Annual Report of the BCUHB Organ and Tissue Donation Committee

Transcription

1 Betsi Cadwaladr University Health Board Board Paper Item 13/205 Subject: Summary or Issues of Significance Priorities for Legislation or Healthcare Standard: Evidence base Consultation with others: (EqIA) Annual Report of the BCUHB Organ and Tissue Donation Committee In 2013 the UK Organ Donation Taskforce achieved it s target of a 50% increase in deceased donations since Taking Organ Transplantation to 2020, the new UK strategy was published in July 2013 BCU performs well when benchmarked against UK figures, especially with our donation after circulatory death programme. Implementation of a required referral policy has greatly improved referral rates. However we would like to make further improvements to consent rates. Collaborative approach rates of 100% in 2013/14 so far Introduction of the Tissue Alliance Sites to all 3 intensive care units has greatly improved tissue donation rates. The Human Transplantation (Wales) Act received Royal Assent on 10 September 2013 and will be enacted in 2015 The OD programme is being rolled out to Emergency Departments with education programmes to these departments To reinforce organ donation as a normal rather than abnormal part of end of life care in both the intensive care unit and the emergency department To look at measures to improve consent rates To audit new areas of potential missed donations. To support the Welsh Government in publicising, promoting and implementing The Human Transplantation (Wales) Act NICE guidance CG135 Organ Donation for transplantation: improving donor identification and consent rates for deceased organ donation. The Human Transplantation (Wales) Act 2013 NHS Blood and Transplant Potential Donor Audit The committee is multidisciplinary and multispecialty. Members also sit on an advisory group to the Welsh Government Has EqIA screening been undertaken? Yes Recommendations: That the Board support the ongoing work of the committee. Author(s) Dr Sam Sandow (Clinical Lead Organ Donation East) Date of report Date of meeting

2 3 rd Annual Report of the Betsi Cadwaladr University Health Board Organ & Tissue Donation Committee November 2013

3 Organ and tissue donation team structure BCU HEALTH BOARD NHS BLOOD AND TRANSPLANT (NHSBT) BOARD OF DIRECTORS ASSISTANT DIRECTOR Anthony Clarkson ANAESTHESIA, CRITICAL CARE AND PAIN CPG Dr Dave Council - Chief of staff Dr Ed Farley Hills - Clinical Director, Critical Care Mrs Sue Williams - Associate Chief of staff Nursing NORTH WEST AND NORTH WALES REGIONAL CLINICAL LEAD Dr Arpan Guha REGIONAL MANAGER Paula Aubrey TEAM MANAGERS Sue Duncalf Jane Monks Emma Thirlwall DONATION COMMITTEE CHAIR Mr Harri Owen-Jones CLINICAL LEADS Dr Alison Ingham Dr Richard Pugh Dr Sam Sandow SPECIALIST NURSES Abi Roberts Angela Campion-Sheen Helen Bullock BCU HEALTH BOARD DONATION COMMITTEE CRITICAL CARE Mr Phil Dean Senior Nurse Manager, Bangor Mr Mark Williams- Jones Senior Nurse Manager, Critical care Mrs Helen Williams Practice development nurse Wrexham Delyth Williams Practice Development EMERGENCY DEPARTMENT Dr Vanessa Poeppinghaus Associate Specialist Bangor Dr. Ash Basu Consultant Wrexham THEATRES Mr Dafydd Pleming Theatre Manager, Bangor PALLIATIVE CARE Dr Liz Williams Palliative Care, Bangor BEREAVEMENT SERVICES Rev Kathy Collins DONOR FAMILY REPRESENTATIVE COMMUNICATIONS REPRESENTATIVE Mrs Helen Granton, Bangor TISSUE DONATION REPRESENTATIVE Mrs Francesca Hook NORTH WALES CRITICAL CARE NETWORK Mrs Sue O Keeffe 2

