House of Lords
Thursday 21 July 2005
Gulf Veterans
asked Her Majesty's Government:
What further consideration they have given to the problems and needs of veterans of the 1990–91 Gulf conflict with medically unexplained illnesses, and the dependants of those who have died.
My Lords, the Government remain determined to address the medical concerns of Gulf veterans. Medical assessments are available from the medical assessment programme. The Defence Medical Services and NHS deliver appropriate medical treatment and are working together further to improve the support available. Financial support is available to veterans and dependants through pensions, and practical help is available from the Veterans Agency's welfare service. We continue to fund appropriate scientific research on this complex issue.
My Lords, I am grateful to my noble friend. Yet is it not disturbing that, 14 years after the conflict, and despite his department's long insistence on more research as the way to a settlement, this House still awaits the outcome even of the Porton Down study of the health effects of the vaccines used on our troops; that while the US Government have spent $316 million on research into Gulf War illnesses, we have committed only £8.5 million; and that, of Gulf War widows, the Royal British Legion has stated:
"They would have been better treated had their husbands been in the US and not the British Army"?
Is it not high time now for closure of this controversy on the basis of the scrupulously fair and balanced findings of the inquiry conducted by the noble and learned Lord, Lord Lloyd?
My Lords, we recognise the deep concern that exists to understand the basis and cause for the level of Gulf veterans' illnesses. I know from my own experience in the biotechnology industry the real challenge that is often faced by science in terms of coming to a conclusion as to the basis and cause for disease. We should not underestimate the complexity of factors within this whole area.
We do not accept, however, the point that has been made by the noble Lord; that is, that people would have been better off in the United States. That is absolutely not the case. The United Kingdom has invested significantly in medical research across a whole range of studies— cancer mortality statistics; study of veterans' offspring; and understanding the possibility of organophosphates being a factor. A whole range of possible explanations has been explored. Those studies to date have not been able to explain the level of illnesses that our Gulf veterans are suffering from. We continue to carry out this research. Significant research is ongoing. We will monitor, and act on, any results which come out. I should stress that we are committed to trying to find the answers to these problems. We should not underestimate the difficulty in doing so.
My Lords, has the Minister's department taken any account of that excellent report, albeit unofficial, by my noble and learned friend Lord Lloyd of Berwick, because it certainly threw a great deal of light on the whole situation?
Yes, my Lords, we have noted the recommendations of the report from the noble and learned Lord, Lord Lloyd, but we do not agree with all of the recommendations. We do agree, however, with the first recommendation of the report. We acknowledged before the publication of the report that, since returning from the Gulf, some veterans have become ill. In a substantial number of cases, their illnesses have been accepted as relating to their service in the Gulf. We accept that the level of illness in Gulf veterans is higher than we would have expected from people returning from operations.
My Lords, the noble Lord, Lord Morris of Manchester, mentioned the Porton Down study. What is the state of that study and when does the Minister expect it to be published?
My Lords, the status of the study is that we have interim results, and we are waiting to see whether that study can be reported in a learned journal. As the House will recognise, it would not be appropriate for us to comment until such publication in a learned journal takes place.
My Lords, given the Minister's particular expertise, will he undertake to read the report that the noble and learned Lord, Lord Lloyd of Berwick, wrote? When he has done that in the Recess, will he question his officials to ask why their attitude has been, to quote the Defence Select Committee,
"characterised throughout by scepticism, defensiveness and general torpor."?
My Lords, I assure the noble Lord and the House that I have read the complete Lloyd report, and I have questioned the department on the recommendations therein to get a full understanding for myself. I do not accept the points made in terms of torpor. The impression that I have had in coming into the department is that there is a real commitment in the department to understanding this matter. I understand that there are concerns about the responsiveness over time, and I believe that it is recognised that that responsiveness has not been there in the past, but I can assure the House that that responsiveness is there now.
My Lords—
Bishop!
My Lords, I believe that we should hear from the right reverend Prelate.
My Lords, in the diocese of Norwich, we had a particularly distressing case of a former army chaplain having to retire early when everyone—bar, it seemed, the Government—recognised that his illness was related to his Gulf War service. Does the Minister recognise that the failure of the Government to recognise officially Gulf War illness simply adds to the psychological distress of those who suffer from it? That factor in itself should hasten further action.
My Lords, I assure the right reverend Prelate that the Ministry of Defence has accepted that there is a higher level of illness in veterans who have returned from the Gulf War than we would have expected from veterans returning from operations. Let me also make the point that it is important to understand why the Ministry of Defence does not and cannot accept the definition of the illness as Gulf War syndrome.
I learned from my own training from my Phd the vital importance of being very clear about the definition of terms. The scientific importance of understanding that there is no such scientific basis to define those illnesses as a syndrome, while appearing to be hardhearted, is not. To enable us really to understand what is going on with these Gulf War illnesses, we have to be as clear as we can. We recognise that there is such a thing as a Gulf War illness, and we recognise that it is important for us to understand its basis.
My Lords—
Law Lord!
My Lords, people are standing up everywhere. The simplest thing would be to move on to the next Question.
EU Directive on Services
asked Her Majesty's Government:
What plans they have to make progress with the European Union Directive on Services during the United Kingdom presidency of the European Union.
My Lords, we shall try to resolve outstanding concerns on the directive on services during our presidency. Free movement of services is and always has been one of the fundamental freedoms set out in the EU treaties. We shall continue the technical work begun by the Luxembourg presidency on this directive in preparation for further discussions after the European Parliament's first reading in the autumn.
My Lords, despite the Prime Minister's genuine concerns, alluded to in a speech on 24 March, with regard to the impact of the services directive on the NHS, does my noble friend agree that implementation of the services directive will be the greatest impetus to the Lisbon agenda, will generate 600,000 new jobs and will boost EU GDP by €37 billion? Does he agree that that will represent the very best form of a European social model and help to bring the people closer to the European Union, as outlined by Trade Commissioner Peter Mandelson today?
My Lords, I agree with my noble friend. The negotiations on the scope of the directive as regards who will be covered by it and who will not are not yet resolved; they are ongoing. That should comfort those who may be fearful regarding particular services. However, the overall benefits are accurately stated: benefits to all states; value added of about 1.1 per cent to some €33 billion; and productivity gains without question. In addition, real wages in the EU would rise by nearly half a per cent while the return on capital would increase by 1.1 per cent. Were we able to achieve those kinds of liberalisation, the quality of the economies of Europe, not all of which are in great shape, would unquestionably improve.
My Lords, does the Minister agree that the directive is long overdue? It has already been discussed substantially, so we hope that the negotiations will not take too long. Does he not further agree that it is perfectly possible to maintain high standards of qualifications for people who have spent many years getting their qualifications in vocations, professions and trades without them becoming artificial restraints on trade or restrictive practices? That should reassure some of our colleagues on the Continent who are more nervous about this directive than we are.
My Lords, I agree with that point. The ability of people with a known qualification to transport their skills is obviously useful. It gives reassurance. People have a sense of knowing what they are getting when they engage with someone for a service. It is absolutely true that there is no reason for people to be unduly apprehensive about any of that. In making the commitment to try to drive this matter forward during our presidency, which lasts only six months, noble Lords can see that there is urgency there.
My Lords—
My Lords, there is plenty of time for both noble Lords. Let us hear from the Cross Benches and then from the Conservatives.
My Lords, does not the Minister agree that the corollary to what he said about this being a basic freedom is that whatever exemptions are made at this stage cannot under any circumstances be permanent? Would he like to comment on the proposition that, rather than allow a general watering down of the provisions of the directive, it might be better to accept slightly larger sectoral exemptions in the first place?
My Lords, I am quite tempted by that proposition but the reality is that the negotiation will no doubt have to balance that against other factors. There are apprehensions in some of the European states about the likely impact of the measure, and there are concerns that there should be no social dumping and no moving down towards the bottom. I do not believe that those are really the dangers and for that reason I am not as apprehensive about the measure. However, the negotiations and the role of the European Parliament in determining the outcomes of them will be essential.
My Lords, will the Minister confirm that there is a great deal of apprehension on the part of the French concerning this directive? Will he state whether an opt-out would be a perfectly legitimate compromise to help to overcome those anxieties?
My Lords, I hope that we shall reach an agreement which will not involve an opt-out. The characterisation in some of the French media regarding a liberalised economy over which there are no restraints competing with the European social model has been greatly overstated. I do not think that the March European Council misunderstood the issues; it said that the internal market for services has to be fully operational while preserving the European social model. That specifically tried to address those French concerns. It is our belief that the negotiations will be successful in that respect.
My Lords, is my noble friend aware that progress on the services directive will be supported more strongly—I support it very strongly—if there is progress at the same time on the temporary agency workers directive?
My Lords, I have heard that point put and I know that it is put understandably and reasonably by representatives of the ETUC and the domestic trade union movements. If too many directives are all interlinked, the prospects of getting any reasonable progress in any reasonable period of time will be very limited. Of course, no one wants to see some form of movement to the bottom, which I believe underpins the question that has been asked.
My Lords, the aims of this directive are obviously admirable, but are not the Government right to proceed rather cautiously in their consultation? Does the Minister agree that this is a most colossal directive covering, it is estimated, more than 60 per cent of all employed people throughout the entire European Union? It is, in fact, a mega directive and therefore needs to be handled very carefully. Does the Minister agree that it would be a great pity if it ended up producing more regulation and not less, and attached itself by conditions to all kinds of other regulations and created greater difficulties for business and not the kind of competition that we all want to see?
My Lords, it is an absolutely massive potential change, which is why it is possible to make the claim for it that, if successful, it will have as dramatic an impact as my noble friend Lord Harrison and I indicated on levels of employment, competitiveness, potential profitability and value added. Those are big prizes and it is worth going for them. However, if we put too many impediments in the way, none of those prizes will be realised and people may well say within a year or so, "What was the impact of the Lisbon agreements?". That would be a shocking and wasteful outcome.
Questions for Written Answer: Electronic Delivery
My Lords, I beg leave to ask the Question that has been standing in my name on the Order Paper for the past eight years.
The Question was as follows:
Why, since the request was first made in 1997, it is still not possible for a Member who so desires to receive electronic Answers to his Questions for Written Answer automatically.
My Lords, in 2003, the late Lord Williams of Mostyn committed to ensuring that all Peers who request electronic Answers receive them. Since then, I understand that Peers who have requested electronic Answers have received them by e-mail.
My Lords, I thank the noble Baroness for that Answer. As soon as I received the answer from Lord Williams, I sent a letter to his office. Sadly, it is not the case that I receive Answers to all my Written Questions by e-mail; in fact, I have received only two so far this Session, out of the many Questions that I have asked. Please will she try to make sure that, where the requests are made, they are acted on? Does the fact that we cannot do this effectively illustrate the Government's disrespect for Parliament and their incapacity for undertaking IT-based projects—such as identity cards?
My Lords, I do not agree that this demonstrates disrespect for Parliament, although I acknowledge that there has been a problem. I have learnt rather more about the matter in researching this Question than I would care to. I hope that the House will allow me to explain the position until this week and that which we have now put in place.
