Taking Organ Transplantation to 2020...transplantation rates. The Welsh Government’s plan ‘Taking Organ Transplantation to 2020 - Wales Action Plan’ sets out the actions and

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 (%)

0

10

20

30

40

50

60

70

80

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

Cardiff

And Vale

DCD

Cardiff

And Vale

DBD

UK Target

DCD

UK Target

DBD

0

10

20

30

40

50

60

70

80

90

100

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

Cardiff And

Vale

Wales

England

Scotland

Northern

Ireland

1 Organ donation register

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

0

20

40

60

80

100

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

Cardiff

And Vale

DCDCardiff

And Vale

DBDUK

Target

DCDUK

Target

DBD

0

10

20

30

40

50

60

70

80

90

100

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

Cardiff And

Vale

Wales

England

Scotland

Northern

Ireland

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

Board Approaches Consents

Adjusted consent rate (%)

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

Board Approaches

Family support not given

Rate of 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 (%)

0

20

40

60

80

100

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

Cardiff

And Vale

DCDCardiff

And Vale

DBDUK Target

DCD

UK Target

DBD

0

10

20

30

40

50

60

70

80

90

100

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

Cardiff

And Vale England

Wales

Northern

Ireland

Scotland

UK Target

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.


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

0

5

10

15

20

25

30

35

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

Cardiff &

Vale

Wales

0

5

10

15

20

25

30

35

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

Cardiff &

Vale

Wales

England

Scotland

Northern

Ireland

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)

0

5

10

15

20

25

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

Cardiff &

Vale

Wales

0

5

10

15

20

25

30

35

40

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

Cardiff &

Vale

Wales

England

Scotland

Northern

Ireland

Measure 8: Percentage referral rate (%)

0

20

40

60

80

100

120

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

Cardiff

And Vale

DCDCardiff

And Vale

DBDUK Target

DCD

UK Target

DBD

0

10

20

30

40

50

60

70

80

90

100

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

Cardiff And

Vale

Wales

England

Scotland

Northern

Ireland

UK Target

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.


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

0

5

10

15

20

25

30

35

40

45

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

Renal

Liver/bowe

l

Cardio

Organs

Cornea

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


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


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


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


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

0

10

20

30

40

50

60

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

Renal

Liver/bowel

Cardio

Organs

Cornea

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


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


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


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


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


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

0

10

20

30

40

50

60

70

80

90

100

110

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

Renal

Liver/bowe

l

Cardio

Organs

Cornea

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


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


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


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


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


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)

0

2

4

6

8

10

12

14

16

18

20

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

Cardi ff& Vale

Wales

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


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.


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

Transplantation to 2020

UK Action

Taking Organ Transplantation to

2020 Wales Action

Wales Action


2020 Wales Action

Cardiff and Vale University Health

Board Action

Lead Date

Outcome 1 – Society and Individuals

Develop national strategies to

promote a shift in behaviour

and increase consent and test

progress with regular public

surveys.

Implement NICE and good

practice guidelines on family

approach.

Improve communication skills

of health professionals to talk

to patients and their families.

Support families to respect the

decision of their loved ones.

Amend NHSBBT educational

pack for use in Welsh schools.

Continued education and support

of clinical staff regarding NICE

guidelines and legislation change.

Ongoing simulation training,

internal practice sessions and

advanced communication courses

made available to health

professionals.

Continue progress in collaborative

requesting to ensure families can

make informed choices regarding

the wishes of their loved one.

Engage with community services to

promote organ donation and

legislative change.

Cardiff and Vale

CLOD’s

Cardiff and Vale

SNOD’s

Organ Donation

Committee

March 2017

All Governments should

provide regular reports to

Parliament/Assembly on

Publish an annual report on

progress improving organ

Continue to collect and analyse

Cardiff and Vale UHB potential

Cardiff and Vale

CLOD’s

March 2017

Annual report

Taking Organ


UK Action


2020 Wales Action

Wales Action


2020 Wales Action


Board Action

Lead Date

progress in their nation and

Health Ministers should have a

duty to promote organ donation

and transplantation, effectively

leading to a significant

improvement in public attitudes

and consent for organ donation.

donation and transplantation.

Report performance against

specific organ donation and

transplant indicators to the All

Wales Donation and

Transplantation Advisory

Group at least annually.

donor audit.

