saving more lives with more living kidney donors

a m a n i f e s t o t o i n c r e a s e t r a n s p l a n t a t i o n

a report of the findings ofTHE 2017 LIVING KIDNEY DONOR SUMMIT

SAVING MORE LIVES WITH MORE LIVING KIDNEY DONORS

the production and distribution of this document was supported by the nKf (national Kidney federation).

editorial control belongs to the all party parliamentary Kidney group.

hosted by

THE ALL PARTY PARLIAMENTARY KIDNEY GROUP

I SAVED A LIfE

MY LIfE WAS

SAVED

saving more lives with more living kidney donors

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contents

foreword 3

introduction 4

overview of living donor Kidney transplants in the UK 6

data by transplant centres 7

summit and consultation 8

clarification of responsibilty and accountabilty 9

Unexplanied variation 10

appointment of living donor co-ordinators 19

improving structures and leadership 21

improving support for potential living donors 23

assessment of risk 28

preference for deceased kidney donor transplants 29

conclusion 30

acknowledgements 31

appendix - agenda for summit 32

list of attendees 33

contact details 34

recommendation 1 10

recommendation 2 18

recommendation 3 20

recommendation 4 22

recommendation 5 27

recommendation 6 28

recommendation 7 29

recommendations


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foreword

the nKf (national Kidney federation) is the largest kidney patients’ charity in the UK run by kidney patients for kidney patients.

in 2014/15 the nKf (national Kidney federation) observed a fall in the numbers of kidney transplants carried out in the UK using living kidney donors. this fall continued throughout 2015/16 and 2016/17 and was completely at odds with the rise in transplants from cadaveric donors. the nKf began to explore the reasons for this drop and embarked upon a consultation within the renal community. following that consultation the charity asked the all party parliamentary Kidney group in parliament to hold an exploratory living donor transplant summit within the parliamentary estate. that summit was held on the 22nd november 2017 under my chairmanship.

the findings of that summit, together with recommendations, form the content of this report. While the recommendations are for improving living kidney donation in england, many of them are also relevant to scotland, Wales and northern ireland.

Madeleine Moon MP chair, all party parliamentary Kidney group

introduction


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the all party parliamentary Kidney group consists of 106 members of parliament and lords. their registered purpose is: “to improve understanding in parliament of kidney disease and transplant medicine and promote improvements in the health and care services that are available to improve the health of people with renal failure”.

the secretariat of the group is provided by the nKf. the all party parliamentary Kidney group (appKg) monitors both the provision of dialysis services and transplantation in the UK. it maintains an active interest in all matters of chronic Kidney disease (cKd). as part of its programme the appKg held a living donor transplant summit in the parliamentary estate on Wednesday 22nd november, 2017, to which all the leading kidney donor transplant specialists in all the related fields of activity were invited. the purpose of the summit was to address the reasons for the drop in the number of living kidney transplants over the last three years in the UK and to identify what actions were needed to increase the number of living kidney transplants.

the appKg is very pleased to highlight this important issue in this manifesto which sets out a number of recommendations under seven headings. the recommendations include clarifying strategic roles and responsibility, reducing unexplained variations among transplant centres, improving the structures for supporting living kidney donation,

increasing funding to support living kidney donation by taking account of the long term savings of transplantation to the nhs and improving the support available to patients waiting for a kidney in finding a suitable living donor.

overall, this summit has highlighted the importance of giving greater priority by those with strategic responsibility for delivering the target set for 2020 as well as by the whole kidney community. it is essential that the current downward trend in the number of living kidney donations in the UK is reversed urgently. the appKg is, therefore, requesting that an update on all recommendations set out in this manifesto be provided by the appropriate organisation within six months of its publication. the appKg fully recognises that there are examples of excellent practice in living kidney donation in the UK and is delighted to include four such examples in the manifesto.

the appKg is most grateful to a wide range of individuals for their help in the publication of this manifesto.


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the appKg thanks the nKf for highlighting this issue and Kirit modi, life Vice-president of the nKf, for providing effective leadership in the development of this manifesto. the appKg is also grateful to all the speakers at the summit for openly sharing their views and responding to questions. a list of everyone who has contributed is set out in the manifesto.

this manifesto will be distributed widely and the appKg is confident that, with the commitment of everyone to work collaboratively which emerged strongly at the summit, real progress in increasing living kidney donations in the UK will take place soon.

Left to right: Jeremy Mean, Deputy Director, Health Ethics, Department of Health, England; Dr Caroline Wroe, Consultant Nephrologist, Clinical Lead for Living Kidney Donation The James Cook University Hospital, South Tees Hospitals NHS Foundation Trust; Elisabeth Buggins, Chair, Transplant 2020 Programme Oversight Group; Madeleine Moon MP, Chair, All Party Parliamentary Kidney Group; Jon Gulliver, Lead Commissioner, Renal Services, NHS England; Kirit Modi, Life Vice President, National Kidney Federation; David Marshal, Chair, National Kidney Federation; Richard Van Roon, National Kidney Federation Executive member; Lisa Burnapp, Lead Nurse Living Donation, NHSBT.

overview


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overview of living donor Kidney transplants in the UK

the number of living donor Kidney transplants (ldKt) carried out in the UK over the past three years, compared with targets set in the living donor Kidney transplantation 2020 strategy (ldKt 2020) have been going down. the figures published by nhsBt are as follows.

the actual number of ldKt for 2016/17 shows a reduction of 105 transplants, a drop of nearly 9% compared with the 2013/14 figure. the bar chart below shows the increasing gap between the ‘actual number’ compared with the target set.

