TAKING ORGAN TRANSPLANTATION TO 2020 - Cardiff and Vale University Health Board Review of 2015/16 and Action Plan for 2016/17 - Cardiff and Vale UHB

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Contents

        Cardiff and Vale
     University Health Board

TAKING ORGAN TRANSPLANTATION
           TO 2020

       Review of 2015/16
              and
     Action Plan for 2016/17
CONTENTS

1.0    Executive summary

Section 1: Annual Report

2.0    Introduction and background

3.0    Our approach to ensuring excellent organ donation and transplantation services and
       care

4.0    Outcome 1

5.0    Outcome 2

6.0    Outcome 3

7.0    Outcome 4

Section 2: Action Plan and Priorities for 2016 / 17

8.0    Development of Cardiff and Vale Health University Board action plan for 2016/2017

9.0    Priorities for the coming year

10.0   Performance measures and management

11.0   Action plan for 2016/17

12.0   Actions required to deliver locally
1.0       Executive summary

The purpose of this document is to set out the annual organ donation plan for Cardiff and
Vale University Health Board (UHB) for 2016-17.

Our vision is to ensure that organ donation is part of usual end of life care and that every
eligible patient has the possibility explored. This will be underpinned by robust supporting
policies and a strict clinical governance framework surrounding this.

The Welsh Government wants Wales to be amongst the best performing countries in the
world of organ donation and transplantation. In 2013, NHS Blood and Transplant (NHSBT)
published ‘Taking Organ Transplantation to 2020’, a strategy to improve organ
transplantation rates. The Welsh Government’s plan ‘Taking Organ Transplantation to 2020 -
Wales Action Plan’ sets out the actions and outcomes up to 2020 to enable us to achieve
this.

On the 1st December 2015 Wales became the first UK country to introduce the soft opt-out
system for organ and tissue donation following the implementation of the Human
Transplantation Wales Act. The aim of the Act is to increase the number of organs and
tissues available for transplant. This will benefit the Welsh population by reducing the
number of people dying whilst waiting for a suitable organ to become available and
improving the lives of others. Cardiff and Vale UHB was well prepared for the launch date
with much media interest from regional and national sources which were coordinated by the
UHB Communications Team. Further actions taken to ensure a smooth implementation has
been the specific training that remains ongoing for clinical staff involved in organ donation
through new and existing teaching sessions.

In Wales only 35% of the population have signed onto the Organ Donor Register and since
the availability for opt-out; to date 157,133 have chosen this option. There has also been the
uptake of 32 appointed representatives. At the end of 2015 there were 211 Welsh residents
on the transplant waiting list and the UK figure stands at just over 6500. This is an
improvement to the 7600 people listed at the end of 2012.

In 2015/2016 Wales had 64 deceased donors which is a rise from the previous 3 year
average of 55. Even though in 2015/2016 Wales only accounted for 5% of the UK deceased
donors, Cardiff and Vale UHB was responsible for 34% of those cases which highlights the
importance of delivering and supporting the UK Organ Donation Taskforce
recommendations.

Cardiff and Vale UHB has achieved progress within 2015-2016:

         Increased Specialist Nurse for Organ Donation attendance.
         Effective screening of marginal donors.
         Increased referral rates from ED and ITU.
         Effective implementation of deemed consent approaches.
         Good collaborative working.
         Increased consent rate.
Cardiff and Vale UHB’s organ donation priorities are:

      Increase engagement with Paediatric Intensive Care and consider the
       development of a Clinical Lead for Organ Donation for Paediatrics.
      Instigation of extending the potential donor audit to neonatal services.
      Continued legislation awareness – supporting and teaching clinical staff.
      Improve organ donation consent rates across the University Health Board.
      Strive towards 100% referral rate in all departments, to eliminate risk of missed
       potential.
      Further develop relationships with key stakeholders e.g. Critical Care,
       Theatres, Emergency Unit, Transplant Unit, Mortuary.
Section 1: Annual Report

2.0       Introduction and background

In 2013 NHS Blood and Transplant (NHSBT) published ‘Taking Organ Transplantation to
2020’, a strategy to improve organ transplantation rates.

The Wales Action Plan, published in January 2014, sets out what needs to happen in Wales
to deliver this strategy. We need simultaneously over the next few years to drive continuous
improvement on all aspects of organ donation and transplantation and this plan seeks to do
just that. It sets out actions right across the pathway, from ensuring that everybody has the
opportunity to make their decision known, whatever that may be, to ensuring that those who
receive transplants have the appropriate after-care and follow-up. The Wales Action Plan
commits Health Boards to deliver certain outcomes by 2020.

The Welsh Transplant Advisory Group has identified all Wales Organ Donation and
Transplantation Priorities for 2016-17 which are also considered part of the delivery plan.
This focus on a small number of priorities will give a clear sense of direction over the next 12
months. Health Boards are expected to work together to ensure that these priorities are
delivered.

1 December 2015, saw the enactment of the Human Transplantation Wales Act 2013. All
other UK health departments are waiting to see what impact the change to a soft opt out
consent system in Wales will have.

The new system has made it easier for people in Wales who want to donate to become
organ donors, whilst enabling those who do not to be able to formally register their decision
on the NHS organ donor register.

The aim of the Act is to increase the number of organs and tissues available for transplant.
This will benefit the people of Wales by reducing the number of people dying whilst waiting
for a suitable organ to become available and improving the lives of others. Cardiff and Vale
University Health Board, in line with other Health Boards in Wales, has a significant role to
play in ensuring all patients who could potentially be organ donors are managed within the
new legislative framework.

3.0       Our approach to ensuring excellent organ donation and transplantation
          services and care

In 2015-2016, we published our Organ Donation Action Plan. The Plan is designed to enable
us to deliver on our responsibility to save and improve lives through organ donation and
transplantation. It sets out:

         Delivery aspirations we expect
         Specific priorities for 2015-2016
         Responsibility to develop and delivery actions
         NHS assurance measures

Our vision for organ donation is that by 2020, donation and transplantation rates in Wales
shall be comparable with the best performing countries in the world.

Our priorities for organ donation and transplantation for the last 12 months were:
   Increase engagement with Paediatric Intensive Care
      Implementation of the legislation; supporting and teaching clinical staff
      Improve consent rates across the University Health Board
      Strive towards 100% referral rate in all departments; to eliminate any risk of missed
       potential
      Continue to maintain and build further relationships with key stakeholders; Critical
       Care, Theatres, Emergency Unit, Transplant Unit, Mortuary.

We are measuring our progress against the following measures:

      Increasing the number of potential donors
      Improving donor conversion rates
      Making the most of donor organs
      Increasing retrieval and transplantation of organs
      Resuscitation of retrieved organs
      Improving survival of transplant patients
      Systems to support organ donation and transplantation

This annual report provides a baseline to where Cardiff and Vale UHB is; sets out the
progress we have made against each of our priorities and sets out a baseline for future
years against which progress can be monitored.
4.0       Outcome 1: Action by society and individuals will mean that the UK´s organ
          donation record is amongst the best in the world and people donate when and
          if they can.