Publish Cardiff and Vale UHB

annual report inclusive of delivery

plan against specific organ

donation and transplant indicators.

Cardiff and Vale

SNOD’s

Organ Donation

Committee

July 2017

Ensure that the introduction of

a system of deemed consent to

organ and tissue donation in

Wales as described by the

Human Transplantation (Wales)

Bill is as successful as possible

and learn from this experience.

Ensure all patients who could

donate organs/tissue for

transplant are operationally

managed within the new

system

Continue legislation training within

education sessions for all clinical

staff involved in organ donation.

Provide support to all queries within

the hospital regarding legislative

change.

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.

Cardiff and Vale

CLOD’s

Cardiff and Vale

SNOD’s

Organ Donation

Committee

March 2017

Taking Organ


UK Action


2020 Wales Action

Wales Action


2020 Wales Action


Board Action

Lead Date

Develop a community volunteer

scheme to support Trust/Health

Board donation committees to

promote the benefits of

donation in local communities,

particularly amongst groups

with little tradition of organ

donation.

Explore opportunities to

develop community volunteer

schemes.

Work with the Third Sector to

ensure effective signposting to

sources of information and

support.

Offer advice and support to these

groups as required.

Extend invitation of Organ

Donation Committee membership

to relevant parties.

Work alongside patient experience

team within the hospital to identify

possible third sector involvement.

Cardiff and Vale

CLOD’s

Cardiff and Vale

SNOD’s

Organ Donation

Committee

Cardiff and Vale

Executive Board

March 2017

Outcome 2 – NHS (Donation)

Families of potential donors will

only be approached by

someone who is both

specifically trained and

competent in the role, training

packages and accreditation will

be provided to those who wish

to develop this competence.

NHS in Wales to work with

professional bodies and NHS

Blood and Transplant to ensure

training and accreditation

packages are adopted and

families of potential donors will

only be approached by

someone who is both

specifically trained and

competent in the role.

Provide information so

generalist teams know how to

Ongoing simulation training,

internal practice sessions and

advanced communication courses

made available to health

professionals.

Continue progress in

collaborative requesting to ensure

families can make informed

choices regarding the wishes of

their loved one.

Ensure every appropriate clinical

Cardiff and Vale

CLOD’s

Cardiff and Vale

SNOD’s

Organ Donation

Committee

March

2017

Taking Organ


UK Action


2020 Wales Action

Wales Action


2020 Wales Action


Board Action

Lead Date

access support to facilitate

organ donation, if appropriate.

environment knows how to access

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:

brain-stem death testing rates,

donor referral rates, family

approach rates, Specialist

Nurse involvement and other

key areas.

Ensure published data is

analysed at a local level and any

potential service improvements

are considered and implemented

where necessary

Continue to analyse Cardiff and

Vale UHB potential donor audit.

Identify any barriers to donation

and seek to implement change to

make improvements.

Publish Cardiff and Vale Annual

Report inclusive of delivery plan

against specific organ donation and

transplant indicators.

Cardiff and Vale

CLOD’s

Cardiff and Vale

SNOD’s

Organ Donation

Committee

Cardiff and Vale

Executive Board

March 2017

Outcome 3 – NHS (Transplantation)

Improve donor management for

potential cardiothoracic donors,

providing a 24/7 service to

Monitor outcome of pilot

programme and consider

Support clinical staff within critical

care with management of the

Cardiff and Vale

SNOD’s

March 2017

Taking Organ


UK Action


2020 Wales Action

Wales Action


2020 Wales Action


Board Action

Lead Date

assist if pilot schemes prove

effective. (SCOUT Pilot)

potential within Wales. potential donor.

Review what pre-mortem

interventions could legally and

ethically be undertaken to

maximise the potential for

organ donation (such as the

administration of heparin,

elective ventilation etc.).

Ensure any guidance developed

is implemented within the NHS

in Wales.

Read, comment and adhere to any

new guidelines provided.

Cardiff and Vale

CLOD’s

Cardiff and Vale

SNOD’s

March 2017

Evaluate new techniques and

technologies for the

preservation of retrieved organs

with a view to their use in the

UK.



in Wales

Utilisation of machine perfusion.

We intend to be part of any

developments in organ retrieval,

perfusion and preservation.

Transplant

Centre

NHSBT

March 2017

Develop a system of peer

review that is underpinned by a

set of agreed standards for

retrieval/ transplant centres.

