Citizens Advice mental health insights: people’s experience of care coordination

Citizens Advice mental health insights: people’s experience of care coordination [ 340 kb]

Mental health care coordination, such as supporting a person to manage their medication, or to arrange for their finances, is essential for people with mental health problems. In response to NHS England’s call out for evidence, this brief presents a feedback summary following two engagement events, with our clients with mental health problems, about their experience of mental health care coordination.

This brief highlights the following findings:

1. Care coordinators: Clients emphasised the value of the care coordinator’s positive attitude and regular communication in order to plan their care more effectively. However, they also highlighted that the eligibility criteria to have access to a care coordinator are very difficult, and out-of-hour care is also very limited. This results in mental health care often being transferred to GPs, who may have insufficient knowledge on how to respond to clients’ mental health problems.

2. Care plan: clients do not wish to share their care plan or health records, in advance, with clinicians. They fear that this usually leads clinicians to have a biased or judgmental opinion of how the person would communicate, or how their care should be. There is an emphasis that the care plan should focus on person’s needs and skills, rather than risks, and their care plan and records should not be shared without their explicit consent.

3. Service transition: many clients felt not ready to move to another service, but they were made to, with some reporting that they did not know what to expect of the new service. Some clients had a positive experience of service transition when it was made in gradual stages and regular communication between agencies and with the client.

4. Community alternatives for support: there is reluctance to use technology to access mental health support or care records online, due to the lack of training skills, a disability, and the lack of human interaction. However, clients welcome assisted technology by human support to navigate for mental health and community care. There was also a demand to access inclusive community centres, that are open to everyone, and not only for people with mental health problems. 

5. Choice and decision-making: client’s choice and decision-making were limited. Decisions were often made by clinicians for clients, such as agreeing drinking level, smoking habits, or medication doses. It was reiterated that such decisions should be made in agreement with clients.