Kidney Kids Scotland are delighted to announce the launch of the Home Haemodialysis service at The Royal Hospital for Children Glasgow. The charity having supplied the first machines in Scotland (costing £14,000 each) to this centre of excellence and are funding a specialist nurse to get the service up and running - we are proud to say that the pilot is now underway and the first family in Scotland to benefit from this treatment are currently undergoing the training needed to carry out treatment at home.
WHY HOME HEOMODIALYSIS
At the moment any child in Scotland who requires haemodialysis must travel to The Royal Hospital for Children in Glasgow, irrespective of where they live. This treatment, though life saving is extremely disruptive for many families. Children have to miss school and many activities with their friends, families have to endure long and often expensive journeys and in some cases have to relocate entirely to be nearer to the dialysis centre.
Home Heomodialysis is as it would suggest - haemodialyis carried out in the home environment. This method of dialysing has multiple benfits. Due to the flexibility of where and when to dialyse there is a much improved quality of life with children and young adults being able to participate fully in school, work, family and social activities. Due to less restrictions on diet and fluid intake patients on home haemodialysis have a much more varied and enjoyable diet. Apart from the substantial psychological benefits, it is proven that recipients of this method of dialysis have better clinical outcomes such as reduced medication and improved blood pressure.
Milo Carter is the first child in Scotland who will benefit from the home haemodialysis. His dad Kevin is has been undergoing rigerous training on the machine and by the end of November Kevin and his wife Sarah will be going it alone and their families lives will be changed for the better. We asked them to tell us about their journey so far and what home haemodialysis means to them.
"Over the last four years since Milo was first diagnosed with Wilms Tumour (a childhood kidney cancer), we’ve always known that dialysis was a likely option. But I guess unlike a lot of the renal patients Milo had fully functioning perfect kidney with no signs of function reduction. But we took the really difficult decision to remove his remaining kidney earlier this year at the recommendation of Oncology team to reduce the risk of the cancer returning for a third time. So Milo went from being perfectly healthy one day to being on full dialysis the next. Milo has coped really well from the start, he’s been really positive about the changes to his diet and lifestyle. But he’s really struggled with the amount of time he’s missed with his friends, school and his hobbies. He never moans but we know he gets really bored at dialysis and feels like he really misses out on what’s happening with his friends. He’s also lost his appetite and now get’s fed almost entirely through a nasal tube which he can sometimes be a little embarrassed about. So for us home dialysis offers lots of benefits. The studies suggest that home dialysis will be much better for Milo’s overall health, he’ll have a lot less restriction on his diet and fluid intake and hopefully we’ll be able to remove his nasal tube within a few weeks as his appetite picks up again. Milo is really excited about being able to go to school every day and spend time with his friends in the evenings. And Mum and Dad won’t miss the three hour round trip three or four times per week to hospital! We feel really lucky that Milo has been selected as the first child in Scotland to trial home dialysis. We know this life changing opportunity wouldn’t be possible with the funding and support from Kidney Kids Scotland and all the renal team at the Glasgow Hospital For Sick Children. We’re dedicated to making the pilot a success so many more people can benefit." Kevin Carter (Milo's Dad)
Kidney Kids Scotland are dedicated to extend this service to as many Scottish children as possible. The charity have agreed to fund the specialist nurse for three years costing £45,950 per annum.
This post will not be ward based but will focus on where the dialysis need exists at the time, for example a new patient eligible for Home Haemodialysis within the Highland area. The post will compliment and support our existing home nurse specialists and work very closely with the specialist haemodialysis team within the unit in Glasgow. This nurse will offer the families comprehensive training on one of the Home Haemodialysis machines already purchased by Kidney Kids Scotland in order for them to become confident and self-reliant with the equipment and procedure. The length of training varies, depending on the individual - it could be from 6 to 16 weeks or longer. When the nurse is confident with the family and patient’s ability to carry out this treatment, arrangements by the NHS will then be made for the hire of a home haemodialysis machine for each individual family for as long as is needed. There will be a support team available to the family once home 24hrs per day.
One of the charity’s main goals since its inception in 2000 is to ensure that Scottish children with renal illness receive treatment as close to home as possible. This project is by far the largest commitment the charity has ever taken on, but we feel the difference that it could make to the most chronically ill children that we help would be life changing, not only for the child facing a kidney transplant but for the whole family.