Lifting the mental health burden of kidney disease.

Improving mental health provision for kidney patients is vital. Thanks to funding from the Andy Cole Fund, we have published our new report, ‘Addressing the mental health challenges of life with kidney disease: The case for change’.

Last year we received an overwhelming response to the survey we ran to gauge how kidney patients felt about their mental health and the support available. Supporters took up the cause and emailed politicians to address the lack of provision, shining a vital light on this fundamental issue.

Providing solid evidence

In a tough political landscape, it is more important than ever to present decision makers with a solid, evidence-based case for change. For the past year we have been working with Centre for Mental Health, which exists to build research evidence to create fairer mental health policy.

We commissioned Centre for Mental Health to produce a report exploring the mental health needs of people living with chronic kidney disease. They reviewed over 200 academic papers and spoke to people living with kidney disease, family members and healthcare professionals about their experiences. The report was launched in May and made clear recommendations.

Our report calls for:

• Investment into improved, tailored mental health support for kidney patients, using a stepped model of care (meaning the nature of the support offered becomes more specialised depending on the individual’s level of need).

• Renal treatment service providers to ensure all staff are trained, supported and supervised in routinely assessing patients’ mental health, offering appropriate support, rapid referral where necessary and asking patients regularly about the quality of support they receive.

• Government to invest more funding into research in kidney disease and mental health to enable the ongoing development of services.

The report confirmed that kidney disease and its treatments place an enormous burden on kidney patients’ mental health – but the right mental health support helps patients stay physically and emotionally well for longer. This is something beauty therapist and kidney transplant recipient Sabina Saeed firmly believes.

Sabina was just five months old when her infected right kidney was removed, but she was in and out of hospital throughout her childhood.

“I was bullied at school because of my condition and I felt so isolated and alone,” she says. “So I think counselling would be a great help.”

The report found that kidney patients need to access appropriate mental health support at the right time, delivered by a professional who understands kidney disease and the rollercoaster often associated with its treatment.

Support must be timely

Timeliness of treatment was key to Sabina’s mental health recovery. When she was 20 her mother donated a kidney but it began to deteriorate and following a life-threatening seizure in 2016, Sabina started dialysis. It was then that she was offered mental health support for the very first time.

“My doctors told me I needed someone to talk to because I’d get really down,” says Sabina, now 42. “I’d seen everyone around me moving on with their lives – marrying, holidaying, having children –but my life had just stopped. It was tough.

“Being on dialysis is exhausting. It brings you down. It’s heartbreaking. You’re living through a machine, sometimes on a daily basis. When I first started dialysis I was so tired I used to pass out.”

Sabina saw her psychologist once every three weeks for just over two years and says the sessions made her feel she was less of a burden on her loved ones.

“Sometimes it’s easier to speak to a complete stranger,” she says. “Seeing a therapist allowed me a chance to just talk and let it out – or on some days, cry my eyes out.”

Sabina’s experience of receiving regular support is something that all patients should benefit from, says Alison Railton, head of policy and external affairs at Kidney Research UK.

Andy Cole Fund

“We know most renal care is predominantly focused on physical health and many people are left unsupported, in poor mental health. Patients shouldn’t have to hit rock bottom before they are offered support – it is far harder to climb back up. Change is urgently needed and with the clear recommendations and compelling evidence within this report, we are in the strongest position to make that change happen.”

Add your voice

We are sharing our report with Ministers and key decision makers at the top of the NHS. You can also play your part. By sharing the report with your health professionals, even your local politicians, you can help ensure the recommendations are heard. Read the report in full on our website: www.kidneyresearchuk.org/mentalhealth-report

This report is close to our ambassador, footballing legend Andy Cole’s heart. Having experienced the darkest of times in his own kidney journey, improving kidney patients’ mental health through research is one of the founding principles of the Andy Cole Fund. We are hugely grateful to those who have supported the Fund and enabled this work to happen.