Kidney Care UK held a roundtable event at the Scottish Parliament on 25 February to highlight the mental and social (psychosocial) impact of kidney disease and urgent need for increased psychosocial support for people with CKD in Scotland.
The roundtable, supported by Dame Jackie Baillie MSP, was attended by kidney health and social care professionals, patients, charities and policy makers including the Minister for Public Health, Jenni Minto.
Attendees heard from people with kidney disease and from many of Scotland’s only kidney psychosocial care professionals working in the fields of social work, psychiatry, clinical psychology, as well as Scotland’s only renal young adult support worker.
Fiona Loud, Director of Policy at Kidney Care UK, presenting Kidney Care UK's ‘Left to get on with it’ report findings, made a number of clear and urgent recommendations to government:
Please work with us in the next Parliament to prioritise psychosocial support for people with kidney disease in the future long term conditions framework. Alongside funding, we are asking for more of the amazing psychosocial health care professionals who provide this support.
In response, the Minister for Public Health acknowledged the psychosocial impact of CKD and her continued willingness to work with Kidney Care UK on this important issue. She conveyed that people should be allowed to thrive and that future health care frameworks in Scotland must strengthen psychosocial support.
People living with kidney disease described the psychosocial impact of living with CKD, the absence of psychosocial support and the stark impact of its absence:
You’re expected to cope with organ failure, life-long treatment, with the trauma of transplant, organ rejection, dialysis without the essential psychosocial support you so urgently need and, I believe, deserve.Kidney patient
Untreated depression and anxiety in renal patients doesn’t just affect quality of life – it affects adherence, physical outcomes, transplant success, and overall mortality. When psychosocial care disappears, charities and peer support groups step in... but charities should enhance services, not replace what should be standard NHS provision.Kidney patient
The postcode lottery of kidney psychosocial service provision in Scotland was highlighted by both those with lived experience of kidney disease and psychosocial professionals:
We can clearly see the advantages of a renal social work service but know that this is not replicated in any other Scottish renal units. There is also no paediatric renal social work support at all in Scotland.Adult kidney social worker
Too many young adults with CKD are left to cope alone. Without specialist renal psychosocial support, we see young people struggling with anxiety, isolation, loss of confidence, and disengagement from treatment, at a critical stage of their lives. This service is the only one of its kind in Scotland, and it matters.Renal young adult support worker, NHS Lothian
It was noted that where psychosocial support was available, it was often only provided at the point where a person’s kidneys had completely failed.
An urgent call to the Scottish Government was made for social and emotional support to be made available to everyone with kidney disease throughout Scotland from point of diagnosis onwards:
I have been left to fend for myself because Scotland has been let down time and again with no, or very little access to psychosocial support! Please, I implore you, don’t give us sound bites today, give us the change we are all screaming out for and let us all flourish and be active citizens with the same opportunities as everyone else.Kidney patient
I am not asking for anything to be taken away from any other medical conditions, all I am asking is this: Why not renal? Why do we not deserve to receive the psychosocial support we need? Kidney disease is lifelong, there is no cure. This cannot remain a postcode lottery. The psychological burden is continuous and no patient should have to endure it alone.Kidney patient