Until this week, it was possible for Peers to send their Questions to the Minute Room by e-mail but not necessarily to receive their Answers by e-mail. Peers who wanted an Answer by e-mail needed to notify my office, which then notified the relevant departments. Regardless of that, all Peers received an Answer in addition on paper, because it has to be signed off by a Minister. We have now put those two systems together. All Peers who notify by e-mail will receive an Answer by e-mail. However, I understand that the noble Lord, Lord Lucas, puts his Questions down in writing but wants the Answers by e-mail.
Oh!
My Lords, I ask all Peers please to notify us if they would like to receive a reply by e-mail, regardless of the method that they use to put their Question down. I also need to ask Peers who use personal e-mail addresses rather than parliamentary ones to give us the relevant permission, because of data protection legislation. I hope that that is much clearer. I will review the matter when we return in October over the three months until Christmas, but I hope that putting the two systems together will make it much simpler in the long term.
My Lords, I am extremely glad that we have the whole Summer Recess to study the reply of the noble Baroness the Leader of the House. Does she agree that this is part of a wider problem that gets pretty close to disrespect? On Tuesday, we had the noble Lord, Lord Sainsbury, ducking and diving and refusing to answer a Question that was answered in the Commons this morning, but to which we will not get an answer until later today.
God knows what decisions will be shovelled out by Written Answer this afternoon, once Parliament is safely out of the way. Two departments in particular—the Home Office and the Northern Ireland Office—have an appalling record in responding to Questions for Written Answer. Does that not indicate that a Government who are supposed to be committed to freedom of information and open government are, in fact, showing all the old Whitehall wiles to stop Parliament obtaining the information that it should have?
My Lords, I must say that I do not agree with that; I shall explain why. I should say that we tried to be too complicated regarding the receipt of Written Answers by electronic means. We tried to establish a stand-alone system that would allow electronic signatures from Ministers and so on. That system will no longer apply and we shall continue in the way that I have just outlined. We tried to be much too complicated. The resources required were too great and many Peers did not indicate that they wanted to receive their answers in that way.
Regarding the wider matter raised by the noble Lord, Lord McNally, there is undoubtedly a problem with Questions for Written Answer. He mentioned the Home Office and the Northern Ireland Office. I have taken that matter up with my Cabinet colleagues. I review that on a weekly basis with my ministerial colleagues in the Lords. In addition, I recently wrote to the Cabinet Secretary who has replied, informing me that he has raised this matter with his Permanent Secretary colleagues. I hope that we will see an improvement. Some Questions cut across departments and some of the information required for the reply may have been complicated but that in no way detracts from the fact that Members of this House should receive a reply within the timescale that has been set down.
My Lords, I have a great deal of sympathy with the noble Lord, because I remember eight years ago, along with my colleague, the noble Lord, Lord McIntosh, trying to wrestle with the same problem. I am delighted to have heard the noble Baroness's answer and can I congratulate her—
Question!
My Lords, it is a question. Will she keep up the pressure, because I feel that there is some bureaucratic resistance towards dealing with electronic matters in government?
Yes, my Lords.
My Lords, in view of the fact that electronic communications are supposed to be quicker, cheaper and simpler, and in view of the noble Baroness's answer, would it not be much simpler if we returned to the normal "steam engine" method of using manuscript and spoken Questions and Answers, instead of electronic ones?
My Lords, we are seeking to respond to the needs and requests of Members of this House.
London: Terrorist Attacks
asked Her Majesty's Government:
Whether, in view of the recent terrorist explosion on a London bus, they will consider the case for having a trained employee on each bus in addition to the driver so as to increase security.
My Lords, the attacks of 7 July have underlined the need to protect crowded places and soft targets. Since the Madrid commuter attacks in March 2004, the Government have increased security on the rail and underground networks and are now looking at what further practical measures can be taken to address other vulnerable transport targets.
My Lords, I thank the Minister for that helpful Answer. Does he agree that one impact of these tragic events has been further to aggravate the unwillingness, particularly of parents, to move from cars to buses? That will mean that the normal congestion of the school run will worsen. Would it not be a good idea to examine day-to-day security apart from those tragic events, which we hope will not re-occur, and, where appropriate, provide buses that have a member of staff in addition to the driver, particularly for children on the school run?
My Lords, I am grateful to the noble Lord for that constructive suggestion. We are looking at all proposals to increase security and he has highlighted one relating to children. We are looking at that very seriously. More generally, he will recognise that the problem with buses is that we have over 46,000 buses in daily use in Britain and a number of them work a 16 to 18 hour-day. Consequently, security for each individual bus is an enormous challenge.
My Lords, does the Minister agree with me that it is good news that the use of sniffer dogs for searching for explosives in London is being increased? Would it be a good idea to use them for spot checks on buses?
My Lords, we shall certainly do what we can in that respect. The noble Baroness is quite right that we have increased security at Tube stations and main railway stations by the employment of sniffer dogs. We may be able to do that for major bus stations. She will recognise the particular challenge of bus safety, given the number of stops that they make and the number of buses in daily use.
My Lords, does the Minister believe that London bus drivers are being made safer or less safe as a result of the Mayor of London's stated support for suicide bombers?
My Lords, I do not believe the Mayor of London has expressed support for suicide bombers. He certainly was extremely clear in his declaration against the horrors of this attack on Londoners. We all congratulated him on his forthright and sympathetic response to the victims on that occasion. London Transport, of course, will play its full part in seeking to learn the lessons from these attacks. It is already adopting additional security measures, some of which I have been able to outline this morning. Therefore, I do not believe that anyone should underestimate the commitment of everyone concerned with the security of the travelling public in seeking to improve that situation.
My Lords, does the Minister believe that one of the very important factors is the alertness of passengers themselves in looking around and seeing what is happening with other passengers?
My Lords, that is certainly so, particularly with buses. Inevitably, a certain amount of big luggage tends to be separated from the passenger because it cannot be put in the aisle of the bus as no one else would be able to get past. It is important that we should all be alert. I also draw to the attention of the House that 80 per cent of the buses in London now have CCTV, which helps as regards security, and we shall consider extending that.
Regulation of Financial Services (Land Transactions) Bill
Brought from the Commons; read a first time, and ordered to be printed.
Business of the House: Motion 13 July
My Lords, I beg to move, the Motion standing in my name on the Order Paper.
Moved, That the order of 13 July referring the Unstarred Question in the name of the Viscount Astor to a Grand Committee be discharged.—(Baroness Amos.))
On Question, Motion agreed to.
Charities Bill [HL]
My Lord, I beg to move the Motion standing in the name of my noble friend Lady Scotland of Asthal on the Order Paper.
Moved, That the amendments for the Report stage be marshalled and considered in the following order:
Clauses 1 to 6, Schedules 1 and 2, Clauses 7 and 8, Schedules 3 and 4, Clauses 9 to 12, Schedule 5, Clauses 13 to 29, Schedule 6, Clauses 30 to 33, Schedule 7, Clauses 34 to 73, Schedules 8 to 10, Clauses 74 to 77.—(Lord Grocott.))
On Question, Motion agreed to.
Civil Partnership Act 2004 (Overseas Relationships and Consequential, etc. Amendments) Order 2005
Code of Practice: Access and Unfair Practices during Recognition and Derecognition Ballots
Code of Practice: Industrial Action Ballots and Notice to Employers
My Lords, I beg to move the three Motions standing in the name of my noble friend Lord Sainsbury of Turville on the Order Paper.
Moved, That the draft order and codes of practice laid before the House on 5 July be approved [2nd Report from the Joint Committee].—(].—(Lord McKenzie of Luton.))
On Question, Motion agreed to.
Fire (Scotland) Act 2005 (Consequential Provisions and Modifications) Order 2005
Further and Higher Education (Scotland) Act 2005 (Consequential Modifications) Order 2005
Mental Health (Care and Treatment) (Scotland) Act 2003 (Consequential Provisions) Order 2005
My Lords, I beg to move the three Motions standing in my name on the Order Paper.
Moved, That the draft orders laid before the House on 7 June be approved [First Report from the Joint Committee]—(]—(Lord Evans of Temple Guiting.))
On Question, Motion agreed to.
Railways (Convention on International Carriage by Rail) Regulations 2005
Railways Act 1993 (Determination of Turnover) Order 2005
My Lords, I beg to move the two Motions standing in my name on the Order Paper.
Moved, That the draft regulations laid before the House on 13 June and the draft order laid before the House on 14 June be approved [First Report from the Joint Committee.]—(.]—(Lord Davies of Oldham.).)
On Question, Motion agreed to.
Organ Transplants
rose to call attention to the benefits of organ transplants, and the case for increasing the number of organ donations; and to move for Papers.
My Lords, I am grateful for the opportunity to raise such an important issue as organ transplantation. I shall speak today with particular reference to kidney transplantation. I declare an interest in this area as the honorary president of the National Kidney Research Fund in Scotland. However, I enter the caveat that the views I express are my own, and not necessarily those of the NKRF.
Transplantation is truly one of the miracles of modern medical science. It quite simply offers patients with end-stage renal failure, who would otherwise die or have to endure daily lifelong dialysis treatment, the opportunity to live a normal life.
Much has been achieved over the past 10 years since the establishment of the Organ Donor Register to raise awareness of the importance of organ donation and to encourage people to register as doners. As a result, there are now 12 million people on the register. However, in applauding the Government's efforts to boost organ donation, we must not lose sight of the fact that there remains an acute shortage of available organs for transplants.
Some 6,204 patients are currently on the waiting list—696 of those are in Scotland—for a life-saving transplant. The average waiting time for a kidney transplant is 792 days for an adult and 168 days for a child, but I am aware of cases where the wait has been several years. Those figures are based on adult patient registrations in the UK during the period 1998–2000 and paediatric registrations in the UK during the period 2001–03. I am grateful to the NKRF for supplying me with them.
The UK's record falls well short of transplantation rates in other European countries and shows marked regional variations. The situation is set to become even worse as kidney failures are forecast to increase significantly over the next 15 years.
It appears that there is an increasing move towards live donor transplants. I understand this helps with the problem of compatibility, increases the likelihood of a successful "take" and obviously reduces the problems of organ rejection. I can see its attractions, especially given the shortage of organs, but in my view that is no panacea as it leaves a donor vulnerable with only one kidney, and there can be problems of family pressure to provide an organ. However, with proper counselling and the removal of family pressure, there can be no doubt about the benefits to a patient. Live donors have their place, but in my view they are certainly not the sole solution to the problems we now face. We will have to rely on cadaver organs for the foreseeable future to meet the need.
While 90 per cent of the general public support organ donation, only 20 per cent have registered their intention to donate. That means that a considerable number of organs that could be made available for transplantation may be being missed.
Secondly, among the 20 per cent of people who have registered their consent to donate, some could have their wishes overturned by relatives, particularly if they had failed to make their wishes known to relatives before their deaths. Again, valuable organs are not available. The situation must be addressed because patients are, quite literally, waiting and dying for a transplant.
My noble friend will recall that last autumn the issue was raised during the passage of the Human Tissue Act 2004. At that time my noble friends Lord Chandos and Lord Davies of Coity and the noble Lord, Lord Brooke of Sutton Mandeville, and I tabled an amendment to enable the Secretary of State to tackle the root cause of the problems; namely, the current system of consent for organ donation.