4 Introduction 2012/13 was a record year for organ donation and transplantation in the UK, with more than 4,000 transplants carried out for the first time ever. However as of August people remain on the organ transplant waiting list in the UK. Of these on average 3 people die each day because there are not enough organs available. Furthermore, it has been estimated that, purely from a renal perspective, each missed organ donation opportunity is likely to cost the NHS 500,000 through additional dialysis costs alone. The multi-professional Betsi Cadwaladr University Health Board Organ Donation Committee, funded by NHSBT and under the chairmanship of Mr Harri Owen-Jones was set up in 2009 to implement the 14 recommendations of the UK Organ Donor taskforce report published in The ambitious target of 50% increase in deceased donations by 2013 was achieved on the very last day of data collection in Taking Organ transplantation to 2020: A UK strategy published this year by the taskforce aims to build on this momentum and put the UK amongst world leaders with regard to organ donation and transplantation As can be seen from the graph below, across North Wales we have exceeded this target. And later in the report we detail how we are ahead of the UK average in nearly all key metrics. However, we must not become complacent. There is still more we can do to ensure that all those who wish to become organ donors when they die have the opportunity to do so. A guiding principle of our donation committee is recommendation four of the Taskforce report which states that all parts of the NHS must embrace organ donation as a usual, not an unusual event Donation after brainstem death Donation after circulatory death Total number of donors /8 2008/9 2009/ / / /13 Deceased Donations in North Wales have doubled since

5 Donation after Brainstem Death (DBD) Until recently, donation following brainstem death has been the major source of organ donations in the UK. Brain stem death occurs after a catastrophic brain injury, for example following trauma or a massive stroke. Because the heart continues to beat after death has occurred, the organs retrieved from these donors are of high quality. They have not been damaged by lack of oxygen supply when the heart stops beating, as occurs in donation after circulatory death. Some organs, such as the heart, can only be donated following brain stem death. There is a huge shortage of hearts for transplant within the UK, as heart donations have not increased in recent years in the same way as other organ donations. However, very few people die in such a way as to make donation after brain stem death a possibility. It is therefore essential that we identify all such potential donors. Our goal is to ensure that 100% of potential brainstem donors are identified, tested for brainstem death (BSD) and referred to the donor transplant team. Data is routinely collected for the national potential donor audit. (UK average in brackets for comparison) This year we tested 93.5% (77.6%) of patients with suspected BSD. We referred 87.5% (91.6%) of patients to NHSBT We aim to approach 100% of families of potential donors to discuss organ donation. In order to support families sufficiently in making decisions regarding organ donation, we are trying, where possible, to make a collaborative request. This is when the intensive care unit (ICU) consultant and the specialist nurse in organ donation approach the family together. Whilst our consent rate is above the UK average, improving consent rates to organ donation remains our biggest challenge We approached 93.5% (92.6%) of families. 73.3% (67.8%) of families consented to donation Donation after Brain stem Death % 90.00% 80.00% 70.00% 60.00% 50.00% BCU UK 40.00% 30.00% 20.00% 10.00% 0.00% BSD tested rate Referral rate Approach rate Adjusted consent rate 4

