National Care Service: Independent advocacy co-design report

What we learned

Many people do not know about independent advocacy or understand how it could help them

We heard that many people do not know what independent advocacy is or how it could help. They think it should be promoted more to make it easier for people to get advocacy support when they need it.

Other points around this included:

• information about independent advocacy should be made more accessible
• independent advocacy services should be actively promoting themselves in local communities
• members of the social care workforce should be signposting people to independent advocacy support early in the process

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

“It’s not something that’s very well advertised. Social worker got in touch with advocacy for me because I didn’t know about it.” – person with a learning disability from SCLD

“There needs to be a clear definition of what advocacy is and criteria for who and how to access advocacy." – participant from Age Scotland

“It should be promoted more and they should do sessions with people in the community to help them understand it.” – participant from CEMVO

How we will use this

We agree that more can be done to help people find out about independent advocacy. One way we will try to improve this is including information on independent advocacy in the NCS Charter of Rights and Responsibilities. This will include an explanation of how independent advocacy can help people and how they can find out what services are available in their local area.

People want independent advocacy to help them navigate a social care support system they think is too complicated

Some people said that they find the social care system complex and difficult to navigate. Support to navigate the system was the main thing people told us they want independent advocacy to help with. People told us it would be easier to speak up for themselves if the system helped them.

Other points around this included:

people find that navigating the system on their own to be very challenging and disempowering people would value a single point of contact as they deal with different services more services should adopt a person-led and trauma informed approach

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

“One thing these high-level organisations should do is reduce the need for advocacy. Make the system simple, accessible, approachable and person friendly.” – participant from Age Scotland

“You can’t really count on a bad service telling you about a service that will make them accountable” – parent participant from Action for Children

“Helped guide me because I wasn’t aware of what services were available.” – person with a learning disability from SCLD

How we will use this

We plan to introduce new funding for independent advocates to support people navigating the social care support system. This should ensure more people have local support to help them navigate any systems they find to be too complicated.

People want their independent advocacy support to be long term and there when they need it

People generally felt that independent advocacy should follow a no ‘case closed’ model, where they can quickly get their support again whenever they need it. This was particularly important for people to feel more confident and secure, knowing there is a ‘safety net’ of support available to them if they need it.

Other points around this included:

people do not want their independent advocacy to be limited to a single issue knowing the support is there, if required, can help people feel more confident to speak up for themselves

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

"There needs to be a place for advocacy on long term basis to allow people to elevate their lives through independent advocacy because there is that anchor there." – person with a learning disability from SCLD

“I still have her [advocate] phone number so if there’s ever any need in future she’s at the end of a phone for me.” – person with a learning disability from SCLD

“Stopped having advocacy but you could come back when you needed it” – person with a learning disability from SCLD

How we will use this

We will explore if new funding for independent advocacy could be used to help more independent advocacy providers support people for longer. This will be done by having discussions with providers of independent advocacy, including those who currently provide long-term advocacy support.

Advocates should focus on building trust with the people they support

Trust was often highlighted as the most important part of an effective advocacy partnership. People noted that trust can take time to build, especially for people who have had negative experiences with professionals or services in the past.

Other points around this included:

people find it easier to trust when an advocate shows an understanding of their unique situation and circumstances people also find it easier to trust an advocate who is knowledgeable of the issues and services they are facing more choice and control of when and where a person meets an advocate will help them feel more comfortable

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

You should be able to “should meet them before you need them, so they know you and you’re comfortable with them before going to big meetings” – young person participant from Action for Children

“It’s important to have someone that can read between the lines and really understand what you mean.” – unpaid carer of person with dementia from Alzheimer’s Scotland

“There is clearly a relational aspect that needs to be built into advocacy.” – person with a learning disability from SCLD

How we will use this

We will work with providers of independent advocacy to set out service standards to give people a clear idea of what quality independent advocacy support looks like, in relation to social care support.

Different types of independent advocacy should be made available to support people

People highlighted that different types of independent advocacy and support exists, and that no approach will be right for everyone. People felt that they should have enough choice to pick the type of advocacy support that best suits their needs.

Other points around this included:

• each type of advocacy has its own unique value and benefits
• some people will require support from an advocate because they cannot or do not want to rely on family or friends for support
• sometimes people will turn to organisations and people they already trust to help advocate on their behalf

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

“My wife was not expressing my feelings in the way I wanted to express them… It’s how I feel, how I was feeling at the time… It’s my experience and it shouldn’t be filtered, I have no embarrassment or shame about it.” – person with dementia from Alzheimer’s Scotland

"Noted advocacy takes many forms (professional/peer/self/citizen) and that people may need different types at different times. It was accepted advocates will not need to know everything about everything but will have skills or expertise in specific areas!" – participant from Age Scotland

“Sometimes it could be a family discussion so it wouldn’t be my family I need as an advocate. I would look into somebody who knows in depth about it.” – participant from CEMVO

How we will use this

We will look at how we can improve information so people can understand the different models of independent advocacy. By working with providers of independent advocacy, we will see if there are ways to give people more choice in the type of advocacy support they receive.