Kidney Kids Scotland is the only Scottish charity supporting children with renal and urology illness and their families. Kidney disease has no cure, and the only way to prolong life is by treating with dialysis or transplantation. This is a disease the children and their family have to learn to live with. The charity’s main aim is to enable children to receive this treatment as close to home as possible, and minimize disruption to their family unit. In 2017, the JMA Trust awarded £5,500 to Kidney Kids . We were delighted to get some time with their founder, Sheena Dunsmore, who told us more about their incredible work, and how the JMA funding was used towards the Scottish team’s attendance at The British Transplant Games.
Kidney Kids was founded in July 2000, and Sheena told us that she hadn’t originally anticipated its long running success. “I knew Dr Anna Murphy, who was the head consultant at Yorkhill at the time. There wasn’t a pediatric renal service at that time in Scotland. There wasn’t a pediatric haemodialysis machine, so children who had end stage renal failure either died, or had to go abroad. This is only going back to 2000, it’s really not a very long time ago. She asked me if I would help her fundraise for a haemodialysis machine, but that was just the tip of the iceberg! And that’s why we started Kidney Kids Scotland.”
KKS have since supplied every one of these machines in Glasgow, an amazing achievement, but their work goes even further. “We’re part of SPRUN (Scottish Paediatric Renal Urology Network); that involves surgeons, consultants, nurses, dieticians, pharmacists, the whole service for the whole of the country. So I get to meet with consultants and others, from the Borders, Aberdeen, Inverness… and they say “Sheena, this would improve our service.” So we then step in.”
The Kidney Kids team rely on their communications with many of these specialist consultants and health care professionals to stay up-to-date and aware of what’s needed in different areas. For example, Sheena told us that until recently, children from Inverness would have to travel all the way down to Glasgow to be treated. “We have been able to pay for a consultant to go up there on a once-a-month basis, which means the children just have to go to their local hospital. That change is huge for a family. Apart from the travelling time, it involves siblings, mums and dads getting off work, and so much more.”
“At the moment, we’re also funding a nurse to set up home haemodialysis in Scotland. Right now, any child who needs haemodialysis has to travel to Glasgow three times a week. It doesn’t matter their postcode; they could be in Orkney, Dundee, wherever, and they have to go to Glasgow. A lot of the children have then got to relocate as a family to Glasgow, as this treatment is a lifeline for them. The home haemodialysis machine is just out, and has been trialed at Great Ormond Street Hospital. It’s a very new service. There’s always been home haemodialysis for adults, but not for children.”
While making remarkable progress in the format and delivery of treatments, Kidney Kids go above and beyond to care for all of those impacted by these young patient’s experiences. “Our main focus is supporting the family unit. This can involve helping with travel expenses, a new washing machine, new tumble dryer… We consider anything and everything. We don’t get any government funding, so we don’t have to go through anyone. That means if the family needs help, they get it then and there’s no delay. From what was originally to be a short project, we’ve actually given away £1.7 million in 17 years.”
The British Transplant games have been running for over 30 years, and in July 2017, they were held in North Lanarkshire, the first time the games had been in Scotland for 10 years. Kidney Kids used their JMA award to kit out the Scottish team, a consideration that has really improved the young people’s experience of the event. When KKS started in 2000, Sheena went along to see the children get on the bus to attend the games in Newcastle. “I was horrified to see that although some of the children were dressed from head to toe in designer gear, some didn’t even have a pair of trainers. They simply did not look or act like a team.” From there, the charity sponsored the team of renal children, who come from all over Scotland, to attend future games. “They get the tracksuit hoody, tracksuit bottoms, shorts, t-shirts, socks, trainers, a bag to keep it all in, and lots of other goodies. For them to get that is such a treat, and they wear them all year, they’re so proud to put them on. Before, they just didn’t look like a team. Now they look like the Scottish Team.”
“There’s so many things for them to do at The Games, it’s fantastic for them. It can get very competitive though, they’re all shouting along and getting involved! You can imagine that sense of freedom, as they’re normal kids now. It’s not just the children, it’s the whole family, the siblings and mum and dad, sometimes grannies. It’s the value of that family time together, you just can’t put a price on that.”
Everyone on the JMA Team loved all of the photos of our Scottish Team at the games. We hope all of the young people are proud of themselves and their brilliant achievements! Thankyou to Kidney Kids Scotland for all of your work, and for making such a difference to the lives of these children and their families.