Progress against this measure is measured by the following measures:
     Measure 1: Consent rate for organ donation when patient ODR1 status unknown (%)

     80                                                                  Cardiff
     70                                                                  And Vale
                                                                         DCD
     60
                                                                         Cardiff
     50                                                                  And Vale
     40                                                                  DBD
     30                                                                  UK Target
     20                                                                  DCD
     10
                                                                         UK Target
      0                                                                  DBD
           2010/11 2011/12 2012/13 2013/14 2014/15 2015/16

100                                                                    Cardiff And
 90                                                                    Vale
 80
                                                                       Wales
 70
 60
 50                                                                    England
 40
 30
                                                                       Scotland
 20
 10
  0                                                                    Northern
          2010/11 2011/12 2012/13 2013/14 2014/15 2015/16              Ireland

1
    Organ donation register
     Measure 2: Consent rate for organ donation when patient ODR status known (%)

100                                                                                 Cardiff
                                                                                    And Vale
    80                                                                              DCD
                                                                                    Cardiff
    60                                                                              And Vale
                                                                                    DBD
    40                                                                              UK
                                                                                    Target
    20                                                                              DCD
                                                                                    UK
     0                                                                              Target
          2010/11 2011/12 2012/13 2013/14 2014/15 2015/16                           DBD

    100
                                                                      Cardiff And
     90
                                                                      Vale
     80
     70                                                               Wales
     60
     50                                                               England
     40
     30                                                               Scotland
     20
     10                                                               Northern
      0                                                               Ireland
          2010/11 2011/12 2012/13 2013/14 2014/15 2015/16

Overall the consent rate has increased in Cardiff and Vale UHB, however an important
factor to note is the rise within the ODR unknown category. Such findings may be a result of
the legislation implementation as it has either prompted discussion within families or
consent has been obtained utilising the deemed approach method. There is still a disparity
in the unknown status between DCD and DBD as the DCD process holds much more
uncertainty of proceeding which may impact upon family decision making. A further aspect
to note is the evident ODR overrides when consent has not been given within the known
status. This is a nationwide issue and the UK has one of the highest family refusal rates.
NHSBT believe that a further 9% of donors could become available if such a block was
disallowed.
   Measure 3: Deemed consent rate for organ donation when patient had not expressed a
    decision and deemed consent could be applied

 1 December 2015 - 31 March 2016

                                                                                               Adjusted
                                                                                               consent rate
 Board                                                     Approaches        Consents          (%)
 Abertawe Bro Morgannwg University Health Board                          1                 1             100
 Aneurin Bevan Health Board                                              1                 0                  0
 Betsi Cadwaladr University Health Board                                 2                 1              50
 Cardiff And Vale Health Board                                           6                 4            66.7
 Cwm Taf Health Board                                                    2                 2             100
 Hywel Dda Health Board                                                  1                 1             100
 Wales                                                                 13                  9            69.2

 *Please interpret these rates with caution due to calculations being based on small numbers
 Source: NHSBT

Following the deemed approach it is clear that Cardiff and Vale UHB have had two episodes
where consent was not obtained and due to the soft method the family have a choice to
express their opinions surrounding the possibility of donation. However, prior to the
approach it is of high importance that the framework for deemed consent is followed to
ensure full eligibility in terms of Welsh residency, mental capacity, age and no expressed or
recorded decision.

   Measure 4: Rate where family override the known decision/ deemed consent of the
    patient

1 December 2015 - 31 March 2016

                                                                             Family
                                                                             support not       Rate of
Board                                                      Approaches        given             overrides (%)
Abertawe Bro Morgannwg University Health Board                           3                 0                  0
Aneurin Bevan Health Board                                               1                 1             100
Betsi Cadwaladr University Health Board                                  3                 2            66.7
Cardiff And Vale Health Board                                            8                 2              25
Cwm Taf Health Board                                                     2                 0                  0
Hywel Dda Health Board                                                   1                 0                  0
WALES                                                                  18                  5            27.8

*Please interpret these rates with caution due to calculations being based on small numbers
Source: NHSBT
     Measure 5: Approach Rates (%)

100
                                                                                 Cardiff
    80                                                                           And Vale
                                                                                 DCD
                                                                                 Cardiff
    60
                                                                                 And Vale
                                                                                 DBD
    40                                                                           UK Target
                                                                                 DCD
    20
                                                                                 UK Target
     0                                                                           DBD
         2010/11 2011/12 2012/13 2013/14 2014/15 2015/16

100
                                                                         Cardiff
 90
                                                                         And Vale
 80
                                                                         England
 70
 60                                                                      Wales
 50
 40                                                                      Northern
 30                                                                      Ireland
 20                                                                      Scotland
 10
  0                                                                      UK Target
         2010/11 2011/12 2012/13 2013/14 2014/15 2015/16

Following the implementation of a more robust DCD screening tool in December 2015 it has
provided a detailed approach when assessing marginal donors. This has allowed for a
clearer identification of potential donors which can be effective both financially and
emotionally for families in assisting in the prevention of poor management at end of life care.
A key success to note is that the Cardiff and Vale UHB DBD approach has exceeded the UK
target.
5.0       Outcome 2: Action by NHS hospitals and staff will mean that the NHS routinely
          provides excellent care in support of organ donation and every effort is made
          to ensure that each donor can give as many organs as possible.

Progress against this measure is measured by the following measures:

         Measure 6 : Number of deceased organ donors (per million population)

 35
 30
 25                                                                                   Cardiff &
                                                                                      Vale
 20
 15
 10                                                                                   Wales

      5
      0
           2010/11    2011/12     2012/13     2013/14     2014/15    2015/16

 35                                                                       Cardiff &
 30                                                                       Vale
 25                                                                       Wales

 20
                                                                          England
 15
 10                                                                       Scotland
  5
                                                                          Northern
  0
                                                                          Ireland
          2010/11 2011/12 2012/13 2013/14 2014/15 2015/16

Despite the significant drop in deceased organ donors per million population, this is not
reflected within the proceeding donors from the Cardiff and Vale UHB. In 2013/2014 there
were 15 donors and 2015/2016 has noted an increase to 22. Therefore the 32% rise does
not match the reduction as illustrated above.
   Measure 7: Number of living organ donors (per million population)

25

20                                                                       Cardiff &
                                                                         Vale
15

10
                                                                         Wales
 5

 0
     2010/11 2011/12 2012/13 2013/14 2014/15 2015/16

40                                                                   Cardiff &
35                                                                   Vale
30                                                                   Wales
25
                                                                     England
20
15
                                                                     Scotland
10
 5                                                                   Northern
 0                                                                   Ireland
     2010/11 2011/12 2012/13 2013/14 2014/15 2015/16
      Measure 8: Percentage referral rate (%)

 120
                                                                             Cardiff
 100                                                                         And Vale
                                                                             DCD
   80                                                                        Cardiff
                                                                             And Vale
   60                                                                        DBD
                                                                             UK Target
   40                                                                        DCD

   20                                                                        UK Target
                                                                             DBD
      0
           2010/11 2011/12 2012/13 2013/14 2014/15 2015/16

100                                                                      Cardiff And
 90                                                                      Vale
 80                                                                      Wales
 70
 60                                                                      England
 50
 40                                                                      Scotland
 30
                                                                         Northern
 20
                                                                         Ireland
 10                                                                      UK Target
  0
          2010/11 2011/12 2012/13 2013/14 2014/15 2015/16

Over the last 3-4 years there has been an increased effort to engage with all units that have
potential organ donors and this has proved successful as the Cardiff and Vale UHB referral
rate has succeeded the UK target. Key elements that may account for an improved rate is
the early identification that allows for better planning, increased SNOD presence with
changed working hours, teaching, simulation and handover attendance. A further positive
has been the robust screening tool as decision making can be more effective and efficient on
assessment. Thus providing clear management to clinicians in a timely manner which can
promote positivity surrounding referrals of those marginal patients
6.0       Outcome 3: Action by NHS hospitals and staff will mean that more organs are
          usable and surgeons are better supported to transplant organs safely into the
          most appropriate recipient.

