What's it like starting out on home haemodialysis (HHD)? A team in London have been visiting HHD patients and their families to better understand their experiences of HHD. Their focus has been on how the design of the haemodialysis machine helps or hinders patients and carers, and how people stay safe at home. Although every individual and family is different, and may have received different training and be using any one of several different machines, there were many common themes that emerged across all 19 participating families.
Currently the quality of dialysis treatment is based on measures that doctors think are important, including the results of blood tests, blood pressure results and how long patients live on dialysis.
Jonkoping Ryhov Hospital caters for a population of approximately 140,000 and the hospital provide an acute and chronic service to its inhabitants. The Renal unit is set within the grounds of the hospital that appears to provide acute and chronic services. The renal unit cost £500,000 to build and comprises of a 12 station haemodialysis unit, a PD unit that currently has approximately 21 patients at home and a self care unit.
Arrival at the new renal unit in Jonkoping Ryhov Hospital is a warm, friendly and relaxing experience. The Scandinavian timber building is modern, light and bright and set beautifully amongst old established trees and parklandesque areas of well-manicured grassland. Plenty of parking and easy access for specialized vehicles carrying wheel chairs with simple and direct access into this single story, purpose built unit through 3 access points. A feeling of quality and well thought out design is present everywhere and the automatic entry doors equipped with electronic safety systems give a secure feeling for safety and well being.
During our time at the Trust we have both been committed to developing renal services for our local communities and have taken a personal interest in making sure these services continue to grow. This began with the opening of the renal dialysis unit at York Hospital in 1999, and under ambitious clinical leadership has grown to include several satellite units, home haemodialysis, and the first self care unit in Selby.
There is a lot of evidence demonstrating that the more people are involved in their care the better the experience, the safer the care and that the outcomes improve. The NHS somehow forgot this important fact over the last few decades but thankfully the kidney care team in York have rediscovered this principal and have been working hard to develop the skills, competences and confidence to support individual patients getting involved in their care.
I began dialysis when I was nineteen – twelve years ago. I had PD dialysis at home for three years, but I was fortunate to then have a transplant from 2005 to 2010. It was November 2010 when I needed to transfer back to dialysis, which I started in York. This was three days a week, with four hour slots. However, the process was always far longer than four hours – a session scheduled to begin at 4pm, could result in my return home at a time as late as 00.45; four hours easily became six, seven or eight hours spent not just at the hospital, but travelling, waiting for other patients to finish and preparing for dialysis.
My name is Marianne Hawes and I have been a haemodialysis patient for eighteen and a half years. I have experienced three renal units, as a resident patient, in that time, in different parts of the country.
"Are you able to accommodate a change in your lifestyle" was the question asked of me, by my consultant, 8 years ago as my kidney's failed and dialysis loomed. I'd read about dialysis even visited the ward a couple of times as I had a close friend who dialysed there. I was prepared for the treatment, I knew about that but what caught me out was the change in lifestyle, I wasn't prepared for that and who can prepare you for that when everybody's lives are different.
Approximately 20,000 patients have haemodialysis (HD) treatment in the UK. They spend 4 hours three times a week 'being taken care of' by our dialysis nurses. They are passive recipients of care, with patients describing dialysis as a 'thief of time' and as a process in which they have no control in their own care.
This is the story of how patients with kidney failure requiring dialysis three times a week, have had their independence and confidence restored. The shared care programme aims to reverse a trend of declining patients' independence in dialysis and improve patients access to shared haemodialysis care.
Shared Haemodialysis Care is radically improving health outcomes for kidney patients in Yorkshire and the Humber. Thanks to an innovative project developed in conjunction with patients from across our region and sponsored by The Health Foundation and NHS Kidney Care, 90% of 1800 patients are now actively participating in their own haemodialysis treatment.
Haemodialysis treatment, initially only for patients with reversible acute kidney injury, was pioneered in three sites in the United Kingdom in the 1950s, one of which was in Yorkshire at the Leeds General Infirmary. The treatment then became available for people with kidney failure which was not going to recover, initially cited at the big hospitals in Leeds, Sheffield and Hull. Subsequently kidney units were established in the hospitals in Bradford and York and more recently Doncaster. As well as the six main unit renal dialysis centres in these cities, there are 20 satellite dialysis units which were opened to serve local communities and reduce the need for patients to travel long distances for treatment. These units serve from Skipton in the West to Scarborough in the North East, Grimsby in the East and Chesterfield the most southerly. The geographical area covered is West Yorkshire, North Yorkshire, the East Riding of Yorkshire, South Yorkshire, along with North Lincolnshire, and patients travel from the adjoining regions particularly Darbyshire and Bassetlaw.
The Shared Haemodialysis Care programme in Yorkshire and the Humber was funded in 2010 by the Health Foundation as part of its "Closing the Gap through Changing Relationships Programme" and led by a multidisciplinary team of professionals and patient partners. We also received financial support from NHS Kidney Care. Our influences included work that had been done one patient engagement in dialysis at Guys and St Thomas's, and also the experience in Jonkoping Sweden.