Actual number Target Difference

2013/14 1148 1112 + 36

2014/15 1092 1143 -51

2015/16 1077 1223 -146

2016/17 1043 1260 -217

the target for 2020 is 1728 ldKt. this means that we will need an increase of 685 ldKt on the 2016/17 actual number i.e. and increase of nearly 65%.

an alternative measure of ldKt activity is the number of living donor kidney transplants undertaken per million of population per year (pmp). in 2013/14 the figure for the UK was 17.9 living donor transplants pmp and the figure for 2016/17 has reduced to 16.0 pmp. the target set for 2020 is 26 pmp. it is highly unlikely that the 2020 target will be reached unless urgent action is taken.


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measuring the number of living donor kidney transplants pmp is also effective in determining ldt activity by transplant centres.

nhsBt published the 2016/17 data, by transplant centres, for the first time recently. this is most welcome and should now be published every year. it shows a significant level of variation in the pmp among the 23 adult transplant centres in the UK. the data ranges from 40 pmp in Belfast to 6 pmp in nottingham and it is shown in the chart below.

it is important to note that the UK is doing very well in relation to the paired exchange scheme in terms of the number of registered patients receiving a transplant through the scheme. many of these recipients are immunologically complex and a higher proportion is from Bame communities.

it is also important to consider these figures for ldt alongside figures for transplants from deceased donors. figures for 2016/17 indicate that deceased donor activity reached record levels in 2016/17. this is

most welcome and appreciated. however, one of the key 2020 targets related to deceased donation is improvement in the “consent rate” which is increasing very slowly. it seems unlikely that the target of 80% consent rate will be reached by 2020 and consultation on “presumed consent” is currently taking place in england, following similar action in Wales and scotland.

the focus of this paper is living donor kidney transplantation and the rest of the manifesto explores this further.

data of transplant centres


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summit and consultation

summit organised by appKg and consultation undertaken by the nKf

the nKf published a discussion paper, “challenges facing living donor kidney transplantation in the UK”: www.kidney.org.uk/assets/Uploads/discussion-paper-final-nKf.pdf

in June 2017 and invited responses to it. a very good response was received from 20 organisations and individuals. a summary of the responses received and a list of the respondents is available from the nKf website: www.kidney.org.uk/home/news-2/summary-of-responses/

the responses were considered carefully and a Briefing paper for the appKg on living kidney donation was published: www.kidney.org.uk/assets/Uploads/Briefing-paper-appKg-summit-final.pdf

the appKg summit on living kidney donation took place on 22 november 2017. the agenda for the summit and the list of attendees is set out in the appendix. this manifesto is based on the outcome from the summit and the Briefing paper. the main issues are outlined below with corresponding recommendations.


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clarification of strategic responsibilities and accountability for implementing the ldKt 2020 strategy in england.

the arrangements for implementing the ldKt 2020 in england at a strategic level are complex. there are five groups with strategic responsibilities.

• secretary of state for health and civil servants in the department of health in england.

• the transplant 2020 oversight group

• nhs england

• nhsBt

• the 2020 strategic implementation group

The Secretary of State has overall responsibility for organ donation and transplantation while the department of health takes an overarching view on all forms of donation and transplantation. however, the secretary of state has delegated this function to nhs Blood and transplant (nhsBt) in the main but, of more relevance to living donation, has given commissioning responsibility to nhs england (nhse) for everything to do with renal transplants. it is not clear how the secretary of state holds nhse and nhsBt to account in relation to living kidney transplantation.

The Transplant 2020 Oversight Group is responsible for holding to account all parties, including the four health departments (england, scotland, Wales and northern ireland) and nhsBt, for their role

in delivering the ldKt strategy. it works on the basis of “peer accountability” although it is not clear if the oversight group is accountable to anyone. it is currently in the process of reviewing its terms of reference.

NHS England is responsible for commissioning and commissions:

• all transplant related care provided by adult specialist renal and transplant centres; including work up of potential living donors.

• all transplantation activity provided by adult renal transplant centres; including living donor nephrectomy.

nhse also has a quality assurance role and all providers must demonstrate compliance with the specialist services specification for living donation and transplantation.

in particular, nhse provides funding for living donor co-ordinator (ldc) posts in hospitals.

NHSBT have the responsibility for monitoring donor and recipient outcomes, providing relevant statistics, developing and administering the UK living Kidney sharing scheme, engaging with professionals, patients and the public to raise the profile of ldKt and fostering innovation to support increases in activity and providing professional leadership for ldcs.

clarification of responsibility & accountability


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the 2020 Strategic Implementation Group (sig) is responsible for developing the plan for action and delivering it and reports to nhsBt and the 2020 oversight group.

it is not always clear what action each of these five groups has taken during this period of decline in the number of ldKt. While the importance of collaborative working is recognised and accepted, the lines of accountability can be easily blurred at times. the implications of any change in the terms of reference of the 2020 oversight group may also affect this. the first recommendation, therefore, is about responsibility and accountability in relation to england. the arrangements in scotland, Wales and northern ireland are comparatively straightforward.

clarification continued

REcOMMENDATION 1

it is recommended that the department of health in england, the transplant 2020 oversight group, nhs england and nhsBt review their responsibility and accountability in context of the downward trend in living kidney transplantation and outline actions they plan to take to meet the ldKt target set for 2020.