Progress against this measure is measured by the following measures:
         Measure 9a: Deceased organ utilisation from donors after brain death (DBD) donors
          transplanted (per million population)

Cardiff and Vale

                   2010/11     2011/12     2012/13     2013/14     2014/15     2015/16
 Renal                 30.18        6.41       25.42       29.45       16.71          18.67
 Liver/bowel            8.33        2.08        8.33       10.52        8.35           6.22
 Cardio                 4.17        4.17        8.33        0.00        2.09           8.30
 Organs                41.67       12.50       41.67       39.97       27.15          35.27
 Cornea                 4.17        4.17        8.33       10.52        0.00           6.22

   45
                                                                             Renal
   40
   35                                                                        Liver/bowe
   30                                                                        l
   25                                                                        Cardio
   20
   15                                                                        Organs
   10
                                                                             Cornea
    5
    0
          2010/11 2011/12 2012/13 2013/14 2014/15 2015/16
Renal
Financial year     2010/11     2011/12     2012/13     2013/14     2014/15     2015/16
Cardiff & Vale         30.18        6.41       25.42       29.45       16.71       18.67
Wales                  29.29       23.93       25.13       22.77       24.98       23.61
England                19.12       19.64       21.05       23.48       22.07       22.79
Scotland               20.02       20.49       20.19       24.65       23.65       19.64
Northern Ireland       42.48       34.46       28.73       34.55       38.26       32.60

Liver/bowel
Financial year     2010/11     2011/12     2012/13     2013/14     2014/15     2015/16
Cardiff & Vale          8.33        2.08        8.33       10.52        8.35        6.22
Wales                  13.64       10.39       10.71       11.06       11.68        8.41
England                 7.63        8.32        8.97       10.64        9.78        9.00
Scotland                8.26        9.38        8.44       10.73        9.95        8.60
Northern Ireland       20.22       15.85       10.93       15.35       12.02       13.04

Cardio
Financial year     2010/11     2011/12     2012/13     2013/14     2014/15     2015/16
Cardiff & Vale          4.17        4.17        8.33        0.00        2.09        8.30
Wales                   4.22        8.77        7.47        5.86        3.57        7.76
England                 5.64        6.63        6.76        7.76        7.05        7.11
Scotland                6.38        5.25        6.75        9.97        7.13        6.73
Northern Ireland       21.31       12.57       12.57       22.48        8.20       11.95

Organs
Financial year     2010/11     2011/12     2012/13     2013/14     2014/15     2015/16
Cardiff & Vale         41.67       12.50       41.67       39.97       27.15       35.27
Wales                  47.08       42.53       43.83       40.66       40.88       42.69
England                31.97       34.31       36.65       42.21       38.78       40.10
Scotland               34.15       34.90       35.65       44.79       39.04       35.53
Northern Ireland       83.61       63.39       51.37       73.48       56.29       60.31

Cornea
Financial year     2010/11     2011/12     2012/13     2013/14     2014/15     2015/16
Cardiff & Vale          4.17        4.17        8.33       10.52        0.00        6.22
Wales                   5.84        6.82        6.17        6.83        3.24        3.56
England                 3.94        4.57        4.81        4.51        4.46        3.96
Scotland                4.32        3.38        4.69        6.59        3.75        3.55
Northern Ireland       10.38        8.20        3.28        8.23        6.01        1.63

Source: NHSBT
     Measure 9b: Deceased organ utilisation from donors after circulatory death (DCD)
         donors transplanted (per million population)

Cardiff and Vale

                   2010/11     2011/12      2012/13     2013/14     2014/15     2015/16
 Renal                 20.83       41.67         8.33       25.25       25.06        4.15
 Liver/bowel            2.08        4.17         2.08        6.31        8.35        0.00
 Cardio                 0.00        4.17         0.00        8.42        0.00        0.00
 Organs                22.92       50.00        10.42       39.97       33.41        4.15
 Cornea                12.94       10.69         4.24        8.42        6.26        0.00

  60
                                                                                          Renal
  50

  40                                                                                      Liver/bowel

  30                                                                                      Cardio
  20
                                                                                          Organs
  10
                                                                                          Cornea
    0
          2010/11     2011/12     2012/13     2013/14     2014/15    2015/16
Renal
  Financial year    2010/11     2011/12     2012/13     2013/14     2014/15     2015/16
Cardiff & Vale          20.83       41.67        8.33       25.25       25.06        4.15
Wales                   15.91       22.40       11.69       12.69       18.17       18.43
England                  9.93       11.27       13.22       14.30       13.33       15.04
Scotland                 6.00        9.01       11.26       15.62       12.20       14.77
Northern Ireland         2.73        3.28        9.29       17.00       14.21       17.39

Liver/bowel
   Financial year   2010/11     2011/12     2012/13     2013/14     2014/15     2015/16
Cardiff & Vale           2.08        4.17        2.08        6.31        8.35        0.00
Wales                    2.27        2.92        2.27        2.60        4.87        3.88
England                  1.58        1.95        2.13        2.43        2.64        3.15
Scotland                 1.13        1.88        1.88        2.07        2.44        3.74
Northern Ireland         0.55        1.09        1.09        1.65        1.64        1.09

Cardio
  Financial year    2010/11     2011/12     2012/13     2013/14     2014/15     2015/16
Cardiff & Vale           0.00        4.17        0.00        8.42        0.00        0.00
Wales                    1.30        1.30        1.30        1.30        1.30        1.29
England                  0.71        0.52        0.85        1.07        1.24        1.34
Scotland                 0.00        0.75        1.13        0.75        0.75        0.75
Northern Ireland         1.09        1.09        1.64        0.55        0.00        3.26

Organs
  Financial year    2010/11     2011/12     2012/13     2013/14     2014/15     2015/16
Cardiff & Vale          22.92       50.00       10.42       39.97       33.41        4.15
Wales                   19.48       26.62       15.26       16.59       24.33       23.61
England                 12.22       13.74       16.21       17.80       17.21       19.59
Scotland                 7.13       11.63       14.26       18.44       15.39       19.82
Northern Ireland         4.37        5.46       12.02       19.19       15.85       21.73

Cornea
  Financial year    2010/11     2011/12     2012/13     2013/14     2014/15     2015/16
Cardiff & Vale        12.94       10.69       4.24        8.42        6.26        0.00
Wales                 6.58        6.89        4.57        3.58        5.19        5.82
England               3.03        2.83        3.60        3.78        3.27        3.22
Scotland              1.73        3.45        3.24        4.33        3.38        3.18
Northern Ireland      0.00        2.22        1.11        5.48        1.09        3.26