The amendment would have allowed the Secretary of State to move from the present system of informal consent to a system in which presumed consent would operate. That system was favoured by, among others, the National Kidney Research Fund, the British Medical Association and other health organisations. It would be based on the presumption that an individual's organs would be made available for donation unless he or she registered their desire to opt-out. As part of a package of measures to tackle the shortage of organs, that would significantly increase the level of organ donation in this country. The package would include better training for hospital staff when approaching patients and relatives about donation and education initiatives so that people better understand what organ donation involves.
Moreover, that system will help to address relatives' refusal, which is a key factor preventing organs being made available for donation. Relatives are often unsure of an individual's wishes and therefore revert to the default position, which presently presumes that organs will not be donated. Even when individuals' wishes are known, difficulties can arise. In Glasgow a few weeks ago, I met the partner of an accident victim who described her feelings on being approached regarding the use of her late partner's organs. He was on the register, but notwithstanding that, she found it very difficult. The deciding factor as to whether to give consent was the fact that he had made his wishes very clear to her before he died. It is not enough simply to be on the register; it is important that those on the register discuss the matter clearly with their relatives before death.
If the system were changed, that would alleviate the huge pressure on relatives to have to second-guess the deceased's wishes. The system would still ensure that relatives were approached and informed before any organs were made available, so that any objection to donation on their part could be made. Other European countries which have adopted, and continue to practice, a system of presumed consent have organ donation rates almost twice as high as that of the UK. For example, figures for 2003 show that the UK had 12.1 cadaveric donors per million of the population compared with 23.3 in Austria and 24.4 in Belgium, where presumed consent is practised.
I shall briefly mention the tragedies that occurred at Alder Hey and Bristol. They were very sad—indeed outrageous—events and it is right that the Government should have taken action to ensure that they never happen again. In the case of organ donation, it is imperative that the wishes of the deceased are paramount.
The Human Tissue Act 2004 makes clear that where an adult has given consent to organ donation following his death, that consent is sufficient for the activity to be lawful. My noble friend Lady Hayman may say more about that later. However, in its draft codes of practice published this week, the newly established Human Tissue Authority clearly states that it is also necessary to ensure that relatives are advised ahead of any removal. In fact, it states:
"If the family or those close to the deceased object to the donation, for whatever purpose, when the deceased has explicitly consented, health professionals should seek to discuss the matter sensitively with the family, encouraging them to accept the wishes of the deceased and making clear that they do not have the legal right to veto or overrule the deceased's wishes".
However, it continues:
"Health professionals need to consider each case individually and whether, in extreme cases, it would be appropriate not to proceed with organ donation in the face of continued objection by the bereaved family".
That suggests that even if a person registered his wish to become an organ donor, that wish could still be overturned by relatives. That undermines the principle that the deceased's wishes are paramount, and could prevent organs being used for a life-saving transplant. If the system were changed, whereas at present there is little to encourage health professionals to make the approach to relatives in the first place, that, too, would change.
A system of presumed consent would place a positive emphasis on the importance that organ donation can make to the lives of those waiting for a transplant. It would reassure healthcare professionals that it was acceptable to request donation and encourage them to approach relatives more routinely.
There is a need for research into the reasons behind the decision of relatives to ignore or who feel unable to accede to a dead relatives' wishes. I know that research is being undertaken on that at some universities on that point at present. Can the Minister say something about that, as the findings could be extremely valuable to us in making informed decisions in future?
I sometimes believe that we are all guilty of shortcomings in our communication with the public on the vital issue of organ donation. As a nation, we are not very good at discussing death. It is something to shy away from. If we could only convey the lifesaving role of transplants and the joy of recipients and their relatives, we would be more than halfway towards winning the battle against the shortage.
In Glasgow, a few weeks ago, the "Love Seat" was unveiled. It is made from 14 different Scottish woods, with a central silver motif to represent Scottish organ donors before the year 2000 and an individual silver motif for each donor in this century, which will be added to as each new donor appears. That innovative way of celebrating and thanking organ donors has been funded by public donations and the NKRF. It is currently on display in the Wolfson institute at the University of Glasgow and will have a permanent home in the refurbished Kelvingrove Gallery.
At the unveiling, I met a 10 year-old boy who had a heart transplant and whose life had been transformed so that he could be a normal lad, able to play football with his mates. I met a 14 year-old girl who had a kidney transplant and whose life was similarly transformed. I met a middle-aged woman on dialysis who was waiting for a transplant. Often we do not pay enough tribute to dialysis departments, which do sterling work to keep people alive until a donor organ becomes available. I especially commend them for their dedication and service.
I met a middle-aged man who had a long wait for a kidney transplant, and who was ecstatic about his freedom and liberation from dialysis. He was active in raising awareness in the community of the benefits of organ donation and transplants. For all those reasons, I hope that the Government will seriously consider putting in place a system of presumed consent and making progress in improving the rate of organ donation in this country. I beg to move for Papers.
My Lords, it happens occasionally, but not very often in the life of this House, that a debate takes place that might actually save lives. The noble Lord, Lord Hughes of Woodside, is to be congratulated on raising this matter and securing the debate. I am very happy to be in a position to participate in it. I do so in what I hope will be thought of as a reflective tone, because I think that, underneath the matters to which the noble Lord has drawn our attention, lie some fundamental discomforts in our society. I shall do my best not to preach a sermon because that would be to presume noble Lords' consent to a process to which they might not have given their consent.
The figures quoted by the noble Lord, which are readily available, suggest that nine-tenths of us are in favour of organ donation for transplant purposes but only one-fifth of us have done anything about it. Underneath those figures lie some matters which, although difficult to get at, it is important that we try to understand. It is not enough to say that people are rather lazy, that they have not been told, that we do not have systems simple enough for them to understand, or even that we do not have in place a system of presumed consent, of which I am also in favour.
There are reasons why it is difficult for government to institute such a system. They are similar to the reasons why it is difficult to get that 20 per cent figure up to something nearer the 90 per cent who, when asked in the abstract, say they are in favour of it, but when it is necessary to say something about themselves, suddenly find that they have more pressing things to do.
The Christian tradition speaks about death in rather matter-of-fact, commonsense and down-to-earth ways. Every Ash Wednesday people are reminded of that in the words,
"You are dust and to dust you will return".
Members of this House will have heard spoken over other people words which will one day be spoken over all of us:
"We brought nothing into this world and it is certain we can carry nothing out".
The difficulty is getting people to take seriously the fact that that applies not just to their possessions, their house and the money in the bank, but actually to their body. We did not make what we stand up as and we have to let it go. And the fact that there is a great discrepancy between people's abstract conviction that organ donation is good and their willingness to do anything about it is, in my opinion, due to the serious inner muddle we are in about death in our society.
The conversations, to which the noble Lord drew attention as a vital necessity, do not happen because conversations about our dying are difficult for us. I believe that underneath both our unwillingness to sign donor cards on the one hand and government unwillingness to institute systems of presumed consent lies that unresolved muddle.
Of course, events such as those at Alder Hey raise issues of trust which do not help. It is true that people have anxieties that need to be resolved about what they might call "predatory" medical professionals who seek to obtain organs and perhaps might not treat them as well as they otherwise would when they near death. Those things are true, but I do not believe that either of those sorts of muddles should allow us to surrender to the view that "my body is a piece of my property".
It is obviously right that if people have personal reasons for wishing to withhold consent, they should be able to express them. And it is also right that family, relatives and those in close relationships should be treated with sensitivity and should have the right to express an opinion. But in my opinion the rightness of that kind of sensitive behaviour should not lead us to take the view that a body is a piece of personal property, because it is not. I do not think that property rights should extend to it.
I repeat that I am not against people being treated sensitively. Indeed, I strongly object to any suggestion of people being pressured to give consent. That is one of the reasons that a presumption of consent would in fact be a good thing. I am against pressure and I am against people being treated with insensitivity about something that is very important to them. The proper arena in which to discuss this matter is not the arena of property rights, but the arena of reverence. It is a basic human instinct that the body of a person is to be treated with reverence. Part of the reason why people go to enormous lengths to have the bodies of loved ones returned from distant places is because there is something inalienable about the relationship between a person and their body. Not to know where someone's body is, is not to know something that we feel is very important.
Having said that, is it not also part of reverence that we should prepare ourselves for a decent letting go? Is the only form of reverence in our society to be hanging on? Is it not to be a proper letting go? I ask the question. I am fairly clear myself what I think the answer should be.
In educational terms, we are also lacking in resolve in getting our young people to discuss the issues of life and death—the end of their own lives. You are a mortal person even when you are 14 years old, and it is not too early to think about it. One of the reasons why the HIV/AIDS epidemic had such a profoundly religious effect on large numbers of young people is that it required them to address and discuss the issues around their own and their close friends dying—something that young people are not invited to do often enough.
I hope that it would be true of most of us gathered here today that we have had such conversations with our loved ones, both those whom we expect to die before us and those whom we expect to die after us, although the fact that we cannot know those things is important. I hope that it is true that all of us have had such conversations as to make questions about consent and presumption of consent something that is fairly well settled in our minds.
If we have had those conversations, we will know how creative they are, how full of love they can be. In that atmosphere of love, a reverent letting go becomes possible. You do not have to batter people with their sense of obligation towards ill people. You do not have to tell them just how many people die as the result of people not signing donor cards. All you have to do is to say, "I shall love you till you die, and I shall love you beyond your death, and I shall reverence your body, and I want you to. And that will mean, among other things, being prepared to let it go".
I believe that, as a matter of urgency, our society needs to deal with the issues raised by the noble Lord. He is right to say in this Chamber that people are dying as the result of our failure to get ourselves into some resolved condition about this matter. All I seek to do is to say that underneath our difficulties in resolving these political and legislative questions lie inner and spiritual questions which people have to resolve whatever their faith and which it is our responsibility, if we are formers of opinion at all, to encourage people to discuss in an open, honest and gentle way before it is too late.
There is another earthy, commonsense, biblical text which is addressed to the person who decided to build more and more barns for his possession. That text is:
"You fool, this night your soul will be required of you".
We need to remember that the word "soul" in that context includes the whole of a person's life. We should encourage a level of discussion among our children, with our loved ones, in our society at large, which is based on the presumption that this night your body might be required of you.
My Lords, I thank my noble friend Lord Hughes for his very moving words on an issue, which I am sure that we all agree, is hugely important. I have a personal interest in this matter. My late husband died of kidney failure several years ago. He had been on dialysis for some time. Twice a week we had to get him ready to be taken to hospital for that process. It certainly prolonged his life, but it is not pleasant. I know that he was not very happy about it.
I support the points made by my noble friend Lord Hughes on the need to address seriously the very significant shortfall between the level of organ donation in the UK and the number of people currently waiting for a life-saving transplant. As my noble friend stressed, there are presently more than 6,000 people on the waiting list for a transplant, of which 90 per cent are awaiting a kidney; and that does not take into account those who will require one in the future.
At the launch of its progress report on transplantation last autumn, UK Transplant admitted that there was a critical shortage of donated organs. In 2003 alone, more than 400 people died while waiting for an organ. It is clear that serious action needs to be taken to address this situation.
