‘Tomorrow my husband might stop being my carer and go back to being my partner’
Reflection — By Melanie Wager on January 6, 2010 7:00 am
Melanie Wager with her husband Nick
IT HARDLY seems like Christmas is behind us, yet already somebody in Wales will be dead for want of a transplant. It’s a stark figure, but there it is. Every 11 days, someone in this country dies while waiting to hear if their turn has come, if they might be the lucky one.
Around 500 Welsh people are currently waiting for transplants. Not all of them need new kidney transplants, as I do. Most of them will, but there are also people waiting for pancreases, hearts, lungs, livers and, in some cases, multi-organ donations. This wait becomes everything.
I have been back on the waiting list for five years after my second transplant failed in November 2004. Being back on the list means that I have had to face the loss of the life I had regained after my second transplant, which was successful for six years. So now it is back to the uncertainty of waiting for the phone call once again.
While I am waiting for that call I try to keep myself as healthy as possible. This means following a strict dietary regime, restricting my fluid intake to 500ml a day, and ensuring I always complete a full dialysis session. This means that even on days when I am not on my dialysis machine the fact that I have renal failure is ever constant. Something as simple as going out for a meal or drinks with friends presents on a whole different set of problems – poring over the menu in order to find something that I can eat, and the subsequent difficulty in watching other people drinking freely and tuck into chips or chocolate cake.
I am very fortunate that I have the love and unending support of my husband and family. Nick has been with me every step of the way and has kept me going when I felt like giving up. One of the most difficult feelings I have had to deal with is the feeling of guilt about how my renal disease impacts on the people I love. I know that I am a burden to others on the days when it takes hours just to do a load of laundry, and when I cannot even push the Hoover.
As I have traveled the transplant and dialysis journey I have had to cope with the death of fellow patients and friends. This is something you have to come to terms with. I do not know what the future will hold for me but this morning I woke up and got on with my day, and I always have hope for tomorrow.
Tomorrow might be the day my phone rings calling me to the hospital. Tomorrow might be the day I stop monitoring every mouthful I eat and every millilitre I drink. Tomorrow might be the day my husband stops being my carer and goes back to being my partner. Tomorrow might be the day I no longer depend upon a machine to keep me alive.
Things may change. There are plans afoot to make Wales the first part of the UK to introduce an opt-out system of organ donation under plans that were unveiled by the Welsh Government before Christmas. What this would mean is that people in Wales would automatically donate their organs when they die unless they have specifically joined an opt-out register or if close relatives object to it.
The proposal, which would move Wales from the opt-in system we currently have in the UK, would be similar to those already in operation in Belgium and Portugal, which have far higher organ donation rates than Britain, and it is backed by the British Medical Association, among others. Dr Vivienne Nathanson, its Head of Science and Ethics, said: “We hope that the debate in Wales stimulates similar discussions in the rest of the UK. The BMA still believes that one of the best ways to increase organ donation is to introduce consent with safeguards.”
The proposal is also backed by the Kidney Wales Foundation, with which I do volunteer work. Roy J Thomas, the charity’s chairman, said: “We know the overwhelming majority of people in Wales would like their organs to be donated after death but only 28% of people are on the NHS organ donor register. Cruelly, this means even more people are dying and waiting. This decision by the minister will break new ground in the UK. Many other countries in Europe operate a system of opt-out, and it is a large part of why they have far higher organ donation rates. We hope the rest of the UK will now follow the lead that Wales has given.”
In announcing the proposal, Health Minister Edwina Hart said she was personally in favour of opt-out as a way of increasing organ donation, but recognised it was “a sensitive and emotive subject”, and had ensured that time was spent gauging views before coming to a conclusion. ”The majority of responses supported a change to the organ donation system in Wales to a soft opt-out system,” she added.
Now the Welsh cabinet will begin exploring a bid for a Legislative Competence Order – which will give it the powers to introduce opt-out as law. However, LCOs can take up to two years to make their way through the House of Commons – not hugely helpful to those of us living day-to-day.
So in the meantime, the Donate Wales campaign continues its work. Backed by a range of charities and the BMA, with cross party support and funding from the Welsh Government, it has led to 60,000 extra people joining the organ donor register in Wales.
Despite this substantial support, the scale of the challenge the campaign faces should not be underestimated. We know that more than seven in 10 people in Wales would like to be on the organ donor register, yet less than three in 10 of us are. We know that this gap costs lives. How many 11-day periods will pass before opt-out become law? In truth, not even the Welsh Government knows. That’s why Donate Wales wants as many people as possible to join the register. After all, the more of you that join, the sooner I’ll get that call from the hospital.