Source: NHSBT
     Measure 10: Patients transplanted by organ - including both living and deceased
         donors (per million population)

Cardiff and Vale

                   2010/11   2011/12    2012/13    2013/14     2014/15      2015/16
 Renal               51.7      59.8       63.5        42.1        45.9          47.7
 Liver/bowel         10.8       8.6        6.4        12.6         6.3          12.4
 Cardio               4.3       8.6        2.1         8.4         6.3          10.4
 Organs              66.8      76.9       72.0        63.1        58.5          70.5
 Cornea              51.7      36.3       40.2        31.6        23.0          22.8

 110
                                                                   Renal
 100
  90
  80                                                               Liver/bowe
  70                                                               l
  60                                                               Cardio
  50
  40                                                               Organs
  30
  20
                                                                   Cornea
  10
   0
         2010/11 2011/12 2012/13 2013/14 2014/15 2015/16

The number of transplants has remained fairly stagnant over the last 6 years however there
has been a notable decline in cornea. Therefore it is of high importance to promote the
significance of tissue donation and ensure that clinical areas have contact details of the
National Referral Centre that now coordinates tissue services and retrieval.
Renal
 Financial year    2010/11   2011/12   2012/13   2013/14   2014/15   2015/16
Cardiff & Vale      51.7      59.8      63.5      42.1      45.9      47.7
Wales               53.0      62.0      55.8      52.7      41.2      46.2
England             43.7      44.2      47.8      50.8      49.0      49.8
Scotland            36.4      42.7      45.0      52.5      46.7      54.0
Northern Ireland    43.0      47.8      47.5      58.1      55.7      64.7
United Kingdom      43.8      45.6      48.1      51.4      48.8      50.6

Liver/bowel
  Financial year   2010/11   2011/12   2012/13   2013/14   2014/15   2015/16
Cardiff & Vale      10.8       8.6       6.4      12.6       6.3      12.4
Wales                8.2       9.5       9.1       9.4      10.1      14.6
England             10.5      11.4      12.3      14.0      13.1      13.2
Scotland            17.1      19.3      17.5      19.6      19.7      19.8
Northern Ireland    12.9      16.1      12.2      10.4      14.2      18.5
United Kingdom      11.1      12.2      12.6      14.2      13.6      14.0

Cardio
 Financial year    2010/11   2011/12   2012/13   2013/14   2014/15   2015/16
Cardiff & Vale       4.3       8.6       2.1       8.4       6.3      10.4
Wales                5.3       7.5       3.9       5.9       5.2       8.4
England              4.7       5.0       5.1       6.4       5.8       6.0
Scotland             4.4       4.0       6.1       7.7       4.5       3.6
Northern Ireland     5.0       3.9       8.3       4.4       3.8       5.4
United Kingdom       4.7       5.0       5.2       6.5       5.7       5.9

Organs
 Financial year    2010/11   2011/12   2012/13   2013/14   2014/15   2015/16
Cardiff & Vale      66.8      76.9      72.0      63.1      58.5      70.5
Wales               66.5      79.0      68.9      68.0      56.4      69.2
England             58.9      60.6      65.1      71.2      67.9      69.0
Scotland            58.0      66.1      68.6      79.8      70.9      77.4
Northern Ireland    60.9      67.8      68.0      72.9      73.8      88.6
United Kingdom      59.5      62.9      65.9      72.1      68.0      70.5

Cornea
 Financial year    2010/11   2011/12   2012/13   2013/14   2014/15   2015/16
Cardiff & Vale      51.7      36.3      40.2      31.6      23.0      22.8
Wales               51.3      32.1      45.4      42.0      42.2      44.3
England             58.8      61.2      60.4      59.9      57.6      60.6
Scotland            45.1      37.7      46.5      48.7      47.1      47.7
Northern Ireland    53.1      47.8      37.6      39.5      34.4      34.8
United Kingdom      58.3      58.4      58.2      57.8      55.6      58.5
     Measure 11: Number of deaths on the organ transplant list (per million population)

 20
 18
                                                                         Ca rdi ff
 16
                                                                         & Va l e
 14
 12
 10
  8                                                                      Wa l es
  6
  4
  2
  0
       2010/11 2011/12 2012/13 2013/14 2014/15 2015/16

 Financial year                 2010/11      2011/12     2012/13      2013/14        2014/15     2015/16
 Cardiff & Vale                     17.25        10.69         0.00         2.10          8.35        4.15
 Wales                              16.12        13.11         9.47         6.83          3.89        7.76
 England                              9.37        9.42         8.72         9.22          7.00        7.40
 Scotland                             8.66       11.87         8.38         7.34          6.76        5.80
 Northern Ireland                     9.50        8.34         8.84         6.58          8.74        4.89

There has been a decline in the number of deaths on the transplant list in the last year which
is positive. It potentially indicates that those waiting are receiving transplants or that their
clinical management is of a less severity and the urgency of a transplant allows a time
extension for better quality/matching organs.
7.0       Outcome 4: Action by NHSBT and Commissioners means that better support
          systems and processes will be in place to enable more donations and
          transplant operations to happen.

We have worked hard over the past 12 months to ensure that we have good support
systems and processes in place to support an increasing level of donation and transplant
activity.
Progress against this measure is measured by the following measures:
         Measure 12:   Transplant survival: by organ and by transplant centre.

One and five year adult kidney-only patient survival using kidneys from deceased
donors 1 April 2007 - 31 March 2015
One and five year patient survival for first SPK transplant recipients
1 April 2007- 31 March 2015

One and five year graft survival for first SPK transplant recipients
1 April 2007 – 31 March 2015
   Measure 13:   Transplant waiting time by organ and by transplant centre.

Median waiting time to kidney only transplant in the UK, for patients registered 1 April
2010 - 31 March 2013

Median waiting time to Pancreas only transplant in the UK, for patients registered 1
April 2010 - 31 March 2013
Over the past 12 months we have:

      Maintained the outcomes for our kidney and pancreas transplant recipients at or
       above the national UK figures.
      Patients listed for a kidney transplant in Cardiff wait a significantly shorter time to
       transplant than the UK average.
      Patients listed for a pancreas transplant in Cardiff wait a significantly shorter time to
       transplant than those from any other transplant unit in the UK.
      Noted that the implementation of a revised DCD screening tool can provide greater
       accuracy when assessing marginal donors.
      Appointed 5 scrub nurses to our NORS team so now fully established at retrievals.
      Begun the process of Peer review for Transplantation.
Section Two - Action Plan and Priorities for 2016 / 17

Health Boards are required, together with their partners, to produce and publish a detailed
local service delivery plan to identify, monitor and evaluate action needed within timescales.
The Health Board executive ‘lead’ responsible role for organ donation report progress
formally to their Boards against milestones in these delivery plans and publish these reports
on their websites annually.

Having reviewed our progress against our action plan produced in 2015, we have updated
our action plan to ensure that it will allow us to respond to the challenges identified by our
review and to ensure that we are in a position to meet the requirements of the NHS Blood
and Transplant (NHSBT) strategy: ‘Taking Organ Transplantation to 2020’, the Wales Action
Plan (2014) and the all Wales Organ Donation and Transplantation Priorities 2016-17.