Unexplained variations in the number of living-donor transplants undertaken by transplant centres.

given the variable socio-economic, ethnic and other demographics across the UK it would be highly unusual if there were no variations in the number of ldKts carried out in the 23 transplant centres in the UK. however, the variation in the ldKt rates among transplant centres shown in paragraph 2 on page 7, are huge and there is unexplained variation.

the publication of the 2016/17 data by nhsBt provides opportunities to address this. nhse’s responsibility for quality assurance enables it to identify transplant centres which are “outliers” and to request those not performing well to develop a plan of action for improvement. nhse should publish the outcome of this work promptly on an annual basis, since this

Unexplained variation


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Unexplained variation continued

has not taken place to date. also, nhse is currently developing tariffs for living donation; non-mandatory tariffs will be introduced from april 2018 and mandatory tariffs from april 2019. this provides nhse with a unique opportunity to use the commissioning process as a lever for change. it would be appropriate for the tariff to include financial incentives for transplant centres and referral hospitals which meet a minimum number of living donation activity measured by pmp, for example.

there are numerous examples of excellent practice in ldKts at both transplant centres and referral centres in the UK. these need to be publicised widely by the British transplantation society (Bts) and nhsBt so that we may learn from them. two examples of these are included in the manifesto. one is the transplant centre at Belfast (which had the highest pmp ldKts carried out in the UK in 2016/17). the second is from a referral hospital, James cook hospital in middlesbrough. the appKg is grateful to dr aisling courtney, consultant nephrologist, the Belfast transplant centre and dr caroline Wroe, consultant nephrologist, James cook hospital, for sharing their work.

it is not surprising to note that in both cases, strong leadership has resulted in a cultural change in the approach to living donor transplantation.

members of the 2020 strategic implementation group have been involved in “shared learning events” across the UK. it would be most helpful to publish the outcomes from these events. another important initiative is transplant first, a quality improvement project started in the West midlands in 2015. a summary of the project is set out in this manifesto and the appKg is grateful to dr Kerry tomlinson, consultant nephrologist and helen spooner, advanced nurse practitioner for sharing this work.

more recently getting it right first time (girft), which is an innovative project led by nhs improvement in england, started in november 2017 for renal transplantation. it aims to deliver a high level challenge to all renal units to improve access to kidney transplantation. the renal leads for the project, dr graham lipkin and dr Will mcKane, will undertake “deep dive” visits to every renal unit and engage with chief executives, medical directors and renal clinical directors at each trust. it is anticipated that the project will reduce unwarranted variation, improve the quality of patient outcomes and deliver operational improvements that translate into resources savings. the appKg hopes that this manifesto will be helpful to the girft project in addressing the unexplained variation in ldKt among transplant centres in england.


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1 . northern ireland ldKt programme

Dr Aisling E courtney, consultant nephrologist

Belfast city hospital, Belfast health & social care trust

Background

prior to 2010, northern ireland (ni) had a low rate of living donor (ld) kidney transplantation (mean 4.3 pmp per annum (pa) 2000-2009), and patients in ni were waiting longer than their counterparts in almost every other region in the UK for kidney transplantation.

current position

there has been a significant and sustained increase in ld transplantation in ni, the mean ld rate over 2011-2016 was 33.4 pmp pa, with >40 pmp in 2016.

this exceeds the ld rate in the other UK regions and in all other european countries.

over the same time period the number of patients on dialysis in ni has fallen substantially (figure 1 page 16).

multiple factors were involved in this transformation, the three considered most influential are:

Looking after the donor

the philosophy in ni is ‘to make it as easy as possible to for people to donate’. previously a major disincentive to donation was a lengthy donor work-up process. multiple assessment stages and hospital visits frequently resulted in donor fatigue and subsequent drop-out. now those deemed to be suitable after a screening questionnaire, attend a ‘1-day’ assessment where all investigations, that were previously requested sequentially, are scheduled for one visit. this is a more compressed approach than any other transplant centre in the UK, is universally well received by potential donors, and regular audit has repeatedly demonstrated it to be safe as well as efficient.

additionally we do our utmost to care for each donor, so donation in ni is typically a very positive experience. this has facilitated a cultural change within communities which is influential in sustaining the phenomenally high number of people volunteering. Addressing institutional barriers to living donation


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in ni one of the major limitations to ld was the availability of surgeons with the skills to perform the donor surgery; and a unique innovative solution was required as the tiny ld programme precluded the recruitment of a suitable transplant surgeon to Belfast. While this particular issue may not be a common problem, in most institutions there is something that is the major barrier to further development of the ld programme, and often ‘lateral’ thinking and innovation is essential.

changing the philosophy

traditionally in ni nephrologists prepared their patients for dialysis. this was entirely appropriate since the chances of a pre-emptive transplant were extremely tiny. there has been a change in mind-set across all of the renal community to early preparation of suitable patients for transplantation.

a similarly important change in philosophy has occurred within the transplant team to accept higher immunological, technical and medically risk transplants

resulting in greater equity of access to ld transplantation.

conclusion

the changes made in structure and approach to living donation in ni has facilitated the staggering increase in ld transplantation since 2010. these are broadly applicable and none need to be exclusive to this region.

further information is available at;

www.donatelife.co.uk

www.ncbi.nlm.nih.gov/pubmed/29150247


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2. teesside lKdt service

Dr caroline Wroe, consultant nephrologist, clinical lead for living Kidney donation

the James cook University hospital, south tees hospitals nhs foundation trust

Background

south tees hospitals nhs foundation trust covers a population of 1.01 million and provides the living Kidney donor service for teesside. more than 50% of the population have high levels of deprivation and ethnicity is 97% white British. potential living kidney donors complete medical assessment locally, prior to referral to the freeman hospital in newcastle. the lKdt service was set up in 2011 with streamlined pathway and ‘one stop’ assessment clinic.

