A new report from HSSIB finds that a lack of coordination of care for people with long-term health conditions is taking its toll on patients and carers. 

A lack of coordination of care for people with long-term health conditions is taking a toll on patients and carers who are suffering burnout, distress and harm. 

The latest report by the Health Services Safety Investigations Body (HSSIB) which examined the co-ordination of primary and community care for patients with long-term conditions, finds that there is a considerable burden placed on patients with long-term conditions and their loved ones.

“The health and care system frequently fails to support care coordination across multiple care pathways and instead focuses on individual diseases or issues,” the report says. This can leave people with long-term and complex conditions at a greater risk of harm because their care goes uncoordinated.

The report makes the point that people who have a long-term condition may be in contact with multiple health and care organisations. Patients, and their family member(s) or friends, can act as the person to co-ordinate these services but it can be extremely difficult to navigate their way through the complexities of the health and care system. This becomes especially challenging when a person has multiple long-term conditions.

Lack of coordination

“Our investigation emphasises that if care is not properly co-ordinated, 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,” said Neil Alexander, the HSSIB’s senior safety investigator. 

The report shows that 41% of adults and 17% of children in England have at least one long-term medical condition and another research study highlights that 15% of people are living with two or more health disorders.

It concludes that 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. 

The report finds that 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. 

What this means is that 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. 

In the worst cases, 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.

Effective communication 

The HSSIB report includes examples of effective care coordination programmes that attempt to address challenges at a local level. These programmes aim to provide effective communication and information sharing, integrate health and social care and have people in roles who are empowered to make connections across health and care. 

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 coordinated across multiple agencies. 

This is to ensure that people with long-term health conditions have coordinated care plans with effective communication between services and a single point of contact for concerns or questions.

“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,” said Alexander.