8.0       Development of Cardiff and Vale University Health Board action plan for
             2016/2017

Cardiff and Vale UHB is one of the largest NHS organisations in the UK.

         The population of Cardiff and Vale is growing rapidly in size, projected to increase by
          10% between 2015-25, significantly higher than the average growth across Wales
          and the rest of the UK. An extra 50,000 people will live in Cardiff and Vale and
          require access to health and wellbeing services.

         The Cardiff and Vale population is relatively young compared with the rest of Wales,
          with the proportion of infants (0-4 yrs) and the traditional working age population (17-
          64) higher than the Wales average; however, the number of over 85s is increasing at
          a much faster rate than the rest of the population (32.4% increase between 2015-25).

         The population is ethnically very diverse, particularly compared with much of the rest
          of Wales, with a wide range of cultural backgrounds and languages spoken. Arabic,
          Polish, Chinese and Bengali are the four most common languages spoken after
          English and Welsh. Cardiff is an initial accommodation and dispersal centre for
          asylum seekers.

The Cardiff and Vale health community has a diversity of inequalities that may impact on
quality of organs for donation due to premorbid conditions but also the number of people on
the transplant waiting list.

Risk factors for disease

         Unhealthy behaviours which increase the risk of disease are endemic among adults
          in Cardiff and Vale:
              1. Nearly half (44-45%) drink above alcohol guidelines.
              2. Nearly two thirds (66-67%) don’t eat sufficient fruit and vegetables.
              3. Over half (55-57%) are overweight or obese, this increases to two thirds
                 (64%) among 45-64 year olds.
              4. Around three quarters (72-75%) don’t get enough physical activity.
              5. Just over one in five (22%) smoke.

         Many children in Cardiff and Vale are also developing unhealthy behaviours:
1. Two thirds (66%) of under 16s don’t get enough physical activity.
           2. Nearly a third (31%) of under 16s are overweight or obese.

       Around 1 in 10 adults are recorded as having high blood pressure in Cardiff and
        Vale.

Equity, inequalities and wider determinants of health

       There are stark inequalities in health outcomes in Cardiff and Vale:
           1. Life expectancy for men is nearly 12 years lower in the most-deprived areas
               compared with those in the least-deprived areas.
           2. The number of years of healthy life varies even more, with a gap of 22 years
               between the most- and least-deprived areas.
           3. Premature death rates are nearly three times higher among the most-
               deprived areas compared with the least deprived.

       There are also significant inequalities in the ‘wider determinants’ of health, such as
        housing, household income and education:
           1. For example, the percentage of people living without central heating varies by
               area in Cardiff and Vale from one in a hundred (1%) to one in ten (13%).

       There are inequalities in how and when people access healthcare.

Ill health in Cardiff and Vale
       The disease profile in Cardiff and Vale is changing:
              1. The number of people with two or more long term conditions in Cardiff and
                 Vale has increased by around 5,000 in the last decade, and this trend is set
                 to continue;
              2. Around 1 in 7 (15%) people consider their day-to-day activities are limited by
                 a long-term health problem or disability;
              3. Many people with long term conditions are not diagnosed and do not appear
                 on official registers; and
              4. Due to changes in the age profile of the population and risk factors for
                 disease, new diagnoses for conditions such as diabetes and dementia are
                 increasing significantly.

       Around 1 in 5 adults have visited their GP within a 2 week period; and nearly three
        quarters visit a pharmacy over a year period.

       Rates of delayed transfer of care for social care reasons are nearly twice as high in
        Cardiff and Vale than the Wales average.

       Heart disease, lung cancer and cerebrovascular disease are the leading causes of
        death in men and women.

       Preventable illness and deaths:
           1. Many (but not all) of the most common long term conditions and causes of
              death may be avoided by making changes in health-related behaviours.

Cardiff and Vale UHB fully supports organ donation and have an Organ Donation Committee
(ODC) that has a variety of representatives. These include the Chair of the Board, Medical
Director, and representatives from Critical Care, Emergency Department, Theatres,
Transplantation, Bereavement, Communications, Spiritual, Ethics, Pathology, Mortuary and
Finance.

There is a Clinical Lead for Organ Donation (CLOD) based in the Emergency Department
and in Critical Care where the position is to be taken by the regional CLOD. There are also 2
NHSBT Specialist Nurses in Organ Donation (SNOD) and a further 2 newly appointed to
commence in September. In addition to the workforce a further SNOD will attend for a week
each month as an extension to an educator role. The SNOD’s work within the UHB’s critical
care areas and are part of the multi disciplinary team to allow collaboration between the two
organisations. The relationship between SNOD’s, CLOD’s, ODC and Health Board is pivotal
to the success of organ and tissue donation within Cardiff and Vale.

Cardiff and Vale UHB has the highest donation rates in the region covered by NHSBT South
Wales Organ Donation Services Team. It also has the only transplant centre in Wales and
has the following transplantation rates, 47.7 per million population (UK 50.6 PMP).

In order to meet the requirement of referral demand the SNOD team have been trialling an
extended work pattern to ensure availability for collaborative approaches and legislative
awareness. However, this has been difficult to manage at times as our staffing has been
depleted at times therefore we endeavour to fully implement when at a full quota.

The Emergency Department has completed its remodel to provide a more efficient service.
This has resulted in an increase in the number of resuscitation beds, which will allow
identification and assessment of potential organ donors with less pressure on the UHB.

Noah‘s Ark Children‘s Hospital for Wales is now fully operational with an increased capacity
for critically ill children on Paediatric Intensive Care.

Critical care and surgery have a well established 6 bedded Post Anaesthetic Care Unit
(PACU). There is often a discrepancy between the supply and demand for critical care beds;
on previous occasions a potential organ donor could not be facilitated due to capacity within
the intensive care unit. The introduction of PACU will reduce this pressure by allowing more
appropriate use of the critical care beds.

The National Organ Retrieval Service (NORS) has a newly appointed Cardiff scrub team
consisting of 3 fully trained staff and a further 2 that have recently commenced the training
post. Such an extension to the service will enhance the activation of the retrieval team and
benefit the donation process in terms of time management and minimal delays.

Cardiff and Vale UHB are part of a two year research project by Bangor University. The
study aim is to examine family attitudes, actions, decisions and experiences following the
implementation of deemed consent and the Welsh Human Transplantation Act. Families
have the option to participate following an approach in conjunction with SNOD perspectives
to contextualise consenting and non-consenting donor family views, experiences and
decision making.

Following the implementation of the changed legislation the BBC have been filming various
aspects of organ donation for a series called ‘ The Greatest Gift’ to be aired in December
2016 to mark a year of deemed consent. The documentary follows the SNOD and transplant
team in varying aspects of their role alongside a number of patient stories.
9.0       Priorities for the coming year

The Taking Organ Transplantation to 2020 – Wales Action Plan sets out action to improve
outcomes between now and 2020. The all Wales Organ Donation and Transplantation
Priorities 2016-17 presents the national priorities that the Wales Transplantation Advisory
Group will be focusing upon over the next 12 months. In addition to these national priorities,
we have also identified priorities for 2016-17 which reflects our local challenges.

