HSSIB Investigation Report: Workforce and patient safety - primary and community care co-ordination for people with long-term conditions (10 April 2025)

Summary

People who have a long-term condition may be in contact with multiple health and care organisations and may experience harm if their care is not co-ordinated. This investigation focuses on people with long-term conditions and how their care is co-ordinated, specifically considering the role of ‘care co-ordinator’. It is intended for healthcare organisations, policymakers and the public to help improve patient safety in relation to co-ordinating care for people with long-term or complex healthcare needs. 

Content

Findings

• The NHS has produced a definition of the professional role of NHS care co-ordinator. However, there is variation in how this role is implemented.
• Other national organisations have different definitions of care co-ordination and care navigation, which can create ambiguity for people overseeing these roles.
• There is not a single person/role/organisation responsible for co-ordinating care for people with long-term or complex health and care needs across multiple health and care organisations.
• The health and care system frequently fails to support care co-ordination across multiple care pathways and instead focuses on individual diseases or issues. This can leave people who have complex long-term conditions with uncoordinated care.
• Accessing and navigating health and care services can be difficult and complex, and patients and carers would like improved service integration and care co-ordination.
• Patients and carers act as a central point for information and contact for providers, but when they are unwell or unable to do this, care can be impacted.
• People who are unable to navigate the health and care system can experience deterioration of health, miss appointments or their care may become delayed or forgotten about, meaning they may need more intense treatment in the future or longer stays in hospital.
• Patients and carers have to retell their health history to different health and care providers. They believe the system is not joined up and that information does not flow across health and care organisations, or that different parts of the system cannot access information from other providers.
• When patients are discharged from a health or care setting out of normal working hours they do not always know who they can speak to about any concerns or their ongoing care.
• Different methods of sharing health and care information can create an information gap, particularly out of hours and at the weekend, resulting in a situation where not all health and care staff have the appropriate information to make decisions.
• Patients and carers can feel exhausted, burnt out, frustrated, angry and guilty, among other emotions. Patients and carers physical and mental health may deteriorate because of the extra burden of navigating the health and care system.
• Patients and carers may disengage with the health and care system because they are exhausted and frustrated. This may lead to poor outcomes for both patients and carers.
• There are different ways of supporting care co-ordination across the system, some of which are assisted by the charity sector.

Safety recommendations

• HSSIB recommends that NHS England/Department of Health and Social Care, working with other relevant organisations, reviews and evaluates the implementation of the care co-ordinator role. This is to ensure that all patients with long-term conditions have their care co-ordinated and that they have a single point of contact 24 hours a day, 7 days a week, to help them with any queries or concerns that they may have.
• HSSIB recommends that the Department of Health and Social Care works with NHS England and other stakeholders, to develop a strategy that ensures that all diseases are given parity and that all people with a long-term condition in primary, secondary, tertiary and community or social care have their care effectively co-ordinated across multiple agencies. This is to ensure that people with long-term health conditions have co-ordinated care plans with effective communication between services and a single point of contact for concerns or questions.

Safety observation

• Health and care organisations can improve patient safety by allocating a point of contact for patients and/or their carers when people are discharged from services out of normal working hours. This will ensure patients and their carers are able to escalate any concerns relating to their ongoing care and drive improvements in care co-ordination.

Related reading on the hub:

Read Patient's Safety Learning's response to the findings and recommendations of this HSSIB report