AN INITIATIVE FOR IMPROVING PRE-DIALYSIS SUPPORT FOR YOUNGER PATIENTS
INTRODUCTION: The CKD CNS role is to provide education and support for renal patients in CKD Stage 4-5 to help them make treatment choices and ensure smooth transition onto dialysis (preferably a home therapy) or renal transplantation. Current support includes an initial home visit (holistic assessment) and revisits, a monthly patient information morning and a thrice yearly support group. Audit identified these programmes were poorly attended by patients under 50 years of age. Specific needs identified by the CNS team in this younger cohort included concerns over work, childcare, fertility/sexual issues, opportunity for renal transplant, and feeling isolated in Nephrology clinicspredominantly attended by elderly patients.
The aim was to facilitate anultimately self-running Young Patients Group (YPG) for pre-dialysis renal patients aged 20-50years and to promote the options of pre-emptive transplantation and home therapy options. Weekly 2 hour evening meetings were arranged outside the hospital environment over a 5 week period. Speakers were invitedaccording to the agenda set by the attendees. These included relevant MDT members, such as the renal social worker, transplant nurse specialists, transplant surgeon, home therapies Nephrologist, and dieticians. Expert patients of a similar age to offer peer support were also invited. Open and informal discussion amongst participants was encouraged.
METHODS: A pilot group was set up in 2014, evaluation emphasised the importance of appropriate selection of patients and highlighted apposite topics for subsequent groups. A second YPG was held in April 2015. Patients and their significant others who attended were encouraged to set their own agenda for the sessions with advice from the facilitating CNS team. Evaluation was by means of questionnaires sent to patients after the 5th session.
RESULTS: Following issues identified in the pilot group the renal clinical psychology department subsequently set up a specific support group for patients with additional psychological needs. Evaluation forms and verbal feedback from patients attending both groups were overwhelmingly positive, with particular value placed on meeting the expert patients invited. Encouragingly the second group have independently continued to meet monthly since formal meetings were completed, offering each other peer support throughout their patient journey. All members are on road to pre-emptive renal transplant or considering home therapy options. Patient enrolment onto Renal Patient View was offered to maximise self management and empowerment,and has been enthusiastically taken up.
CONCLUSIONS: The CNS team are planning for a third group in the spring of 2016 and then to run groups biannually/annually depending on numbers of appropriate patients. As the attendees evaluated the programme positively the CNS team are considering expanding group to include dialysis/transplant patients within same age bracket, and to extend groups to outreach areas. The directorate has recently appointed a youth worker who the team will link in with for future sessions, and who can advise on the safe use of social media within these groups. It is hoped these future YPGs will link together with previous attendees and the larger group will be predominantly patient led and facilitated with minimal input from the CKD CNS team.