1. KIMBERLEY RENAL SUPPORT SERVICE (KRSS) The Role of Predialysis Coordinator

2.  KRSS positions-where pre dialysis fits in  Referral to the pre dialysis coordinator  Specific tasks of the pre dialysis coordinator  Palliative approach model of care  Close monitoring  Reporting and documentation  Education – Health providers & patients/families  Resources available  Pre dialysis patient assessment  Treatment options available  Vascular access  Communication OVERVIEW

3. TWO PRE DIALYSIS COORDINATORS EAST KIMBERLEY – based in Kununurra WEST KIMBERLEY – based in Broome

4. TRANSPLANTATION DIALYSIS HAEMODIALYSIS PERITONEAL DIALYSIS PALLIATIVE CARESTAGE 1 & 2 Proteinuria plus eGFR 60+ (to determine eGFR over 60, hand calculate GFR using Cockcroft-Gault formula) STAGE 3 eGFR 30-59 ml/min MODERATE KIDNEY DAMAGE STAGE 5 eGFR <15 ml/min FAILURE STAGE 4 eGFR 15-29 ml/min SEVERE KIDNEY DAMAGE AMS Chronic Kidney Disease AHW KRSS CKD Educator KRSS Pre Dialysis Coordinator KRSS PD Educator KRSS HD Educator KIDNEY DISEASE PATHWAY & KIMBERLEY RENAL SUPPORT SERVICE POSITIONS All clinic staff Kimberley Renal Support Service, KAMSC Developed by: Maree Wearne and Chrissy Fiegert Date: 18th December 2008

5. REFERRAL TO PRE DIALYSIS COORDINATOR When eGFR <30ml/min Per CKD protocol Contact Pre dialysis coordinator: Phone 0400336069 or email predialysis@kamsc.org.au predialysis@kamsc.org.au

6. SPECIFIC TASKS OF THE PRE DIALYSIS COORDINATOR Manage Referrals for pre dialysis Coordination and communication of patient care with health services Monitor patients on MMEX data base in stage 4 & 5 in conjunction with health services Education to health providers Education and planning for patients and families Attend renal clinics Organise and coordinate vascular access surgery Arrange case conferences & multidisciplinary team meetings where required

7. PALLIATIVE APPROACH MODEL OF CARE People with chronic kidney disease have a life limiting illness. The palliative approach is a holistic model of care that supports the patient’s physical, psychological, social & spiritual wellbeing. A multidisciplinary team is utilised to provide holistic patient care.

8. CLOSE MONITORING Local health providers should review patient monthly- clinical review, BP, weight, UEC, eGFR, FBE, Fe studies, Ca, PO4, Albumin, PTH (All bloods cc KRSS) Pre dialysis coordinator Provides support for local health providers Monitors monthly bloods- MMEX DB -stage 4 &5, plus buried PD tube patients Reviews patient 6/12 – provides education

9. REPORTING AND DOCUMENTATION MMEX data base CKD summary sheet Family meeting form & Genogram Pre dialysis assessment form End of life wishes form RPH Transfer form

10. MMEX DATA BASE Data base used to monitor patients pathology results Cc pathology to KRSS All renal patients (KRSS) will have shared files with the patient’s primary health provider on MMEX in the future KRSS does not take the place of local health providers but works together to monitor and provide appropriate patient care

11. CKD SUMMARY SHEET The CKD Summary Sheet is being trialled The CKD summary sheet is used by health providers for patients with Stage 3 CKD and onwards, to summarise the patients current management. This sheet is kept in the front of the patients medical record once CKD is diagnosed. (It will eventually be superseded by MMEX).

12. FAMILY MEETING FORM & GENOGRAM The Family Meeting Form is used as a communication tool to track discussions on education, care planning and wishes between patient family and health providers. A copy of this form is kept in the patient medical record and uploaded onto MMEX. The Genogram documents the patients support network, it is completed by the patient with assistance from family and / or health providers. A copy of the genogram is kept in the patient medical record and uploaded onto MMEX.