Organ donation helps give people a tomorrow. Visit here to find out more.
Tags: Assembly, Edwina Hart, health, organ donation
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14 Comments
Incredibly moving story, and there’s little more I can add to it other than it really is so important for as many people as possible to carry donor cards. Yes, it’s great news that the Welsh Government feels strong enough about opt-out to plan an LCO for the powers to make it law, but some LCOs take two years to come into force. Using Donate Wales’ figures, my pretty awful maths makes that between 50 and 70 further people that could die while waiting for a transplant. For the effort of getting a card, signing it and carrying it, it’s got to be worth it.
The LCO, as I understand it, is not planned immediately. And even if it then goes through in two years it would need a Measure afterward to change the law in Wales and amend or repeal sections of the Human Tissue Act. That is not to negate this course of action – it is the only one open to us – but a closer estimate of the possible deaths in the interim would be, I would guess, at least double what you suggest Duncan. But having said all that, it is vital to move this forward and the commitment of the Health Minister to this agenda is both recognised and welcome by many patient patients (deliberate use of phrase) right across Wales.
This is a most urgent issue and it must seem cut and dried – its obvious that opt-out is what should happen. But before commenting, I would suggest that people read this excellent statement from UK Transplant and follow the link to the recommendations of the Organ Donation Taskforce. http://www.uktransplant.org.uk/ukt/newsroom/statements_and_stances/statements/opt_in_or_out.jsp
A couple of points:
It is not clear that opt-out will have the impact that is suggested. There is not necessarily a clear relationship between opt out and higher levels of organ donation. Some have it and have a lower rate – why is that? There are some real risks here and these are recognised by UK Transplant in a their well-crafted staement. The recommendation of the Organ Donation Taskforce – after considering the evidence – was to leave the UK with an opt-in system – so what are the reasons for Wales to go it alone? It is very difficult to see how this can work separately from the UK system.
It is clear that an awful lot more needs to be done working within the current system to deliver increased donation now – not waiting for an LCO process to work its way through. Opt out is not the only option. There area a raft of recommendations to be enacted from the report that could add real value now. Perhaps these are ongoing in Wales – if so I suggest that it would be better to evaluate their impact before going down the LCO route. Does anybody know what progress is being made to save those lives that might be lost in the interim?
Healthcare is full of emotional arguments for meeting the needs of many patient communities. There is, I regret, much weighty detail that sits underneath that really needs to be considered before decisions are made, for we risk looking good sometimes without actually delivering real outcomes.
There is currently an insufficient supply of donor organs to meet the demand for organ transplantations in the United Kingdom. The UK active transplant waiting list is increasing by about 8% a year, and the ageing population and increasing incidence of type 2 diabetes are likely to exacerbate the shortage of available organs. There were 13.2 dead organ donors per million population in the UK in 2007, substantially lower than in several other European countries and especially Spain with opt-out, which had a rate of 34.3 per million population for the same year.
Referring to the UK Organ Donation Taskforce report of January 2008, it is worth quoting the report, which said: “Currently organ donation is not adequately performance-managed or funded. Key elements such as organ retrieval and donor transplant coordination are heavily reliant on a variety of ad hoc arrangements.” It also acknowledged: “It is neither stable nor fit for the future.”
Abadie and Gay of Harvard and Chicago Universities (2005) conducted a study to examine this across 22 countries who have introduced presumed consent systems over a 10 year period. The study found that opt out had a positive and sizeable effect on organ donation rates of some 25%-35% higher on average in presumed consent countries.
Very recently five studies comparing donation rates before and after the introduction of legislation for opt out (before and after studies); eight studies comparing donation rates in countries with and without opt out systems (between country comparisons); 13 surveys of public and professional attitudes to opt out . The results showed the five before and after studies represented three countries: all reported an increase in donation rates after the introduction of opt out. In the four best quality between country comparisons, opt out law or practice was associated with increased organ donation—increases of 25-30%, 21-26%, 2.7 more donors per million population, and 6.14 more donors per million population in the four studies. Other factors found to be important in at least one study were mortality from road traffic accidents and cerebrovascular causes, transplant capacity, gross domestic product per capita, health expenditure per capita, religion (Catholicism), education, public access to information, and a common law legal system.
