Navigating health system can lead to ‘burn out' for some patients
Some people with long-term health problems feel 'burnt out' as a result of trying to navigate a 'difficult and complex' health and care system, according to a new report.
The health safety watchdog has highlighted how people who are unable to navigate the system on their own can be 'forgotten about' as they miss appointments or they care is delayed.
The Health Services Safety Investigations Body (HSSIB) said that the health and care system 'frequently fails to support care co-ordination'.
It warned that people's care can be impacted when they are unable to coordinate their own care.
' 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 authors wrote.
Patients are forced to frequently repeat their health history to different health or care workers, they said.
And the authors highlight concerns over out of hours care including an 'information gap' where health and care providers do not have all of the right information when needed.
'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,' they added.
The authors highlight how the NHS has made a definition of an 'NHS care coordinator' but they said that there is variation in how the role is implemented.
HSSIB called on the Government to review the role to ensure people have a single point of contact when needed.
Figures from the Health Survey for England show that 41% of adults and 17% of children had at least one long-term medical condition.
Neil Alexander, senior safety investigator at HSSIB, said: '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, 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.'
Department of Health and Social Care spokesperson said: 'This government inherited a broken healthcare system and we recognise the difficulties that people with long-term conditions can face in accessing care.
'We want a society where every person receives high-quality, compassionate continuity of care and can access the specialist services they need.
'Through our 10 Year Health Plan, we are shifting our health service from sickness to prevention and from hospital into community. This includes plans for neighbourhood health centres, so care for those with long-term conditions can be carried out in the community, in one place.'
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