At Guy’s & St Thomas’ Kidney Patients Association we have had a number of requests for patients to get involved in either research or other activities, these are, in not particular order:
1. Kidney Care UK African and Caribbean recipe book
Kidney Care UK are creating a recipe book for people of African and Caribbean heritage and would like patients’ input on which recipes to include.
The book will be free for all renal patients to order online once completed and will also help dieticians understand African and Caribbean cultural diets better.
Any interested patients should use the link below to fill in a short survey https://www.smartsurvey.co.uk/s/36VPZG/
2. Have you had a kidney transplant in the last two years?
Would you like to help us better understand how patients feel about their transplant health care?
Rebeka Jenkins, researcher at NHS Blood and Transplant, is currently running an interview study exploring patient experiences of kidney transplant healthcare and she is looking particularly for more people who might be able to add a different perspective.
We want to design a survey to measure the patient experience of kidney transplant care. We are asking kidney transplant patients to be involved to help us write and test the survey. We want to be sure the survey works for patients and is about what really matters to them.
If you think you might be interested, you can find out more by clicking HERE for the patient information leaflet.
3. National Home Dialysis Peer Support Service
The National Kidney Federation (NKF) provides a National Home Dialysis Peer Support Service. This is a free service designed to assist individuals affected by kidney disease through the invaluable insight and guidance of experienced peers.
The service supports people on home dialysis, who are considering home dialysis and is also there for family and carers of people on or considering home dialysis.
The service is provided by a team of twenty-three professionally trained peer supporters. These dedicated peers are volunteers, who range in age from 25 to 80 years, the peers bring a wealth of personal experience in managing kidney disease, engaging in shared care, and navigating the challenges of home dialysis or supporting a loved one through such treatments. The peer supporters’ backgrounds encompass a broad spectrum of knowledge, including shared care, home haemodialysis (HHD), peritoneal dialysis (PD), managing treatment while travelling, and balancing treatment with lifestyle and work commitments.
The concept of shared care is a particularly empowering aspect of this service. It allows patients undergoing regular dialysis treatment the opportunity to take a more active role in their care by learning about and performing certain treatment tasks themselves. The NKF Peer Support Service is a great first step to home dialysis.
4. Survey: Kidney transplant patient prescription costs
As part of the National Kidney Federation’s ongoing commitment to campaign for the needs of the kidney community, we are reaching out to gather experiences from individuals who have undergone a kidney transplant. We are particularly interested in learning about your experiences with immunosuppressant medication as a kidney transplant patient.
Currently people who live in Wales, Scotland, or Northern Ireland do not pay for prescriptions. In England, those who are not exempt pay £9.90 per item.
Everyone should be able to access the lifesaving medication they need without worrying about affordability, therefore your feedback will help us campaign for better support and resources.
We would appreciate it if you could take a few moments to enter our survey here: https://forms.office.com/e/EXqk3d2CMv