A lack of care co-ordination across the health service for people with long-term conditions is causing harm to patients, a report has concluded.

The Health Services Safety Investigations Body (HSSIB) said extreme difficulties navigating the system meant people were getting sicker, missing key appointments and having delayed care.

Systems are not joined up with poor information sharing and patients and carers having to retell their health history repeatedly. Patients are experiencing burnout, distress and harm as a result, the HSSIB report found.

Navigating pathways for long-term conditions places 'burden' on patients

The investigation which centred on the co-ordination of primary and community care for patients with long-term conditions found ‘a considerable burden’ placed on patients.

It stated: ‘The health and care system frequently fails to support care co-ordination across multiple care pathways and instead focuses on individual diseases or issues.’

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Common themes found in the report included anxiety caused when patients and carers cannot find the right person to talk to about their care.

Ultimately, patients and carers may disengage with the health and care system because they are exhausted and frustrated, the HSSIB found.

The report, which spoke to healthcare providers, integrated care boards, national bodies, charities, patients and the voluntary sector, set out to look at care co-ordinators, a role for which the HSSIB said it found ‘significant support’ for.

Yet it uncovered variation in how the role was interpreted and implemented across the NHS, warning that ‘currently there is not a single person or organisation responsible for co-ordinating care for those with multiple long-term conditions’.

Patients and carers told the HSSIB that before they needed to use healthcare services, they assumed that carers or patients would not be responsible for chasing results and appointments and that information would be transferred between secondary, primary and community care but this was not the case.

'If we can't do this, how can patients cope?'

One GP practice told the investigation that it had tried to put together an easy-to-read document explaining the care pathway for patients with dementia, including contact numbers and ways to access services.

This had proven to be so complex that it was unable to bring together all the information commenting: ‘We are healthcare professionals and we can’t do this, so how can patients cope?’

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The report concluded that all people with a long-term condition should have their care effectively co-ordinated across multiple agencies with care plans in place and a single point of contact for concerns.

Neil Alexander, senior safety investigator at the HSSIB, said: ‘Long-term care is complex and we acknowledge the challenges faced by providers especially at time of extreme pressure on resources.

‘However, 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.

‘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.

‘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, co-ordinated care.’

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The Department of Health and Social Care said the Labour government had ‘inherited a broken healthcare system’ and recognised the difficulties people with long-term conditions can face in accessing care.

A spokesperson said plans for neighbourhood health centres would allow care for patients with long-term conditions to be carried out ‘in the community, in one place’.

A version of this article was first published on our sister title Pulse.