At Kidney Care UK we believe that everyone with a long-term condition must have equal access to the mental health and social (psychosocial) care support they need.
A freedom of information (FOI) exercise conducted by Kidney Care UK during Spring-Autumn 2024 to all 14 NHS health boards in Scotland has revealed that dedicated social and emotional (psychosocial) support for people with kidney disease in Scotland is alarmingly inadequate.
FOI data collected by Kidney Care UK suggests that:
- only one health board in Scotland currently has any designated renal social work support for adults with kidney disease (with the social workers in this health board also dedicating some of their time each week to assisting kidney patients in another health board)
- no health boards have a renal counsellor
- one health board has a renal psychiatrist
- only one health board has a designated renal psychologist.
For children with kidney disease in Scotland there are no designated renal social workers, renal psychiatrists or renal counsellors and only one health board has any designated renal psychology support.
Research tells us that supporting the psychosocial needs of people with kidney disease helps them live longer in much better health. With the absence of dedicated renal psychosocial support in the majority of health boards in Scotland, Kidney Care UK fear that many people with kidney disease in Scotland are not getting the social and emotional support they need.
What are Kidney Care UK doing
Kidney Care UK provides national renal counselling and direct patient services, as well as financial support through patient grants, but it shouldn't only fall to the charity sector to pick this up.
We are campaigning to ensure the UK government and devolved governments work towards achieving an integrated whole-system approach to the social and emotional wellbeing of everyone living with kidney disease.
Kidney Care UK led the formation of the National Psychosocial Working Group (NPWG) which combines expert voices from across the specialist renal psychosocial care professions. In June 2022, Kidney Care UK with the NPWG launched the Psychosocial Care Manifesto setting out ten key recommendations for the improvement of the psychosocial care provided for all people living with kidney disease.
The Manifesto has been shared far and wide including with Government, policy makers and renal health care professionals. The NPWG has also successfully developed some level 1 (introductory) renal staff training on psychosocial support for patients and is co-developing further (level 2) resources.
What needs to happen
Targeted and timely mental health and social care interventions can save lives because patients will remain healthier for longer.
Kidney Care UK is calling on the Government in Scotland and Westminster to:
- Ensure everyone with kidney disease is offered appropriate mental health and social support that fully supports their level of need, as part of their standard NHS care and irrespective of where they live in the country.
- Adequately fund and resource the integration of mental health services into kidney care settings, including psychosocial training for all renal staff, monitoring renal staffing levels and developing clear pathways.
- Introduce and monitor minimum national standards of psychosocial care so all patients receive equal access to the care they need, regardless of geography.
- Assess the mental health and social needs of all kidney patients assessed using validated methods at diagnosis, as they change treatment, go through different stages of kidney disease, annually and when they are in distress.
My home (dialysis) therapy nurse persuaded me to see the renal psychologist. What a godsend. Like a jigsaw, she emptied me, then gradually put me back together.Nikki, kidney patient
How you can help
Join Kidney Care Campaigners
We want to create a movement across the UK that campaigns for better support for people living with kidney disease. Coming together to campaign, in whatever way you can, will help us achieve change. If you are a kidney patient (family member or carer) or a kidney health care professional please help us campaign for change by joining Kidney Care Campaigners.
Contact your MP/ MSP
Your MP/ MSP represents you in Parliament. If you want them to act on this and other kidney issues that matter to you, you can email or write to them.
We cannot let the repeated absence of appropriate mental health and social support to continue. Now is the time for us all to act to ensure that people living with kidney disease get the help they need.
Patients must never be made to accept that poor mental health comes part and parcel with a long-term condition.