The time has come for the Government to consider whether the current system of consent offers the best means of securing the increase in the level of organ donation that is needed. I share the view put forward by my noble friend Lord Hughes that a system of presumed consent with an opt-out would maximise the chances of significantly boosting organ donation levels. I should like to raise a number of points in support of this case.
I start by reiterating the comments of the noble Lord, Lord Hughes, on the need to ensure that when it comes to organ donation the wishes of the deceased are paramount. My noble friend powerfully highlighted how the current system could undermine this principle by allowing relatives to overturn consent to donate, even if it had been explicitly made.
In January 2005, the National Kidney Research Fund published the results of a survey of public attitudes towards organ donation across the UK. The results showed that 65 per cent of people surveyed claimed that they were not aware that under the current system relatives could refuse donation, even if they had signed up to the organ donor register.
However, relative refusal is a key factor preventing organs being made available for donation. Relatives are often unsure of the deceased's wishes and therefore revert to the default position, which under the current system presumes that organs will not be donated. This uncertainty is the main reason behind the 40 per cent refusal rate by relatives in this country.
Moving to a system of consent where it is accepted that organs would be made available unless relatives objected would help to alleviate some of the pressure on relatives to make this difficult decision. It would also help to increase the number of organs available for life-saving transplantation.
It is important to note, however, that presumed consent would work best as part of a package of measures to increase organ availability. As the Minister will be aware, Spain has one of the most successful transplantation programmes in the world. Its success is the result of a move to presumed consent, coupled with an investment in measures to maximise the opportunity this system presents to increase the number of transplants performed. These measures include the establishment of a dedicated transplant co-ordinator in every hospital to ensure that opportunities to source organs for donation are not missed. I would like to see the same measure put in place in this country.
In addition, there should be proper training for ICU staff and other healthcare professionals in approaching patients and relatives about organ donation on a routine basis. In Spain, every hospital is licensed to conduct transplants and has a dedicated transplant team. This is comprised of on-site doctors and nurses who are fully trained in approaching patients and relatives about donation, and monitored to ensure that they routinely undertake this activity.
The current system is failing to improve the rate of organ donation; it is failing those who would like to donate but whose wishes are not upheld; and it is failing the thousands of patients currently waiting for a life-saving transplant, who face the prospect of dying before they can receive one. Because of my own personal experience I have myself become a donor and I have a donor card. I call upon the Government to address this challenge once and for all and to make a real difference to organ donation in this country.
My Lords, I apologise for being late. Matters moved rather faster than I anticipated. I shall therefore be unable to speak to individual points made by my noble friend Lord Hughes. I hope that I am not too repetitive but I fear that I may be on some points.
The debate is, in effect, a continuation of the useful exchange in your Lordships' House on 25 October last year. This was stimulated by Amendment No. 41, which was tabled by my noble friend Lord Chandos, at the Report stage of the Human Tissue Bill.
For me at least, that was a rehearsal for this debate and others that I am sure will follow in due course. At that debate I was disappointed that my noble friend Lord Warner on the Front Bench could not then accept the spirit of the amendment, the purpose of which was to move to presumed consent with opt-out, in view of the excellent case made in its favour by every speaker.
My noble friend was able to tell us in his reply about the success of the Government's UK Transplant Framework initiative in boosting the number of people on the donor register and an increase in donations. Perhaps my noble friend on the Front Bench in his place will be able to give a progress report on organ donation in the nine months since then. However, I doubt that there will have been a marked increase.
Surely the time has come to look seriously at the wide discrepancy between the rates of organ donation in other European countries and in the UK. As we heard, in several countries, the transplant rate is more than double that in the UK. In the case of renal failure, that has led to a reduction in the need for expensive and unpleasant—though of course life-saving—dialysis and a waiting list for transplants which is much smaller than ours in relation to their populations.
My noble friend said then that in Spain, which has the most successful transplant programme in the world—as described by my noble friend Lady Turner—the presumed consent law was never used; that relatives' permission was always sought and they were free to object—in other words, to opt out. The presumption in other words could be overturned. Whatever the state of the law, consultation with relatives wherever possible must remain a priority. Presumed consent in no way means that organ donation must be compulsory.
It is possible that in France—which my noble friend Lord Warner cited—presumed consent got a bad name because it was applied insensitively. Whatever the law, it requires great tact and skill to make the request, since relatives are likely to be traumatised by the sudden death of their family member. It is best if those making the request have special training. What my noble friend did not say was that if no relatives could be located a presumed consent law allows the donation to proceed, whereas here it does not.
Regarding the sensitivity needed, I can do no better than quote from the speech by my noble friend Lord Chandos last October:
"It is never easy to approach relatives about organ donation at a time of great sadness, particularly if the law states that organs are not available for donation unless appropriate consent has been given. It is right that the wishes of the deceased are paramount in this situation and that relatives are fully consulted ahead of any decision. However, the current system does little to encourage health professionals to make the approach in the first place, and organs are lost as a result of a failure to request donation. Many bereaved people have in fact expressed regret at not being asked at the time whether they would consent to donating their loved one's organs".—[.]Official Report, 25/10/04; col. 1128, 25/10/04; col. 1128
I had personal experience of this when a young relative was killed in a road accident. The hospital staff were too preoccupied and somewhat traumatised and could not bring themselves to ask his distraught mother for permission to remove organs. She now regrets that she was not asked. If it were the norm for organs to be removed when appropriate and that was understood by the population as a result of public discussion, it would be easier to approach relatives in such situations.
My noble friend on the Front Bench knows that as the noble Lord, Lord Walton of Detchant, said in October's debate there has been a sea change in the attitude of the medical and other caring professions. For some years presumed consent with opt-out has been British Medical Association policy. I suggest that it is high time the Government began to prepare for such a change in the law and to initiate open public discussion of the issue, which was suggested most eloquently by the right reverend Prelate the Bishop of Worcester.
My Lords, I congratulate my noble friend Lord Hughes on introducing this debate and on his long-standing commitment and doughty support for the cause of organ transplantation. I declare an interest, to which my noble friend referred, as chair of the Human Tissue Authority, which has responsibility for licensing the banks that store tissue and for guidance on matters of transplantation. As he said, we are currently out to consultation on that guidance; I should like to say a word about that, although the House will understand that responsibility to Parliament for the work of the authority lies with Ministers, not with myself.
First, I should like to make some comments which arise not from my current responsibilities but from the fact that during my term as a Minister at the Department of Health, I was responsible for transplantation. There is a need to encourage and educate, and we must confront the issues underlying whether people sign up to a consent form or whether, with a system of presumed consent and the ability to opt out, we could encourage donation.
It is tremendously important that we stress the positives—my noble friend Lord Rea referred to some of them—of a decision to donate. In my time as a Minister, I came across families who derived ongoing and long-term comfort from the fact that something good had come out of their tragedy. Being a potential donor by signing up gives the opportunity for good after your death in the same way as a donation to a charity in your will gives the opportunity for good after your death.
I echo what has been said about the need to confront the difficulties some hospital and medical staff have in discussing these issues with relatives. In a way, it is not sensitivity not to discuss them. It is certainly very difficult, as people are in great pain and distress, but not giving them the opportunity to consider the comfort they might receive in the future from the sense of the good that has come from transplantation is doing them a disservice.
Staff need encouragement and training in this respect. Evidence shows a difference in refusal rates by relatives depending on who does the asking. If we have the right people who understand the issues and have seen patients and relatives in these circumstances before and can approach the issues sensitively, donation rates go up, not because of pressure but because of proper explanation. That is one of the most important ways forward.
Another area in which we have to make progress is in ethnic minority communities. It is a sad irony that because of the pattern of disease among those communities, the need for transplantation, particularly kidney transplantation, is greatest in the ethnic minority communities which have the least tradition of signing up for donation. Sometimes that is because of a misunderstanding of what religious leaders will say is the position of many ethnic minority religions on transplantation. A lot of work has been done by those religious leaders to dispel some of those myths, but it is very important that UK Transplant, which has a responsibility for encouraging donors and trying to increase donation rates, has a sensitive and focused campaign, because we know that the success of transplantation will be increased if the donor is from the same ethnic community. So that is an important area in which to work.
If I consider the issue of presumed consent, I find it difficult to reconcile the spirit of the remarks of the right reverend Prelate the Bishop of Worcester about the need for us to retreat from the sense of ownership of our bodies, tissue and organs—a view with which I have a great deal of sympathy on a personal level—with the legislative zeitgeist.. The Human Tissue Act and the Mental Capacity Act focus on asking for more details and more explicit, more overt consent to the use and treatment of our bodies before death, during illness and after death. There is a divergence in attitudes between one which says, "Post mortem, the retention of as much as a slide for medical research purposes has to have explicit consent" and a proposition that transplantation of a whole organ, which is a very important issue because it can give life to somebody else, should be on the basis of presumed consent. We have to face up to some of the anomalies in the direction of legislation that we are taking forward.The Human Tissue Act and the Mental Capacity Act focus on asking for more details and more explicit, more overt consent to the use and treatment of our bodies before death, during illness and after death. There is a divergence in attitudes between one which says, "Post mortem, the retention of as much as a slide for medical research purposes has to have explicit consent" and a proposition that transplantation of a whole organ, which is a very important issue because it can give life to somebody else, should be on the basis of presumed consent. We have to face up to some of the anomalies in the direction of legislation that we are taking forward.
So I in a way sidestep the issue of presumed consent, because an enormous amount can be achieved in other ways. I have talked about some of those ways; for example, educating communities in encouragement; ways relating to the people who ask; and the manner in which we can become more efficient in focusing on potential donors and making sure that they and their relatives are approached.
Perhaps I may say a little bit about the impact of the Human Tissue Act on this. Although the emphasis of that Act is very much on consent, the other aspect of requiring that consent is the additional respect that is given when consent has been signified. Although I am not sure that the 1961 Act ever gave relatives a right of veto over an expressed desire to donate, a culture had grown up as if such a veto existed. It is explicit in the Human Tissue Act 2004 that such a veto does not exist and that the wishes of the person who has expressed them and wants to donate are paramount. It is in that spirit that the draft guidance to which my noble friend Lord Hughes referred has been put out for consultation. It is in the spirit of saying that that person's wishes are paramount, but that relatives should be aware, and made aware by hospital staff, that that is so.
It is a necessity, in practical terms, to know whether medical problems have occurred since someone has signed up to the organ donation register, when people are checking on availability and suitability for donation. There are practicalities that mean that relatives will need to know that they will be able to give important information. Therefore, an approach based on the fact that consent by the person potentially donating is sufficient to make this a legal act is very important—and that has to be understood. I do not believe that that undermines the need for those who do signify that consent by signing up to the organ donor register also to have discussions that will make decisions easier for their relatives.
The codes of practice are out to consultation. If they are being read as an impediment rather than a context in which the wishes of the person who has died are paramount, it is important for us to know that. I am sure that many noble Lords and people elsewhere will contribute to the consultation and that their responses will be taken into account when we draw up the final codes of practice.
