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

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1 Contents University Health Board TAKING ORGAN TRANSPLANTATION TO 2020 Review of 2015/16 and Action Plan for 2016/17

2 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 Outcome Outcome Outcome 4 Section 2: Action Plan and Priorities for 2016 / Development of Health University Board action plan for 2016/ Priorities for the coming year 10.0 Performance measures and management 11.0 Action plan for 2016/ Actions required to deliver locally

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4 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 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 Wales Action Plan sets out the actions and outcomes up to 2020 to enable us to achieve this. On the 1 st 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. 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 This is an improvement to the 7600 people listed at the end of 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, UHB was responsible for 34% of those cases which highlights the importance of delivering and supporting the UK Organ Donation Taskforce recommendations. UHB has achieved progress within : 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.

5 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.

6 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 The Welsh Transplant Advisory Group has identified all Wales Organ Donation and Transplantation Priorities for 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 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. 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 , 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 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:

7 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 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.

8 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 ODR 1 status unknown (%) / / / / / /16 Cardiff And Vale DCD Cardiff And Vale DBD UK Target DCD UK Target DBD / / / / / /16 Cardiff And Vale Wales England Scotland Northern Ireland 1 Organ donation register

9 Measure 2: Consent rate for organ donation when patient ODR status known (%) / / / / / /16 Cardiff And Vale DCD Cardiff And Vale DBD UK Target DCD UK Target DBD / / / / / /16 Cardiff And Vale Wales England Scotland Northern Ireland Overall the consent rate has increased in 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.

10 Measure 3: Deemed consent rate for organ donation when patient had not expressed a decision and deemed consent could be applied 1 December March 2016 Board Approaches Consents Adjusted consent rate (%) Abertawe Bro Morgannwg University Health Board Aneurin Bevan Health Board Betsi Cadwaladr University Health Board Cardiff And Vale Health Board Cwm Taf Health Board Hywel Dda Health Board Wales *Please interpret these rates with caution due to calculations being based on small numbers Source: NHSBT Following the deemed approach it is clear that 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 March 2016 Board Approaches Family support not given Rate of overrides (%) Abertawe Bro Morgannwg University Health Board Aneurin Bevan Health Board Betsi Cadwaladr University Health Board Cardiff And Vale Health Board Cwm Taf Health Board Hywel Dda Health Board WALES *Please interpret these rates with caution due to calculations being based on small numbers Source: NHSBT

11 Measure 5: Approach Rates (%) / / / / / /16 Cardiff And Vale DCD Cardiff And Vale DBD UK Target DCD UK Target DBD / / / / / /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 UHB DBD approach has exceeded the UK target.

12 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) / / / / / /16 Cardiff & Vale Wales / / / / / /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 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.

13 Measure 7: Number of living organ donors (per million population) Cardiff & Vale Wales / / / / / / / / / / / /16 Cardiff & Vale Wales England Scotland Northern Ireland

14 Measure 8: Percentage referral rate (%) / / / / / /16 Cardiff And Vale DCD Cardiff And Vale DBD UK Target DCD UK Target DBD / / / / / /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 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

15 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) 2010/ / / / / /16 Renal Liver/bowel Cardio Organs Cornea / / / / / /16 Renal Liver/bowe l Cardio Organs Cornea

16 Renal Financial year 2010/ / / / / /16 Cardiff & Vale Wales England Scotland Northern Ireland Liver/bowel Financial year 2010/ / / / / /16 Cardiff & Vale Wales England Scotland Northern Ireland Cardio Financial year 2010/ / / / / /16 Cardiff & Vale Wales England Scotland Northern Ireland Organs Financial year 2010/ / / / / /16 Cardiff & Vale Wales England Scotland Northern Ireland Cornea Financial year 2010/ / / / / /16 Cardiff & Vale Wales England Scotland Northern Ireland Source: NHSBT