In the same report eight surveys of attitudes to opt out were of the UK public. These surveys varied in the level of support for opt out, with surveys conducted before 2000 reporting the lowest levels of support (28-57%). The most recent survey, in 2007, reported that 64% of respondents supported a change to opt-out.
There is no doubt, legislation, availability of donors, organisation and infrastructure of the transplantation service, wealth and investment in health care, and public attitudes to and awareness of organ donation may all play a part in a civilised society in saving lives of those like Melanie and over 500 others in Wales who wait, without counting those who are not on the NHS list who should be.
In a very recent poll in Wales over 70% expressed a preference for an opt out system.Opting out is, of course, not a novel concept.
It has already been introduced in Spain, Austria, Belgium, Sweden, Denmark, Finland, France, Italy and Norway.
Wales will take the lead on this important issue in the UK.We hope other parts of the UK will follow the lead.
It is very clear that opt-out will have a significant effect.
Roy J Thomas
Kidney Wales Foundation/Donate Wales Campaign
I think Roy that you are quoting the same evidence that the Organ Donation Taskforce took into consideration. The headlines look good, but as the Organ Donation Taskforce report appendix on this shows, there are methodological weaknesses. They concluded that there was probably a correlation but noted that there were other factors at work which in some studies were not considered. . It is interesting to note that a senior transplant clinician in Spain has stated that he attributes Spanish success not to opt out but how you engage with families. And he would seem to be right just based on the core figures here – opt out delivering 2.7 – 6.4 per million increase compared to the current difference between England & Spain. It just doesn’t look like that can be explained by opt out (granted that in UK we are starting from a low base). It seems that at the conclusion of the consultation on opt-out in Wales the Minister was going to see how the current Organ Donation Taskforce recommendations panned out and go for LCO in 2013 – we really need to see progress on making the system work. So something has changed her mind – I would suggest not the evidence? More importantly, where are we now on the delivery of the Organ Donation taskforce recommendations? I suggest that it is the system that counts here more than the law.
Jackson you stated that “…it is the system that counts here more than the law”; speaking from personal experience it is a system that is not working. If it was working I would not have spent the last 5 years waiting for a phone call that may never come.
I see the effect that the ageing population is having on the dialysis unit in Cardiff alone and the pressure that it is putting on the services as they stand – and this is only going to get worse as the patient numbers rise (as predicted).
Yes the system needs to change and no I don’t think that a change to an opt out system will wave a magic wand however it has made people talk about the issue. Perhaps that is the real issue here, to make sure that people discuss their wishes; a system of required consent would ensure this. Is that the way forward I wonder? I wish I had all the answers but I do know that the current system is failing people and this is having fatal consequences.
Melanie wrote “I wish I had all the answers but I do know that the current system is failing people and this is having fatal consequences” and I believe that is the critical point.
We have near record numbers of people waiting for renal transplants in Wales, a boom in demand for dialysis and a projected further increase over the next decade. Despite the prioritisation given by the Health Minister to renal services (increased access to dialysis, expansion of the transplant unit at UHW, funding the Donate Wales campaign) there is still more to do. And the trends indicate there will be even more to do in ten years time.
It’s time to bust some myths around mandated choice – it could well be a major part of the answer that Melanie and so many others are looking for.
One of the myths here may be about mandation and its role. Look at the evidence that Roy Thomas quotes – an increase in organs from 2.7 – 6.14 per million. Look at the York University assessment of that evidence (not just the highlights) and the Organ Donation Taskforce’s reaction. These are not mythic. These are, I think, rational people trying to make sense of a difficult issue. Look at the difference to Spain 13.2 to 34.3 and look at what the Spanish are saying – it is the system indeed not just opt out. It is about the availability of ITU beds, it is about the engagement of intensivists and other health care staff with transplant co-ordinators with families, presenting the evidence and making the case, it is the wholesale awareness of the opportunity that donation presents. These things require investment.
I keep asking the question – where are we with the recommendations of the Organ Donation Taskforce, what is happening now in our hospitals? Opt out or not, if these things are not proceeding why are we going down a lengthy, potentially expensive and possibly ineffective programme to develop opt out in Wales.
Funding in the NHS is in increasingly short supply. There are many good causes. I just think we need to be a little more sure.
It is good to discuss matters openly and with rational rigour. This is an important issue to those await transplantation and deserves intelligent discussion.
We all agreethat we need to effect good legislation, ensure availability of donors, effect organisation and infrastructure of the transplantation service, ensure wealth in society and investment in health care, and keep positive public attitudes to and awareness of organ donation . All this play a part in a civilised society in saving lives of those waiting for a transplant.