I should like to say a brief word or two about live donation, because that is one of the positive stories. It is an increasing area, and the Human Tissue Act 2004 gave the responsibility to the authority to take over that which is currently undertaken by ULTRA—the Unrelated Live Transplant Regulatory Authority. There are proposals in the consultation document, which I agree with, that to an extent with altruistic donation but certainly with paired donation there are real opportunities to make progress. Paired donation is when someone who needs a transplant has someone—a close relative or a partner—who wishes to donate but is incompatible and cannot do so for medical reasons. The proposition is that they could be paired with another couple in the same situation but where the compatibility goes from husband A to husband B and wife A to wife B. It is simply a mechanism to allow those who have a potential donor, when the donation is barred by medical incompatibility, to find a couple in a similar situation and for both transplants to go ahead.
Obviously there must be safeguards, as it is a new process and there will be a need to develop some expertise. The authority will have the responsibility for doing that. But with paired and altruistic donations there is a possibility for real improvement—and as medical science progresses, that may be possible for both liver and kidney transplantation. I believe that there is a great possibility to give an opportunity to those who have died, those who are currently perfectly well but could be registered as donors and those who are living, to be part of something hugely important and unifying in our community—the gift relationship.
My Lords, I, too, congratulate my noble friend Lord Hughes on bringing forward this important debate. My youngest daughter has been a diabetic since she was four years old, and her experiences have hardened my belief that the only way in which we can cope in future with the number of people suffering from kidney failure is by a policy of organ donation in which people opt out rather than opt in—in other words, by presumed consent.
The number of people in this country suffering from diabetes is increasing at an alarming rate. The number of people surviving with type 1 diabetes is also increasing. There is a need for everyone from 11 years onwards to be screened annually for kidney problems to slow further damage to their kidneys.
Approximately 25 per cent of people with type 1 diabetes develop kidney failure. Diabetes is now the single commonest cause of end-stage renal failure, accounting for 16 per cent of new patients taken on to renal replacement therapy each year. That is about 750 new patients in England alone at a cost of £27,000 per patient per year. That leads to the cry for more and more funding. Diabetes currently accounts for 5 per cent of the National Health Service budget. It is true that often the more successful we are in medicine, the greater the demand on the service and the greater the cost.
My daughter who has kidney failure is having her three days a week dialysis in Hull, where she lives. There are three wards—the main ward and two annex wards. So the staff are divided between three very busy wards. Despite the use of satellite wards in towns such as Bridlington and Scarborough, there will come a time when those wards will not be able to cope with the demand in the huge area around Humberside that they serve. Will the new dialysis unit that the patients were told was planned some three years ago be built in time? That is a question to which I am sure the staff, patients and MPs would like an answer. I am also sure that Hull hospital trust is not the only trust facing such problems, for overall more than 1,000 people with diabetes go on to renal dialysis every year. The balancing of capital and revenue funding is never easy for any hospital trust.
One of the answers to easing the pressure on units such as the one in Hull is to have more kidney transplants. The answer to that is to have a wider range of kidneys to match with patients. It surely makes sense to have an opting-out system for organ transplants. In the United Kingdom between April 2004 and 31 March 2005, a total of 1,783 people received a kidney transplant.
My local newspaper, the Staffordshire Evening Sentinel, recently ran a campaign to get more people to sign up to organ donation. Within a few weeks, more than 1,000 people had put their names forward. It was a good start and very many people said that, once they were alerted to the need, it seemed a sensible thing to do., recently ran a campaign to get more people to sign up to organ donation. Within a few weeks, more than 1,000 people had put their names forward. It was a good start and very many people said that, once they were alerted to the need, it seemed a sensible thing to do.
It is possible, with increased availability of organs and proper screening, that pre-dialysis transplants could become more widely used. If organ transplants become more widely acceptable, it is also possible that living organ donations will become more acceptable. Indeed, in the past year, 475 people were given a kidney by a friend or relative—the highest number of living kidney transplants ever recorded in the United Kingdom.
There are too many patients waiting bravely for the day for a compatible organ to become available. We owe it to them to think in a less sentimental way about how our bodies could in the future help someone to live a full life. I am in favour of presumed consent. I strongly support my noble friend's campaign.
My Lords, I join in the general expression of thanks to my noble friend Lord Hughes of Woodside for initiating this important, fascinating and thought-provoking debate.
I do not intend to speak for long, not least because I hope very much to be somewhere quite high up a hill in north-west Scotland in about 48 hours. That is not quite as irrelevant as it may sound as I want to make a number of points about a return to full and normal life after a transplant programme. As some Members of the House will know, about 17 years ago I suffered severe heart failure but was hugely fortunate in that a heart become available, as they say, and I had a heart transplant in 1988.
I wish to make one or two points based on that experience. The first is that the transplant programme depends on a great many people. Everyone who is prepared to participate, either by being donors themselves or by being families and friends of people who are able to be donors, contributes to that process. Whether a transplant is successful or unsuccessful is largely irrelevant to that; everyone who contributes to the process should feel some sense of ownership of it. I am often asked whether I know where the organ that is in me now came from. The answer is no. In a sense I do not want to, because I do not want to create the impression that people should be thinking, "We made a donation and it worked", or "We made a donation and it wasn't successful". Everyone who contributes to the process is an important contributor.
The second thing that I want to say is about transplant teams. There is a tremendous enthusiasm for believing that somehow the transplant surgeon is the genius who does it all. Actually, it is the team in any transplant hospital that achieves the full result. I really mean the team; it is not only the surgeon. There are very important people such as transplant co-ordinators, all the doctors, the nurses and the staff. However, I also mention the people who produce the food; you have to be careful. The cleaners are hugely important. There are some debates about cleanliness in hospitals, and the transplant programme would not work if hospitals were not sufficiently clean to save people highly vulnerable to the kind of diseases that I fear have become more common.
Transplants really can give you a complete life back. Since I had my transplant, I have successively been general-secretary of the Labour Party in Scotland, chief of staff to John Smith as leader of the Labour Party, special adviser at the Scottish Office when we were putting through the devolution White Paper and Bill, and for six years a Member of this House. Whether that represents a return to useful life I leave to your Lordships to judge, but it has certainly pleased me a good deal.
I was particularly interested by some of the comments made by my noble friend Lady Hayman, because some of the debates that we have had in the papers about tissues and body parts have been potentially damaging. The idea that was allowed to be built up under pressure in the media was that, if there were a slide with a little sample on it—unless everything had been identified—families could not find closure. That had the potential to be hugely damaging to the whole idea of transplantation.
The contribution of the right reverend Prelate was fascinating on that. The idea that we could move to a much more informed debate on the issues in the Churches, the body politic and everywhere else could be beneficial. I too believe in presumed consent, but I would be hugely nervous about going down that road by diktat. It has to be understood, agreed and openly talked about. If the Government were to move towards that—I encourage them to do so—I hope that they would say that that was the way in which they were minded to go, and that they would engineer a huge debate and understanding about all the issues involved.
That would be complex, but the issues affect all of us. There are very few absolute truths but, at some stage, all of us will have a body that is no longer any use to us, because we have gone wherever we hope that we are going to go. We all have some interest in that debate, yet ironically, as the right reverend Prelate said, it is apparently one of the most difficult things for anyone to talk about. I hope that we move up many gears in the discussion of the issues.
There has been a lot of talk about kidneys, but there are possible alternatives in other transplant areas, at least in terms of stopgaps. A huge amount of useful work has been done of late on artificial hearts, which give people a bit of time and may eventually be an alternative to transplants. But, fundamentally, there is a huge difference between the demand for transplanted organs and the number available. If we are going to take that on honestly, we have to do that in the context of a serious debate, involving the young and old—everyone—about where we are going to go on this. The benefits of transplantation are now more understood and the extent to which people can return to a full and useful life, not just slightly better, is beginning to be understood and needs to be more widespread.
I shall conclude with a final thought. About 10 years ago, I was trying to reach the top of Mount Kilimanjaro in Tanzania. I gave up, not because I thought I could not do it, but because at 19,000 feet the lack of oxygen so exactly replicated the feeling of having severe heart failure I decided that, as a holiday, it was not a great triumph. I had my photograph taken at the bottom, beside the notice that said, "If you have any problem with your heart you must not go beyond this point". I did, because it was my previous heart that I had problems with. But the fact that I was there convinced me that you could return to a full life and if people began to understand that and the contributions they could make by being part of that transplant process, we could make a major breakthrough.
My Lords, I thank the noble Lord, Lord Hughes of Woodside, for giving us the opportunity not just to return to an extremely important issue, but also the privilege of hearing the speeches this morning. I should tell the noble Lord, Lord Elder, that there is no doubt on this side of the House that his transplant was very much a force for good and I wish him all the best when he returns to God's own country tomorrow.
Sadly, for me, this is an issue of which I have become very much aware. Two years ago, Darryl, the only child of my friends Joe and Grace Desa, died at the age of 15 of a brain haemorrhage. The anguish of that tragedy for Darryl's family was unimaginable. We have witnessed the courage and great faith with which they have carried on and kept Darryl's spirit alive. The donations of organs and parts of organs from Darryl, including his cornea and his skin, have given hope and life to at least 10 other people—the youngest of whom is a baby of two months. I also commend the staff who recently assisted Joe and Grace to take part in a video, "Patient Voices", which is designed to encourage greater donation of organs from within the black and minority, especially Asian, communities. As the noble Baroness, Lady Hayman, said, there is a lack of organs for transplant and there is a great need within those communities.
I note that the Department of Health's first review of the 10-year transplant framework for England stated that the department would work with UK Transplant to look at why donor refusal rates from black and minority communities are twice as high as in the rest of the population. The review then outlines steps that UK Transplant will take, such as a detailed analysis of the potential donor audit and a working party to investigate possible solutions to that higher rate of refusal by relatives. Those are welcome.
It is also good to note that, in addition to the National Kidney Research Fund's ABLE programme (A Better Life through Education and Empowerment), which focuses on raising awareness of, and lowering the incidence of, kidney disease within at-risk groups, such as BME communities, there will be a major new study into why donation rates differ in different groups. This important study will be led by Dr Anthony Warrens, senior lecturer in renal medicine and immunology at Imperial College, is very welcome, and will be funded by the Big Lottery and not directly by the department. I hope that the evidence from that research will enable religious and community leaders to do what the right reverend Prelate described in his very moving speech and create that arena of reverence within those communities and for the rest of us.
During the passage of the Human Tissue Bill, my predecessor as health spokesman, the noble Lord, Lord Clement-Jones, described the Liberal Democrat's policy on organ donation. As ever, with complex medical and ethical issues, there are conflicting views within political parties as well as between them. We are no different. Some Liberal Democrats and members of other parties passionately believe in an opt-out system, while others believe with equal force that donation is, and must remain, the gift of an individual, not an assumption by the medical profession and that the current opt-in system should remain. Whichever of those schools of thought one belongs to, it can be agreed by all that there is a compelling reason to increase the number of overall donations, as the number of people awaiting transplants greatly exceeds the availability of suitable organs.
The Government set out their 10-year framework, Saving lives, valuing donors, in July 2003. Given that the Human Tissue Act has now established the legislative framework and other relevant changes in the law will come into force, such as the Mental Capacity Act, it is Parliament's responsibility at intervals to reassess whether those strategies are working as effectively as they might., in July 2003. Given that the Human Tissue Act has now established the legislative framework and other relevant changes in the law will come into force, such as the Mental Capacity Act, it is Parliament's responsibility at intervals to reassess whether those strategies are working as effectively as they might.
