Renal transplantation at University Hospital North Midlands NHS Trust Kerry Tomlinson Please feel free to use your own Trust Powerpoint template if you would prefer Jul 2015

Preferred Pathway: Transplant First Identify LD Work up CKD team chase transplant status and document Transplant status discussed at CKD meeting Attend seminar, work up clinic and assessment Discuss transplantation and refer Pre-emptive transplant Tests ordered in parallel RCA for patients not listed at start of RRT eGFR<20 or 1 year pre RRT List Discuss RRT options Create access Preparation for access RRT

Key data (1) % of dialysis patients currently listed for transplant 20% (87/432) 26 listed are still pre-dialysis i.e. total list 113 % of listed patients currently suspended from transplant waiting list 37% (similar in dialysis and pre-dialysis) 23%UHB 50% Manchester (1) Please don’t go to great lengths to collect this data; if you don’t routinely collect it that is useful for us to know – we’re anticipating that many units won’t be collecting the majority of this data. (2) Please count a pre-emptive listing as zero so as not to skew the figures (3) Please provide your latest data or a summary of all data received from the UK Renal Registry

48 76 81 referral , haematology problem 144 crash lander 200 out of country 212 K/P referred to manchester 253 Late referral 289 previous transplant failed 08/13, had to be removed 294 acute start 301 rapid deterioration in transplant 387 late presenter K/P referred to manchester 465 chest problems under chest physicians 486 patient choice 648 aggressive fsgs, plan to wait this period of time. Activated as soon as could 732 BMI too great 806 personal choice 1019 very complex 1040 stoke patient , refused by UHB Key data (1) % of listed patients who were pre-emptively listed in 2014 63% (68% UHB, 55 % Manchester) Median time from dialysis start date to listing (2) 0 (0 UHB, 0 Manchester) (1) Please don’t go to great lengths to collect this data; if you don’t routinely collect it that is useful for us to know – we’re anticipating that many units won’t be collecting the majority of this data. (2) Please count a pre-emptive listing as zero so as not to skew the figures (3) Please provide your latest data or a summary of all data received from the UK Renal Registry

Key data (1) Renal Unit performance on the Renal Registry data quality dashboard (3) (1) Please don’t go to great lengths to collect this data; if you don’t routinely collect it that is useful for us to know – we’re anticipating that many units won’t be collecting the majority of this data. (2) Please count a pre-emptive listing as zero so as not to skew the figures (3) Please provide your latest data or a summary of all data received from the UK Renal Registry

Time to listing: Historical 2007-8 Median 170 days 2008-9 Median 0 days 2009-10 Median 0 days 2010-11 Stoke 84 Leighton 347 2011-12 Stoke 93 Leighton 407 (incomplete data) 2012-13 Stoke 0 Leighton 89 2014 Stoke 0 Leighton 0 Note post 2012 introduction of separate listing clinic in Leighton to parallel Stoke system, no other change made at same time

Unplanned starters 14% (19) listed 74% (14) listed <12 months Largest group who may have been listsed earlier/at all may be helped by psychology input 2010-2011 (up to October) 135 unplanned (22% known, 78% unknown) 14% (19) listed 74% (14) listed <12 months 26% (5)>12 months 3 - clinical reasons 1 - referral not received by centre (how since recovered function) 1- needed time to settle 86% (116) not listed 2 transferred 33 deceased 53 recovered 22 unsuitable 5 pt choice/1 DNA In parallel with this project an audit was carried out looking at unplanned 135 starters of which 78% were unknown. 86% not listed due to various reasons but 5 of these were pt choice and 1 DNA Overall 74% were listed in <12 months in keeping with NICE guidance >12 months 5 for various reasons Largest group who may have been listsed earlier/at all may be helped by psychology input

Key challenges for timely assessment and listing Complex patients often have significant delay, not all necessary Interaction with transplant centre Financial resource: tariff change will mean workup expected as part of low-clearance clinic? Process and maintaining good practice (audit and data) Stick to a limited number of bullet points