17 Measure 9b: Deceased organ utilisation from donors after circulatory death (DCD) donors transplanted (per million population) 2010/ / / / / /16 Renal Liver/bowel Cardio Organs Cornea / / / / / /16 Renal Liver/bowel Cardio Organs Cornea

18 Renal Financial year 2010/ / / / / /16 Cardiff & Vale Wales England Scotland Northern Ireland Liver/bowel Financial year 2010/ / / / / /16 Cardiff & Vale Wales England Scotland Northern Ireland Cardio Financial year 2010/ / / / / /16 Cardiff & Vale Wales England Scotland Northern Ireland Organs Financial year 2010/ / / / / /16 Cardiff & Vale Wales England Scotland Northern Ireland Cornea Financial year 2010/ / / / / /16 Cardiff & Vale Wales England Scotland Northern Ireland Source: NHSBT

19 Measure 10: Patients transplanted by organ - including both living and deceased donors (per million population) 2010/ / / / / /16 Renal Liver/bowel Cardio Organs Cornea / / / / / /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.

20 Renal Financial year 2010/ / / / / /16 Cardiff & Vale Wales England Scotland Northern Ireland United Kingdom Liver/bowel Financial year 2010/ / / / / /16 Cardiff & Vale Wales England Scotland Northern Ireland United Kingdom Cardio Financial year 2010/ / / / / /16 Cardiff & Vale Wales England Scotland Northern Ireland United Kingdom Organs Financial year 2010/ / / / / /16 Cardiff & Vale Wales England Scotland Northern Ireland United Kingdom Cornea Financial year 2010/ / / / / /16 Cardiff & Vale Wales England Scotland Northern Ireland United Kingdom

21 Measure 11: Number of deaths on the organ transplant list (per million population) / / / / / /16 Cardiff & Vale Wales Financial year 2010/ / / / / /16 Cardiff & Vale Wales England Scotland Northern Ireland 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.

22 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 March 2015

23 One and five year patient survival for first SPK transplant recipients 1 April March 2015 One and five year graft survival for first SPK transplant recipients 1 April March 2015

24 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 March 2013 Median waiting time to Pancreas only transplant in the UK, for patients registered 1 April March 2013

25 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.

26 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 Development of University Health Board action plan for 2016/2017 UHB is one of the largest NHS organisations in the UK. The population of is growing rapidly in size, projected to increase by 10% between , significantly higher than the average growth across Wales and the rest of the UK. An extra 50,000 people will live in and require access to health and wellbeing services. The 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 ). 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 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 : 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 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 are also developing unhealthy behaviours:

27 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 : 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 mostdeprived 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 from one in a hundred (1%) to one in ten (13%). There are inequalities in how and when people access healthcare. Ill health in The disease profile in 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 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. 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,

28 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. 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. 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.

29 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 The all Wales Organ Donation and Transplantation Priorities 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 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 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

30 11.0 Action Plan for 2016/17 Taking Organ Transplantation to 2020 Taking Organ Transplantation to 2020 Wales Action Taking Organ Transplantation to 2020 Wales Action Lead Date UK Action Wales Action University Health Board Action 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. CLOD s SNOD s Organ Donation Committee March 2017 Engage with community services to promote organ donation and legislative change. All Governments should provide regular reports to Parliament/Assembly on Publish an annual report on progress improving organ Continue to collect and analyse UHB potential CLOD s March 2017 Annual report

31 Taking Organ Transplantation to 2020 Taking Organ Transplantation to 2020 Wales Action Taking Organ Transplantation to 2020 Wales Action Lead Date UK Action Wales Action University Health Board Action 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 UHB annual report inclusive of delivery plan against specific organ donation and transplant indicators. 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. CLOD s SNOD s Organ Donation Committee March 2017 Provision of learning materials in the form of leaflets and information booklets issued by the Welsh Government.

