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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