Guidance for Unpaid Carer Advocacy in Scotland

Why a carer may need advocacy

'Even within the broad community of people using adult social care services, different people have different levels of power over their lives, over the decisions made about them and the choices and risks they can take.^[4]'

Principle 1: Advocacy puts the people who use it first

There are many reasons why a carer may need advocacy including the nature and complexity of caring roles and the difficulties of balancing the carer's needs with those of the person they care for. Carers can also find it difficult to access the support they need when they need it.

Advocacy may be provided to a carer at any stage of their caring journey. This includes, for example, where the person they care for has moved into residential or nursing care, as the carer may still play an ongoing role in relation to their care and support.

After a person's caring role has come to an end, the former carer may still require advocacy support. This is because the end of caring may have implications, both financial and practical. It will be a matter for advocacy organisations to prioritise the advocacy requirements of carers and former carers, depending on conditions attached to funding and legislative requirements.

Many carers are able to speak up for themselves, but others find it more challenging to do this for a number of reasons:

• stress, fatigue and social isolation can undermine a carer's self-esteem, making it much more difficult for them to ask for things before they reach crisis point
• carers can often find themselves in situations where they are speaking on behalf of the person they care for and also trying to get their own views across. Sometimes the carer's views will differ from those of the person they are caring for so it is possible that they will not ask for the things they need.
• carers may have family members, friends or other professionals who will help them represent their views. However, in situations that are complex, or where there is a conflict of interest a carer may need support that is independent.
• the size and complexity of the system can be off-putting for a carer who doesn't know where or to whom to address their needs - and the jargon used in the system, unintentionally, can act as a barrier for a carer in understanding what professionals mean.
• a carer is often the expert in the care of the person they are caring for. If this is not acknowledged by professionals carers may need support to gain recognition as equal partners and be involved in decisions affecting them.
• employers and education providers may not always be aware of the full extent of the caring responsibilities of their employees or students and how these are impacting on their attendance and performance
• a carer may have difficulties in expressing the magnitude or intensity of how their caring role affects their physical, mental or emotional well-being
• a carer can be so overwhelmed with paperwork and dealing with multiple agencies and may simply not have time to search out what information and support is available or to keep asking for help
• a carer may not know how to access the information about services that can support them
• even though a carer may also have Power of Attorney, or be in the role of Welfare or Financial Guardian for the person they care for, it is also possible that they may need someone to discuss the options or to help them get their voices heard, without in anyway influencing decisions they may make