Guidance for Unpaid Carer Advocacy in Scotland

Accessibility in advocacy

Principle 4: Independent advocacy is accessible

Advocacy reaches out to the widest possible range of people, regardless of ability or life circumstances.

There are many issues and situations that may present barriers to accessing advocacy. These may be as simple as not being aware of advocacy, of what support can be provided by it and where to go for advocacy locally. However there may be more complex barriers to access for some. Accessibility can be limited by geography, communication, language barriers, cultural issues or perception.

Carers may themselves be users of services, because of their own health or social care needs and may already have access to advocacy in relation to these needs. In addition, their caring role may have an impact on many areas of their life and they may benefit from being able to access a specific carer advocacy service.

However, for those carers who have not had any previous contact with services, advocacy may not be something they consider would be for them. Professionals, while accustomed to referring people accessing services to advocacy, may not consider also referring a carer. Organisations providing advocacy need to think about how they can spread awareness and understanding of the role of advocacy for carers.

To ensure that advocacy is as accessible as possible organisations should make referral processes as straightforward as possible. Organisations should have multiple referral routes and should accept self-referrals. Awareness of advocacy and how it can help is often spread amongst service users by word of mouth; this is also likely to be the case for carers.

Organisations may have differing eligibility criteria which reflect the Contract or Service Level Agreement agreed with the funder. For example, they may be funded to provide advocacy only in a specific area or to carers caring for someone with a specific disability e.g. mental health. It is important that these eligibility criteria are made clear to referrers and to potential service users. If the organisation operates a waiting list with a system of prioritising referrals then prioritisation criteria must be clear and transparent. An organisational policy should be made available detailing referral routes and eligibility and prioritisation criteria.

Demand for advocacy can exceed the resources available. In such a situation the clarity around referral and prioritisation criteria along with robust recording methods of referrals and delivery can provide evidence on gaps in advocacy which can be collated to inform planning and negotiation with commissioners.

Minority groups and advocacy

Carers from minority groups, which may include for example people with disabilities, people from Black and Minority Ethnic (BME) communities and people from Gypsy/Traveller communities, will have many of the same requirements as carers within the majority community when it comes to providing advocacy but there will also be additional issues to consider.

Work undertaken on behalf of the Kings Fund (2002)^[7] suggests that advocacy providers should have a statement of equal opportunities or a statement of the organisation's commitment to challenging discrimination and providing a culturally competent service.
Advocacy can play a crucial role in overcoming or minimising disadvantage and potential will need to be reassured that both the advocate and the service has an understanding of the specific needs of carers where such additional issues arise .

For many BME carers, language and the ability to communicate effectively, continue to present many challenges. It is in this context that bi-lingual advocacy has developed. Bi-lingual advocacy fuses two sets of skills or functions, that of the interpreter and of the advocate to provide a broader understanding of the carer's cultural, religious and social norms. It is important to recognise however that this approach may not be suitable for everyone and some carers may prefer to keep the two roles separate recognising that:

• advocacy sees things from the carer's perspective and ensures their rights are not infringed
• the role of the interpreter is recognisably different from that of an advocate, as an interpreter is paid to be impartial and communicate a message between professionals and carers
• carers with disabilities may have specific support needs outwith their caring role and may require advocacy for issues arising from those needs

Case studies

Jim is 73. He is visually impaired and has mobility problems. He is also the main carer for his wife, Anne who has multiple sclerosis. The couple had paid care workers coming in every day to their home but when Jim had to go in to hospital for an operation Anne had to go into a residential care home.

When Jim was due to be discharged from the hospital after his operation he was told that it had been decided that he could not look after Anne any longer and that she would be remaining in the care home.

Jim contacted his local advocacy organisation. He told the advocate that he would be happy to move out of his home but that he did not want to live apart from Anne. The advocate supported Jim in meetings with Anne's social worker making sure that Jim's views and wishes were heard. The advocate also helped Jim to look into supported accommodation options. Jim found a place that was suitable where he and Anne preferred to live.

Saima lives with and cares for her elderly mother. Recently her mother's health has deteriorated and she has needed much more help day to day. Saima was working and struggled to manage caring for her mother as well as keeping up with her job. She asked the local social work department for support but they were unable to provide care workers who could speak Punjabi, her mother's first language, or prepare the food she eats.

The family felt stuck and didn't know what else they could do, until someone suggested contacting a local carer's organisation. An advocacy worker met with Saima to find out about her situation. After talking through her available options, Saima decided the best option for her would be to employ her sister as her mother's Personal Assistant, meaning she could keep working, knowing her mother was being well looked after while she was at work.

The worker supported Saima in arranging this with the local authority, and in making contact with another organisation who could assist with contracts and payroll. This arrangement is as easy as possible for Saima to manage, and her mother gets the support she needs.