Navigating England’s “complex” health and care system is “extremely difficult” and carers and patients are experiencing burnout, distress and harm as a result, a damning report says.

There were frequent failures by NHS and care organisations in coordinating care for people with long-term health conditions, the Health Services Safety Investigations Body (HSSIB) found. Figures show 41% of adults and 17% of children have at least one long-term health issue.

The report said patients unable to navigate the health and care system were getting sicker as a result, missing vital appointments, and their care could be delayed or forgotten about, meaning they may need more intensive and expensive treatment in future or longer stays in hospital.

Patients and carers had to retell their health history to different health and care providers, the research showed. The system was not joined up and information did not flow well across health and care organisations, patients and carers told the investigators.

This was making people exhausted and feeling burned out, frustrated, angry and guilty, the report says. Some patients’ and carers’ physical and mental health was deteriorating because of the extra burden of navigating the health and care system.

Some people were disengaging with the health and care system because they were exhausted and frustrated, which the report says could result in their health deteriorating further.

Neil Alexander, a senior safety investigator at HSSIB, said: “Long-term care is complex and we acknowledge the challenges faced by providers, especially at a time of extreme pressure on resources. However, our investigation emphasises that if care is not properly coordinated, those with long-term conditions and their carers can suffer mental and physical deterioration and harm. Patients can need more intensive treatment or longer stays in hospital, placing further pressure on services.

“The stories and experiences shared with us provided powerful testimony as to the impact on people. Patients and carers were open about their feelings of anguish and exhaustion, their anger, sadness and loss of trust in a system they felt sometimes was fighting against them. Many told of the frustration at not being able to speak to the specialist and dedicated staff who would be able to help them.”

He added: “This is why our findings and recommendations are aimed at national organisations and the emphasis is to improve the capacity and capability of the workforce to deliver personalised, coordinated care. The administrative burden on patients, carers and staff would be reduced, but most importantly it will relieve the fear and anxiety at being left to cope alone without the right support.”

The report also raises concerns about out-of-hours care, including an “information gap” where health and care providers do not have all of the right information when needed.

Investigators found there was wide variation in how the current role of “NHS care coordinator” was implemented. The HSSIB has called on ministers to ensure patients and carers have a single point of contact when needed.

The Department of Health and Social Care has been contacted for comment.