Improved outcomes for donors and recipients following development of the LKDT service

since 2011 the service has been evaluated annually and the following outcomes observed:

• a reduction in waiting time to complete living kidney donor work up (by 1/3);

• a 50% reduction in the number of hospital visits required by the donor, avoiding additional time off work or away from family;

• a sustained increase in the number of local patients receiving living donor transplants (from 14 pmp in 2010 to 19 pmp in 2016-reaching the national target);

• an increase in pre-emptive living donor transplant rates (from 27% in 2011 to 63% in 2016);

• an increase in the number of altruistic donors and donors worked up for non- local recipients (representing an additional 5-10 donors per year);

• positive donor experience: in a donor survey in 2012 100% of patient were positive about their experience of living kidney donor work up (76% rated their experience as excellent, 12% as good and 12% as fair).


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We believe this has been achieved by the following:

Having early conversations – the option of living kidney donation needs to be in the first conversation we have with patients when we talk about kidney failure, so the whole team need to be confident in starting the conversation.

We acknowledge the difficulties faced by patients when talking about living donation with their friends and relatives and offer advice about how and when to start that conversation.

Simplifying the donor experience and focus clinical expertise – the commonest concerns raised by donors remains the time taken to establish if they are fit to donate and the ability to get prompt answers to their questions about health and risk. cutting waiting time for tests and combining several tests into one visit offers huge benefits, as does identifying a clinical lead for living donation to develop skills and confidence in dealing with the issues raised during living donor work up.

Peer education and donor involvement – potential donors value the opportunity to discuss donation with previous donors and recipients.

peer support is offered to all potential donors in teesside and is provided either on a one to one basis or in a group setting over coffee at bi-annual open days.

Partnership with the local transplant team and donor surgeons – good communication and mutual confidence between the referral centre (James cook) and transplant centre (freeman newcastle) makes the transition for the donor and recipient easier and facilitates management of complex cases.


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3. transplant first

transplant first (tf) is a quality improvement project initially started by the West midlands cardiovascular clinical network in 2015.

prior to the project the West midlands had a very low rate of pre-emptive transplant listing (putting a patient onto the transplant list before they start dialysis) and therefore a low rate of pre-emptive transplantation, whether from deceased or living donors.

all West midlands renal units started collecting data on why patients were not listed, and simultaneously held regional events looking at transplant pathways both within units and across the region. the project was not specific to living donation. however, a patient who is not

on the transplant list cannot receive a kidney from a living donor, and early workup facilitates time to discuss living donor options. Units were free to target their process mapping and local changes to whatever part of the pathway they felt needed work and some units focused on living donation.

although initially a 2 year project in reality this is on-going work. in 2016 regional networks were restructured to reflect different priorities and so the regional support for the project (in terms of project management support) was withdrawn. fortunately, the renal registry and Kidney Quality improvement partnership (KQuip) were able to step in and offer on-going support but it did mean that there was some stalling in the process.

figure 1. proportion of patients starting dialysis who are “missed” i.e. are neither unfit for a transplant or on the transplant list. this has fallen throughout the project.

the project still has some way to go to reach its targets but there is evidence that access to transplantation in the West midlands is improving (see below).


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figure 2. the proportion of patients being listed pre-emptively for transplantation at UhB (the larger transplant unit) has increased.

figure 3. pre-emptive Kidney alone transplant rates from West midlands renal Units is rising.

the West midlands renal community aim to continue to use the data they are collecting to improve processes further. they have also developed a culture of change across the region; the next plan is to focus more on the ld part of the pathway.

however units report that one of the main barriers to on-going change is lack of resource. in particular it is very hard for people to free up time to work on Quality improvement rather than immediate face to face patient care. importantly this is not lack of motivation but the reality of limited resource.

the project is being rolled out nationally via KQuip. those interested can access the data collection tools, and a “how to

guide” here. more importantly the project is being discussed at KQuip regional days with the plan to provide shared learning and support.

With the introduction of girft, the publication of data from access to transplantation and transplant outcome measures (attom), and on-going work to deliver ld2020 there is currently widespread enthusiasm for understanding and addressing inequity of access to transplantation. tf dovetails with this agenda and allows regions to understand why patients are not transplant listed and therefore do something to improve equity of access to this life changing treatment.


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the second recommendation, therefore, relates to ways in which we can address the unexplained variation in ldKts in the UK.

REcOMMENDATION 2

(a) that nhse identify transplant centres which are “outliers” according to the 2016/17 living donation data, and publish the outcome of their quality assurance work with all transplant centres as soon as possible and subsequently on an annual basis.

(b) that nhse use the development of the tariff for living donation as a lever for change and include financial incentives for transplant centres and referral hospitals which meet a minimum level of ldKt activity measured by per million of population per year.

(c) that the Bts and nhsBt publicise examples of good practice in living donation and transplantation at individual hospitals in the UK and outcomes of initiatives such as the “shared learning events” and transplant first.

Kerry Tomlinson consultant nephrologist

Helen Spooner advanced nurse practitioner renal services


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appointment of living donor co-ordinators

some hospitals do not employ sufficient living-donor coordinators (ldc)

peer review visits of Kidney and pancreas transplant centres in the UK led by the nhs england’s Quality surveillance team have identified some transplant centres at which the number of ldcs employed by the trust is of concern. nhsBt has developed a tool for calculating the number of ldcs needed at both transplant centres and referral hospitals, according to the complexity of their individual programmes. anecdotal evidence suggests that there are difficulties within trusts in covering for ldcs who go on maternity leave, for example. it is clear that the employment of sufficient ldcs by trusts is a major issue and that senior staff responsible for renal services in hospitals sometimes have difficulty in persuading trust management in resolving this matter.