The Mental Capacity Act is extremely important in this context. During the passage of that Bill, many of us who were extensively involved in it discussed at considerable length the involvement of people who lacked capacity in matters such as medical research and treatment—and in donation. For me, the defining statement was made by a disabled person, who asked, "Why do people presume that people who lack capacity have nothing left to give?". That is an important right for people who lack capacity. But, as other speakers have said in this debate, it has to be informed consent and the matter must be treated with the utmost sensitivity by those who are assisting people with making that decision. So, can the Minister say whether the Department of Health is working with the team from the DCA, which is looking at the detailed implementation of the Mental Capacity Act?
Various speakers in the debate have talked about the different rates of donation across the European Union, in particular, that in Spain. There has been much speculation about the factors that might contribute to the difference between countries. It seems most likely that the increase in donations stems from, not teams, but teams of teams, as the noble Lord, Lord Elder, said, working across the country. In Spain, the formation of a national transport organisation and the establishment of a network of specially-trained hospital-based physicians and nurses has been an important factor in why their rates have increased.
UK Transplant is to be involved in two major projects, funded by the European Commission, which will review differing approaches to donation and transplantation across seven countries and the UK. Perhaps the Minister can tell the House when the results of that comparative study are likely to be made available. I believe that in Spain they have found some answers to some of the questions that we are asking. We need to know those answers as quickly as possible.
Can the Minister say how and when the Government intend to incorporate the EU Tissues and Cells Directive of March 2004, which is due to come into UK law by April 2006? Both of those comparative pieces of work will be of enormous importance to people in this country.
The process of co-ordination of organ retrieval is, as the noble Lord, Lord Elder, told us, dependent on teams of people and on rapid access to operating theatres and to intensive care beds. All of that needs to be in place for a successful system to work. UK Transplant has increased the number of transplant co-ordinators. However, some organisations, such as the Royal College of Surgeons, are concerned about the current shortage of transplant surgeons, leading to transplant units not being fully operational, and organs that are available not being used. That is a cause for concern, to which, in the review of the 10-year strategy, I believe we should return to determine the causal factors.
At national level, the Government have proposed, as a part of the review of arm's length bodies, that UK Transplant be merged with the National Blood Authority to create a new National Blood and Transplant Authority. I understand entirely the Government's desire to ensure that there are as few bodies and as little room for duplication as possible, but I wonder whether it is right to assume that such an organisation will be better placed to work with PCTs and with acute trusts to ensure that the planning of donation and co-ordination of transplant services across the country improves.
I want to end where the right reverend Prelate the Bishop of Worcester encouraged us to be, in the arena of reverence. I believe that he was absolutely right that we, as individuals and as health professionals, face the utmost difficulty in addressing those issues with individuals who are likely to be in that position. So I conclude, rather strangely, I suppose, by advertising Deborah Hutton's book, What can I do to help?. Sadly, I have had occasion to read that book this week. I needed to read it and so did a friend. In an extremely practical and helpful way, Deborah Hutton has given people the tools that they may need to create that arena of reverence for an individual about whom they care.. Sadly, I have had occasion to read that book this week. I needed to read it and so did a friend. In an extremely practical and helpful way, Deborah Hutton has given people the tools that they may need to create that arena of reverence for an individual about whom they care.
Her approach, alongside that of the right reverend Prelate, has given guidance to those frontline professionals who have to have those most difficult of conversations, conversations that we never want to have and for which we never plan. If your Lordships have not had a chance to read that book, please do buy it and read it.
My Lords, I too thank the noble Lord, Lord Hughes of Woodside, very much for introducing the debate and for giving us such a thoroughly researched and sensitive speech. Indeed, I have found all the speeches very helpful and stimulating, including the spiritual dimension from the right reverend Prelate the Bishop of Worcester.
Fifty years ago, when I was a medical student, one of my colleagues on a ward round was asked how he would treat a lady with kidney failure. When he suggested that a kidney transplant should be done, he was told that that was a stupid idea. Of course, it had never been done before, but two weeks later Dr Joe Murray in Boston carried out the first kidney transplant between identical twins. For that he was awarded the Nobel prize. The man is still alive. Incidentally, a few years later, that same medical student went to work with Dr Murray in Boston and became the very distinguished transplant surgeon, Sir Roy Calne.
In the 1970s, I used to do kidney transplants and I found it one of the most exciting and rewarding of all operations. Kidneys would come from all over the UK and from many countries in Europe. The donor kidney would arrive, wrapped in ice, and as expeditiously as possible, one would join up, first, the vein and then the artery. When the clamps were removed, this cold, lifeless kidney would suddenly blush bright red and spring to life. Some kidneys began to secrete urine immediately. Those were always the French kidneys. When I inquired why that should be so, I was told that it had something to do with French wine. Later we were to find out that there was another explanation.
How right the noble Lord, Lord Elder, was when he emphasised the great importance of the whole team. How delighted with him his transplant team must be and how immensely impressed we are here with his great achievements.
The benefits of organ transplantations have been obvious to all and have been discussed. Heart and liver transplants will save lives and those of the kidney and pancreas will greatly improve the quality of life and are a much more cost-effective way of managing the patient. Kidney transplants free the patient from being dialysed three times a week, for many hours at a time.
A great friend of my daughter was born with liver disease, which eventually gave her rickets and kidney failure and she required dialysis three times a week. She was then 18 and I offered her a job in my department at Guy's as a secretary and she proved to be the life and soul of the unit. She insisted on being dialysed at night so that she took no time off work. The effect on the rest of the department was dramatic: suddenly no one else took any time off work. How could they? She was a most uncomplaining, charming girl, but I am afraid that things deteriorated so much that if she was to survive she would need both kidney and liver transplants. Those were carried out and her life was totally transformed. She has now been ordained and is of great help to very many people.
As has been mentioned, in the UK there is a great shortage of kidney donations and, I am afraid, the shortage is getting worse every year. One way of alleviating the problem is to expand, as has been mentioned, the number of live donors. The record in the UK is not nearly as good as it is in the United States, Norway and Sweden, where it is up to 50 per cent of transplants, whereas in the United Kingdom it is only about 25 per cent. However, there is some good news, as 10 years ago it was only 10 per cent, so things have improved a little.
ULTRA, the Unrelated Live Transplant Regulation Authority, was set up by the Thatcher Government and has been very successful in preventing trading in organs. ULTRA checks very carefully on the relationship of potential live, related donors. They have to be seen by an independent third-party doctor, who has to ensure that the potential donor is in fact a genuine relative. As noble Lords know, poor people from developing countries were being paid to give their kidneys when they were not relatives at all, and I am afraid that that practice continues in many countries. While we are on the subject of paying donors, clearly it would be reasonable to give some payment to donors in compensation for time lost from work. That is now possible in this country, but unfortunately there is not enough money and it is not being properly accessed. Can the Minister comment on that?
Another way of helping the problem, as has been mentioned, is the altruistic donor concept, which is allowed in the United States. A donor will offer to donate his or her kidney to a transplant centre purely for altruism. He receives no reward and does not know who will receive the kidney. As the noble Baroness, Lady Hayman, has already mentioned, another ingenious practice is carried on in the United States called "matched pairs". That practice is well supported by those who work in the transplant world. A pair of potential live donors are found not to match well with the intended recipient, but are found to match the other recipient to whom they are not related. The deal is that both donations are carried out, much to the delight of all. However, there is a slight problem in that sometimes after one transplant has been carried out the other side refuses to donate. It is a perfectly allowable practice, and it is quite common for live donations to be made between husband and wife, or partners, and between close friends, and probably as many as one third of live donations are in that category. Incidentally, here in our region, under the direction of Mr Geoff Koffman and Mr John Taylor, of the 140 kidney transplants that they did last year, 60 were live donors, which is a high proportion. That Guy's/King's/St Thomas's group has also carried out over 100 pancreas transplants.
The excitement and thrill of a kidney transplant operation is in marked contrast to what precedes it. One of the most difficult tasks that doctors are called on to do is to ask permission of relatives to take the kidneys and other organs from their loved one who is dying. Noble Lords can imagine just how upsetting those occasions can be, not only for those who have been bereaved but for the team who wish to take the organs. Often the donor is a young person, who perhaps has taken an overdose after a heated row with one or both of their parents. There is a beautiful young lady aged 15 dying in front of one, and one has to ask the relatives for permission to take the kidneys. It is a most traumatic experience.
However, sometimes the relatives are pleased to think that some good will come out of their tragedy. Two people may be given a new life; someone may be given corneal grafts to enable them to see or a liver transplant enabling them to survive. As many noble Lords have mentioned, there is often a heated discussion about whether permission should always be obtained. If the relatives are unwilling for donation to occur, many doctors will simply not force the issue. Others feel that if a donor has previously given written consent the wishes of the relatives should be overridden. If a potential donor has not registered as being willing to donate, or does not have a donor card on their person, or has not discussed it with relatives, even then 60 per cent of relatives will agree—although that figure varies quite a lot throughout the country. In London, it is much lower. We need to focus on that 30 to 40 per cent of relatives who refuse if there has been no previous registration by the donor.
The Government have promised a massive increase in donations, but it has not happened. The question is, "How can we help it to happen?". The cadaveric donor rate has been falling constantly over the past 10 or 15 years because the roads are becoming much safer and the number of fatalities is falling. Is there any law that might help? There is the hard law and the soft law. The hard law is presumed consent, where it is assumed that an individual wishes to be a donor unless he or she has opted out. If the potential donor had not opted out and registered the fact that he was unwilling to be a donor, the kidneys would be taken without waiting for the relatives to agree. That is the system of assumed consent, and it is still not universally acceptable. Only Austria operates that hard law. France tried it but gave it up because the doctors found it too traumatic to try to enforce a measure that they regarded as rather harsh.
Secondly, the soft law provides for people to opt in. If the potential donor has opted in the relatives would still be asked, but there would be an expectation that the organs would be given after discussion. The relatives would still need to be carefully handled to see if they were aware of whether the potential donor had changed his or her mind. The advantage of the system, as has been mentioned, is that it would take away the burden of responsibility from the relatives, who must make up their mind within 24 hours whether their loved one's kidneys can be taken. If they have just heard that they have lost their loved one, it is a difficult time to be faced with that kind of decision-making. That soft law would relieve the relatives somewhat of that traumatic responsibility. In the United States, the soft law does not operate, but it does in Belgium with great success. In introducing such a law there is always the risk of negative publicity and confrontation.
Spain has the highest cadaveric donor rate in the world. It introduced a soft law in 1980, but it made no difference whatever. What made the difference was that 10 years later a co-ordinator was appointed in every hospital to educate people about the need for donation; and then the effect was dramatic. There was a great increase in donations. It is doubtful whether the UK would ever reach the same levels of organ donation as in Spain because the death rate from road traffic accidents in Spain is so much higher than it is in the UK. Incidentally, with all due respect to the noble Baroness, Lady Turner of Camden, and the noble Lord, Lord Rea, Spain does not have a presumed consent law.
