Disjointed Long-Term Care Putting Patients at Risk: Report

An investigation has found that poor coordination of care in the NHS is putting patients with long-term or complex conditions at greater risk of harm.

The Health Services Safety Investigations Body (HSSIB) found that fragmented care is leaving patients and those caring for them feeling distressed and “burnt out.” It also leads to delays, missed appointments, more intensive treatment in the future, worsening health, and longer or more frequent hospital stays. 

Challenges for Patients with Multiple Conditions

While some patients or caregivers manage communication between providers, many struggle – especially those with multiple chronic illnesses. 

The HSSIB’s report found that the system “frequently fails to support care co-ordination across multiple care pathways.” Instead, it tends to focus on individual diseases or issues. “This can leave people who have complex long-term conditions with uncoordinated care,” it said.

Long-Term Conditions Affect Millions

In England, an estimated 41% of adults and 17% of children have at least one long term condition. Around 15% of people live with two or more – a figure that increased by around 70% between 2004 and 2019. The findings were based on interviews with patients, carers, healthcare providers, integrated care boards, charities, and national bodies.

Patients and carers told the HSSIB that the system was not joined up. Health and care organisations often cannot access one another’s information, leading to missed opportunities for coordinated care.

Key Findings Highlight Systemic Gaps

The report identified several recurring issues:

• Inconsistent definitions of care coordination.
• No designated person or organisation responsible for overseeing care across multiple services.
• Patients or carers often act as the main link between providers, which is difficult if they are unwell.
• Many patients must repeatedly recount their medical history to different teams.
• Gaps in information sharing can affect decisions, especially out of hours.
• Discharged patients may have no point of contact for ongoing care.
• Many patients and carers feel exhausted, frustrated, and let down by the system.
• Some patients and carers disengage entirely, worsening their health outcomes.

Recommendations

The safety body recommended that health and care organisations allocate a point of contact for patients or their carers when people are discharged from services out of normal working hours. It said that all patients with long-term conditions should have a single point of contact available 24/7 for advice and support.

NHS England and the Department of Health and Social Care should work with each other and relevant organisations to review and evaluate the implementation of the care co-ordinator role.

The HSSIB also called for a strategy to ensure that all conditions are treated equally and that patients in primary, secondary, tertiary, and community or social care can receive properly co-ordinated services.

Patients Feel System Works Against Them 

Neil Alexander, HSSIB’s senior safety investigator, said patients and carers shared “powerful testimony” about the emotional toll of disjointed care. People 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,” he noted in a press release.

Many said they could not access specialist staff when they needed help.

Alexander acknowledged the challenges facing healthcare providers, especially under resource pressure. He said the recommendations focus on building a workforce that can deliver personalised, coordinated care.

The report is the fourth of a planned series of five from the HSSIB focusing on workforce and patient safety.

Dr Sheena Meredith is an established medical writer, editor, and consultant in healthcare communications, with extensive experience writing for medical professionals and the general public. She is qualified in medicine and in law and medical ethics.