Fully participate in and act on

the outcome of national clinical

audits.

This needs to be led at a UK wide

level by NHSBT. Full participation is

expected.

Transplant

Centre

NHSBT

March 2017

Provide guidance on levels of

acceptable risk in relation to

offered organs, particularly from

extended criteria donors,



in Wales.

This also needs to be completed at

a UK wide level but for our patients

in Cardiff we continue to carefully

audit our outcomes to help inform

Transplant

Centre

NHSBT

March 2017

Taking Organ


UK Action


2020 Wales Action

Wales Action


2020 Wales Action


Board Action

Lead Date

relevant to the individual

recipient’s needs and wishes.

the risk: benefit discussion which

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-

adjusted patient survival from

listing as well as from

transplantation.

Ensure published data is

analysed at a local level and any

potential service improvements

are considered and

implemented where necessary.

From April 2014 NHSBT have

included this data for Kidney

transplant centres on their website

which is available to the public.

NHSBT March 2017

Taking Organ


UK Action


2020 Wales Action

Wales Action


2020 Wales Action


Board Action

Lead Date

Ensure clinicians are aware of

and follow, best practice to

increase patient and graft

survival.

Ensure clinicians are aware of

and follow best practice.

Ensure transplant recipients

receive the care and support

they need.

Cardiff and Vale UHB conducts

regular audit and review meetings

to monitor outcomes from our

programme and compare with other

centres. All clinicians undergo

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.

Transplant

Centre

March 2017

Outcome 4 – Working with NHSBT and Commissioners

Develop a workforce strategy

for the organ donation service

which will tailor the service to

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

Joint UK action

Joint UK action with NHSBT SNOD’s

NHSBT

March 2017

Taking Organ


UK Action


2020 Wales Action

Wales Action


2020 Wales Action


Board Action

Lead Date

roles as the needs of the

service dictate.

Subject to variations in

Government policy, agree a

formal contract for organ

donation with hospitals

specifying how hospitals and

the NHSBT donation service

work together to achieve

excellence.

Joint UK action

Joint UK action with NHSBT SNOD’s

NHSBT

March 2017

Regional Collaboratives to lead

local improvement in organ

donation, retrieval and

transplant practices and in local

promotion of donation and

transplantation.

Review and refresh membership

and terms of reference of organ

donation committee

Develop and implement a

coordinated action plan to drive

improvements in organ donation

and retrieval across Wales.

Work with Health Boards to

develop a local communication

plan to promote public

awareness of the importance of

Attend regional collaborative events.

Invite key stakeholders from UHB to

attend.

Cardiff and Vale

CLOD’s

Cardiff and Vale

SNOD’s

Regional CLOD

March 2017

Taking Organ


UK Action


2020 Wales Action

Wales Action


2020 Wales Action


Board Action

Lead Date

organ donation and

transplantation including Living

Donation.

Optimise the processes,

timescales, resources and

supporting IT at every stage of

the pathway from donor

identification to long-term

survival.

Work with NHSBT to optimise

the processes, timescales,

resources and supporting IT at

every stage of the pathway from

donor identification to long-term

survival.

Work with NHSBT to optimise the

processes, timescales, resources

and supporting IT at every stage of

the pathway from donor

identification to long-term survival.

NHSBT March 2017

Review the current processes

for donor characterisation

(especially for microbiology and

tissue typing).

Work with NHSBT to review the

current processes for donor

characterisation (especially for

microbiology and tissue typing).

Work with NHSBT to review the

current processes for donor

characterisation (especially for

microbiology and tissue typing).

NHSBT March 2017

Investigate the feasibility and

implications for the provision of

a 24/7 provision of expert

histopathology advice.

Work with NHSBT to investigate

the feasibility and implications

for the provision of a 24/7

provision of expert

histopathology advice for Welsh

residents.

Work with NHSBT to investigate the

feasibility and implications for a

24/7 provision of expert

histopathology advice for Welsh

residents.