It is right to ask about how the Wales Organ Donation Implementation Group is effecting change.
Of course, not all agree, especially with the UK Organ Donation Taskforce who concluded against presumed consent . Those who disagreed included many of us in Wales, the BMA and the Chief Medical Officer in England Sir Liam Donaldson plus several other leading medical figures and academics in the UK and Europe.Committees and Taskforces often mould evidence to pre determined conclusions.
Some in society wish to continue to make the picture more 1970′s Rediffusion and less 2010 HD clear and the but time has moved on in Wales on organ transplant.
With regret Westminister and Whitehall did not have the will or the vision to carry out proposals on opt despite the clear evidence quoted above which should have lead to a change in thinking. The evidence was dismissed and those who lobbied against – mainly public officials were successful as they wanted infrastructure to be put in place first.This is not bad but it is not the experience of other countries which couples infrastructure with opt out.
The Spanish model and evidence from Spain was better contained in the evidence given to a House of Lords Committee published 2 July 2008, 17th Report of Session 2007 -08 (Paper 123-I ) but that Spanish evidence concentrated on the UK Donor Taskforce recommendations to better the infrastructure which we all agreed with and continue to endorse.
Westminister Government reports are often written for government in England – not Wales, Scotland, NI, or other parts of Europe. The benefit of being in Europe is that we see other systems that work. The benefits of devolved government is that we can change locally and do so quickly and not wait for those with less will to adapt to the modern world and advancements or have more organisational issues to solve.
From the evidence of other countries Opt out brings an increase in donation rates and saves lives. Medical advancement and systems in the UK and Europe allow this.
Several in England have applauded the Welsh Assembly for taking this step and now want Westminister to move forward.
The support for Opt out is cross party including the Cabinet, leading visionary and experienced politicians.
Let’s hope the vision continues to be clear to effect the change.
Roy J Thomas
Kidney Wales Foundation
Donate Wales Campaign
I still dispute that the evidence is clear – here are a part of the conclusions from the Organ Donation Taskforce on the evidence:
“11.4 it is worth noting that presumed consent legislation was passed in spain in 1979 but it was only a decade later, in 1989, when their national transplant organisation was founded, putting a new infrastructure in place, that donor rates began to rise. in italy presumed consent legislation was passed in 1999, but before it was fully enacted some regions, notably Tuscany, adopted the spanish organisational model and saw organ donation rates double to 26.9 donors per million population.6 on the other hand, not all countries that have presumed consent legislation have high organ donor rates. sweden switched to presumed consent in 1996 but continues to have one of the lowest rates of organ donation in europe (see figure 1).”
The York report is quite clear that other factors in countries that were taking opt-out could not be effectively assessed in terms of their impact. And that is the problem. You just can’t tell, that is there is no evidence that enables you to separate infrastructure from opt out, which takes us neatly back to Spain.
Roy is blaming public officials for the failure to back opt out – well many of the people on the taskforce were paid through the public purse as NHS employees – a large cohort of clinicians working in the transplantation world. I am not sure that they would be so easily hoodwinked. The membership is below, just so people know. Draw your own conclusions. Personally, I am always a little sceptical when politicians are signed up – nobody wants to be left out of this one do they and some of our politicians may have other motivations. I wonder how many of them have had the opportunity to read through the Organ Donation Taskforce report and all its supporting papers? I do not doubt that there is plenty of support here for opt-out, I am sure that I am in a minority. But that doesn’t mean that I am wrong but, to echo Nathaniel Lee the Restoration Poet, just outvoted (check out the quotation on madness – its a goody). The evidence didn’t change minds in the Taskforce, never mind Westminster because it probably just isn’t good enough, Just saying it does, and repeatedly saying it does will not change this. That would lead me to believe that the Minister’s response to local consultation in Wales which initially fell in line with the Organ Donation Taskforce – do the infrastructure and then take a look – changed for some other reason not linked to the evidence. Have we really sifted through the evidence in a robust manner in Wales before making this current decision?