13. PRE DIALYSIS ASSESSMENT FORM The Pre Dialysis Assessment Form is used as a tool to assess the patient living environment, social situation and general health It is used to identify potential problems, or risks for commencing therapy A copy of this form is kept in the patient medical record and uploaded onto MMEX

14. END OF LIFE WISHES FORM The End Of Life Wishes Form is a tool used to document the ongoing discussions that occur regarding end of life care. A copy of this form is kept in the patient medical record and uploaded onto MMEX. In the future we hope there will be an alert on MMEX when opening a patient file who has a completed form.

15. RPH TRANSFER FORM Royal Perth Hospital Transfer Form is a communication tool between services for smooth transition of patient transfer. This form can be filled in by local health providers in conjunction with KRSS team.

16. EDUCATION TO HEALTH PROVIDERS Education on structure and support of pre dialysis position Education on reporting and documentation Explain what education is provided to patients on the kidney care pathway and the treatment options Educating on the resources available- KAMSC website Protocols- vascular access

17. EDUCATION TO PATIENTS AND FAMILIES Education and information for patient and family about the kidney disease pathway care plan Education on the treatment options Home visits & family meetings Nephrology clinics Vascular access surgery Information on conservative care / palliative care

18. PATIENT RESOURCES Patient kidney education book Patient handout ‘kidney care booklet’ Patient handout ‘medication booklet’ Patient handout ‘KRSS brochure’ Patient ‘dialysis options booklet’ Show patients & family ‘family support DVD’ NT treatment options Bessie’s story (Palliative care book)

19. PATIENT RESOURCES AVAILABLE

20. PRE DIALYSIS PATIENT ASSESSMENT Nephrologist review 3-6/12 Pre dialysis assessment -Assess living environment, family & social situation & suitability for treatment options. Transplantation suitability discussed & workup is coordinated by RPH Palliative Care Team prn, support the use of end of life wishes form Social worker – Broome / Perth (white goods, bed, electricity and telephone) Ensure HepB schedule has commenced and follow up with local health care providers

21. TREATMENT OPTIONS AVAILABLE Haemodialysis – satellite, community or home TransplantationConservative management / Palliative care Peritoneal dialysis- CAPD or APD Is the patient suitable for the treatment options? 1.Is the patient compliant, do they have co morbidities, what is their age? 2.Do they have a suitable abdomen, past abdominal surgery? 3. Do they have a house, a suitable environment, a carer, are they literate, are they clinically stable? Ect

22. REFERRAL FOR VASCULAR ACCESS Pre dialysis coordinator will Monitor patients eGFR & creatinine closely-Communicate with health providers those patients with eGFR <20 (preparation for vascular access) Inform the health service of vascular access surgery (ie withhold clopidogrel, where, when, PATS) Coordinate planned access surgery in Broome/ Derby Explain access protocols to health providers Vascular access Depending on pathology & symptoms - buried PD tube or externalised PD tube and fistula Fistula only if patient chooses & suitable for haemodialysis

23. PREPARING FOR VASCULAR ACCESS OR DIALYSIS Coordinate vascular access clinic list in Broome / Derby / Perth Communication with ACCHS, health providers, patient and family Ensure money, health cards, appointments, bloods, PATS, accommodation,meet and greet, support person Patient introduction to the PD training nurse Coordinate Transfer to Perth / Broome for dialysis As above Transfer form completed and faxed (Address, end of life wishes & genogram form) Communication with family and KRSS team whilst patient in Perth

24. eGFR

25. POST ACCESS Hospital, ACCHS, health care services and family members informed post surgery on return to community Discharge summary from hospital onto MMEX Management of patients with an externalized PD tube are transferred to the PD educator / trainer (to commence training & ongoing management) However all patients are monitored and managed by the local health providers in conjunction with the KRSS team

26. TRANSFER TO EDUCATOR /TRAINER WHEN TREATMENT BEGINS Trainer

27. COMMUNICATION WITH HEALTH PROFESSIONALS Local health providers GPs (medical staff) Renal GP KRSS team Nephrologist CKD coordinator Palliative Care Team Social worker Dietitian Podiatrist Pharmacist Perth Fresenius nurses PD and HHD RPH Anaemia coordinator RPH Pre dialysis coordinator RPH Transplant coordinator

28. KIMBERLEY RENAL SUPPORT SERVICE (KRSS) Vision statement: A model of care in renal services, working by and for the people of the Kimberley, to achieve equity, dignity and quality of life, respecting rights of individuals and communities to health and wellbeing of a level which is second to none.

29. Thank you