Patient Lead and Patient Communications Workstream Representative
Andy spent less than 1 year as a pre-dialysis patient, 4 years as a HD patient and is in his 6th year as a transplanted patient. Andy has been a patient representative for about 7 years, including a Programme Board member for the previous Yorkshire & Humberside Shared Haemodialysis Care Programme.
Sarah Louise Harwood
Deputy Patient Lead
Sarah Harwood crash landed into kidney failure in 2006 and was started immediately on haemodialysis and plasma exchange treatment. Diagnosed with goodpastures syndrome (a rare form of glomerulonephritis) Sarah remained on haemodialysis three times a week for the next few months. Luckily in February 2007 she was received the call that changed her life and her kidney transplant has been going well ever since.
Despite some complications with catching infections and a small incident of rejection in 2012, Sarah has been able to get back a normal life. As a result of the transplant she was able to go on and study History at the University of St Andrews and took on a job at her favourite football team AFC Wimbledon. She is now working as the patient involvement coordinator at Kidney Research UK, raising awareness of the importance of research and patient involvement in research, and supporting patients who want to get involved in research.
Working for the charity has enabled Sarah to do things that she would never have tried before such as representing Kidney Research UK at the British Transplant Games 2016 and winning two bronze medals. “I love going out and talking to patients, being able to share my experiences but also learn from others about what they have been through.”
Patient Advisory Group Member
Geoff first started on dialysis in 1986 and has been on and off ever since, having had two kidney Transplants in the past “enabling me to do of the things in life that I wanted to do including travelling to a lot of places around the world I wanted to go”.
As a Transplanted patient, Geoff was a member of the Nottingham Transplant Team and competed on numerous occasions at the British Transplant Games in Badminton and Volleyball leading to Geoff being selected for the British Transplant Team to compete at the World Transplant Games in Manchester, Budapest and Sydney.
Geoff went back onto Haemodialysis in 2010 and was determined “to still live life to the full” and got involved on a the Sharing Your Dialysis (SYD) programme on a voluntary basis in Nottingham, talking to patients and nurses.
Geoff now works part time as the Patient Liaison Worker at the Nottingham Dialysis Unit. “The role involves putting a team of Volunteer Buddies together to talk to new patients and help them though process starting on dialysis. This is still in its infancy but is going very well and I am confident will be very successful”.
Patient Advisory Group Member
Asif is a 24 year old Haemodialysis patient from Leicestershire and who also works full time as a pathway coordinator in the endoscopy department at the Leicester General Hospital. Asif has been on dialysis since the age of 3 and unfortunately due to progressive chronic heart failure is unable to have a multi-organ transplant for a heart and kidney.
Asif dialyses 6 nights a week and says that "dialysis is my life and those around me are like family". Asif got involved in Shared Care 3 years ago and with his vast HD experience is trying to get more people involved in SHC including young people by organising a Shared Care residential weekend.
Asif's motto is "Never look down, always look up."
Asif has also been involved in a documentary which can be seen here.