6 Donation after Circulatory Death (DCD) Donation after circulatory death (sometimes called non heart beating donation) was a new concept to most staff when it was introduced to BCUHB in There have been many challenges along the way, but it is now part of our established practice and numbers are increasing year on year. DCD can occur when a patient dies following planned withdrawal of lifesustaining treatment as part of the North Wales ICU End of Life Care Pathway. Occasionally however, there were still misconceptions about the suitability or otherwise of individuals for donation after circulatory death, which had led to some missed referrals. In 2012 we trialed a nurse-led required referral policy, where the bedside nurse will refer every patient on whom lifesustaining treatment is to be withdrawn to the specialist nurse for organ donation. 100% 80% 60% 40% 20% Ysbyty Gwynedd Ysbyty Glan Clwyd Wrexham Maelor Betsi Cadwaladr 0% Apr-11 Jun-11 Aug-11 Oct-11 Dec-11 Feb-12 Apr-12 Jun-12 Aug-12 As you can see this has (along with the investigation of every patient which appears on the PDA data and was not referred) has had a dramatic effect on our referral rate, and we now perform well above the national average for referrals (82%vs 62%) and approach rate (90% vs. 56%) Our consent rate from families was lower than the national average (39%vs 51%). This reflects the fact that we are perhaps approaching families that clinical teams elsewhere would not consider approaching, but may also be an indication of the opinion of the population we are serving in a time of several conflicting articles in the lay press. As with DBD improving consent rates to organ donation remains our biggest challenge. In the DCD context this is particularly difficult, as donation requires withdrawal of care and allowing the heart to stop beating before a timely move to theatre to allow donation to occur. Data from elsewhere in the UK suggests collaborative approaching (where the ICU consultant and the SNOD approach the family together) may improve our consent rate. So far in 2013/14 we have achieved 100% collaborative approaching 5

7 Donation after circulatory death % 90% 80% 70% 60% 50% BCU UK 40% 30% 20% 10% 0% Referral rate Approach rate Adjusted consent rate Donation from the Emergency Department (ED) According to our audit data, occasionally a situation arises in ED where a patient on life sustaining treatment is identified as having irreversible pathology. (For example massive intracerebral haemorrhage). These patients are potential organ donors. We have therefore extended our organ donation programme to the ED over the last year. We have held educational drives in each of the three emergency departments, and have succeeded in donating from the emergency department. Donation from the ED is not without barriers, however. There are many logistical and ethical considerations to address. One of these is the potential increased demand on critical care beds; as such patients are best cared for in a critical care environment while the arrangements for donation are being made. Whilst we as a donation committee address other barriers, we would be grateful if the Board could address the issue of delayed transfers of care out of our three critical care units, as it makes it very difficult for us to use our beds effectively. Tissue Donation Although solid organ donation is not possible for the majority of patients who die in the ICU or ED, tissue (e.g. corneas, skin, bone, heart valves) donation is more often an option. To allow us to facilitate this, each of the three ICUs have joining the Tissue Alliance, which is based at Speke, Merseyside. Each patient who dies within those units will automatically be referred to the Tissue Alliance and families will be given information explaining this. 6

8 As can be seen from the graph, our tissue donation numbers are already increasing, we hope that we can sustain this increase as we look to roll out the tissue alliance program to other sites such as the ED s Number of Tissue Donors & Referrals from Betsi Cadwaladr Wrexham Maelor Glan Clwyd Ysbyty Gwynedd TOTAL No. of Tissue Donors Total number of referrals 50 Number April 08 - March 09 April 09 - March 10 April 10 - March 11 April 11 - March 12 April 12 - March 13 As we achieve the increase in donor referrals, we will need to have in place a more robust system for performing eye retrieval operations. If a donor is a multi-tissue donor, Tissue Services will arrange and carry out tissue retrieval. However, for medical reasons, many of our donors can only donate their eyes. In this situation BCU staff are responsible for carrying out the retrieval operation. At present this is done on a somewhat ad-hoc basis, relying to a certain extent on the goodwill of ophthalmology staff, many of who have been extremely helpful. However, on one or two occasions, we have not been able to proceed with donation due to lack of availability of staff. This is obviously very upsetting for families, who have already given consent and are trying to carry out their loved ones wishes. We are organizing training of ICU link nurses and ophthalmology nursing staff to perform eye retrievals so that we might facilitate this on a more reliable basis. 7