NHSBT March 2017

12.0 Actions Required to Deliver Locally

Objectives for the next year to meet incremental service improvements

Actions required to deliver objective

Measurable outcome/ KPIs

Why, Context, Inter Relationships, and Contingencies. Risk

Role responsible for leading action. Review date

Evaluation

Identify key actions required to improve donation from emergency departments including:

100% referral of potential donors from Emergency Departments

Identify a donation lead in each Emergency Department

Ensure representation from Emergency Department on UHB Donation Committee

Set clear referral pathways for potential donors from emergency department

Continue to educate staff in ED to adhere to NICE guidance

Continued close work between ED CLOD and SNOD’s

Continue to adhere to UHB ED Organ Donation Pathway

Ensure all clinicians are aware of the hospital policy regarding organ donation

Simulation days

Referral rate

Why?

Substantial donor potential from ED

Risk

No office space for SNODs with ED

Limited opportunity for teaching due to clinical pressures

High staff turnover (both medical and nursing)

Relationships

2 SNOD’s with UHB senior ED experience

UHB has a dedicated ED CLOD

ED CLOD

Cardiff and Vale SNOD’s

March 2017

Identify key actions required to deliver an increase in the number of living donation

Improve the awareness of live donor transplant benefits amongst patients and non-transplant clinicians.

Stream-line the

Number of live donor transplants.

Number of live donor transplants per million

Live donor transplantation (especially pre-emptive) provides the optimum outcome for patients with end stage renal disease, although only approximately one third of

Clinical lead for Transplantation (Mr Michael Stephens) and Clinical Director for Nephrology and

March 2017






Evaluation

assessment process for donors and recipients to increase the opportunity for pre-emptive transplantation.

population.

Number of live donor transplants as a proportion of the kidney transplant waiting list.

Number of pre-emptive live donor transplants.

Graft and patient survival at 1 and 5 years post transplant.

such patients will be fit enough to tolerate the surgery and the immunosuppression required to achieve this. In comparison to the alternative of dialysis it is extremely cost-effective.

The recipient and donor need a very careful (and time consuming) work-up and therefore early referral and education is essential. This requires awareness and enthusiasm from general nephrologists and a robust information provision programme.

Transplantation (Prof Aled Phillips).

Identify key actions required to ensure equity of access to both living and deceased organ transplants

Compare live donor outcomes describes above across health authorities.

Outcomes described above per UHB.

There are data suggesting access to transplantation is related to proximity to a transplant centre and also that outcomes following kidney transplantation is related to socio-economic deprivation. To better understand these relationships may allow us to improve outcomes for

Clinical lead for Transplantation (Mr Michael Stephens) and Clinical Director for Nephrology and Transplantation (Prof Aled Phillips).

March 2017






Evaluation

all patients.

Develop a plan to support Local Health Boards to improve tissue retrieval services

Provide information and support the transfer of tissue services to the National Referral Centre

Continue to consent and facilitate tissue donation in multi organ donors

National transplantation data

EPSOD data

Contingency

Maintain relationships with National Referral Centre

Provide support and advice regarding tissue donation

NRC


March 2017

Implement best practice guidance for all eligible patients on the organ donation pathway

Adhere to care bundles and policies

Standardised approach when possible to optimise donor potential

Referral data

Donor outcome

Risk

Clinical pressures

Available service provision

Relationships

Clinical staff Contingency

Attain high standards of donor care

Teamwork


Critical Care

March 2017

Identify key actions to improve organ donation from paediatric and neonatal units

Set clear referral pathways for potential paediatric and

Continue to educate staff in PIC to adhere to NICE guidance.

Attend all appropriate teaching sessions/meetings to teach and discuss

Referral rate

Risk

Engagement Relationships

Consultant with special interest is on ODC

Contingency

More visible SNOD


March 2017






Evaluation

neonatal donors organ donation

Ensure all clinicians are aware of hospital policy regarding organ donation

Simulation days (observers)

Awaiting the release of a paediatric CLOD post

Extend PDA to neonatal services

presence

Build trust and relationships

Develop a local communications strategy for organ donation and transplantation, including living donation

Maximise awareness of organ donation pathways amongst local health professionals

Contact with UHB communications team to highlight activity or events

ODC attendance

Transplant week

Teaching

Simulation training

Attendance to course days

PDA data

Contingency

Maintain relationships with all committee members

Publicise relevant courses to engage with health professionals

Maximise training opportunities with clinicians and nursing staff


Cardiff and Vale CLOD’s

Organ Donation Committee

March 2017

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.

Documents

Taking Organ Transplantation to 2020...transplantation rates. The Welsh Government’s plan ‘Taking Organ Transplantation to 2020 - Wales Action Plan’ sets out the actions and