Leeds Teaching Hospitals NHS Trust is one of 13 centres currently offering haemodialysis, this a life-sustaining process where the dialysis machine does the work of the kidneys to remove water and wate products. For children and young patients, haemodialysis is routinely delivered in the hospital setting and they had to come to hospital 3 times a week for 4 hours. The nephrology team in Leeds Children’s Hospital look after children and young people from Yorkshire (East, West and North) and Lincolnshire and Goole. This means they can travel distance for each session, that can take the whole day meaning they miss out on school and normal activities.

In the last decade home haemodialysis was only being offered to adults and wasn’t available for children. Gradually the picture changed with Great Ormand Street Hospital beginning to offer haemodialysis to children at home, with other centres across the country gradually developing the service too. This meant it became a postcode lottery for patients as to whether their nearest centre offered the choice or not.

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Richard Carless, Clinical Nurse Specialist Team Leader, works at the Leeds Children’s Hospital caring for or children and young people with kidney disease.

"The large area we cover as a department means attending appointments often comes with a huge travel commitment and can be incredibly time consuming for patients and their families.

School aged children needing treatment are losing out on three days of education a week, and often parents struggle to maintain work commitments.

We try our best to be flexible with appointments, but Children require a rigid regime of treatment meaning they can’t go on holidays they have fixed days of attending hospital appointments at least 3 days a week combining this with a very strict fluid and diet restrictions, families have the feeling that dialysis consumes their lives."

Leeds Hospitals Charity awarded £145,000 for a Home Haemodialysis Machine and funding for a specialist nurse to train families to be able to dialyse their children safely and effectively in the comfort of their own home.

"The option of offering home haemodialysis gives the families and children back some control. It gives them more flexibility as to when they can dialyse and no travelling to appointments. Children can go to school and patients’ families regain a bit of normality.

Another benefit of using a home haemodialysis treatment is that patients have better control of their kidney failure, with less dietary and fluid restrictions and they report they feel better. We know that the long term health benefits of home haemodialysis are closer to that of a kidney transplant."

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Matthew, aged 16, lives over an hour away from the hospital and requires dialysis for the treatment of chronic kidney disease, he is the first patient to be using the new equipment. Matthew’s Mum Jane describes how using the machine at home has given their family back control and given them a bit more certainty.

"He’s had no side effects from using the machine and now we’re saving at least 3 hours every session in travel time. With traffic or train cancellations they journey can be really long, and if Matthew isn’t feeling great it’s not ideal. We’re now able to make plans, it sounds strange, but we could never make arrangements to do things on a Friday, but now we can! He’s missing less lessons too which is important as he’s doing his GCSE’s this year."

Another benefit of not needing to visit the hospital means Matthews not mixing with too many other people. His resistance is lower and even a cold can put him in hospital, so being at home reduces his risk of exposure to any infections.

"We feel very supported whilst at home, the team call just to check we’re ok and have even dropped things round to us to save us having to travel the long distance back to the Hospital.

CKD is a lifelong condition, hopefully he will have a kidney transplant soon – but we know that a transplanted kidney may only last for around 15-20 years before he needs treatment again. Being able to dialyse at home is teaching Matthew to take control of his own health as he goes into adulthood."

Richard and the rest of the nephrology team are incredibly grateful to Leeds Hospital Charity, "I want to say thank you to the charity and their donors for providing this opportunity for our patients. They have such a restricted lifestyle and you’ve provided an opportunity for them to get some of their life back. It’s not suitable for everyone, but it’s about giving people the choice which is amazing."