the contribution of the ldc in engaging with potential living-donors and recipients so that a transplant takes place is critical within a multi-disciplinary team. ldcs are a dedicated and committed group of specialist nurses and their ability to support potential living donors is limited without sufficient staff within their teams.

nhs england is responsible for funding ldcs in england. nhs england is planning to introduce a non-mandatory tariff for living donation from april 2018 and a mandatory tariff from april 2019.

it is important that it uses this opportunity to establish a benchmark for how long it should take to complete the assessment process from the time a potential donor expresses

an interest by volunteering to be a potential living donor to the time that it is decided clinically whether the potential living donor can proceed to the next stage or not. this is usually referred to as the “work up” period.

the next stage is the independent assessment undertaken by the human tissue authority (hta). the hta’s role is to provide an independent check to help protect the interests of living organ donors. they ensure each individual donor has an opportunity to speak freely to an independent assessor who is trained and accredited by hta. independent assessors undertake interviews with donors and recipients to explore whether the conditions set out in the human tissue act have been met. also, the hta is about to undertake a project looking at the long term sustainability of the system/framework for independent assessors. there has been a concern for some time that a continuing reliance on independent assessors who are largely volunteers is unsustainable. the appKg hopes that it will be possible for the hta to resolve these concerns soon.

in order to ensure that sufficient ldcs are appointed and appropriate cover provided when ldcs are away, it is suggested that a benchmark of around 16 weeks for the “work up” be included in the new tariff and that financial incentives be offered to transplants centres and referral hospitals for every case “worked up” within 16 weeks. the importance of making the “work up” process easier and quicker for potential


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appointment continued

living donors is highlighted through anecdotal evidence from patients and others.

the remarkable improvements by treating the potential living donor as a Very important patient (Vip) achieved at the James cook University and Belfast hospitals indicate that this is possible both at referral hospitals and transplant centres. it would not be surprising to find similar examples of good practice at other hospitals in the UK.

nhs england is also responsible for the “specification” for living donation related to its commissioning process. highlighting the need for employing sufficient ldcs in the specification would be most helpful. it is recommended that nhse, working in partnership with the renal services

clinical reference group, should review the current specification to help with the current difficulties faced by a number of hospitals.

the work which nhsBt has started in establishing a tool for calculating the number of ldcs needed is most welcome.

the importance of publishing information by transplant centres and referral hospitals cannot be underestimated.

it is recommended that nhsBt and nhse publish information on the hospitals which do not employ sufficient ldcs or provide suitable cover for ldcs who are away (for example on maternity leave). this will enable patient groups and others to raise this matter directly with trusts and be helpful to renal service managers.

the third recommendation is, therefore, related to the employment of sufficient ldcs.

REcOMMENDATION 3

3(a) that nhse establishes a benchmark for completing the “work up” process for all potential living donors and includes a financial incentive for hospitals in the new tariff, for every case completed within 16 weeks.

3(b) that nhse, working in partnership with the renal services clinical reference group, reviews the current specification for living donation with a view to highlighting the importance of employing sufficient ldcs by hospitals.

3(c) that nhsBt and nhse publish information about hospitals which do not employ sufficient ldcs so that patient groups and others can support renal managers in hospitals in submitting their requests to trust management.


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improving structures and leadership

improve the structures and leadership for supporting living donation

living kidney transplantation makes a significant contribution to the overall number of all kidney transplants which take place in the UK. in 2016/17, living kidney transplants constituted 34% of all kidney transplants in the UK. however, the current structures for supporting living kidney transplants are not adequate and need to be improved.

everyone is aware of the great financial pressures on the nhs at present. there is little evidence that anyone has seriously considered the significant long term savings the nhs would make by increasing living kidney transplantation and reducing the number of patients who undergo dialysis. on average, living kidney transplants last much longer than cadaveric kidney transplants.

it is very important that, in the context of financial pressures on the nhs, greater priority should be given to the financial savings resulting from more living kidney transplants.

the standard contract for the adult kidney transplant service published by nhse in 2009 states the following.

“transplantation is not only beneficial for the individual but also represents value to the greater health economy. the first year of care after a kidney transplant costs around £17,000 and £5,000 for every

subsequent year; whereas the average cost of dialysis is £30,800 (data from 2009, and is likely to change with the introduction of a national tariff) in addition, many patients can return to work and therefore have a lower dependency on state support.”

this analysis needs to be updated and the savings resulting from more living kidney transplants should be identified separately. it is recommended that the department of health in england and nhs england publish a report on the financial benefits of increasing living kidney transplants.

the recent action by nhsBt of requesting all transplant centres and referral hospitals to appoint a lead nephrologist for living donation is most welcome and has had a very positive response. however, there is no funding available to enable busy professionals to undertake this new role effectively. it is not appropriate to rely on goodwill alone to establish effective structures to increase living donations. it is recommended that nhs england should provide funding so that the lead nephrologists have time to undertake their roles. it is suggested that funding for half a day a week per nephrologist would be appropriate. also, there is currently no regional co-ordination for living donation. this means that the opportunities for peer support and sharing good practice regionally are very limited. it is recommended that nhs england,


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improving structures and leadership continued

in liaison with nhsBt, establish a team of regional lead nephrologists who can provide support locally and share good practice. it is important that nephrologists, rather than living donor co-ordinators, undertake this role because they will have the credibility and experience to influence improvements within hospitals. it is suggested that this should be a part-time paid role, say for two days a week.

REcOMMENDATION 4

4(a) that the department of health in england and nhs england publish long term financial benefits to the nhs of increasing living kidney transplantation.

4(b) that nhs england funds the newly appointed lead nephrologists for living donation so that they can undertake their roles effectively.

