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UK Transplant update - (full conference transcript)

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Sue Falvey

Director of Donor Care and Co-ordination at UK Transplant

I’m going to update you on the work of UK Transplant in the last year For those of you who were at the conference last year, you will recall what Chris Rudge told you about the work of UK Transplant. I’ll just give you a brief overview of that for those of you who were not there

As a public body we are subject to a quinquennial review, and in our last review which was in 1998-99, as well as being told to continue with the work of UK Transplant, which was predominantly to maintain the national transplant database and facilitate the allocation of donor organs throughout the country, we were given three new responsibilities They are actually quite enormous tasks.

• The first one was to improve donation and transplant rates throughout the country.
• The second was to establish a national framework for donor transplant co-ordination services.
• And finally to establish an effective communication and public relations system.

The reason why we were given those responsibilities is illustrated in the next two slides This slide (see diagram below, 'Transplant waiting list, cadaveric donors and transplants in the UK, 1992-2001') shows the disappointingly ever increasing waiting list of patients waiting for a transplant of any organ The blue bars at the bottom show the donor rates, and as you can see over the last decade ’ the beginning part of the decade was certainly better than the end but the last three or four years have been relatively static Consequently in relation to the donor rates the transplant rates have fallen over the last ten years This slide (see diagram below, 'Donation and transplant rates 2001') actually shows donation and transplant rates across Europe and sadly the UK as far as donor rates are concerned has one of the lowest in Europe We all know that the rates in Spain are the best in the world We’re not necessarily saying that we can replicate Spain, because there are multi-factorial reasons why donation rates vary, and certainly for those of you who have been on holiday in Spain, driving in Spain is considerably more hazardous than driving in England The cadaveric kidney transplant rates are also lower in this country compared with others, although not as drastically low as the donor rates would show. So clearly we need to do something to improve these rates

What we’ve done is, because we’ve been given these additional responsibilities, clearly we needed additional funding, to ensure we could fulfil these roles, and we put together a business case to take forward, in particular, the new responsibilities we had been given One of those was to provide a national framework for the donor transplant co-ordinators, and donor transplant co-ordination is the key to success of organ donation programmes

What we did 18 months ago was to put together a transplant co-ordinator advisory group to advise us at UK Transplant about what the issues were in the service and how we could make it better The co-ordinators worked enormously hard in helping us to fulfil this role One of the things we looked at were how many transplant co-ordinators do we actually need, and what we ascertained was that we need 1.66 whole time equivalent (WTE) co-ordinators per million population. Some teams were not even up to having one WTE Because of that we funded ten new co-ordinator posts in the areas that were below one WTE per million population to bring them up to that level It also meant that, on quality of life for co-ordinators, most people now do a 1:4 on call, whereas at times people were having to do a 1:2 on call, which really is not acceptable We also looked at the management structure for co-ordination, and we also found that one key problem was that though co-ordinators around the country did very similar roles, their job descriptions varied enormously, their terms and conditions of employment varied, their grading varied, and again that clearly was not acceptable

So we’ve actually written a national job descriptions, and had these formally evaluated, so we are trying to ensure that everybody who is employed have clear role clarity and that they are all employed at the same level

We’ve also looked at training needs for both newly appointed transplant co-ordinators as well as on-going training, and the task group set to look at that have given us a report and we now need to implement their recommendations.

We’re also developing national policies and procedures We have just completed a national hospital policy which we hope to be disseminating around Trusts in the coming weeks We’re about to start work on a donor family care policy, and again donor family care is probably fairly similar at the time of donation, but it varies considerably in the long term care the family receives Clearly it shouldn’t vary from region to region, so we need national standards of the quality of care these families receive

We’ve also looked at research needs within the field of transplant co-ordination And if we look at the management structure (see diagram below), you’ll see here UK Transplant and this is me employed at UK Transplant Under me we have appointed donor transplant regional managers and although they are employed by UK Transplant in Bristol they actually work and are based in their geographical region of responsibility. Myself and my team are responsible for providing the professional leadership for the co-ordinators who are employed at local level, so we have to work very closely with the line managers in the acute Trusts where the co-ordinators are employed, and we have to work very closely with them because clearly the Trusts are accountable for all their staff and the staff accountable to the Trust, but we provide the professional leadership for them So we are working very closely for example in implementing the new job descriptions, and all the national policies we are developing

Those of you who were here last year will remember that Chris Rudge talked about several new schemes that we’re implementing nationally One of those was the donor liaison scheme This is really based on the Spanish system of organ donation, where in Spain you have an in-house transplant co-ordinator Historically in this country a team of transplant co-ordinators will be based generally in the transplant unit and provide a service for their region In Spain they have in-house co-ordinators in virtually every large hospital, and we recognise that having somebody who’s almost championing the cause of organ donation and transplantation is very beneficial So we decided we would bring a similar system into this country and we secured funding through our business case for 35 donor liaison schemes The schemes consist of the employment of a senior sister, all of whom have come from an intensive care background and they are supported by a consultant lead We pay for a small session a week of medical consultant’s time to support the donor liaison nurse in their role. Their prime responsibility is to ensure that they have proper procedures in place in that hospital to ensure that all donors are identified and the option of donation is discussed when appropriate Out of these 35 posts, we have funded 24 this year and we have asked these Trusts who currently don’t have a scheme to bid for money from next April We have funding for 11 more posts and we have had just over 30 applications, so a panel will be meeting in December to review these applications, Clearly we have to ensure that we’re putting the money into the right place, so we have to be convinced by the business plans the Trusts are putting in that they can actually meet the targets that they say they can meet