         Increase engagement with Paediatric Intensive Care and a job description for a
          CLOD has been submitted to the Chair of the Health Board.
         Instigation of extending the potential donor audit to neonatal services to assist with
          the identification.
         Continued legislation awareness – supporting and teaching clinical staff.
         Improve consent rates across the University Health Board.
         Strive towards 100% referral rate in all departments, to eliminate any risk of missed
          potential.
         Continue to maintain and build further relationships with key stakeholders e.g. Critical
          Care, Theatres, Emergency Unit, Transplant Unit, Mortuary.

10.0      Performance Measures and Management

The Welsh Transplant Advisory Group has agreed on a small number of outcome indicators
and performance measures that will be used to measure success:

      •   Increasing the number of potential adult, paediatric and neonatal donors
      •   Improving donor conversion rates
      •   Making the most of donor organs
      •   Increasing retrieval and transplantation of organs
      •   Resuscitation of retrieved organs
      •   Improving survival of transplant patients
      •   Systems to support organ donation and transplantation
11.0   Action Plan for 2016/17

       Taking Organ                Taking Organ Transplantation to           Taking Organ Transplantation to                Lead                Date
   Transplantation to 2020               2020 Wales Action                         2020 Wales Action

          UK Action                           Wales Action                   Cardiff and Vale University Health
                                                                                       Board Action

Outcome 1 – Society and Individuals

Develop national strategies to        Implement NICE and good                Continued education and support         Cardiff and Vale      March 2017
promote a shift in behaviour           practice guidelines on family           of clinical staff regarding NICE         CLOD’s
and increase consent and test          approach.                               guidelines and legislation change.
progress with regular public                                                                                           Cardiff and Vale
surveys.                              Improve communication skills           Ongoing simulation training,             SNOD’s
                                       of health professionals to talk         internal practice sessions and
                                       to patients and their families.         advanced communication courses          Organ Donation
                                                                               made available to health                 Committee
                                      Support families to respect the         professionals.
                                       decision of their loved ones.
                                                                              Continue progress in collaborative
                                      Amend NHSBBT educational                requesting to ensure families can
                                       pack for use in Welsh schools.          make informed choices regarding
                                                                               the wishes of their loved one.

                                                                              Engage with community services to
                                                                               promote organ donation and
                                                                               legislative change.

All Governments should                Publish an annual report on           Continue to collect and analyse          Cardiff and Vale      March 2017
provide regular reports to             progress improving organ               Cardiff and Vale UHB potential            CLOD’s
Parliament/Assembly on                                                                                                                     Annual   report
Taking Organ                 Taking Organ Transplantation to            Taking Organ Transplantation to                 Lead                Date
   Transplantation to 2020                2020 Wales Action                          2020 Wales Action

          UK Action                            Wales Action                    Cardiff and Vale University Health
                                                                                         Board Action

progress in their nation and            donation and transplantation.           donor audit.                              Cardiff and Vale   July 2017
Health Ministers should have a                                                                                             SNOD’s
duty to promote organ donation         Report performance against             Publish Cardiff and Vale UHB
and transplantation, effectively        specific organ donation and             annual report inclusive of delivery       Organ Donation
leading to a significant                transplant indicators to the All        plan against specific organ                Committee
improvement in public attitudes         Wales Donation and                      donation and transplant indicators.
and consent for organ donation.         Transplantation Advisory
                                        Group at least annually.

Ensure that the introduction of        Ensure all patients who could          Continue legislation training within      Cardiff and Vale      March 2017
a system of deemed consent to           donate organs/tissue for                education sessions for all clinical        CLOD’s
organ and tissue donation in            transplant are operationally            staff involved in organ donation.
Wales as described by the               managed within the new                                                            Cardiff and Vale
Human Transplantation (Wales)           system                                 Provide support to all queries within      SNOD’s
Bill is as successful as possible                                               the hospital regarding legislative
                                                                                change.                                   Organ Donation
and learn from this experience.
                                                                                                                           Committee
                                                                               Finalise updated policy on organ
                                                                                donation in line with the new
                                                                                legislation.

                                                                               Provision of learning materials in
                                                                                the form of leaflets and information
                                                                                booklets issued by the Welsh
                                                                                Government.
Taking Organ               Taking Organ Transplantation to               Taking Organ Transplantation to                 Lead                    Date
   Transplantation to 2020              2020 Wales Action                             2020 Wales Action

          UK Action                          Wales Action                   Cardiff and Vale University Health
                                                                                      Board Action

Develop a community volunteer        Explore opportunities to                  Offer advice and support to these         Cardiff and Vale          March 2017
scheme to support Trust/Health        develop community volunteer                groups as required.                        CLOD’s
Board donation committees to          schemes.
promote the benefits of                                                          Extend invitation of Organ               Cardiff and Vale
donation in local communities,       Work with the Third Sector to              Donation Committee membership              SNOD’s
particularly amongst groups           ensure effective signposting to            to relevant parties.
                                      sources of information and                                                           Organ Donation
with little tradition of organ
                                      support.                                   Work alongside patient experience         Committee
donation.
                                                                                 team within the hospital to identify
                                                                                 possible third sector involvement.        Cardiff and Vale
                                                                                                                            Executive Board

Outcome 2 – NHS (Donation)

Families of potential donors will  NHS in Wales to work with                     Ongoing simulation training,            Cardiff and Vale           March
only    be    approached      by    professional bodies and NHS                   internal practice sessions and            CLOD’s                      2017
someone       who      is   both    Blood and Transplant to ensure                advanced communication courses
specifically     trained     and    training and accreditation                    made available to health                 Cardiff and Vale
competent in the role, training     packages are adopted and                      professionals.                            SNOD’s
packages and accreditation will     families of potential donors will
                                                                                  Continue progress in                    Organ Donation
be provided to those who wish       only be approached by
                                                                                  collaborative requesting to ensure        Committee
to develop this competence.         someone who is both
                                    specifically trained and                      families can make informed
                                    competent in the role.                        choices regarding the wishes of
                                                                                  their loved one.
                                   Provide information so
                                    generalist teams know how to                 Ensure every appropriate clinical
Taking Organ              Taking Organ Transplantation to          Taking Organ Transplantation to                    Lead                Date
   Transplantation to 2020             2020 Wales Action                        2020 Wales Action

          UK Action                        Wales Action                   Cardiff and Vale University Health
                                                                                    Board Action

                                   access support to facilitate              environment knows how to access
                                   organ donation, if appropriate.           the SNOD or tissue services 24
                                                                             hour service.

                                                                           Increased SNOD presence by
                                                                             extending the working hours at
                                                                             UHW to promote involvement with
                                                                             early referrals and family
                                                                             approaches.