4(c) that nhs england, in liaison with nhsBt, establishes a team of regional nephrologists so that they can offer support locally and share good practice.

the next recommendation relates to improving structures and leadership.


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improving support for potential living donors

it is not easy for patients waiting for a kidney transplant to discuss living donation with family members or close friends. currently no formal guidance exists to support the patient in doing so.

practice across the country varies; some hospitals offer one to one meetings with those interested in becoming a living donor, while others offer group sessions attended by both patients and their potential donors. some hospitals also encourage potential donors and recipients to talk to those who have successfully donated or received a living-donor kidney.

most hospitals provide written information on the living donation process. While each of these approaches has merit and can be effective, we need to explore other ways of helping find potential living donors, particularly in light of new research mentioned below.

recently published research findings provide us with valuable information on the profile of living kidney donors in the UK. the key findings from the access to transplants and transplant outcome measures study (attom) https://doi.org/10.1093/ndt/gfx036 are summarised below and the appKg is grateful to dr gabriel oniscu, consultant transplant surgeon, royal infirmary edinburgh and dr diana Wu, research fellow, royal infirmary edinburgh, for their help in providing this summary.

this UK-wide study was conducted as part of the attom research programme, funded by the national institute for health research (nihr).

this study adds new and important knowledge about factors associated with ldKt compared to deceased donor Kidney transplantation (ddKt) among UK patients who are suitable to undergo transplantation. ldKt, and in particular pre-emptive ldKt, provides best clinical outcomes for patients with end stage renal disease. this study has identified specific patient groups with a lower likelihood of undergoing ldKt compared to ddKt.

among patients undergoing kidney transplantation in the UK, there are significant age, ethnic, socio-economic and geographical disparities in the utilisation of ldKt. the likelihood of ldKt compared to ddKt is significantly reduced if the recipient:

• is older

• is from a Black or asian background

• is divorced, separated or widowed

• has lower educational attainment

• experiences socio-economic deprivation (no car or not a home owner)

improving support for potential living donors continued


24

these findings demonstrate that social factors play a role in influencing access to ldKt in the UK. the demonstrated disparities may reflect both barriers in certain patient groups as well as important positive factors in others. improving access to ldKt will not only benefit individual patients, but will also have favourable effects for the wider kidney patient population by effectively increasing the overall pool of available organs.

the appKg is grateful to dr pippa Bailey, clinical lecturer in renal medicine at the University of Bristol and the north Bristol nhs trust for providing a summary of a study on reasons why people who are socioeconomically disadvantaged are less likely to get a living-donor kidney transplant.

“in-depth interviews with 32 people who had received a deceased-donor kidney transplant (i.e. people who hadn’t received a living-donor kidney transplant) were conducted. interviews suggested that more deprived people were less involved in and less confident in having discussions about their kidney disease treatments, and they felt less engaged by doctors in treatment discussions. this finding is in keeping with research that has shown that more socioeconomically disadvantaged groups have lower levels of ‘patient activation’, a behavioural concept describing the ‘knowledge, skills and confidence a person has in managing their own health and health care’.

more deprived people also said that they didn’t feel like they could rely on a lot of support from family and friends, so they often struggled to think of people who might be suitable donors. lots of interviewees said that they found it difficult to have conversations about living kidney donation with their family and friends. finally, more deprived people described having to focus on the short-term, and this appeared to stop them thinking about and planning for long-term treatment options like living-donor kidney transplants. http://bmjopen.bmj.com/content/bmjopen/6/3/e010605.full.pdf

dr pippa Bailey is hoping to undertake further research into how patients who are socio-economically deprived can be supported in getting better access to living donor kidney transplantation”.

the key area of development seems to be exploring ways in which the patient waiting for a kidney can be supported in finding a potential living donor.

nhsBt has recently commissioned national Black, asian and minority ethnic transplant alliance (nBta) to undertake an innovative initiative to encourage more living-kidney donation from targeted Bame groups. four projects, aimed at the hindu, Jain, sikh, and african and african-caribbean communities in london and leicester have been established. the focus is on how more living donors from these communities may be encouraged to come forward through work by and with


25

the targeted communities, development of culturally sensitive resources as well as providing support to the patient through arranging sessions at home with extended family and friends.

details of this living transplant initiative are available from the nBta website (www.nbta-uk.org.uk). the appKg is grateful to mr manhar mehta for sharing the work being done by the Vanik council UK, which is included in this manifesto.

also, during 2015/16, nhsBt sponsored a one-year pilot study from Kidney research UK (KrUK), to encourage living kidney donation through a peer volunteer home education initiative. in June 2017, nhsBt developed a series of short films, called “let’s talk about…..” to encourage living donation and these are available at www.organdonation.nhs.uk//supporting-my-decision/

We now need a strategic approach to providing better support to kidney patients in finding potential living donors.

it is recommended that nhsBt should develop this in liaison with the British transplantation society (Bts) and nBta and use the evaluations of the recent initiatives led by nBta and KrUK in doing so.

alongside this, we need to allocate more funding to campaign for living donation.

nhsBt leads on campaigning for organ donation on behalf of the department of health in england and provides a wide range of support through its communications team for both living and deceased donor kidney transplantations. however, its campaigning budget needs to be reviewed. in 2016/17, around £100k, from a total budget of £1.86 million was used from this budget for living donation. in 2017/18, around £7k has been allocated for living donation, from a total budget of £2.43 million. clearly, this needs to be reviewed, particularly in light of the two research findings set out above.

in addition, data provided by nhsBt shows that 48% of the population did not know that living kidney donation is possible.

the data collected by nhsBt on living kidney donors and recipients needs to be improved in relation to ethnicity. the current data collected on ethnicity is too general (for example all asians are grouped together). also, no data is collected on the religion of living donors or recipients.

religion is identified as one of the reasons for some people from Bame background as a barrier to organ donation. it is recommenced that nhsBt, in liaison with the Bts and nBta, improve the data collected on ethnicity and begin collecting data on religion.