It is also worth looking at the experiment that was carried out in Exeter; namely, the elective ventilation of potential donors. When it becomes clear that a potential donor is brain dead, it is important to ensure that the kidney is in the best possible condition. Therefore, the patient was moved into an intensive care unit and ventilated until arrangements could be made to remove the kidneys. The problem with that was that there were far too few intensive care beds, and therefore the practice sometimes resulted in the exclusion of those who really needed intensive care facilities to be kept alive. That practice was stopped by the Department of Health. Of course, it is different if the patient is already in the intensive care unit and then suffers brain death; it is then perfectly reasonable to keep that patient in the unit on a ventilator until the kidney can be taken.
As the noble Baroness, Lady Hayman, mentioned, when members of ethnic minorities need a kidney transplant they are at a disadvantage, because they have to wait five times longer than Caucasians. That is a deplorable state of affairs. The reason is that the number of donations from ethnic minorities is much lower than Caucasians; and the number of ethnic minorities going into renal failure is high because of the high incidence of diabetes and high blood pressure. There is another problem; ethnic minorities have unusual blood groups and unusual tissue types, so clearly there is a need to be much more aware of the problem.
So, what is the answer? Introducing a hard law is unacceptable and introducing a soft law would still be controversial. Perhaps the ideal solution, as has been mentioned already, lies in education. We need a sustained and intensive campaign in schools, television and media of all kinds, especially targeting ethnic minority groups.
Secondly, we need to improve the work of co-ordinators by increasing their number so that every hospital has one, and we need to look at increasing the intensive care facilities so that elective ventilation for potential donors is possible and acceptable.
In summary, new laws may not be the answer. Rather we need an intensive educational drive throughout the country, but especially among the ethnic minorities and the younger population. Secondly, every hospital needs a co-ordinator; and, thirdly, we must have a great increase in the number of intensive care beds. These three simple measures would greatly increase the number of lives saved.
My Lords, first, I declare an interest as patron of the Kidney Wales Foundation, which is a very fine charity. Its mission, which I am sure we would all whole-heartedly support, is to promote excellence in renal research, treatment of renal disease and education, adhering to the highest standards of non-discriminatory practice.
I am grateful to my noble friend Lord Hughes for raising this important issue and to other noble Lords for their contributions raising issues of life and death, pain, joy and hope. It was a pleasure to listen to the very positive and informed contribution of my noble friend Lady Hayman and also of course the noble Lord, Lord McColl. As the noble Baroness, Lady Barker, said, it is has been a privilege to listen to and participate in the debate with people who are involved in the issue from so many different perspectives. I look forward to watching the video mentioned by the noble Baroness.
Sadly, as has been pointed out, there is a worldwide shortage of organs for transplant. In the UK, the number of people in need of a transplant continues to outstrip the number of available organs and many more people could have their lives saved or their quality of life significantly improved if more organs and tissues were available. We need more Murray Elders.
In July 2003, the Department of Health published Saving lives, valuing donors: A transplant framework for England, setting out the direction for organ and tissue transplantation in England over the next 10 years. It encouraged the NHS, commercial and voluntary organisations and the general public to play their parts to optimise the number of potential organ and tissue donors and increase transplant rates to save lives., setting out the direction for organ and tissue transplantation in England over the next 10 years. It encouraged the NHS, commercial and voluntary organisations and the general public to play their parts to optimise the number of potential organ and tissue donors and increase transplant rates to save lives.
Our aims are simple: to encourage 16 million people to register on the Organ Donor Register by 2010; to develop a transplant service that respects the dignity of donors and is sensitive to the needs of donor families, friends and transplant recipients; to increase transplant rates to save lives and to improve the quality of the lives saved; and to build a patient and donor-centred service which achieves standards of excellence built on a genuine partnership between the public, charities, the NHS and commercial organisations—a true partnership between those in need and those who can help.
As the debate today has highlighted, we must ensure that necessary initiatives are in place to increase donation rates and enable more people to benefit from a transplant. Last year we published a report detailing the progress that had been made in the 12 months following the publication of the plan. I shall outline just a few initiatives that are currently underway to help us reach the commitments in the plan.
Research tells us that the majority of the population supports organ donation. Currently over 12.4 million people—over 21 per cent of the population—have recorded their wish to be an organ donor in the event of their death, by signing on to the Organ Donor Register.
There are a number of ongoing publicity campaigns to raise awareness and encourage people to join the NHS Organ Donor Register and discuss their wishes about donation with their family and friends, which is particularly important if we are to minimise distress and ensure that a donor's wish is respected.
I was particularly grateful to the right reverend Prelate the Bishop of Worcester for his invaluable contribution to today's debate. He is absolutely right that we should be able to have conversations with our loved ones in a loving atmosphere about death, dying and letting go. Such conversations are crucial if we are going to encourage people to be at ease with donating their organs and allowing the organs of loved ones to be donated.
We must encourage discussion and education, as many noble Lords have said. Increased education is probably a key to finding more donors. The idea of a wide debate and more education about the issue is excellent and, to me, very attractive. I shall certainly raise the issue with colleagues in the department.
I am also grateful to the right reverend Prelate because it enables me to say that the leadership of all religious faiths in this country share many of his views about the donation of organs. We are working with religious leaders to produce a series of leaflets explaining their views. As my noble friend Lady Hayman so eloquently said, there is much needed sensitive work to be done with black and ethnic minority communities. Two special schemes are targeting people to raise awareness of organ donation issues in those communities.
Since 2001, the Government have provided some £10 million via UK Transplant to fund a number of hospital-based initiatives to boost organ donation. Currently, those include the employment of 25 living donor co-ordinators working with families considering live donation; the support of 14 non-heart-beating programmes to increase the number of organs from non-heart-beating donors; and more than 20 additional donor co-ordinators to support existing teams and provide in-house expertise within hospitals with neurosurgical services. In 2003–04 the changes led, for example, to 4 per cent more kidney transplants than the previous year, 12 per cent more heart transplants, 25 per cent more lung transplants and 23 per cent more living donors.
UK Transplant works in collaboration with a number of organisations to promote the register. Its partnership with the Driver and Vehicle Licensing Agency has been extremely successful. Last year, over 40 per cent of the people who joined the register signed on as a direct result of this partnership. The new collaboration with the European health card scheme will result in a further 4 million households this summer and 250,000 households per month from September to March receiving leaflets about the Organ Donor Register.
A key issue in increasing the deceased organ donation rate is reducing the numbers of relatives who object to organ donation going ahead. Currently, around 40 per cent of people who are approached for consent to deceased organ donation refuse. A number of initiatives are underway to understand the reasons why this occurs and to reduce the rate. UK Transplant has commissioned further research by Southampton University to try to discover more about the reasons for refusal. Clearly, when we have the research, as the noble Baroness, Lady Barker, said, we must act upon it.
Research to date clearly shows that the method of approaching relatives to discuss donation is a key element to donor rates. UK Transplant has therefore developed training programmes for donor transplant co-ordinators to share best practice. UK Transplant requires all personnel involved in the organ donation process to access the NHS Organ Donor Register on every occasion a potential donor is identified to establish whether the individual had registered their wishes. Training is absolutely key to the success of our system. I fully agree with my noble friends Lord Rea and Lady Turner on that issue.
In addition, UK Transport is also encouraging intensive care clinicians and transplant co-ordinators to adopt a collaborative approach to organ donation, so that all potential donors are identified. At an early stage, they approach families together to discuss the possibility of organ donation, so that relatives have time to consider the issue and their questions can be answered. Several hospitals have already adopted this technique and it is hoped that more will move to this approach, leading to a decrease in the refusal of relatives.
As a result of these initiatives and many others like them, we are seeing real results; 2003–04 saw the highest number of transplants ever performed in one year; and in 2004–05 we saw the highest number of living and non-heart-beating kidney donors ever recorded. There was also the highest number of combined kidney-pancreas transplants ever recorded and the highest number of cornea transplants for eight years.
We must not be complacent, but these figures are very heart-warming. Despite those successes, over 6,000 people are currently waiting for a transplant and, worryingly, recent projections show that the rapid rise in some diseases, especially diabetes, as vividly explained by my noble friend Lady Golding, and the rise in the ageing population, will mean that the demand for organ transplants could rise well above current trends. The number of people being treated for renal failure is rising at about 5 per cent per annum in England and Wales. Rates of other diseases like hepatitis C and alcoholic cirrhosis, which affect the liver, are also increasing.
It is vital that we fully optimise the opportunities for people to donate and that relatives and friends have confidence in our transplant services and agree to donation. My noble friend Lord Hughes and other noble Lords have argued that because of the shortage of organs we should change the basis of organ donation in this country from informed consent to presumed consent. That is, unless someone has registered their unwillingness to be a donor and opted out of donation, their organs could be taken and used without consent. I well recognise the strength of feeling that they have expressed.
Some people believe that that would lead to an increase in the number of organs available for transplantation. However, the Government do not at this time believe that to be the case. I note the many statistics cited. However, we believe that there is no clear evidence that in countries where the legal basis for consent is opt-out rather than opt-in, opt-out or presumed consent is the factor in higher donation rates.
Different cultural attitudes to the disposal of bodies, greater numbers of intensive care beds—as the noble Lord, Lord McColl, pointed out, more aggressive procurement policies and road death rates are all important. There are also ethical issues about presumed consent surrounding those who, for whatever reason, did not or could not know that they would have actively to opt out to prevent their organs being used.
We have considered the medical literature that argues in favour of presumed consent. As many noble Lords said, by far and away the most successful organ donation country is Spain which, although it has a presumed consent law, has never used it. The architect of the Spanish model, Dr Rafael Matesanz, has repeatedly stated that the legal basis of consent is irrelevant to organ donation. What is critical is the organ donation and retrieval system—in particular, the need to ensure that relatives are approached to discuss donation only by healthcare professionals with appropriate training. We return to training. As a result, relative refusal rates in Spain are low, usually less than 20 per cent.
We have looked closely at the experience of other countries with opt-out or presumed consent, and have found that in practice in those countries, relatives are asked for their permission for organ donation before it goes ahead. If they object and permission is not given, the donation will not go ahead. In any event, ensuring the clinical safety of the recipient of the organ requires that relatives are approached for health screening purposes, in case anything in the recent history of a potential donor could lead to an infection if an organ or tissue were given to another person. In practice, therefore, the issue of donation is discussed with relatives.
We must also be clear about the risks associated with presumed consent. In France, a public scandal about corneal donation without parental consent led to a 30 per cent drop in corneal donation and a 20 per cent drop in organ donation rates, which recovered only when the law was softened to ensure that all relatives were informed about the intention to remove organs and tissue and given the chance to object.
What is crucial is that there is public confidence in the system in place. We know that there is public support for our current system of donation where potential donors opt in to donate an organ rather than opt out or give presumed consent. In the responses to our consultation document, Human Bodies, Human Choices, of those who responded on presumed consent, two-thirds were against. We know that any measure aimed at increasing donation must command public confidence., of those who responded on presumed consent, two-thirds were against. We know that any measure aimed at increasing donation must command public confidence.
As a consequence, the underlying principle of the Human Tissue Act 2004 is that of active consent. The Act makes it clear that in cases where the deceased expressed a wish before they died to be an organ donor, no one has the right to overrule that decision and organs may lawfully be removed for transplantation. In cases where the wishes of the deceased are not known, the Act provides a scheme for identifying a close relative who may consent for organ donation.