Publish hospital data to include:  Ensure published data is                Continue to analyse Cardiff and            Cardiff and Vale      March 2017
brain-stem death testing rates,     analysed at a local level and any       Vale UHB potential donor audit.              CLOD’s
donor referral rates, family        potential service improvements
approach    rates,     Specialist   are considered and implemented          Identify any barriers to donation          Cardiff and Vale
Nurse involvement and other         where necessary                         and seek to implement change to              SNOD’s
key areas.                                                                  make improvements.
                                                                                                                        Organ Donation
                                                                            Publish Cardiff and Vale Annual             Committee
                                                                            Report inclusive of delivery plan
                                                                            against specific organ donation and         Cardiff and Vale
                                                                            transplant indicators.                       Executive Board

Outcome 3 – NHS (Transplantation)

Improve donor management for  Monitor    outcome         of   pilot       Support clinical staff within critical      Cardiff and Vale      March 2017
potential cardiothoracic donors, programme     and         consider         care with management of the                  SNOD’s
providing a 24/7 service to
Taking Organ             Taking Organ Transplantation to       Taking Organ Transplantation to                 Lead                Date
   Transplantation to 2020            2020 Wales Action                     2020 Wales Action

         UK Action                       Wales Action                 Cardiff and Vale University Health
                                                                                Board Action

assist if pilot schemes prove    potential within Wales.               potential donor.
effective. (SCOUT Pilot)

Review      what       pre-mortem  Ensure any guidance developed     Read, comment and adhere to any           Cardiff and Vale      March 2017
interventions could legally and     is implemented within the NHS      new guidelines provided.                   CLOD’s
ethically be undertaken to          in Wales.
maximise the potential for                                                                                       Cardiff and Vale
organ donation (such as the                                                                                       SNOD’s
administration      of    heparin,
elective ventilation etc.).

Evaluate new techniques and  Ensure any guidance developed           Utilisation of machine perfusion.         Transplant            March 2017
technologies         for     the is implemented within the NHS         We intend to be part of any                Centre
preservation of retrieved organs in Wales                              developments in organ retrieval,
with a view to their use in the                                        perfusion and preservation.               NHSBT
UK.

Develop a system of peer  Fully participate in and act on            This needs to be led at a UK wide         Transplant            March 2017
review that is underpinned by a the outcome of national clinical       level by NHSBT. Full participation is      Centre
set of agreed standards for     audits.                                expected.
retrieval/ transplant centres.                                                                                   NHSBT

Provide guidance on levels of  Ensure any guidance developed         This also needs to be completed at        Transplant            March 2017
acceptable risk in relation to    is implemented within the NHS        a UK wide level but for our patients       Centre
offered organs, particularly from in Wales.                            in Cardiff we continue to carefully
extended     criteria    donors,                                       audit our outcomes to help inform         NHSBT
Taking Organ              Taking Organ Transplantation to         Taking Organ Transplantation to                Lead        Date
   Transplantation to 2020             2020 Wales Action                       2020 Wales Action

          UK Action                        Wales Action                  Cardiff and Vale University Health
                                                                                   Board Action

relevant to the individual                                                the risk: benefit discussion which
recipient’s needs and wishes.                                             occurs on an individual basis for
                                                                          every transplant patient. The
                                                                          introduction of protocols for
                                                                          considering organ offers from
                                                                          donors where there is an increased
                                                                          risk of donor derived disease and
                                                                          new consent pathway also reflects
                                                                          this.

                                                                         Transplant related risk is described
                                                                          in SaBTO guidelines. But any donor
                                                                          related risk should be considered in
                                                                          relation to recipient risk factors,
                                                                          medical status and outcomes.
                                                                          Mainly to risk staying on the waiting
                                                                          list.

Publish centre-specific risk-     Ensure published data is              From April 2014 NHSBT have                 NHSBT       March 2017
adjusted patient survival from     analysed at a local level and any      included this data for Kidney
listing as well as from            potential service improvements         transplant centres on their website
transplantation.                   are considered and                     which is available to the public.
                                   implemented where necessary.
Taking Organ                Taking Organ Transplantation to        Taking Organ Transplantation to              Lead           Date
   Transplantation to 2020               2020 Wales Action                      2020 Wales Action

          UK Action                          Wales Action                 Cardiff and Vale University Health
                                                                                    Board Action

Ensure clinicians are aware of      Ensure clinicians are aware of       Cardiff and Vale UHB conducts           Transplant      March 2017
and follow, best practice to         and follow best practice.             regular audit and review meetings        Centre
increase patient and graft                                                 to monitor outcomes from our
survival.                           Ensure transplant recipients          programme and compare with other
                                     receive the care and support          centres. All clinicians undergo
                                     they need.                            annual appraisal during which they
                                                                           demonstrate continuing
                                                                           professional development in the
                                                                           field of transplantation and the
                                                                           directorate supports all appropriate
                                                                           study leave to facilitate this.

Outcome 4 – Working with NHSBT and Commissioners

Develop a workforce strategy        Joint UK action                   Joint UK action with NHSBT                 SNOD’s          March 2017
for the organ donation service
which will tailor the service to                                                                                   NHSBT
the needs of individual
hospitals and seek to provide a
workforce that is focused on
supporting the potentially
conflicting demands of
providing a service to the donor
family, donor management and
donor co-ordination. This may
be configured in one or more
Taking Organ                 Taking Organ Transplantation to      Taking Organ Transplantation to               Lead                 Date
   Transplantation to 2020                2020 Wales Action                    2020 Wales Action

          UK Action                           Wales Action              Cardiff and Vale University Health
                                                                                  Board Action

roles as the needs of the
service dictate.

Subject to variations in             Joint UK action                   Joint UK action with NHSBT                SNOD’s                March 2017
Government policy, agree a
formal contract for organ                                                                                          NHSBT
donation with hospitals
specifying how hospitals and
the NHSBT donation service
work together to achieve
excellence.

Regional Collaboratives to lead      Review and refresh membership  Attend regional collaborative events.        Cardiff and Vale      March 2017
local improvement in organ             and terms of reference of organ                                              CLOD’s
donation, retrieval and                donation committee                Invite key stakeholders from UHB to
transplant practices and in local                                          attend.                                 Cardiff and Vale
promotion of donation and             Develop and implement a                                                      SNOD’s
transplantation.                       coordinated action plan to drive
                                       improvements in organ donation                                              Regional CLOD
                                       and retrieval across Wales.
                                       Work with Health Boards to
                                       develop a local communication
                                       plan to promote public
                                       awareness of the importance of
Taking Organ                 Taking Organ Transplantation to           Taking Organ Transplantation to                Lead        Date
   Transplantation to 2020                2020 Wales Action                         2020 Wales Action

           UK Action                          Wales Action                    Cardiff and Vale University Health
                                                                                        Board Action

                                      organ donation and
                                      transplantation including Living
                                      Donation.

Optimise the processes,              Work with NHSBT to optimise              Work with NHSBT to optimise the           NHSBT       March 2017
timescales, resources and             the processes, timescales,               processes, timescales, resources
supporting IT at every stage of       resources and supporting IT at           and supporting IT at every stage of
the pathway from donor                every stage of the pathway from          the pathway from donor
identification to long-term           donor identification to long-term        identification to long-term survival.
survival.                             survival.

Review the current processes         Work with NHSBT to review the           Work with NHSBT to review the              NHSBT       March 2017
for donor characterisation            current processes for donor              current processes for donor
(especially for microbiology and      characterisation (especially for         characterisation (especially for
tissue typing).                       microbiology and tissue typing).         microbiology and tissue typing).