ORGAN DONATION TASKFORCE MAIN GROUP
Elisabeth Buggins Chair of NHS West Midland SHA and (until
CBE DL (Chair) September 2008) non-executive (Chair) member of NHS Blood and Transplant
Simon Bramhall Consultant Surgeon, Liver and Hepatobiliary Unit
Queen Elizabeth Hospital, Birmingham
Bob Dunn National Kidney Federation
Christine Elding Donation Nurse Specialist, Brighton & Sussex University Hospital
Bobbie Farsides Professor of Clinical & Biomedical Ethic, Brighton & Sussex Medical School
Shirley Harrison Chair, Human Tissue Authority
David Lock Barrister
Jonathan Montgomery Professor of Health Care Law, University of Southampton; Chair, Hampshire PCT
Julie Moore Chief Executive, University Hospital Birmingham NHS Foundation Trust
Karen Morgan, Regional Manager Donor Care and Coordination S.West and S.Wales UK Transplant
Paul Murphy Consultant in neuroanaesthesia and intensive care, Leeds General
Vivienne Parry Writer/Broadcaster
David Price Professor of medical law, De Montfort University School of Law
Gurch Randhawa Professor of Diversity in Public Health, University of Bedfordshire
Martin Smith Consultant in Neurointensive Care, London
Chris Watson Consultant Transplant Surgeon/Reader in Surgery,University of Cambridge
Peter Drew Consultant nephrologists and lead clinician for the North Wales Renal Network
Sally Brearley Chair of the Patients’ Forum
Brodie Paterson Emergency medicine consultant, Tayside
MEMBERS FROM DEVOLVED ADMINISTRATIONS
Will Scott Scottish Executive Health Department
Siobhan McKelvey DHSSPS Northern Ireland
Peter Carr Welsh Assembly Government
OBSERVERS
Chris Rudge Managing and Transplant Director, UK Transplant
Doug Noble Clinical Advisor, CMO WHO Office
Jackson, at the risk of getting myself a short paperback of an answer, why are you arguing against opt-out? Because it might not save as many lives as is claimed? Is that a reason? If so, it doesn’t seem particularly sound because, at the end of the day it WILL save more lives than we’re managing at present. All I’m seeing in your argument is semantics, and pointless semantics at that.
Roy Thomas writes: “It is right to ask about how the Wales Organ Donation Implementation Group is effecting change.” He is right to do so: without a proper infrastructure in place then organ supply for transplant cannot be maximised. But it is not correct, as some are doing, to hide behind WODIG and say no other change needs to be effected.
Back in 2007 the Health Minister announced a series of steps to support renal patients in Wales. These included increasing the transplant capacity at UHW, expanding dialysis opportunities and also beginning a consultation on presumed consent. None of these would work in isolation as they only tackle part of a much bigger problem.
Yes, some of the issues that Jackson points out are indeed points that have been raised that need addressing. But, as Duncan contends, a greater supply of organs is also critical to save more lives. An opt out system is the best way I can see to increase that supply.
And I’m proud that Wales with its brave Health Minister is leading the way on this debate.
Duncan,
Somethings are not simple – but to cut it down to the essentials:
The evidence is not what it seems – it just isn’t – it is more than than semantics.
Money is short. So making sound decisions is essential. Do we know what this will cost in Wales?
The Organ Donation Taskforce said infrastructure changes then look at opt out.
The Minister’s forward on the Opt Out report in Wales in September 2009 said:
“On this basis, the Assembly Government will commit to seeking a
legislative change to introduce an opt-out organ donation system
in Wales in the future but first I do want to give the service
opportunity to implement the Taskforce recommendations. This
will ensure we build the appropriate infrastructure into the NHS
and create the change to the culture that will enable an opt-out
system to work effectively. Once the five year Taskforce
implementation programme is completed in 2013 then I will seek
legislative powers to introduce an opt-out organ donation system in
Wales.”
I see no reason why Wales should be out of step with the rest of the UK at this time, clearly nor did the Minister in September.
At the risk of repeating myself; people in my situation are getting fed up of waiting for politicians, pundits and the hospital management to start implimenting all the changes and improvements that are said to be either due or will be in the next few years.
I know money is tight in the NHS you don’t need to tell me I have spent months at a time in hospital where my Mother has washed me, brushed my hair and fed me because there was no one else available on the ward who had the time to do it. I spent 6 months in a side room where for 2 months a chip was left where it had been dropped under a chair because no one bothered to clean under it. You talk about making sound decisions – easy get rid of some of the middle management who’s photographs adorn the concorse in UHW and give us more Auxillaries, Nurses and Doctors to actually deliver the care we so greatly need when we are sick and for some patients dying.
We don’t want to be out of step with the rest of the UK we want to be striding ahead with our heads held high stating loudly that we as a Principality are proud that we care enough about the lives of our weak and vulnerable citizens that we can and will make the changes necessary to help them.