Bringing positive change to mental health
This year kidney patients have been sharing their mental health experiences as part of our campaign calling for improved access to specialist mental health support from renal counsellors. Now, a new Government consultation on mental health provides a key opportunity for kidney patients’ voices to be heard.
Timed to culminate on World Kidney Day, the first wave of our campaign saw over 1,000 kidney patients respond to our mental health survey* with concerning results. The survey revealed that two thirds (67%) of kidney patients experienced symptoms of depression while living with kidney disease, with 27% of those surveyed saying they have considered self-harm or suicide as a result of their kidney disease.
Despite this, 68% of respondents said they had not been offered any mental health support. The survey pointed to additional serious consequences, with a third of kidney patients saying their poor mental health meant they were not able to fully take care of their physical health.
Many participants admitted the emotional and physical strain involved in kidney disease and its treatments left them despairing and isolated. Patients often felt unable to talk to nursing staff about their mental health; many who did access psychological support felt a more specialist knowledge from providers would have resulted in better empathy and support.
With this information, we launched our campaign, targeted at politicians, calling for all kidney patients to have access to renal counsellors from the point of diagnosis. Over 130 people petitioned their political representatives to raise the issue with the health ministers in each devolved nation.
“We were pleased to see MPs and MSPs engaging on the topic, meeting with patients and writing to the minister,” says Alison Railton, head of policy and external affairs at Kidney Research UK. “It was a positive start to the campaign.”
The Government has since published a consultation on a new Mental Health and Wellbeing Plan for England. This ‘call for evidence’, which gives everyone the chance to share their experiences, will shape a new 10-year mental health plan to prevent mental health conditions, improve mental health support across the country and put mental and physical health on an equal footing. The consultation is open until 7 July.
“Kidney Research UK will be responding to the consultation, and we encourage patients and families to share their views too,” says Alison. “The more kidney-related responses which are submitted, the louder the kidney voice will be. Our survey shows many kidney patients are living with mental ill-health, yet access to support is poor. This consultation gives the kidney community the chance to call for change . We will be seeking similar opportunities in the other nations.”
Meet Ayesha, who's waiting for a transplant
Ayesha Edmondson has focal segmental glomerulasclerosis (FSGS) and faces a six-year wait for a kidney transplant, likely to be preceded by dialysis. Forced into retirement after a 30 year career in retail, due to terrible fatigue and other medical conditions, perhaps it is unsurprising that her mental health has suffered.
“A routine visit to the hospital during Covid 2020 triggered a chain of events that would change me forever. I must have said something to my regular renal nurses about how I was struggling.
A few days later I received a phone call from a member of the renal counselling team. She asked was I happy to have a chat as my nurse had noticed I wasn’t myself at the last visit.
I remember crying because I didn’t realise I had got to the point where I needed to talk to someone. I was spiralling and I didn’t know how to stop it. My mind was full of questions, ifs and buts. I couldn’t control it, let alone manage it.
The call couldn’t have come at a better time; being isolated from family and friends because of Covid made things worse in my head. But after months of therapy I came out the other end with an understanding of how I can cope with my journey.
So when I was invited to take part in the mental health survey planning group I was excited to share my experience. It’s crucial to people to know what they are feeling is kind of normal and that help is available.
I was happy to talk to my MP to gain his support to make mental health services available to all kidney patients. People should have what I had: fantastic support. If I could help make a difference, I wanted to try.
*The survey ran for three weeks from 22 January 2022 and the results were independently verified by the research agency SAPIO Research. Adults at all stages of kidney disease were surveyed, including those on dialysis or waiting for a transplant.