Investigate the feasibility and      Work with NHSBT to investigate          Work with NHSBT to investigate the         NHSBT       March 2017
implications for the provision of     the feasibility and implications         feasibility and implications for a
a 24/7 provision of expert            for the provision of a 24/7              24/7 provision of expert
histopathology advice.                provision of expert                      histopathology advice for Welsh
                                      histopathology advice for Welsh          residents.
                                      residents.
12.0   Actions Required to Deliver Locally

Objectives for the next year to      Actions required to        Measurable          Why, Context, Inter            Role responsible      Evaluation
meet incremental service             deliver objective          outcome/ KPIs       Relationships, and             for leading
improvements                                                                        Contingencies.                 action. Review
                                                                                    Risk                           date
 Identify key actions required to    Continue to educate      Referral rate               Why?                    ED CLOD              March 2017
  improve donation from                staff in ED to adhere                         Substantial donor             Cardiff and Vale
  emergency departments                to NICE guidance                               potential from ED              SNOD’s
  including:                          Continued close work                                 Risk
                                       between ED CLOD                               No office space for
    100% referral of                  and SNOD’s                                     SNODs with ED
     potential donors from            Continue to adhere to                         Limited opportunity for
     Emergency Departments             UHB ED Organ                                   teaching due to clinical
    Identify a donation lead          Donation Pathway                               pressures
     in each Emergency                Ensure all clinicians                         High staff turnover (both
     Department                        are aware of the                               medical and nursing)
    Ensure representation             hospital policy                                      Relationships
     from Emergency                    regarding organ                               2 SNOD’s with UHB
     Department on UHB                 donation                                       senior ED experience
     Donation Committee               Simulation days                               UHB has a dedicated ED
    Set clear referral                                                               CLOD
     pathways for potential
     donors from emergency
     department

 Identify key actions required to    Improve the               Number of live     Live donor transplantation    Clinical lead for    March 2017
  deliver an increase in the           awareness of live          donor               (especially pre-emptive)       Transplantation
  number of living donation            donor transplant           transplants.        provides the optimum           (Mr Michael
                                       benefits amongst          Number of live      outcome for patients with      Stephens) and
                                       patients and non-          donor               end stage renal disease,       Clinical Director
                                       transplant clinicians.     transplants per     although only                  for Nephrology
                                      Stream-line the            million             approximately one third of     and
Objectives for the next year to   Actions required to       Measurable           Why, Context, Inter               Role responsible      Evaluation
meet incremental service          deliver objective         outcome/ KPIs        Relationships, and                for leading
improvements                                                                     Contingencies.                    action. Review
                                                                                 Risk                              date
                                   assessment process         population.          such patients will be fit        Transplantation
                                   for donors and            Number of live       enough to tolerate the           (Prof Aled
                                   recipients to increase     donor                surgery and the                  Phillips).
                                   the opportunity for        transplants as       immunosuppression
                                   pre-emptive                a proportion of      required to achieve this.
                                   transplantation.           the kidney           In comparison to the
                                                              transplant           alternative of dialysis it is
                                                              waiting list.        extremely cost-effective.
                                                             Number of pre-      The recipient and donor
                                                              emptive live         need a very careful (and
                                                              donor                time consuming) work-up
                                                              transplants.         and therefore early
                                                             Graft and            referral and education is
                                                              patient survival     essential. This requires
                                                              at 1 and 5           awareness and
                                                              years post           enthusiasm from general
                                                              transplant.          nephrologists and a
                                                                                   robust information
                                                                                   provision programme.

 Identify key actions required    Compare live donor       Outcomes            There are data suggesting        Clinical lead for    March 2017
  to ensure equity of access to     outcomes describes        described            access to transplantation         Transplantation
  both living and deceased          above across health       above per            is related to proximity to a      (Mr Michael
  organ transplants                 authorities.              UHB.                 transplant centre and also        Stephens) and
                                                                                   that outcomes following           Clinical Director
                                                                                   kidney transplantation is         for Nephrology
                                                                                   related to socio-economic         and
                                                                                   deprivation. To better            Transplantation
                                                                                   understand these                  (Prof Aled
                                                                                   relationships may allow us        Phillips).
                                                                                   to improve outcomes for
Objectives for the next year to     Actions required to        Measurable          Why, Context, Inter          Role responsible     Evaluation
meet incremental service            deliver objective          outcome/ KPIs       Relationships, and           for leading
improvements                                                                       Contingencies.               action. Review
                                                                                   Risk                         date
                                                                                    all patients.

 Develop a plan to support          Provide information       National                  Contingency           NRC                 March 2017
  Local Health Boards to              and support the            transplantation    Maintain relationships      Cardiff and Vale
  improve tissue retrieval            transfer of tissue         data                with National Referral       SNOD’s
  services                            services to the           EPSOD data          Centre
                                      National Referral                             Provide support and
                                      Centre                                         advice regarding tissue
                                     Continue to consent                            donation
                                      and facilitate tissue
                                      donation in multi
                                      organ donors
 Implement best practice             Adhere to care           Referral data                   Risk            Cardiff and         March 2017
  guidance for all eligible            bundles and policies     Donor              Clinical pressures           Vale SNOD’s
  patients on the organ               Standardised              outcome            Available service           Critical Care
  donation pathway                     approach when                                 provision
                                       possible to optimise                                Relationships
                                       donor potential                              Clinical staff
                                                                                            Contingency
                                                                                    Attain high standards of
                                                                                     donor care
                                                                                    Teamwork
 Identify key actions to improve    Continue to educate       Referral rate                   Risk                                 March 2017
  organ donation from paediatric      staff in PIC to adhere                        Engagement                    Cardiff and
  and neonatal units                  to NICE guidance.                                    Relationships            Vale SNOD’s
 Set clear referral pathways for    Attend all appropriate                        Consultant with special
  potential paediatric and            teaching                                       interest is on ODC
                                      sessions/meetings to                                  Contingency
                                      teach and discuss                             More visible SNOD
Objectives for the next year to       Actions required to          Measurable      Why, Context, Inter            Role responsible   Evaluation
meet incremental service              deliver objective            outcome/ KPIs   Relationships, and             for leading
improvements                                                                       Contingencies.                 action. Review
                                                                                   Risk                           date
 neonatal donors                        organ donation                               presence
                                       Ensure all clinicians                       Build trust and
                                        are aware of hospital                        relationships
                                        policy regarding organ
                                        donation
                                       Simulation days
                                        (observers)
                                       Awaiting the release
                                        of a paediatric CLOD
                                        post
                                       Extend PDA to
                                        neonatal services

 Develop a local                      Contact with UHB             Attendance             Contingency           Cardiff and         March 2017
  communications strategy for           communications team           to course     Maintain relationships         Vale SNOD’s
  organ donation and                    to highlight activity or      days           with all committee            Cardiff and
  transplantation, including living     events                       PDA data       members                        Vale CLOD’s
  donation                             ODC attendance                              Publicise relevant courses    Organ
 Maximise awareness of organ          Transplant week                              to engage with health          Donation
  donation pathways amongst            Teaching                                     professionals                  Committee
  local health professionals           Simulation training                         Maximise training
                                                                                     opportunities with
                                                                                     clinicians and nursing
                                                                                     staff

Additional End Note

The committee would like to thank all those families who have generously given a gift of Organ and Tissue donation, as well as those working
towards and supporting end of life choices for families to enable life saving transplants for others.
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