“The big topic everyone’s ignoring”: tackling kidney disease in Wales

Around 10,000 people suffer from kidney disease in Wales, people talk about the difficulties they face and try to raise public awareness on World Kidney Day.

On World Kidney Day, organizers are saying kidney disease doesn’t get enough attention.

“‘We have your daughter’s blood results and they show some renal issues.’ On a Thursday evening in March 2016, Ffion’s and our lives were permanently transformed by a phone call from her GP,” said Julie Mein. Her daughter was only five years old when she was found to have impaired kidney function.

Over the next few days, Ffion did multiple blood tests in the hospital, with the subsequent investigations by Dr Hegde at the Children’s Kidney Centre, she was diagnosed with Mainzer Saldino Syndrome, a rare genetic disorder that means Ffion has chronic kidney disease, retinitis pigmentosa and skeletal dysplasia.

Finally, Ffion was predicted to need a kidney transplant by the time she was a teenager. 

Kidney disease means that the kidneys are not working well enough to remove waste products from the body. Around 10% of the UK people have chronic kidney disease (CKD). Most patients with CKD do not have significant symptoms and the condition may not progress further, but once it deteriorates, it can eventually lead to kidney failure and the need for dialysis or a kidney transplant.

However, according to Children’s Kidney Centre, Cardiff and a Wales renal support charity Paul Popham Fund, kidney disease is being ignored by many people. On the header image of the Charity’s Twitter, next to World Kidney Day is a line saying: “The big topic everyone’s ignoring”.

“Because it is not a very ‘visible’ disease, it can be easily ignored. Children will suffer from tiredness, poor appetite, weight loss and poor mental health and those around them might not realise, how ill they really are. This is the same for adults,” said Judith van der Voort, who is the Consultant Paediatric Nephrologist from Children’s Kidney Centre, Cardiff.

“The most important message about kidney diseases for the public is that it is quite invisible but no less problematic. It can really affect somebody’s quality of life and also their longevity.” 

Like many other kidney patients, Ffion suffered from poor appetite, loss of energy and the pain of dialysis. The illness has affected her health, as well as many aspects of the whole family.

“Prior to having a transplant, my daughter would be extremely tired, would have very little or no appetite, had high blood pressure and was on dialysis for a short period of time. She also didn’t grow as well as her peers. She would miss out on school quite a bit either due to ill health or frequent hospital appointments. She was also on a lot of medication,” said Julie.

Judith said: “One of the hardest things for a lot of patients, is the need to restrict the amount of fluid they can take in a day. Patients are constantly thirsty, but if they drink more, their blood pressure will increase, which can be dangerous…… They have to take medication, several times a day and a lot of them. This is hard to remember, hard to swallow and often gives them side effects.”

As a parent of a child with kidney disease, Julie did feel quite isolated and helpless. “It’s also extremely hard watching your child go through constant blood tests as that is the only way their function can be monitored and not being able to do anything about it. My daughter also had to have a gastric feeding tube fitted for a short period of time because she wasn’t eating enough due to having no appetite and this was so distressing to both for her and myself.”

Judith also refers to the pressure that kidney disease places on parents. “Parents of children with kidney disease might lose their job, look after their child’s illness and develop financial problems. They might have donated a kidney, which means they might be off work for 3 months.”

“There is often a lot of hardship, both financially and emotionally, when a family has a child with kidney disease,” Judith said.

Life went on, and while dealing with her daughter’s condition, Julie had to face other challenges in life. She said: “Life doesn’t stop simply because your child has Chronic Kidney Disease, and it’s tremendously difficult to manage it all without it affecting you at some point.”

After Ffion’s diagnosis, her parents were referred to the Child Psychology team to build coping strategies and this team also helped Julie a lot in tackling many things.

Kidney disease can be mentally stressful for both children and parents. Children’s Kidney Centre, Cardiff hopes to help them by the input of the multidisciplinary team, Judith said: “[The team] consist of a psychologist, social worker, dietician, specialist nurses, play specialists, youth worker and doctors. ”

However, the work of the multidisciplinary team has not gone smoothly. “We really work as a team, but have a shortage of funding for a psychologist and social worker…… We are able to provide good medical care, but we are really failing on the multidisciplinary care: we have no stable funding for a psychologist and currently, employ somebody for one day a week for two years. This is well below the need of our children. ”

“This year Kilometres for Kidneys is launching on World Kidney Day, the 10th of March and we have pledged to raise awareness and educate others about kidney disease,” Nikkila said

The Paul Popham Fund is one of the supporters of Julie Mein and Children’s Kidney Centre, Cardiff. The Charity, set up in 2013, is dedicated to improving the quality of life of people with kidney disease.

“The Paul Popham Fund has helped fund social workers and psychologists. It provides ad hoc money for families of patients who are admitted and have enormous extra costs to stay, park and eat in hospital as well as commute,” said Judith. 

On World Kidney Day, March 10th a running or walking challenge organized by The Charity started to raise awareness of kidney disease and to help the refurbishment of the Children’s Kidney Centre, Cardiff.

In the following 31 days, participants will run or walk the distance of their choice, from 20km to 270km, which represents the distance from the Children’s Kidney Centre, Cardiff to one of the other hospitals.

“Our participants have been encouraged to share their kidney story in support of World Kidney Day. Additionally, this year we have introduced a Bingo Challenge Card…… within this, we have set challenges like, post about World Kidney Day, Share Your Story, to raise awareness of kidney disease,” said Nikkila Thomas, who is the Children & Youth Support Co-ordinator from the Paul Popham Fund.

“People can still sign up after the 10th of March, we encourage people to sign up and to get involved!”

Nikkila explained how this event will help the patients in the Centre. “All funds raised will be going towards our goal to raise £132,000 for the refurbishment of the Children’s Kidney Centre. This refurbishment project will indirectly help the children who are cared for at the Children’s Kidney Centre, as it is currently outdated, dark, and depressive.”

“The refurbishment will improve the outpatient department by creating better lighting and facilities, make visits safer and more enjoyable and provide a child-friendly environment which will calm and reassure children and families who are feeling anxious.”

In February 2021, Ffion finally received a successful kidney transplant from her father and she is currently undergoing treatment for other conditions. Julie Mein is doing a lot of fundraising for the Charity to support the refurbishment of the centre, as an expression of gratitude and support for those who are suffering in the same way.

“[I want] to continue to help and support other parents and carers going through the same thing. Shared experiences and support can make a massive difference.”