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improving support for potential living donors continued

Vanik council UK : project on living donation project leader : mr manharbhai mehta.

one of the main pillars of Jainism is the sanctity of all life; together with a compassion for others. Vanik council UK is an umbrella organisation of 26 Jain organisations in the UK and was delighted to participate in the living transplant initiative led by nBta and funded by nhsBt.

the aim of the project is to increase the number of Jains in north West london who express an interest in living kidney donation and eventually become living kidney donors. north West london probably has the largest Jain community, mostly gujarati speaking people who migrated from india and east africa to the UK over forty years ago. the project started in January 2017 and will finish in march 2018.

We began by developing resources on living donation aimed at the Jain community. our leaflet is available at Vanik council living donation. a video to accompany the leaflet will be available soon. We then started raising this issue at a number of Jain community events. three events have been organised to date. the first one was at the navnat centre in hayes hosted by the navnat Vadil mandal.

the second was hosted by the navjivan Vadil Kendra at the satavis patidar centre in harrow. at each of these events, talks by living kidney donors and recipients to around 200 people generated a lot of discussion and interest. the third event was our main conference on living donation in october 2017, at the navnat centre. this consisted of a gp talking about how to look after your kidney, a transplant surgeon outlining the benefits and risks of a living kidney transplant compared to a deceased kidney transplant, a living donor co-ordinator explaining the process of assessment for a potential living donor and stories from living kidney donors and recipients. around 200 people attended the conference and the outcomes were impressive.

the impact of the project to date has been as follows. 76 Jains have expressed an interest in becoming living kidney donors after attending one of our events, either to a family member/close friend or to a stranger. all of these were invited to attend further meetings with a living donor co-ordinator at two separate events, when a total of 20 people attended. from these 2 people have been linked to the local hospital at hammersmith to

give a gift, donate a kidney: a Jain project


27

be assessed as potential living donors. in addition, a Jain woman donated her kidney to her friend at hammersmith hospital. this is the first live donation from a Jain since the project started.

We will continue this work and a further conference, similar to the one above, has been planned for 4 march 2018. also, the Jain samaj in manchester has expressed an interest in organising an event on living donation and we are looking forward to working with them.

We have learnt a lot by participating in this initiative and are confident that many Jains will become living kidney donors in the future. We would very much like to continue this work after march 2018.

REcOMMENDATION 5

5(a) that nhsBt, in liaison with the Bts and nBta, develop a strategy for supporting kidney patients in finding potential living donors and use the outcomes from the recent initiatives led by nBta and KrUK in doing so.

5(b) that the department of health in england and nhsBt significantly increase the budget allocated for campaigning for living donation in 2018/19 and subsequent years.

5 (c) that nhsBt, in liaison with the Bts and nBta, improves the collection and publication of data on living donors and recipients by ethnicity and begin collecting data on religion.

assessment of risk


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more consistent assessment of risk for potential living donors

it is very important that the risk to potential living donors is assessed carefully and consistently across the UK. the potential living donors should be provided with full information and engaged in an informed discussion with the clinician so that they can decide on whether to go ahead or not. there is some evidence that there is inconsistent practice among nephrologists and transplant surgeons. a simple example of this is the criterion used for the Body mass index (Bmi) of a potential living donor, which can vary from 30 to 35 at different transplant centres.

the appKg is grateful to dr lorna marson, president of the Bts, for providing the following update on this issue.

“following on from a stimulating session on risk and consent at the 2017 Bts annual congress, the Bts is working in collaboration with nhsBt (odt) on ways to improve how risk is communicated and how consent is gained in the context of organ transplantation. We held an exciting and dynamic workshop in november,

with representation from different organ groups, patients and lay members, as well as legal representation. We took a comprehensive look at all aspects of how we communicate risk to transplant candidates and living kidney donors, examined examples of good practice, and shared our thoughts and experiences.

We are now collating those discussions in order to develop an intervention. this is likely to include an information ‘toolbox’ available to all patients and clinicians to aid shared decision-making. We will present our work to date on this at the Bts annual congress in march 2018.

We are also pleased to announce that the updated Bts clinical practice guidelines for living Kidney donation are now undergoing final review. We anticipate that the final version will be launched on the website in early 2018.”

the appKg welcomes both these developments.

REcOMMENDATION 6

that the Bts liaises with the nKf in how updated information on the risk to potential living kidney donors can be communicated widely so that this can help encourage more consistent practice throughout the UK.


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preference for deceased kidney donor transplants

some kidney patients may prefer to wait for a deceased donor kidney transplant rather than a living donor kidney transplant.

there is anecdotal evidence that some kidney patients waiting for a transplant may not wish to “burden” family members or close friends with having to consider the possibility of becoming a living donor or having to undergo surgery. the reduction in the average waiting time in receiving a kidney donated after death in the UK may also be a consideration for some patients.

it is important that patients waiting for a kidney transplant and potential living donors fully understand the advantages

and disadvantages of living kidney transplantation compared to deceased donor kidney transplantation. there is no national guidance on this matter and it is recommended that nhsBt, in liaison with the Bts, should produce such guidance.

We clearly need to better understand the anecdotal evidence mentioned above and it is recommended that nhsBt should commission research so that we can find out more.

