Yorkshire and the Humber Renal Network Transplant Forum 15 May 2015, 09:30-12:15

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Yorkshire and the Humber Renal Network Transplant Forum 15 May 2015, 09:30-12:15 www.england.nhs.uk

Welcome & Introductions Dr John Stoves Consultant Nephrologist, Bradford Teaching Hospitals NHS FT Renal Clinical Lead, Yorkshire & the Humber Strategic Clinical Network www.england.nhs.uk

Review of Previous Meetings and Actions Dr John Stoves & Dr Richard Baker Consultant Nephrologist, Bradford Teaching Hospitals NHS FT Renal Clinical Lead, Yorkshire & the Humber Strategic Clinical Network and Consultant Nephrologist, Leeds Teaching Hospitals NHS Foundation Trust www.england.nhs.uk

Strategic Clinical Network for Yorkshire and the Humber Transplant Forum Wakefield 15 th May 2015

5 Strategic Clinical Networks SCNs operate as engines for change across complex systems of care, maintaining and or improving quality and outcomes. They bring primary, secondary and tertiary care clinicians together with commissioners, partners from social care, the third sector and patients SCNs are nationally mandated, hosted by NHS England and will receive funding for their core functions

A profile for Nephrology within a regional CVD Network Promote current and future regional priorities for Nephrology Strengthen links with primary care, CCGs and Collaborative Commissioning Groups SYCOM, NEYCOM, 10CC Liaise with renal units, National Clinical Director, SCN renal leads, specialty leads (cardiac, diabetes, stroke), CRG leads Involve patients and patient representatives 6

A profile for Nephrology within a regional CVD Network Renal Clinical Expert Group, LIGs/ CVD Strategy Groups Summarise care quality indicators Public Health England QOF, Renal Registry/HES/NHSBT, Service Specifications (best practice, current initiatives, barriers to change) MDT regional forums (AKI, transplant, home therapies and shared care, conservative care) Support from the Clinical Senate and AHSN 7

Key renal priorities for Yorkshire and the Humber in 2014-15 Acute Kidney Injury Access to Renal Transplantation Assessing and managing variation

Not forgetting... Shared haemodialysis care Home therapies Conservative and palliative care Work Force Planning Care Planning Primary Care capacity, quality and expertise E-consultation Anaemia Management Emergency Planning Capacity Planning for Dialysis Transport Dialysis Away From Base Education (undergraduate, postgraduate, multidisciplinary)

... and other areas of interest Shared Decision Making YoDDA Adolescent Link Worker/ Adult Support Worker Greener healthcare - procurement Sharing of patient electronic medical records between primary and secondary care

11 NHS Presentation to [XXXX Company] [Type Date] Key Priorities Access to Renal Transplantation Hatfield Hall Stakeholder Event 30 th September 2013

Access to Renal Transplantation A regional MDT forum Issues of mutual interest Donor and recipient assessment pathways Timely Listing Waiting list reviews Annual consent and surgical review Immunological assessments Primary care communication Transitional care

Access to Renal Transplantation Case reviews Audit Telephone clinics Patient involvement Currencies/ tariff Repatriation of medicines

National Black, Asian and Minority Ethnic Transplant Alliance (NBTA) NHS BT People from BAME communities only constitute 5% of organ donors despite representing 27% of those on the transplant waiting list NBTA Forum: Moving Forward Together The NBTA is hosting a forum to showcase the work of the NBTA to date and to develop key big wins to support national strategies. By sharing positive examples of BAME donation work we hope to demonstrate what has been achieved to date and what can be done going forwards to help make a real difference to the lives of BAME people affected by serious, life threatening conditions. The outcome from the day will, in particular, influence the implementation of the NHSBT Transplant 2020 strategy.

