Advocacy for Carers

Being Heard – Independent Advocacy for Carers

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, when the person they care for has moved into residential or nursing care, as the Carer may still play an ongoing role in their care and support.

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 care for, so they may not ask for what 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 involve a conflict of interest, a Carer may need independent support.
• 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.
• 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 are 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 any way influencing decisions they may make.

What Carers Advocacy Funding will cover:

Education (where the child requires an Additional Support Plan or where the Additional Support Plan requires updating or reviewed, or is not being followed).

Complaints (Local Authority, NHS, etc), where appropriate.

Pre-Discharge/Discharge Planning (to ensure the Carer can cope when the person is home and that their voice is heard throughout).

NHS/GP Conversations (when the Carer feels they are not being heard and require advocacy support).

Self-Directed Support Reviews (to help ensure the hours in place are not reduced).

Housing (where adjustments are required for the person being cared for).

Dementia (to support Carers who care for those with Dementia).

What Carers Advocacy Funding does not cover:

Families at Risk – such as Children’s Hearings, LAC’s Child Plans, etc.

Self-Directed Support – initial applications.

Housing – to move home or deal with internal issues that are not related to adjustments for the person being cared for.