The first year of the UKRR’s patient council

1. The first year of the UKRR’s patient council UK Renal Registry2015 Annual Audit Meeting Fiona LoudPolicy Director British Kidney Patients Association (BKPA)

2. Year 1 report • What we learned • What we plan • What we’d like to see

3. Purpose • To provide a voice for people with kidney disease • To advise the Registry on future work and what to audit

5. Open recruitment process - 2014 • Advertised through UKRR, patient charity sites and social media • Terms of reference and contract • Expenses and honoraria • Telephone interviews • 10 patient and 4 UKRR members, quarterly meetings since July 2014 • Range of modalities/people connected with other patients

6. Terms of reference • To attend Patient Council meetings • To contribute during Patient Council meetings • To take part in group communications via email and telephone • To deal with any paperwork or tasks within the time required • Maintain confidentiality • Treat everyone with courtesy, politeness and respect.

7. Act as representatives for kidney patients and their carers • To guide and influence methods of delivery of care. • Advice on opportunities for new work ideas and initiatives for the Renal Registry. • Contribute to the development of new audit, research and survey proposals. • Provide an arena that will encourage discussions between patients and clinical teams to promote patient involvement at renal centre, regional and national levels. • Monitor and review patient facing initiatives recommended by the Department of Health • Review applications and contribute towards the production of patient leaflets, posters, reports and other patient information products developed by the Renal Association. • Support the Renal Registry in issues relating to information governance and patient consent. • Use personal networks to spread awareness of the Renal Registry and its work with the council. • Occasionally represent the Patient Council at other external meetings

8. Purpose • To provide a voice for people with kidney disease • To advise the Registry on current and future work and what to audit

9. UK Renal Registry Patient Council • The Role of the Patient Council • Act as representatives for kidney patients and their carers • To guide and influence methods of delivery of care. • Advice on opportunities for new work ideas and initiatives for the Renal Registry. • Contribute to the development of new audit, research and survey proposals. • Provide an arena that will encourage discussions between patients and clinical teams to promote patient involvement at renal centre, regional and national levels. • Monitor and review patient facing initiatives recommended by the Department of Health • Review applications and contribute towards the production of patient leaflets, posters, reports and other patient information products developed by the Renal Association. • Support the Renal Registry in issues relating to information governance and patient consent. • Use personal networks to spread awareness of the Renal Registry and its work with the council. • Occasionally represent the Patient Council at other external meetings Introduction: The UK Renal Registry Patient Council was set up during 2014 to provide a voice for renal patients and their carers. Its purpose to help support and advise the Renal Registry on future work, especially around the collection and audit of information which is of interest to this group of people. People and families affected by kidney disease want to know about how well their care is being delivered, whether it is better or worse (for outcomes, or experience), in their hospital or the one up the road. The Council will be able to direct the Registry to use its data to research areas of interest, like equity in access to transplantation, or home dialysis therapies and in future on patient experience of how they were cared for. The Patient Council currently has 14 members and held its first meeting on July 4th 2014 in Birmingham. It meets quarterly and anyone with ideas for us to tackle with registry data should email patient.council@renalregistry.nhs.uk Patient Council Members: Fiona Loud: Chair and BKPA Representative George Brown: NKF Representative Ron Cullen: Director UK Renal Registry Fergus Caskey: Medical Director, UK Renal Registry Rishi Pruthi: Clinical Fellow, UK Renal Registry Patient Representatives: See map for locations For further information please contact: Patient.Council@renalregistry.nhs.uk

10. Working as a group • Learning curve • Range of work RR audits • Many other projects – takes time • Learning what the questions are to get to the answers we seek ?

12. Patient awareness of UKRR • Low! • Inaccessible language • Huge report • 1st brief patient summary in 2014

13. Percentage of patients on each modality on 21/12/2012 Pictures paint a thousand words, but need to be current and have good explanations

14. Using existing data • Lay summaries of key chapters • Treatment types and survival on dialysis - incidence • Treatment types and survival on dialysis - prevalence • Access to transplantation • Vascular access and infection • Paediatric population

15. Data governance • Use of data • Information at renal units as a poster • Important for people not to confuse with other use of their data

16. Patient–led focus area • Fistula longevity • Technique – buttonholing/laddering • Unit performance

17. Areas for potential audit • Transport • Patient experience e.g. how has transport been for you in the last 6 months? • Driver feedback/training • Transplantation • Equity of access between units • Equity of guidelines between units • ATTOM

18. Further areas to explore • ‘Patient experience’ by unit • Access to Dialysis away from base by unit • Specific areas in dialysis specifications which constitute provider contracts….. Thinking smart for the future of commissioning…

19. Supporting research • Commentary on bids • Participation in selected studies • All work proposals to include explanation of how the work will benefit patients and lay summaries

20. Next time round… • Induction pack • Contacts list • Projects list etc • Question use of workshare • Survey members

21. What next • Anyone with ideas for registry data? • Interested in joining us or know anyone who might? • email patient.council@renalregistry.nhs.uk • Fiona.loud@britishkidney-pa.co.uk • Thank you Claire, Peter, Nilesh, Oli, Denny, Bud, Iain and Brent for their work • And registry staff Sue, Ron, Fergus and Rishi