Mental Health Awareness Week drives call for more support for kidney patients

By Rosie Loft I 16 May 2016

To mark Mental Health Awareness Week (16-22 May), Kidney Research UK is highlighting the psychological impact of kidney disease.

“There is no such thing as physical health without mental health,” says Dr Joseph Chilcot a Lecturer in Health Psychology at King’s College London (KCL).

His research, funded by Kidney Research UK, has shown that kidney disease is more likely to be fatal in patients who are depressed and have a negative perception of their condition. 

“Believing strongly that your kidney problem and its symptoms are controlled by dialysis, taking the various medications, dietary restrictions and so on, is protective in itself. It is a helpful set of beliefs that is associated with increased self-management and better adjustment to the challenges of kidney disease,” continues Dr Chilcot.

But such a set of beliefs may be challenged to the extreme if complications arise in treatment. Alongside Dr Chilcot’s research sits a growing body of work in kidney disease from researchers from Europe and America which shows that depression symptoms are linked to the progression of kidney disease, including the chances of survival.

Kidney patients face an uncertain future as neither dialysis nor transplant are permanent solutions to kidney disease, and many report that access to support services is lacking.

Those on dialysis are at particular risk of complications and can sometimes experience debilitating side effects, as James Fenwick and his wife Emma Ross discovered. James was diagnosed with renal failure in 2007, the kidney from his dad began to fail in 2014. Within the space of just over 12 months the couple had to deal with transplant rejection, accept the reality of living on dialysis and cope with a devastating diagnosis of avascular necrosis – an unexpected complication which has destroyed bone tissue in James’s hip due to a lack of blood supply.

They have also faced serious infections, numerous operations and family bereavement – all while trying to adapt to life as new parents to their daughter Charlotte.Although James’s physical condition was always well-monitored there was no similar system in place to focus on the emotional impact of his experiences – a situation which eventually led to James suffering a breakdown.

“Things had been getting on top of me for a while. I was struggling with it all. I went to dialysis one day and just broke down,” says James. “I was referred to the in-patient counselling service. She came to see me for an initial consultation, saw what state I was in and decided to see me straight away. She was fantastic. I was offered one-to-one counselling. She’d come and sit with me while I was on dialysis to avoid me having to spend even more time in hospital. I’d get hooked up to the machine in a private room and then we’d have our counselling session in there.”

Emma is passionate about the need for the system to improve. “The sessions were only supposed to last for eight weeks but we knew we needed more support and that’s really the point – dialysis doesn’t last for a few weeks. You need ongoing support and support right from the start rather than having to wait until we’re at rock bottom before we can get anybody to help us,” she says.

Specialist renal counsellors available at the point of diagnosis for all patients and their families would be one solution, but provision of these services is patchy.

Kidney Research UK and other institutions are investing in researching the benefits of a variety of interventions.Dr Chilcot and his team at KCL are currently trialling an online tailored cognitive behavioural therapy.

Patients attending hospital for dialysis are being given iPads through which they receive online tailored cognitive behavioural therapy whilst dialysing. Another initiative is called the Shared Haemodialysis Care project led by a team at Sheffield Teaching Hospitals NHS Foundation Trust in collaboration with partners including Kidney Research UK.

Nurses help patients learn how to perform a series of treatment-related tasks associated with haemodialysis, such as preparing equipment, measuring weight and blood pressure, and self-cannulation. Patients take on as many of these tasks as they feel comfortable with. Patients involved in the original project have become more confident, regaining a sense of control and independence, and reported better psychological and physical outcomes.

The associated increase in home-based dialysis during this period has resulted in an estimated saving of £1.2m to the NHS over the last five years.The initiative has just received £500k as part of the Health Foundation’s Scaling Up programme to roll out across 12 renal units.

Sandra Currie, Chief Executive at Kidney Research UK said, “Research has proven that mental health is just as important as physical health to the wellbeing of kidney patients. The ideal patient pathway would involve a personalised package of care that would support and integrate patients’ physical and mental health needs from diagnosis onwards.

"We know investment in this area works, as demonstrated by the equal weighting given to mental health support for cancer and heart disease patients, and we would like to see kidney patients offered the same level of access to mental health support networks and services.”

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