Haemodialysis patients at Great Ormond Street Hospital are benefitting from a new portable dialysis machine that allows them to undergo life-saving haemodialysis treatment whether they are at home or abroad.
Patients with renal failure are dependent on dialysis to provide essential life-saving treatment, replacing the work that is normally done by the kidneys. They are required to be in hospital three times a week for four hour sessions.
Patients on haemodialysis have strict fluid and dietary restrictions, and are dependent on a number of medications to maintain good health.
Dr Jane Collins, chief executive at Great Ormond Street Hospital said: “I congratulate the team for whom it has taken four years of work to bring this innovation to the hospital. We need to constantly look at services and where they can be delivered more conveniently for our families. We hope many renal patients will be able to take advantage of this service in the future."
Dr Dal Hothi, consultant paediatric nephrologist at Great Ormond Street Hospital said: “This is a potentially life changing service for renal patients and we are delighted to be able to offer it to our families.
“Dialysis treatment impacts on many aspects of a child’s life, including their health, education and social development. By offering this home based service we are giving control back to families by giving them a choice and for the first time the option to travel abroad.
“Any patient weighing over 20 kilograms and meeting the relevant criteria will be eligible, and we hope those who do take up the option will see immediate benefits from an improved quality of life.”
Patients benefitting from the home haemodialysis programme will undergo more frequent and gentler therapy, and as a result are subject to less strict dietary and fluid restrictions. Their need for medication is reduced, and they should feel better with increased energy levels and appetite.
Families will be trained by a senior renal nurse and will have around the clock support from Great Ormond Street Hospital medical staff. They will also have continuous consumables support from the UK suppliers of the portable dialysis machine, Kimal plc.
Carers will be re-trained in using the equipment every six months, and where possible young adults will have the chance to train themselves in using the machines.
Great Ormond Street Hospital recently benefitted from a £2 million donation from the British Kidney Patient Association. The hospital is undergoing a major redevelopment project and the generous donation will fund a new kidney centre in the Morgan Stanley Clinical Building, comprising both inpatient beds and a dialysis ward.
Adam’s story
Adam Phillips, 16, was born with kidney failure and within two weeks was transferred to Great Ormond Street Hospital (GOSH) from his local hospital in Oxford. For the next two years he waited for a transplant.
Adam’s dad was found to be a suitable match and he had a kidney transplant at GOSH just after his second birthday.
For the next 13 years Adam lived a full and active life, coming to the hospital for a check up every three months and doing all of the same things as his friends, including playing Cricket at county level.
Every year, Adam was also a keen participant in the UK Transplant Games, his success at which earned him an invite to the World Transplant Games in Thailand in 2007.
Around May 2009 Adam noticed he was feeling more lethargic than normal. Doctors had noticed a steady decline in the function of his kidneys and he spent a week in hospital while he took IV anti rejection drugs. Adam returned to GOSH as an inpatient in June 2009 when tests showed he would need a second transplant as his kidneys were failing again.
On 4 July 2009 Adam had his first course of haemodialysis in hospital. For the next year he would come in three times a week for four hour sessions. He missed school twice a week and on Saturdays was unable to meet up with friends as he was undergoing treatment.
Through competing at the Transplant Games Adam had made many friends who had undergone all different types of transplant, including those who were now in need of a second procedure. Friends from America had mentioned that they were receiving haemodialysis at home on a portable machine.
Knowing the hospital was keen on introducing a home haemodialysis service, Adam was vocal about wanting to try it out. He felt it would improve his quality of life and allow him to spend more time at home with his family and friends. In June, Adam was selected as the first patient to use the service while he waits for a suitable organ donor.
He said: “I was so happy to be given the option of home haemodialysis. I knew from talking to my friends that my quality of life would improve, and I’d be able to spend more time at home doing the things I want to do. It’s also really great to have the option to travel abroad, especially as I missed out on the World Transplant Games in 2009 because I was too sick to travel.
“I also knew it would mean an end to the very long days I spent travelling into hospital, receiving treatment, travelling home and then recovering. Even though home haemodialysis is more frequent than in hospital treatment, it is less intensive which means less after effects and recovery time.
“I can’t thank the staff at GOSH enough for everything they have done for me. My friends have also been brilliant and have never treated me any differently. I’m not downbeat about things because I really believe in thinking positively, there’s no point otherwise.”
Contact information:
For further information please contact Hayley Dodman, Great Ormond Street Hospital press office, on 0207 239 3126 or email
dodmah@gosh.nhs.uk
For genuine and urgent out of hours call speak to switchboard on 020 7405 9200
