During an investigation which examined the co-ordination of primary and community care for patients with long-term conditions, we found there is a considerable burden placed on patients with long-term conditions and their loved ones.
Navigating multiple care pathways
The report states: ‘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 with long-term and complex conditions at a greater risk of harm because their care goes uncoordinated.
Our report emphasises 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.
Statistics in the report show 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.
Patient stories
Patients and carers shared with us their experiences and the impact on them when care is not co-ordinated. These conversations highlighted that, even with differing circumstances and long-term conditions, many of their experiences are similar.
Common themes emerged relating to patient and carer distress and they told the investigation about the anxiety caused by not being able to find the right person to talk to about care, creating the feeling they were “alone” in the system.
The experiences shared were highlighted with four examples of patient stories in the report, ranging from parents of a child with a life limiting neurological condition to a patient co-ordinating his own care after a stroke. In one case, a man in his late seventies was acting as a care co-ordinator for his wife. He told us that “twice in 3 years … [the patient] has been harmed due to the system not working together”.
Age UK and Carers UK also shared their insights and concerns with us about the impact on patients and carers.
Key findings
Some of the key experiences/findings relating to patients and carers in the report include:
- 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.
- 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.
Professional care co-ordinator role
A focus of the investigation was on the role of the ‘care co-ordinator’ – someone who is able to connect patients/carers with the right care and support. The NHS has produced a definition of the professional role and we found there is significant support for this role.
However, there was a variation in how it is interpreted and implemented in practice across all areas of healthcare. Patients and carers told us that if this role was implemented as it is written by NHS England, it would significantly ease the burden of care co-ordination on them.
The investigation identified that currently there is not a single person or organisation responsible for co-ordinating care for those with multiple long-term conditions. During the investigation, we spoke to healthcare providers, integrated care boards, national bodies, charities and the voluntary sector. All talked openly of the challenges they face in co-ordinating care and the workforce resources needed to do this well. There was consistency in the challenges mentioned by the providers, which centred on communication between organisations, and where and how responsibilities passed between them.
Safety recommendations
Our report includes examples of effective care co-ordination 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. We’ve made two safety recommendations aimed at ensuring patients have long term co-ordinated care plans with effective communication between services and a single point of contact.
Investigator’s view
Neil Alexander, Senior Safety Investigator at the Health Services Safety Investigations Body (HSSIB), says: “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. 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.
“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. 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.”
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