9 Engaging Healthcare Staff and the Wider Public Following the success of the 2 nd North Wales Symposium on Organ Donation in the Optic Centre in St Asaph in 2012 we are holding more low key educational events this year. We are presenting our data and the key messages as part of the ongoing North Wales Anaesthesia and critical care education program. Committee members have also been involved in ethical debates and public meetings discussing the proposed change in legislation within Wales outlined in the Human Transplantation (Wales) Draft Bill. The annual Organ and Tissue Donation Remembrance Service is now in it s 3 rd year. It was attended by many donor families and was incredibly moving, This year we were sung to by the Children of the choir of Ysgol Pen Barrastheir teacher Elen Merion (sister of Rhys Merion) died in tragic circumstances and donated her Organs in April This year we were delighted to be joined by several of the Board Members and we extend a warm welcome to any Board members who would like to attend next year. 8

10 To mark Transplant week in July 2013, 8 members of staff, including the 3 Clinical leads for Organ Donation, Cycled from Wrexham Maelor Hospital via Ysbty Glan Clwyd to Ysbty Gwyndd in association with the heart to heart campaign (more of which below). The distance was covered in a very exhausting day and generated a fair amount of publicity. However this is not enough! As part of our drive to engage with our community and encourage the general public to discuss Organ donation before they are in a situation where they cannot express their wishes we hope to massively build on this next year. We hope to run a mass participation cycle, Inviting donor families, transplant recipients, those on waiting lists, staff members and cyclists to cycle with us. We hope to create an annual spectacle to celebrate the donation community in North Wales. 9

11 We have several agencies interested in supporting the venture such as NHSBT, Transplant sport UK, and The Welsh Government heart to heart campaign. Awyr Las would like to become involved to help us publicise the event and to raise money. We seek the Health board s approval for the event on Sunday 6 th July 2014 so that we can use Hospital property for pre start warm up and mass starts, refreshment stops en route and a finish massage area. Awyr Las would like to become involved to help us publicise the event and to raise money. We would like to use social media to link to interested agencies and grow interest. We consider this to be a huge opportunity for the health board to generate a positive hospital PR/healthcare message to the general public at no outward cost to the board. Rhys Merion kindly donated a memorial to Organ Donors in memory of his siter which was revealed this year in a simple service in a garden beside the oncology centre, at Ysbty Glan Clwyd. In an attempt to engage with patients and their families entering the hospital we are planning 2 further memorial artworks at Ysbty Gwyndd and Wrexham Maelor. These will be paid for out of Organ donation funds and planning is at a very early stage The Human Transplantation (Wales) Act Members of the Committee have been involved with the consultative process throughout the bills progress through the Welsh Government, and with the accompanying publicity campaign Have a heart to heart about organ donation. The Human Transplantation (Wales) Act received Royal Assent on 10 September 2013 and will be enacted in It will change the position of position of patients over the age of 18 who are normally resident in Wales, who have not expressed a preference will be deemed to have consented to organ donation. In practical terms, we feel that it will make very little difference to our clinical practice as it stands at present, because in reality we are unlikely to proceed with a donation in the face of objection from family members. However, we are hopeful that, because of increased publicity, more families will have discussed organ donation and thus be aware of their loved ones wishes. This in turn may increase consent rates. The committee feels very strongly that the Bill will succeed or fail depending on the publicity that accompanies it. If done badly, it could have catastrophic effects on organ donation within Wales and possibly the UK as a whole. If done well, we may see the increase in consent rates we anticipate, and the Welsh Government s view that Wales is a truly altruistic nation, being proven correct. 10

12 Summary To address the issues raised in this report, our priorities for are as follows: 1. To consolidate our position in making organ donation a normal part of end of life care for all patients in the ITU and ED. Eradicating occasions where we fall short of our 100% target in identification, referral and family approach of potential donors 2. To improve consent rates by a. Continued 100% collaborative requesting. b. Engaging with the population of North Wales 3. To audit new areas of potential missed donations 4. To increase tissue donation by expanding the pool of available donors to include the ED s and to ensure staff are available to carry out retrievals We are grateful for the ongoing support of the Board with the work of our committee and look forward to updating you on our progress next year. Author Dr Sam Sandow Clinical Lead for Organ Donation, Wrexham Maelor On behalf of the BCUHB Organ and Tissue Donation Committee 11