16 Access to Renal Transplantation Access to Transplant and Transplant Outcome Measures (ATTOM) is an NIHR funded research programme, supported by the Department of Health, Renal Association, British Transplantation Society, UK Renal Registry, Scottish Renal Registry and NHS Blood and Transplant. ATTOM is a non-interventional, prospective, cohort study that aims to recruit all patients aged 18-75 years starting dialysis, receiving a transplant and a similar number of matched patients active on the transplant waiting list, from all dialysis and transplant centres in the UK over a one year period. The study aims are: To improve equity of access to kidney and pancreas transplantation across the UK To optimise organ allocation to maximise the benefit, from kidney and kidney-pancreas transplantation.

Timely Transplant Listing BTHNHSFT 17

Proposals for discussion A regional MDT Transplant Forum to share best practice from referral through work-up processes to post-transplant care Review the findings of the ATTOM study Support the work of BAME 18

A Yorkshire and the Humber Transplant Forum for sharing and developing best practice Sharing successes, challenges and barriers to change from multidisciplinary teams across the region and beyond 2 meetings in 2014

First meeting topics Making the link between Transplant 2020 Strategy, the NBTA and local communities Harmonisation of living donor and recipient work-up pathways Timely listing for renal transplantation

First meeting topics Making the link between Transplant 2020, the NBTA and local communities Kirit Modi, NKRF and NBTA Sadaqa Project in Birmingham Peer Educators Patient-led media campaign TV, radio, newspapers Stakeholder meeting for a community-based project

First meeting topics Harmonisation of living donor and recipient work-up pathways patient champions - ATTOM evening clinics primary care based altruistic pathway BAME focus

First meeting topics Timely listing for renal transplantation Early referral Streamlined pathways for live donor and recipient A consistent regional approach to ensure timely surgical consent Structures, processes, relationships with other departments New bottlenecks Dental screening Cancer screening BMI thresholds, weight management clinic

Second meeting topics Patient perspectives, progress with NBTA, northern forum Cardiovascular risk assessment tools Surveillance to detect and treat post-transplant CMV and polyoma virus infection A consent model for potential renal transplant recipients CPEX protocols and reports

Next steps agreed at last meeting Longitudinal metrics pre-emptive listing for transplant Patient satisfaction surveys sharing of resources Patients as champions and peer educators Telephone clinics Medicines management and medicines reconciliation Young Adult Worker Clinical guidelines for the acute admitting medical team

Topics for today Progress with BK virus screening post-transplant Transplant currencies Repatriation of immunosuppressive medications IT developments Consent clinic update Measuring and reporting outcomes BTS, ATC and KPAG updates

BK DNA PCR monitoring post-transplant All new renal transplant recipients 1,2 and 6 months or when transplant dysfunction BK, CMV, EBV, adenovirus.. Results in 7 days. Initial findings Other centres? Scheduling 27 NHS Presentation to [XXXX Company] [Type Date]

Transplant Currencies Thank you for all your input into this work so far. As a quick up date after our initial discussion a number of you volunteered to test and pilot the proposed template. We had several iterations of this template to improve and understand the underlying requirements and subsequently undertook some preliminary analysis of the data. Following this initial exercise we opened this invitation further and have received additional applications to supplement this original data. We have completed the analysis on the information submitted and would like to present them back to you on 29 th April so we can plan the next steps. 28 NHS Presentation to [XXXX Company] [Type Date]

Transplant Currencies With regard to telephone clinics there are a number of options available in the reference cost returns for the Finance department to record outpatient activity, this includes new and follow up but also there is provision for face to face and non-face to face. You could use the outpatient follow up non face to face contact to record this (361). A normal tariff price is build-up of an average cost from all the national returns submitted so there will be occasions where those who are at the forefront of such developments should be in a position of receiving a greater proportion of tariff until the system catches up. 29 NHS Presentation to [XXXX Company] [Type Date]

Repatriation of immunosuppressive medications Home delivery Other medicines from primary care Prograf conversion/ BHLY Where switching within a transplant or renal unit from one critical dose immunosuppressant to another occurs, it is recognised that support will be needed to facilitate this change. Resultant savings must be shared across the NHS including the unit where the switch is undertaken. 30 NHS Presentation to [XXXX Company] [Type Date]

