2. Widening the Circles of Inclusion The National Renal Service Dr Donal O’Donoghue Co-Chair Renal Advisory Group 4 July 2006

3. Standard one: A patient-centred service Aim: To optimise the role that people with chronic kidney disease can take in the management of their care. Standard: All people with chronic kidney disease are to have access to information to make informed decisions and encourage partnership with an agreed care plan. The National Service Framework for Renal Service

5. Standard one: A patient-centred service The National Service Framework for Renal Services Markers of good practice Provision of high quality, culturally appropriate and comprehensive information and education programmes Education programmes tailored to the needs of the individual Individual care plans, regularly audited, evaluated and reviewed Access to a multi-skilled renal team whose members have the appropriate training, experience and skills

6. Key Facts CKD   > 5% of population   Co-morbidity : 90% HT, 40% CVD, 20% DM   SMR 36 in unreferred < 60 years   Optimal therapy 30%   Potential savings US $18-60B / 10 years ESRD   Increasing at 6-8% pa   Acute Uraemic Emergencies 22-57%   Pre-emptive transplant listing 3-54%   Dialysis survival 1 st year 75- 93%   Cost £0.4B / year > £0.8B / year (2002/03) (2010/11) (Wanless)

7. The Epidemic of ESRF

8. StageDescriptionGFR (ml/min/1.73 m 2 ) Prevalence (000s) Prevalence (%) 1 Kidney Damage with Normal or ↑ GFR>905,9003.3 2 Kidney Damage with Mild ↓ GFR60-895,3003.0 3Moderate ↓ GFR30-597,6004.3 4Severe ↓ GFR15-294000.2 5Kidney Failure <15 (or dialysis)3000.1 Adapted from AM J Kidney Dis 2002; 39 (2,Suppl. 1): S17-S31 Staging and Prevalence of CKD

9. CKD: A Typical GP Practice of 10000 90 460 60 6 380 60 15 30 (GFR) Stage of Kidney Disease 1 2 3 4 5

10. Creating A National Kidney Care Service National Knowledge BaseNeLH National DatasetRenal Dataset National Clinical & Managerial Standards NSF, RA, BTS, RR, UKT National Specification for ITNSF IT Strategy National Community of Practicewww.kidney.nhs.uk National Template Care PathwayDo Once & Share MAP of Medicine

11. Modernisation projects in renal services Modernisation Agency Project : Birmingham, Exeter Patient View Project: Birmingham, Glasgow, Leeds Skills for Health Dialysis Project: Birmingham, Leicester, London, Stevenage Skills for Health Transplant Project: Aberdeen, Canterbury, Cardiff, Gloucester, Hull, London, Newcastle Learning Sets – Transport: Liverpool, Middlesbrough Learning Sets – Palliative Care: Birmingham, Manchester Learning Sets – CKD: Brighton, Leicester ABPILD Project Posts: Preston, Wolverhampton Do Once and Share - Leicester

12. NEOERICA: percentage recording of creatinine and prevalence of Stage 3–5 CKD by age 0 10 20 30 40 50 60 70 80 15–2425–3435–4445–5455–6465–7475–8485+ Age groups Patients (%) Recorded serum creatinineStage 3–5 CKD

13. % GFR  60 ml/min GFR <60 ml/min DMCHFStroke/ TIA PVDAny CVD IHD Prevalence of Co-morbidity and Level of GFR

14. Go et al 2004 CKD is a Major Health Burden

15. CKD Stage 1, 2, 3 Education Blood pressure Smoking cessation Lipid control Medicines Management Diet advice Exercise Psychosocial support CKD Stage 4 Anaemia Acidosis Bone disease Preparation/choice CKD Stage 5 HD Tp PD MCT Glycaemic control Complications eyes feet kidney Radiology Surgical interventions Anti coagulation Anti arrhythmics Medical treatment of CHF + DM+ CHD Cardiac Kidney Diabetes

16.   304 pts referred to four renal centres in Canada   Mean GFR 31 ml/min   CVD 39%, DM 38%, dyslipidaemia 43%, smokers 27%, hypertension 80% – –BP > 140/9035% – –ACEI/ARB65% – –Aspirin27% – –Statin18% Tonelli M, AJKD 2001;37:484-489 Modifiable Risk Factors - Reality

17. Relative risk Variable(95% CI)P value Nephropathy0.39 (0.17-0.87)0.003 Retinopathy0.42 (0.21-0.86)0.02 Autonomic0.37 (0.18-0.79)0.002 neuropathy Peripheral1.09 (0.54-2.22)0.66 neuropathy 00.51.01.52.02.5 Intensive therapy better Conventional therapy better Gaede et al, NEJM 2003;348:383-393 STENO-2 Study

18. PointsPayment Stages CKD 1 A register of patients aged 18 years and over with CKD (Stage 3-5 CKD) 6 CKD 2 Percentage of patients with a record of blood pressure in the previous 15 months 640-90% CKD 3 Percentage of patients with a BP of 140/85 or less 1140-70% CKD 4: Percentage of patients who are treated with an ACEi and ARB (unless a contraindication) 440-80% The CKD Domain of QOF

19. 0 10 20 30 40 50 60 Sheff Hope Bristl Extr Leic York Prstn Mdlsbr Bangr Ports Notts StJms Newc All % late referral Percentage late referrals (< 3 months) by centre 2002

20. Late Referral for RRT   > 30% UK patients referred within <4/12 of needing RRT   Higher mortality, morbidity, hospital stay, & cost (~£30k per case), due to poorer clinical state at presentation, lack of vascular access   No possibility of pre- emptive transplantation Propensity score matched comparison, n=2078 Winkelmayer WC. J Am Soc Nephrol 2003; 14: 486-492.

21. Pre-emptive & Live Donor Transplantation Living Donor Kidney Transplants 1995-2003 (UKT) Unadjusted graft survival in 56,587 recipients of cadaveric transplants by length of dialysis treatment before transplant 100 90 80 70 60 50 40 30 20 01224364860728496108120 Months post-transplant % event free survival Pre-emptive 0–6 months 6–12 months 12–24 months 24+ months

22. Education Empowerment Encouragement Registration Recall Review Knowledge Management CfH Integration Information Technology Information eGFR = % Kidney Function Demystifying and Managing Chronic Kidney Disease

23. The National Kidney Care Service 158 Local Health Communities 23 Renal Networks 6 Transplant Alliances Widening the Circles of Inclusion