another area of the city, as he says they are not listening to his needs but expects they will listen to someone with some 'clout' like Sarah. Once Sarah contacts the housing office it becomes clear that David's views have been heard and taken account of, but there are no properties currently available in his desired area. As the couple's move is not for medical reasons they are not a priority for rehousing. Sarah explains to David that advocacy workers do not have any 'clout' to change procedures or qualifying criteria that are in place.

Carly is the advocacy worker for Jack, a frail gentleman who cares for his mother. Each time Carly contacts Jack he asks her to pick up some shopping for him, and when she leaves his house he will ask her to drop him off somewhere or post mail. Carly needs to be clear with Jack each time she speaks to him about the extent of her advocacy role and maintain her boundaries. Carly offers to help Jack find out about local services which may be able to help him with his shopping or transport issues.