National Care Service - making sure your voice is heard: seldom heard voices co-design findings

What we learned - independent advocacy

1. Advocacy services should understand the unique challenges faced by specific groups and offer specialised support.

We heard that different groups might experience different barriers when accessing social care support services. Because of this, they might need different approaches to help them engage in advocacy services.

Other points around this included:

• some people said peer advocacy was important because a shared experiences can create understanding and trust
• some people felt that because of their background they often face unique challenges when navigating supports systems. This means it is important to have access to advocates who understand these issues
• some people felt there is a need for more specialised training across support services in domestic abuse so more effective support can be offered

Here are some of the things people said during our discussions:

“This answer will be unsurprising but I think the best way to remove barriers is to provide an LGBTQ+ specific service” – LGBT Health and Wellbeing participant.

“I wanted to engage in advocacy to help me navigate/potentially complain about NHS mental health services. However the thought was emotionally exhausting and I was worried how this would impact my care. As with all services, uncertainty around whether I would be understood as a queer person and uncertainty whether the specific issues I experience would be understood” – LGBT Health and Wellbeing participant.

“Having someone listen to you who has lived experience and understanding is so valuable” – Glasgow Disability Alliance session participant.

How we will use this

We will consider how we can make sure there is good signposting to advocacy support within communities across Scotland. We will consider how we can improve information so people can understand the different models of independent advocacy. This should include peer advocacy for people who want support from someone with lived experience.

2. A professional advocate could be a useful support for people, including when making a complaint

We heard the ideal advocate to support people through a complaint would be aware of equalities legislation and also of people’s rights to social care support. They would also have knowledge of the community they were supporting. People also said that an advocate should have a good knowledge of the complaints system

Other points around this included:

• people said effective independent advocacy could be a way to empower people to engage with support systems
• we also heard that independent advocacy could help make sure voices are heard and needs are addressed
• some people said making a complaint on your own without any support can add stress to already stressful situations

Here are some of the things people said during our discussions:

“Having no power in your own life or in relation to services is a way of life for disabled people – it’s our everyday reality. If we are to use any complaints system we need support and advocacy. It’s all very well being here together today, but when it’s yourself, it’s harder to speak up!” – Glasgow Disability Alliance session participant.

“How to formally complain, someone to take my complaint and structure it so it receives proper attention. An authority which the organisation can’t gaslight, demean or ignore” – LGBT Health and Wellbeing session participant.

“It’s more emotional when it’s about yourself – it’s much harder. Sometimes you need someone to fight on your behalf- because it is a fight and an uphill struggle” – Glasgow Disability Alliance session participant.

How we will use this

We will consider how we can provide more detailed information and guidance on how independent advocacy can help to support people. We will consider what information and guidance could be designed for advocates to help them support people when making a complaint, as we develop the National Care Service complaints service.

3. There are many instances where people might look for support by advocacy services to address a wide range of issues

People said it was important that advocacy workers have a good understanding of rights, entitlements, and the barriers and challenges that someone might face. They also said people should also be supported to manage their expectations of what an advocate can and cannot do.

Other points around this included:

• people said there are many triggers for when people want to access advocacy services, including when people find themselves in difficult situations
• some people might look to an advocate when they want mediation when things aren’t working, but this isn’t something an advocate can do
• some people feel alone while navigating through their care and support journey, and would like someone to support them through that
• some people said it was challenging and complex trying to access and navigate multiple services to receive support

Here are some of the things people said during our discussions:

“Sometimes there used to be advocacy that was funded especially but at other points it was only for people with learning difficulties or mental health problems. So advocacy needs to be for everyone who needs or uses social care” – Glasgow Disability Alliance session participant.

“My advocacy worker told me there is no point in bringing that up and that they can only deal with one agreed issue. But that’s impossible when all the problems are related” – Glasgow Disability Alliance session participant.

“An advocacy service should work for its clients, not choose who they want to work with because it will lead to more council/govt money. That's not my definition of independent” – LGBT Health and Wellbeing session participant.

How we will use this

Information on and signposting to independent advocacy should be made available to people, so they are clear on what an advocate can and cannot do. Future co-design work will explore how to make this information accessible to people. We will also explore any gaps in existing independent advocacy provision.

4. There is a lack of support and advocacy for unpaid carers

People said a lack of support for unpaid carers left them feeling exhausted and unable to care for loved ones properly. This can often mean people who receive care feel like a burden to their carer and feel the need to seek out additional support for themselves.

Other points around this included:

• some people in the Gypsy and Traveller community did not know about the support available to unpaid carers
• many people in different communities said that there is a cultural expectation for families to support each other and that it is rare to receive any support from someone outside their community
• some people were not aware that they could be identified as an unpaid carer and were entitled to support

Here are some of the things people said during our discussions:

“I feel like a burden to my daughter… I lean too heavily on her” – Alzheimer’s Scotland session participant.

“I have been a carer all my life. First caring for my husband and now caring for my daughter and her son, I have no idea what my rights are” – MECOPP session participant.

“What will make me feel like I have choice and control is if I know I can speak to someone and that someone could make things happen” – MECOPP session participant.

How we will use this

We will explore independent advocacy for unpaid carers in future co-design work. We will also consider exploring if there is a lack of advocacy support available to unpaid carers, a lack of awareness of support that is available, or a combination of both issues.