IT developments Transplant Outcome and Review screen Living donor pathway Consent clinic in Leeds Valganciclovir dosing Scheduling of BK virus testing Direct reporting of BK DNA PCR results into BHLY Read coding/ unmapped results 31 NHS Presentation to [XXXX Company] [Type Date]

32 NHS Presentation to [XXXX Company] [Type Date]

Sharing Outcome Data Across the Region Dr John Stoves Consultant Nephrologist, Bradford Teaching Hospital NHS Foundation Trust and Renal Clinical Lead, Yorkshire & the Humber Strategic Clinical Network www.england.nhs.uk

Measuring and reporting outcomes Pre-emptive listing for transplantation Patient satisfaction surveys including the new consent clinic Centre-specific outcomes BHLY Quick Reports 34 NHS Presentation to [XXXX Company] [Type Date]

35 NHS Presentation to [XXXX Company] [Type Date]

36 NHS Presentation to [XXXX Company] [Type Date]

37 NHS Presentation to [XXXX Company] [Type Date]

38 NHS Presentation to [XXXX Company] [Type Date]

Patient Comments 39 NHS Presentation to [XXXX Company] [Type Date]

The Consent Model and Patient Pathway in Yorkshire and the Humber Dr Matthew Wellberry-Smith Consultant Renal Physician, Leeds Teaching Hospital NHS Foundation Trust www.england.nhs.uk

M Welberry Smith

Drivers Mechanics / practicalities Outcomes

Doing the best for our patients Avoiding poor outcomes Death Poor graft outcomes / early graft loss Making the best use of precious resource National Guidance i.e. Quality care!

Venue Date / time Up and running Remains a work in progress to develop over time

>5yrs Recently on listed waiting list, APKD, family with transplants, live donations, dialysis Clear Left clinic classic saying history of longstanding cardiac chest pain, not investigated further than baseline ECG. I ve learnt a lot today! Intermittent claudication with no MRA Suspended pending investigations

Pre-listing Proforma Fax across + relevant results BHLY entry Transfer PACS images All at least 48h before appt (Note this is deliberately separate to the listing MDT) Prior to annual review the same

Attendance a requirement for listing Active subject to Leeds review Review in Leeds (aim) within 6/52 2x DNAs to annual review clinic = suspension (though clearly only if no good reason!) But note option to formally opt out, by signing specific form via local nephrology team (to be returned to Leeds transplant coordinators)

Proforma

Surgical risks Dual and en-bloc considerations Need for 3 rd party vessels

Patient watches DVD (with family) Pre-clinic paperwork - Proforma - BHLY Tx assessment screen - Completed locally 1 week before appointment

Clinic physician reviews paperwork Surgeon consents patient Leeds Tx coordinator checklist re: ready to list Medical review of selected patients Parallel availability of Live Donor coordinator

All patients taken to Leeds MDT

Patient watches DVD (with family) Local pre-clinic paperwork update (1 week before appointment)?new clinical events

Clinic physician reviews paperwork Surgeon consents patient Tx coordinator reviews: Contact details Call in process Medical review of selected patients Parallel availability of Live Donor coordinator

Where new clinical event(s) or reasons for re-testing / reconsideration are identified: Test(s) proposed then performed locally Result to Leeds Tx coordinators Review at Leeds MDT Decision on listing / next move

Doing the best for every patient The people we call for transplant are fit to receive one; we don t call people who will suffer Making the best use of every organ Allocating organs appropriately

Patients removed from list Extra tests ordered (and outcomes of reviewing them)

Hard to be sure, but anecdotes good so far! Audit 2 year run in and annual audits planned Intangibles are usually unmeasurable (e.g. possible improvements in satisfaction from correctly managed expectations?)

Drivers Mechanics / practicalities Outcomes

BTS, ATC and KPAG Update Dr Richard Baker Consultant Nephrologist, Leeds Teaching Hospitals NHS Foundation Trust www.england.nhs.uk

Next Steps & Closing Remarks Dr Richard Baker Consultant Nephrologist, Leeds Teaching Hospitals NHS Foundation Trust www.england.nhs.uk

Thank You for Attending! Don t forget to complete your evaluation forms! www.england.nhs.uk