We are also introducing a national potential donor audit because clearly we need to know what the potential for organ donation is in this country Anecdotally you hear all sorts of stories that donors are missed on ITU, families say no, doctors can’t be bothered to ask ’ all sorts of things you hear But actually we don’t know the facts and we need to know the facts. There have historically been two audits in the past looking at the potential for organ donation in parts of this country ’ it wasn’t actually in every country in the UK ’ but we’ve never had a pure national audit and clearly the data we’ve had is now fairly old We need to know what’s happening now

Through the audit ’ and we’ll be auditing all the intensive care units throughout the United Kingdom ’ we’ll be able to identify any obstacles to donation there may be Therefore we can facilitate the resources needed to ensure that all donors are identified and referred. So we may find that one unit may have a considerably higher no consent rate than another unit We need to know why is that Is it because the families are being inappropriately approached by unskilled personnel?’ We need to make sure of all these aspects and at the moment we simply don’t know

Clearly the audit itself will raise the profile of donation and we know that raising the profile does actually improve donation rates So it’s clearly very important for long-term planning of care for patients with end-stage organ disease, because we have an ever-increasing waiting list Realistically, how many patients a year can we transplant from the pool of donors that we have?’ So this is absolutely crucial to our work in the coming years We have piloted the audit in the hospitals that have donor liaison nurses in post now and a couple of the donor co-ordinator teams have also been auditing their own units. We actually have done a larger pilot than we intended ’ we’ve audited 130 intensive care units throughout the country, and we’ve done three months’ pilot and we will be starting to introduce the audit nationally from January of next year

The second scheme that we’re looking at to improve transplant rates is living donor schemes What we are aiming to achieve is that all renal transplant units transplant 15 per cent of their waiting list from living donors. Some units have been very good with live donor programmes in this country, but some units have done very few and some units none And clearly for some patients, particularly those with rarer tissue types, getting a kidney from a living donor is actually going to be their best option, rather than waiting for a cadaveric So there’s certainly a need, not just because of the shortage of donors So this year we have funded 11 schemes, and funding the schemes has been predominantly of a dedicated living donor transplant co-ordinator, because as I’m sure many of you are aware who have been involved in living donor schemes, they do need significant resources and you often have to screen many family members to achieve one transplant The work-up is quite prolonged. We need to ensure that both the potential recipient and donor wants, so it’s quite a protracted period and so it’s very important that we have the resources to do it. We have funded 11 last year and 12 this year, so virtually every renal transplant unit in this country has now had additional funding for these programmes.

Finally we have funded a non- heart beating donor scheme We aim to try and fund 15 centres by 2006 There can be two types of non heart-beating donors ’ they can be what we call the uncontrolled non heart-beating donors, and these are patients who come into an accident and emergency department following maybe a road traffic accident, or a inter-cranial brain haemorrhage or that sort of incident They obviously come in critically ill and they try to resuscitate them in the intensive care unit but clearly resuscitation fails If all things are equal, it is possible to take kidneys from these patients, but time is of the essence There is also another group of patients called controlled non heart-beating donors, and these are patients normally dying in the intensive care unit They are not brain-stem dead patients but they are normally ventilated patients and it is becoming very clear that it is futile to continue treatment In those circumstances, once the life-saving support has been withdrawn, it is possible to take kidneys and in some circumstances livers from those donors Again, these programmes take quite a lot in particular co-ordinator time and surgical time, and so we have again funded schemes to try and improve donor rates in areas that can produce non heart-beating donors So last financial year we have funded four and this year we funded two programmes

Another part of our business case is obviously to increase the number of potential donors on the organ donor register We aim to try and have between 17 and 20 million names on there by 2006 Our target for this financial year was to achieve ten million by the end of this financial year We in fact will be achieving our ten million any time now, and in the light of that we have already organised for a celebration of that in December because we should well have reached the target by then The idea of the organ donor register is exactly the same as the donor card If someone in their lifetime has said that they want to be a donor, and staff at the time of their death know that it is their wish, it makes the approach to the family so much better, because you’re not asking the family to make a decision as to what their relative wanted, because you actually know what their relative wanted You’re merely saying to the family ’Are you happy to carry out this wish?’’ It does take the onus off the family to having to make the decision and it makes the whole process much easier for the staff involved Now unfortunately it hasn’t been well accessed because the only people who could access the register, which we run on behalf of the Department of Health, have been transplant co-ordinators What generally happens is the intensive care unit staff have often spoken to families before they speak to the transplant co-ordinator, so you have lost the moment of using the register So we have actually this year expanded the access to the register to critical care unit staff so that they now can also access it and obviously use it when approaching families.

So in conclusion we know we now have Government commitment for organ donation transplantation, because they have set very clear targets for the first time in fact to double the number of kidney transplants and to increase liver and heart and lung transplants by ten per cent So with continued Government commitment, sustained funding, clearly we need public commitment and willingness for donation programmes, commitment from all in the NHS, and UK wide leadership and support, we hope that all that equals a successful strategy for improving the number of organ donors and subsequently more transplants and new lives

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