32 Taking Organ Transplantation to 2020 Taking Organ Transplantation to 2020 Wales Action Taking Organ Transplantation to 2020 Wales Action Lead Date UK Action Wales Action University Health Board Action 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. CLOD s SNOD s Organ Donation Committee 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 CLOD s SNOD s Organ Donation Committee March 2017

33 Taking Organ Transplantation to 2020 Taking Organ Transplantation to 2020 Wales Action Taking Organ Transplantation to 2020 Wales Action Lead Date UK Action Wales Action University Health Board Action 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 Annual Report inclusive of delivery plan against specific organ donation and transplant indicators. CLOD s SNOD s Organ Donation Committee 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 SNOD s March 2017

34 Taking Organ Transplantation to 2020 Taking Organ Transplantation to 2020 Wales Action Taking Organ Transplantation to 2020 Wales Action Lead Date UK Action Wales Action University Health Board Action 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. CLOD s SNOD s March 2017 Evaluate new techniques and technologies for the preservation of retrieved organs with a view to their use in the UK. Ensure any guidance developed is implemented within the NHS 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, Ensure any guidance developed is implemented within the NHS 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

35 Taking Organ Transplantation to 2020 Taking Organ Transplantation to 2020 Wales Action Taking Organ Transplantation to 2020 Wales Action Lead Date UK Action Wales Action University Health Board Action 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 riskadjusted 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

36 Taking Organ Transplantation to 2020 Taking Organ Transplantation to 2020 Wales Action Taking Organ Transplantation to 2020 Wales Action Lead Date UK Action Wales Action University Health Board Action 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. 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

37 Taking Organ Transplantation to 2020 Taking Organ Transplantation to 2020 Wales Action Taking Organ Transplantation to 2020 Wales Action Lead Date UK Action Wales Action University Health Board Action 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. CLOD s SNOD s Regional CLOD March 2017

38 Taking Organ Transplantation to 2020 Taking Organ Transplantation to 2020 Wales Action Taking Organ Transplantation to 2020 Wales Action Lead Date UK Action Wales Action University Health Board Action 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

39 12.0 Actions Required to Deliver Locally Objectives for the next year to meet incremental service improvements 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 Actions required to deliver objective 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 Measurable outcome/ KPIs Referral rate Why, Context, Inter Relationships, and Contingencies. Risk 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 Role responsible for leading action. Review date ED CLOD SNOD s Evaluation 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 nontransplant 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

40 Objectives for the next year to meet incremental service improvements Actions required to deliver objective assessment process for donors and recipients to increase the opportunity for pre-emptive transplantation. Measurable outcome/ KPIs population. Number of live donor transplants as a proportion of the kidney transplant waiting list. Number of preemptive live donor transplants. Graft and patient survival at 1 and 5 years post transplant. Why, Context, Inter Relationships, and Contingencies. Risk 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. Role responsible for leading action. Review date Transplantation (Prof Aled Phillips). Evaluation 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

41 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 all patients. Role responsible for leading action. Review date Evaluation Develop a plan to support Local Health Boards to improve tissue retrieval services Implement best practice guidance for all eligible patients on the organ donation pathway Identify key actions to improve organ donation from paediatric and neonatal units Set clear referral pathways for potential paediatric and 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 Adhere to care bundles and policies Standardised approach when possible to optimise donor potential Continue to educate staff in PIC to adhere to NICE guidance. Attend all appropriate teaching sessions/meetings to teach and discuss National transplantation data EPSOD data Referral data Donor outcome Referral rate Contingency Maintain relationships with National Referral Centre Provide support and advice regarding tissue donation Risk Clinical pressures Available service provision Relationships Clinical staff Contingency Attain high standards of donor care Teamwork Risk Engagement Relationships Consultant with special interest is on ODC Contingency More visible SNOD NRC SNOD s Cardiff and Vale SNOD s Critical Care Cardiff and Vale SNOD s March 2017 March 2017 March 2017