National Care Service - independent advocacy: co-design insights and next steps

What we learned

In the current social care support system, access to independent advocacy is not equal for everyone

People said that access to independent advocacy varies depending on who you are and where you live. One reason for this is that many independent advocacy services must prioritise support for people with a legal right to their services.

People also said that the quality and amount of independent advocacy can be different in different local areas. Some people called this a ‘postcode lottery’.

Other points around this included:

• people feeling that their independent advocacy support was limited to specific issues
• moving to a new area meant that people might lose their advocacy support entirely
• people not having sufficient choice of alternative support if they did not like their current advocacy support

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

“I am an adult adoptee, but it is hard to get support. If you are a care experienced person under 25 you could go to a service and get support like that.”

"Moving to different areas is hard because you move to a new advocacy service without a clue of any advocacy in that area, what they are like, any contact details or how to find them.”

How we will use this

We have launched a new independent advocacy social care fund. This fund will aim to:

• support people navigating the social care support system who do not already qualify for this support
• ensure more people can access independent advocacy

For more information about the fund, visit Independent Advocacy Social Care fund.

Information about independent advocacy and how to get support should be more accessible

We heard that many people do not know what independent advocacy is or how they would access the support.

Many people think it should be promoted more widely, but some independent advocates are worried this could overwhelm some providers and increase waiting lists. A long wait to access support is a significant barrier for people with urgent needs.

Other points around this included:

• information about independent advocacy can be too confusing and is not always clear
• information or support only being available online can be a significant barrier for many people
• the process for accessing support can make people feel even more confused and overwhelmed
• the social care workforce needs to be more aware of independent advocacy support, so they can signpost people to it

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

"We are an in-person service. If we started publicising what we do to a wider audience, I would be making a rod for my own back."

“If you're struggling to deal with a care service, you need help now, not in three months’ time, and there is not necessarily enough capacity in independent advocacy services.”

“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.”

How we will use this

We will include information on independent advocacy in the NCS Charter of Rights. The Charter sets out people’s rights when accessing social care, social work and community health. This includes information on how to access independent advocacy and how to find out what services are available in specific areas.

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

People told us about the value of having different types of independent advocacy. Those types are:

• collective
• issue-based
• professional
• citizen
• peer

Each type offers its own benefits and ways to support people. Having more types available would allow people to choose the kind of support that suits them best.

Other points around this included:

• most current provision is for issue-based or professional advocacy, as commissioners tend to favour this type to support people with a legal right to advocacy
• systems and services should be made more accessible to make it easier for people to self-advocate
• sometimes people will turn to organisations and people they already support to help advocate on their behalf or give them information or advice

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

"Currently, demand is highest for individual 1-2-1 advocacy as this is what people with urgent needs require, as other types or models are often not appropriate in these cases. If looking to widen access [in the future] then it would be important to make a variety of models of advocacy available."

"I think both individual and collective [advocacy] are so important. I think they serve different purposes"

“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.”

How we will use this

We have launched a new fund for collective, citizen and peer advocacy to support people navigating the social care system. We will include information on the different types of independent advocacy in the NCS Charter of Rights. This will help more people understand what the different types are and how they could help them.

People want their independent advocacy support to be longer term and available to support them whenever they need it

People told us that independent advocacy support should not be time-limited. They felt that support often needs to be long-term to fully address their needs, especially for people with complex needs. People also told us that independent advocates should receive specific training to make sure they have the skills and knowledge to support people with different issues.

Other points around this included:

• people believing support should be open-ended and available to them even if they do not always use it
• services want to offer long-term support but due to budgetary or capacity restraints often have to prioritise support to help as many people as they can
• people want their advocates to have received training to help them understand people’s specific experiences, issues and needs
• advocate training and long-term support would make it easier for advocates to support people with complex needs or through complex issues

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

“Cultural differences can make it difficult to access services if there is no understanding of how to deal with the specific needs of individuals."

"Most people's issues last longer than a couple of years and it's awful if you have help then it's taken away and you're suddenly on your own in important meetings or have to start with someone new and have to have a gap in help so new advocates can be found."

"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."

How we will use this

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

More independent advocacy should use a relationship-based model focussed on mutual trust between an advocate and 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.

People told us that independent advocacy should focus on supporting people with any issues they want, rather than being limited to a single issue. This is because their issues are often related and focussing on one aspect is not helpful.

Other points around this included:

• many people do not need an advocate to have a similar life experience to them, as long as the advocate shows an understanding of their unique situation free from bias or judgement
• people find it easier to trust an advocate when they demonstrate good knowledge of their issues and the social care system
• people believe their independent advocacy support should help them with any issues, otherwise the positive impact can be significantly limited

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

“Most of the people that use our resource don't want the transactional professional relationship as it doesn't meet their needs, it’s about knowing somebody over a period of time, months, years, to know someone and help safeguard their rights."

“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.”

"I think it’s really important that if you are going to have an advocate, that they have an understanding of your background enough that there isn’t any bias coming through. There have been instances where I reached out for support, but bias and other attitudes have not allowed further interactions because I felt quite judged, so I couldn’t continue with that service."

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. We will also work with providers to collect data on the reasons why people seek out independent advocacy to understand more about the issues they face.