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

What we learned - access and support planning

1. There can be a lack of trust in social care services from seldom heard groups

A common theme we heard was a deep-rooted lack of trust in social care services. This was especially the case with people who had experience of homelessness. GPs were seen as a trusted voice by many. People said they relied on GPs as a way to access medical and social care support.

Other points around this included:

• there can be long waiting times to get a GP appointment
• some groups of people, such as those without a fixed address, find it difficult to register at GPs. This can stop people getting the support they need
• community link workers were seen as very important as they are also trusted people
• some people feel forced into residential care and this can cause longer term harm, such as worse mental health
• some people with experience of homelessness worried about speaking to people in authority. They felt it could put their housing or benefits at risk

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

“What I really want is to be able to keep my husband at home, it could be a trailer or a chalet...but I want it to be accessible because he would never want to leave the community and live anywhere else” - MECOPP session participant.

“We are seen as worthless, that’s how people see us. Being homeless, being addicts. People think I am aggressive, that’s how I have been labelled now, it’s been written down and it will dictate everything about what I get in the future” - Simon community session participant.

“I work with a woman who travels 100 miles to a doctor because it’s so hard to get through the barriers to get a trusted doctor” - MECOPP session participant.

“I understand social workers, but we shy away from them. In the Gypsy and Traveller community it is a taboo because historically the community has had bad experiences. Social work takes kids away and we stay away from them” - MECOPP session participant.

How we will use this

We will consider how we can build trust in seldom heard communities around accessing social care and support planning. We will also think about how trust impacts other aspects of social care including independent advocacy and complaints.

2. There is a perceived lack of understanding of the needs of diverse groups which can make social care support inaccessible

People told us that social care support can be inaccessible for those in the Gypsy and Traveller community or people with no fixed address. They also said that stigma and prejudice can impact on how you receive support. For example, we heard there is a general lack of understanding in the workforce around Gypsy and Traveller communities, or how transgender lives are lived.

Other points around this included:

• a lack of support in housing services can lead to health conditions, which in turn can lead to more support being needed
• respecting people’s gender preferences for their care and support is particularly important for LGBTQI+ people and communities with stricter gender roles
• preferences should be included in assessments, care planning and complaints processes
• there is a need for increased awareness of LGBTQI+ issues and bodies when someone is trying to access care
• systems and services need to be designed with a great level of flexibility to support people with different support systems, families or friendship networks

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

“Getting support should not be dependent on having a permanent address” - MECOPP session participant.

“What we need should be the priority. Not what we do in our spare time” - Simon community session participant.

“You phone for an appointment at the doctor’s – I only smoke weed – and they put me down as a heroin addict; branded me as an aggressive person” - Simon community session participant.

“My life would improve not having to explain my gender identity and support systems to doctors – they should know the differences; I’m not their teacher and it should not be my emotional labour to do this” – LGBT Health and Wellbeing participant.

How we will use this

We will look at how people’s identities can be better reflected within support planning arrangements as we work towards the development of a consistent approach within the National Care Service. This will include consideration of any associated workforce development and training requirements.

We will also consider this evidence when developing policy for independent advocacy and complaints.