At Kidney Care UK, we have always recognised that kidney disease is not just a physical condition; it affects every aspect of a person’s life. The emotional, psychological, and social (psychosocial) challenges faced by people with kidney disease are profound, yet they are all too often overlooked and unsupported across our healthcare system.
The condition plays a huge part in your daily living. Need to work, can’t work, depression, worry, anxiety, relationship issues. Life in general can be hard, with no help.Kidney patient
Our ‘Left to get on with it’ report summarises the findings of a survey Kidney Care UK conducted (Jan–Feb 2025) with 1,796 UK adults living with kidney disease focusing on their social and emotional (psychosocial) needs and experiences.
The report builds on the recommendations of the National Psychosocial Working Group’s psychosocial health manifesto and reveals the significant social, emotional and psychological toll that kidney disease has on the lives of many of those who have it. It also highlights the inadequate levels and significant variations in psychosocial support available to individuals at the times when they need it most throughout their kidney journey.
Key challenges
The report identifies three key challenges to be considered to fully and effectively support the psychosocial needs of people with kidney disease:
- Challenge 1: Identifying the psychosocial impact of kidney disease
- Challenge 2: Identifying the psychosocial support needs of people with kidney disease and the barriers to effective support
- Challenge 3: Improving and providing effective psychosocial support provision for people with kidney disease
Key findings: experiences of people living with kidney disease
- 82% are experiencing fatigue and tiredness
- Over half report anxiety
- Over a third feel stressed and depressed
- A quarter have money worries
- 73% currently needing NHS psychosocial support are not receiving it
- 69% say their psychosocial needs have never been formally assessed
- 92% believe appropriate psychosocial support should be part of standard NHS kidney care.
Key recommendations
Audit current psychosocial service provision and act on audit findings.
Introduce national CKD psychosocial guidelines to ensure minimum national standards of psychosocial care.
Follow NICE guidance to take account of the psychological aspects of coping with CKD.
Make funding available for psychosocial service provision for people with kidney disease.
Prioritise and include psychosocial support for people with kidney disease into any future long term conditions policy and frameworks such as the ten year plan.
Prioritise the psychosocial support needs of people with kidney disease in their health care plans.
Make funding available and increase resource allocation for psychosocial service provision for people with kidney disease.
Regularly monitor and assess renal psychosocial support provision and take immediate action to address any gaps.
Ensure that specialist renal psychosocial support is available in all renal units.
Train NHS kidney team staff, GPs and Talking Therapies counsellors and therapists to have the knowledge and skills to identify the psychosocial needs of people with CKD and to have clear referral pathways in place for them to refer patients on to the services and support they need.
Ensure 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.
Act on and adopt national CKD psychosocial frameworks, policy and guidelines when and where they have been introduced.
Have the knowledge, skills and information to be able to routinely discuss the psychosocial impact that kidney disease can have with their patients and to refer and signpost individuals on to the psychosocial support they need.
Formally and regularly assess the psychosocial needs of patients and ensure that these needs are integrated into individual care plans.
Have access to specialist renal psychosocial support staff in all renal units.
Tell individuals about their CKD diagnosis early and in an appropriate manner so that they can take steps to control their CKD and, for some, to prevent it from progressing.
Have the knowledge, skills and information to be able to discuss the psychosocial impact that kidney disease can have with their patients and to refer and signpost individuals on to the psychosocial support they need
Kidney Care UK’s psychosocial support freedom of information findings
A Freedom of Information (FOI) exercise conducted by Kidney Care UK during Spring-Autumn 2024 to all 14 NHS health boards in Scotland revealed that dedicated psychosocial support for people with kidney disease is alarmingly inadequate. The findings showed that for adults with kidney disease:
- Only two health boards had any specialist kidney social work support
- No health boards had specialist kidney counselling support
- Only one health board had any specialist kidney psychiatric support
- Only one health board had any specialist kidney psychologists.
The discrepancies in psychosocial support identified within kidney units in Scotland mirror what we have seen nationally and are further evidence that psychosocial support remains a fragmented and inequitable part of kidney care.