‘Left to get on with it’: The real impact of inadequate psychosocial support in kidney care

Kidney Care UK have published a new report revealing the significant social and emotional toll of living with kidney disease.

People with kidney disease are around twice as likely to experience anxiety and depression yet are unable to access psychological and social (psychosocial) support from their medical teams. That’s according to ‘Left to get on with it’: The real impact of inadequate support in kidney care, a new report published today by Kidney Care UK.

More than 8 out of 10 respondents (81%) told the charity that they needed kidney specific emotional support from their kidney team, but were unable to get this. Almost half (49%) said that they had never been asked about their mental health by their kidney doctor. This supports existing research that has identified a significant variation in the psychosocial care provided to kidney patients across the UK.

More than half of the survey respondents stated that they currently were experiencing, or had in the past experienced, feelings of anxiety (51% currently, rising to 59% in the past), and more than a third reported that they were either currently depressed or had felt depressed in the past as a result of their kidney disease (34% currently, rising to 43% in the past). This compares to an average of approximately 23% experiencing anxiety or depression in the general population according to the latest data from the Office for National Statistics.

Depression is common among people with kidney disease and is associated with an increased mortality risk. Yet, despite the clear evidence of need, access to psychosocial support remains inconsistent, fragmented and, in many areas, unavailable.

The poor recognition of kidney disease translates into inadequate levels of psychosocial care and can exacerbate the difficulties people experience when confronted with kidney disease, and especially kidney failure. The message from the many people who took part in our survey is that improvement needs to start with a formal assessment of their needs, which would lead to better planning for and provision of care, developed with patients.Fiona Loud, Director of Policy at Kidney Care UK

Their Bloody Amazing Kidneys campaign highlighted that too many people are finding out about their chronic kidney disease (CKD) diagnosis without the context needed to understand what that means for them.

Many often discover the diagnosis out of the blue on their NHS App, having never been told about this, and for some their diagnosis has been present for many years, which can come as a shock.

A lack of awareness amongst the general public about the seriousness of kidney disease often compounds feelings of isolation amongst people living with the condition who are left feeling as though even their ‘friends and family don’t truly understand’.

The ‘Left to get on with it’ report contains recommendations for change and actions for governments, policymakers, health trusts, health boards, integrated care boards, health and social care partnerships and GPs. These include (but are not limited to):

• Ensuring that there is a regular formal assessment of an individual’s psychosocial needs and that this assessment is fully integrated into their care plan as standard practice in all NHS kidney teams.
• Carrying out an audit of the current psychosocial service provision across the UK and acting on findings.
• Ensuring that specialist kidney psychosocial support should be available in all kidney units.
• The introduction of national CKD psychosocial guidelines to ensure minimum national standards of psychosocial care.
• The inclusion and prioritisation of psychosocial support for people with kidney disease in any future long term conditions policy and frameworks such as the NHS 10-year plan.

Read the full report.

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