These were the members of the Patient Advisory Group for the SHAREHD Programme from Aug 2016 - Jan 2019
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.
Andy has over 25 years' experience within the British Army and a further 15 years Higher Education and Social Exclusion, gaining experience and qualifications through training and operations and increasing executive management functions. Recent project management experience includes elements of workplace and people development including the management and delivery of staff development (including e-learning), as well as achieving various National Standards for Institutions and Organisations.
As a patient, Andy was diagnosed with Kidney failure in 2006 and from 2007 spent over 4 years on Haemodialysis (HD); with the last three years of HD very much self-caring i.e. completing as much of his own treatment himself as he could, including inserting and extracting needles (all of the tasks in the Sharing Haemodialysis Care (SHC) patient handbook). Andy has been fortunate to have had a Kidney transplant in 2012. Since starting on HD Andy has represented Renal patients at York Teaching Hospital (and Satellites) in a variety of aspects and more recently was a project board member for the Yorkshire and Humberside's development of the award winning Health Foundation 'Closing the Gap' 'Sharing Haemodialysis Care' programme, with particular work conducted on the 'staff course development programme' and 'patient SHC handbook' workstreams.
Having completed Shared Haemodialysis Care himself, Andy believes he has a good grasp of what patients are experiencing and considers he was able to provide invaluable information, advice and guidance to the Health Care Professionals within the SHC programme and now for the 2016 Health Foundation 'SHC Scaling Up' programme (SHAREHD); looking to interact on a regular basis with patients, for their feedback.
As the Patient Advisory Group (PAG) Lead, Andy see's the SHAREHD 'Scaling Up' National programme as an essential development from the work conducted by the previous Yorkshire and Humberside SHC programme group, which will assist in developing patient and nurse self-confidence (patients empowered to do more for themselves and nurses having the confidence to let them), moving patients and carers from passive to active individuals in their own care leading to improved 'well-being' and 'positive attitudes' on the dialysis wards. Finally, this project has the potential to further develop interest by patients and carers to conduct 'self-care', either through independence at home or in-centre treatment, creating a further 'guidance and training tool'.
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.