REcOMMENDATION 7

7(a) that nhsBt, in liaison with the Bts, publish national guidance on the advantages and disadvantages of living kidney donor transplantation compared to deceased donor kidney transplantation.

7(b) that nhsBt commissions research into reasons why some kidney patients waiting for a kidney may prefer to wait for a deceased donor kidney transplant instead of considering a living donor kidney transplant.

conclusion


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the drop in the lKdt in the UK is clearly of concern.

the summit explored ways in which this trend can be reversed. the importance of collaborative working in addressing this was highlighted by all the speakers at the summit. the recommendations set out in this manifesto highlight the urgent need for giving greater priority to living kidney donation and the appKg hopes that the whole kidney community will rise to this challenge. the appKg is pleased to include examples of good practice so that this can be shared widely and encourage peer learning. the appKg is looking forward to receiving positive responses to the recommendations in the next six months so that we can report further on this in a year’s time.


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acknowledgements

the appKg is most grateful to valuable contributions from many individuals in the development of this manifesto. We are delighted to thank the following for their support:

dr aisling courtney

dr caroline Wroe

lisa Burnapp

Jon gulliver

elizabeth Buggins

Jeremy mean

dr diana Wu

dr gabriel oniscu

dr pippa Bailey

mr manhar mehta

dr graham lipkin

dr Will mcKane

dr lorna marson

dr adnan sharif

dr sarah fluck

sandra cruikshank

dr marina loucaidou

mr. Bimbi fernando

dr Kerry tomlinson

helen spooner

Jessica porter

david marshall

tim statham

andrea Brown

donna Blizard

Kirit modi

appendix


32

agenda of the summit held on 22 november 2017

2.00pm - Welcome and introduction: madeline moon mp

2.05pm - challenges facing living donation in the UK: Kirit modi, nKf

2.20pm - View from the department of health (england): Jeremy mean, department of health, england

2.35pm - View from transplant 2020 oversight group: elisabeth Buggins, chair of the transplant 2020 oversight group

2.50pm - View from nhs england: Jon gulliver, nhs england

3.05pm - View from nhs Blood and transplant: lisa Burnapp, nhsBt

3.20pm - View from referral centre: caroline Wroe, consultant nephrologist

3.35pm - open discussion and way forward: madeline moon mp, Kirit modi and timothy statham

3.55pm - next stages and conclusion: madeline moon mp

4.00pm - close


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list of attendees

pippa Bailey, researcher, Bristol

donna Blizard, senior administrator, nKf

andrea Brown, office manager, nKf

elisabeth Buggins, chair, transplant 2020 programme oversight group

lisa Burnapp, lead nurse living donation, nhs Blood and transplant

sandra cruikshank, living donor co-ordinator, lister hospital

sunil daga, Warwick University project, leeds teaching hospital

glyn davies mp, appKg member and past Vice chairman

Jon gulliver, lead commissioner, renal services, nhs england

Wayne lawley, head of corporate communications, nhs Blood and transplant

orin lewis, aclt project lead

fiona loud, Kidney care UK

dr shafi malik, south asian health action authority, leicester general hospital

david marshall, chairman, nKf

Jeremy mean, deputy director, health ethics, department of health england

Kirit modi, life Vice president, nKf

meena modi, nKf

madeleine moon mp, chair, all party parliamentary Kidney group.

dafni moschidou, policy officer – health ethics (blood, organ and tissue donation)

shashi shah, co-ordinator of spiritual healthcare, Vanik council UK

adnan sharif, consultant nephrologists, Birmingham

timothy statham, chief executive, nKf and secretariat of appKg

peter storey, Kidney research UK

richard Van roon, nKf – executive member

caroline Wroe – consultant nephrologists, south tees nhs trust


34

contact details

The All Party Parliamentary Kidney Group (APPKG)

secretariat timothy f statham oBe 11 harrison road, harlestone northampton, nn5 6UY

tel: 01604 454776 email: [email protected]

NKf (National Kidney federation) charity number 1106735

the point, coach road, shireoaks, Worksop, nottinghamshire, s81 8BW

tel: 01909 544999 email: [email protected]

an electronic version of this document may be viewed at www.kidney.org.uk

the nKf supplies the secretarial services and financial support necessary to run the appKg. the nKf receives financial sponsorship from renal industries including many of the pharmaceutical companies that produce transplant medication. the nKf is a patient charity that adopted the following policy:-

PHARMAcEUTIcAL cOMPANIES

the nKf (national Kidney federation) has a working relationship with many pharmaceutical companies and this works to great advantage. the nature of the support that an industry partner may give can vary, but essentially it usually comprises of an annual donation to assist with the costs of our core activity, office and staffing, plus assistance either practical or financial with a particular project that will assist kidney patients. the nKf always likes to establish a close working relationship with these industry partners and in particular likes to encourage the relationships to be long term.

it is of prime importance to the nKf that its commercial neutrality is scrupulously preserved so that the interests on one company over another are not advanced by the nKf, or the interests of an industry partner are not put before the interests of kidney patients or carers.

the independence of the nKf is one of its most important assets, and is one reason why government is prepared to listen to the nKf over and above commercial bodies. this independence will never be sacrificed in return for financial support.

first Published January 2018


a m a n i f e s t o t o i n c r e a s e t r a n s p l a n t a t i o n


martha donated a kidney through the

living kidney sharing scheme so that her

husband david could receive a live kidney.

mum helen shaw donated a kidney to her daughter holly shaw

mum, rachel Woodings donated a kidney to daughter sophia alexandra

meena donated a kidney to her husband Kirit.

swati Bhagat donated a live kidney to her mum, Kanchan Bhaga

saving more lives with more living kidney donors

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