National Care Service - information sharing to improve care support: seldom heard voices co-design findings

What we learned

1. Information about social care support for people using care services is not as trusted as it could be.

We heard from some people that they do not trust information that has come directly from social work and social care. Instead, people prefer to get their information from people they already know and trust. This could be community link workers, a trusted member of their community, a third sector organisation, health professionals or family and friends.

Other points around this included:

• people might feel suspicious of how up-to-date social care information is on a website, as details on services vary depending on which website is viewed
• information needs to be clearly explained to help people understand what it means for them
• the way information is structured needs to reflect the person-centred approach in social care support, e.g. focus on personal outcomes and not basic needs
• having a service where people can access support from a person as well as online is important

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

“If there are no community helpers, we would be lost. We would not know what to do or where to go for help” – MECOPP session participant.

“There is a big gap, because we do not know what services are available” - MECOPP session participant.

“If you can’t do things online, then you miss out” – Simon Community session participant.

How we will use this

We will use these insights to further investigate trust in sources of information and use this to build a service that provides consistent information for people seeking care support.

2. There is a lack of awareness of and support for LGBTQI+ communities within health and social care systems and its workforce

We heard about experiences of people being misgendered or being called their old name when accessing services. This was either through a lack of understanding or through information not being available or up to date in all health and social care systems.

Other points around this included:

• when a person changes identity on one record it does not automatically update other systems (for example, updating with a GP and not updating in a social care system)
• people want their chosen name and pronouns to be consistently recorded and for people providing care to be aware of them
• the use of language to describe gender needs to work for all
• training for workforce professionals can help to alleviate the concerns of LGBTQI+ people and improve the confidence of the workforce in supporting people

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

”I would like my name and pronouns to just be fixed and known. I was presented as one gender and then referred to as another in my records” – LGBT Health and Wellbeing session participant.

“I’ve been in hospital and they’ve called out my old name, they said they must have had old labels, they didn’t think it was odd that they were using my old name” – LGBT Health and Wellbeing session participant.

“There has to be a way around writing down info – we need free text boxes as opposed to tick boxes. When ‘other’ info is requested and I complete that free text field, it often isn’t included in my notes” – LGBT Health and Wellbeing session participant.

How we will use this

We want to develop services that will respect people’s identities. Understanding the difficulties experienced by LGBTQI+ people when sharing information to access social care support will help us do this. It will also help us to create training materials for the workforce on the use of people’s preferences when it comes to their information being recorded and shared.

3. Some people have previously experienced a lack of respect for their confidentiality and a betrayal of their trust. This has dented their confidence in how social care support staff might handle their sensitive information in the future.

We heard many examples of when people have had their information shared without them being aware of the reason why. This has caused issues for people in sharing information and stopping them from accessing the support they need.

Other points around this included:

• information needs to be shared in an appropriate and confidential way to prevent it being shared wrongly
• people need to be able to understand what their rights are around their information being shared
• professionals need to have a better understanding of GDPR regulations
• having choice, where possible, over who accesses sensitive information is important to people receiving care support
• having access to your own live record would help people feel more in control of their information

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

“There’s a ‘wee black book’ – staff write about us but we are not allowed to see that” – Simon Community session participant.

“I would like levels of info to be restricted to certain people” – LGBT Health and Wellbeing session participant.

“I would like to see my records live and be able to see them in real time – I think that way there would be more accountability” – LGBT Health and Wellbeing session participant.

How we will use this

Understanding how people feel about who gets to see their sensitive information will help us co-design how a Care Record could look and work. We will consider how we could give people options on what they would like to share and with who. It also helps us make sure that we build understanding on how their care information is used and managed and supporting the workforce to understand how to correctly handle information.

4. Structures have made it harder for consistency to be a priority in the provision of social care support.

We heard that many different people might be involved in the care and support or case handling of a single person. This makes it difficult to build the personable and trusting relationships that can help people feel safe. This can leave people feeling frustrated and unsupported, particularly those who already have a high level of distrust of services in general.

Other points around this included:

• individual circumstances mean that people do not get the same information about service or support
• workforce should be given training to make sure they are giving the same levels of care
• people’s records do not share information between different services. When their circumstances change they do not automatically update across all records
• information needs to be shared with the people that are involved in a person’s care

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

“Bridge of communication - there’s no communication” – Simon Community session participant.

“Some travellers also travel across the Scotland/England border and so information would also need to travel across that boundary” – MECOPP session participant.

“There is lack of communication between GP and acute healthcare and that is a huge gap” – MECOPP session participant.

How we will use this

We want to develop services that can be used in both the health and social care sector. We want to use international standards to help the sharing of information outside of Scotland when needed. Understanding the issues experienced when information is not shared between professionals in different places is useful. It will also help us to design and build services that can be accessed through different ways such as online, telephone, in person.