The Human Tissue Act 2004 has a number of key functions. It places consent at the heart of all uses of human tissue and organs. It will ensure that no human bodies, body parts, organs or tissues will be taken after death for research, transplantation or other specified purposes without the consent of the individuals or their relatives.
We want individuals and families to act in partnership with the professions in making decisions about transplantation, education and research. The Act provides a secure platform for that, which has been widely and strongly supported. That approach is critical in securing and improving public confidence, so that more people can be asked and be willing to agree to donate for transplantation or research.
It will also improve professional confidence so that there need be no hesitation about approaching patients of families in appropriate cases and so that properly authorised supplies of organs and tissues for transplantation, research or education can be maintained and improved.
Some noble Lords expressed concern that under the Human Tissue Authority's draft code of practice on donation for transplantation, clinicians may overuse the clause in the code that enables them to decide that donations should not go ahead where the benefits of donation are deemed to be outweighed by the distress caused to relatives. The code makes clear that that option should be used only in extreme circumstances. The number of cases where potential donations are missed will continue to be monitored to assess how often that situation arises. We are all grateful to my noble friend Lady Hayman for her clear explanation of the rationale of that clause in the draft code. We look forward to the results of the current consultation.
Before I conclude, I will try to answer one or two questions raised this afternoon. Any that I am unable to answer, I will of course respond to in writing. The noble Baroness, Lady Barker, raised the question of an EU directive on tissues and cells. It came into force in April 2004 and requires implementation by April 2006. I will have to write to her about the results of the comparative study being undertaking by the European Commission. The Department of Health and the Department for Constitutional Affairs will continue to work closely on the implementation of the Mental Capacity Act, but it is rather early in the process at the moment.
The noble Lord, Lord McColl, asked about payment of donors for loss of income. I have discussed that with many people who have been affected by that problem, but apparently it is a matter for commissioners locally. The living donor recipient must discuss his or her loss of earnings with local commissioners. That is not a very productive response to the noble Lord, and I will look into the matter because I feel strongly about that issue, which can prevent people from being able to be a donor.
In conclusion, I am pleased to support my noble friend Lord Hughes's Motion that we should call attention to the benefits of organ transplants. I hope that I have demonstrated how work is under way and how the Human Tissue Act 2004 is helping us to reach our goal of increasing the availability and safety of human organs and tissues for transplantation. The continuing increases in organ donor rates are testament to the fact that our system is working. My noble friend Lord Elder is a testament to the quality of life that transplants bring. May he have many more Munros and Kilimanjaros.
I must take this opportunity to acknowledge and thank all those members of the public who enable organ donation to take place—the donors and loved ones of donors who sometimes find the experience distressful. I also thank staff in the NHS, from consultants to cleaners, voluntary organisations and others who do so much to contribute to our world-class transplant service, of which I am very proud, thus saving and transforming the lives of so many people in our country.
My Lords, it has been a splendid debate. Before I came to this House, I was told that there was a breadth of experience here probably not found in any other legislature in the world, and we have certainly seen that today. We have heard the noble Lord, Lord McColl, a distinguished transplant surgeon; my noble friend Lady Turner, whose late husband died of renal failure; my noble friend Lady Golding, whose daughter awaits a transplant—we hope that it comes soon—and my noble friend Lord Elder, who is almost 20 years into a heart transplant. By way of a double echo, I hope that we will see my noble friend Lord Elder in his place at least 20 years from now.
All sorts of new things have come up in the debate. One of the great purposes of discussions in our House is that we can all learn each time a new debate takes place. In the years in which I have been involved in discussions in the other place and here, I have learnt something new every time we have had this debate.
I thank the Minister for her reply. I know that she has a special interest and that she will take all our views into account and ensure that the department is well aware of how strongly we feel about the need for transplants.
The one theme that has run through the debate has been the need for discussion at all levels—at a family, parliamentary and public level. If we have a broad discussion, I believe that matters will move forward as they have done today. I beg leave to withdraw the Motion for Papers.
Motion for Papers, by leave, withdrawn.
Cancer Treatment
rose to call attention to the availability of positron emission tomography (PET) scanners and associated equipment in the treatment of cancer within the National Health Service; and to move for Papers.
My Lords, without wishing to detain the House, I will start with a little background information. In doing so, I recognise that those listed to speak include an eminent medical consultant, a GP, a radiographer and my noble friend Lord Warner, all of whom are well versed in these matters. However, I think that people outside the House who are following the debate will want to hear a little more detail.
Positron emission tomography (PET) is a form of medical imaging. It has been used in the research setting for more than 20 years and in routine clinical practice over the past 10 years. My interest in the subject derives from my experience as a parent who followed in great detail the treatment regime for my son, who was a cancer patient under Professor Andrew Lister at Barts. I learnt during the course of his treatment that PET scanners are critical to the accurate diagnosis of cancer conditions. Sadly, I lost my son. However, for many patients the PET scanner can save a life by indicating the need for surgery or avoiding needless surgery. It was in the light of that experience that I set out to research the issue.
A patient who has a PET scan is injected with a small amount of radioactive tracer. After the injection, the patient waits for the radioactive tracer to be taken up by different cells within the body. An FDG radioactive substance in the tracer is attracted to cells such as cancer cells. The distribution of radioactivity in the body is measured by the PET scanner, and an image of uptake across the body is produced. Scanning takes about 30 minutes to perform. PET scanners are considered to have many advantages over conventional methods of diagnosing and assessing lung cancer, lymphoma and several other types of cancer.
Although primarily used in the diagnosis and staging of cancer, PET scans are also used in cases of cardiac disease and neurological disease. PET also has potential specific applications in Parkinson's disease, stroke, epilepsy and Alzheimer's disease. In cardiology, a PET scan is one of the most accurate tests to detect coronary artery disease. PET has also now successfully been employed in fighting HIV/AIDS. The scans can pick out areas where the AIDS virus is active, allowing doctors to plan new treatments for the infection.
In some situations, PET can pick up disease changes earlier than more conventional scanning techniques, such as CT or MRI. Thus, in those situations, PET is more accurate than CT or MRI. For best results, PET is often used in conjunction with a CT scan. The newest scanners are combined PET/CT scanners.
In the area of lung cancer, PET is invaluable in assessing whether lung tumours are benign or malignant. These scans are therefore invaluable for those lung cancer patients for whom conventional testing has not been able to differentiate and the biopsy is inconclusive.
With survival rates for lung cancer at less than 10 per cent for both men and women, PET can be used in the staging of lung cancer to assess whether or not the cancer is suitable for surgery. It can help to define the extent of the tumour within the chest, including the lymph glands, and can detect unsuspected spread outside the primary tumour in around 10 per cent of patients.
PET scanners can therefore save patients from futile surgery. Any major surgery has associated risks and physical side-effects and, if unnecessary, will add to the emotional stress of a lung-cancer patient's final months. One study showed that the addition of PET scanning to "conventional work-up" of lung cancer patients can actually halve the number of "futile" chest operations.
I myself had a tumour on the lung in 1996. Unfortunately, I am not one of those who would have benefited from a PET scan as my surgery, a thoracotomy which resulted in the loss of half my lung capacity, was unavoidable.
Conversely, PET scanners will also recognise the patients who can be operated on where previously other investigations have deemed them surgically incurable. In an area where survival from lung cancer has shown little improvement for more than 20 years, that must be a benefit.
According to the Intercollegiate Standing Committee on Nuclear Medicine report of 2003, Positron Emission Tomography: A strategy for provision in the UK, this service has a potential role in 25 per cent of patients. As there are more than 28,000 new cases of lung cancer each year in the United Kingdom, that means that around 10,000 people could be helped. That does not even take into account the need for PET in many other types of cancer, as well as cardiology and other applications throughout the National Health Service., this service has a potential role in 25 per cent of patients. As there are more than 28,000 new cases of lung cancer each year in the United Kingdom, that means that around 10,000 people could be helped. That does not even take into account the need for PET in many other types of cancer, as well as cardiology and other applications throughout the National Health Service.
Formal evaluation of the cost-effectiveness of diagnostic techniques such as PET are notoriously difficult, and reports by a variety of health technology assessments are now out of date. However, as the Department of Health's own consultation on the PET framework last year said:
"It is now widely accepted that the evidence of benefit is now sufficiently robust to support the establishment of PET facilities across the country, so that all appropriate patients can have access to the technology".
Of other research, the Pieterman study showed that 62 out of 102 patients with lung cancer being assessed for major surgery had their management changed after having a PET scan. A 2002 study published in study showed that 62 out of 102 patients with lung cancer being assessed for major surgery had their management changed after having a PET scan. A 2002 study published in Thorax showed that, in a series of 164 patients with lung cancer, the addition of PET scanning to conventional techniques resulted in major changes in treatment in 78 cases. Those statistics show the relevance of the equipment to diagnosis and treatment. The PLUS study in showed that, in a series of 164 patients with lung cancer, the addition of PET scanning to conventional techniques resulted in major changes in treatment in 78 cases. Those statistics show the relevance of the equipment to diagnosis and treatment. The PLUS study in The Lancet also showed that PET scanning prevented unnecessary surgery in one out of five patients with suspected non-small-cell lung cancer. Results showed that PET lung scanning with FDG has an accuracy rate of 85 to 90 per cent in differentiating malignant from benign nodules.also showed that PET scanning prevented unnecessary surgery in one out of five patients with suspected non-small-cell lung cancer. Results showed that PET lung scanning with FDG has an accuracy rate of 85 to 90 per cent in differentiating malignant from benign nodules.
We have PET scanners in England. There are six fixed-location PET scanners routinely available for National Health Service patients in England—four PET and two PET/CT combined scanners—all of which are located in London and the south-east. There are a further two fixed-location private scanners in London and three privately managed mobile scanners, which provide some services for NHS patients across the United Kingdom. In addition, at present three institutions with PET facilities are dedicated to research in Cambridge, Manchester and Hammersmith.
Those numbers compare very unfavourably with the rest of Europe, where there are more than 120 sites. France has recently announced plans to increase its number of PET scanners from more than 30 to 75 by 2007. In the USA, there are more than 160 PET sites, and US Centers for Medicare and Medicaid Services (CMS) reimburses PET scans in a very wide range of cancers, as well as some other specific areas of cardiology and neurology.
The Department of Health acknowledged that the provision of PET facilities in the United Kingdom compares unfavourably with that of most other western European countries. Last year's consultation, A framework for the development of Positron Emission Tomography (PET) Services in England, states:, states:
"Five European countries already have at least one scanner per 2 million population, compared with around one per 5 million in the UK (including private scanners, but excluding research scanners)".
In February last year, the European Journal of Nuclear Medicine and Molecular Imaging published a comparative table on PET scanners in western European countries. It looked at the number of scanners needed in each country for all uses. It concluded that we need an extra 42 PET scanners to cover the scanning requirement of the United Kingdom. In sharp contrast, Germany has a scanning requirement of 56 scanners, yet it already has 80 PET scanners in place. published a comparative table on PET scanners in western European countries. It looked at the number of scanners needed in each country for all uses. It concluded that we need an extra 42 PET scanners to cover the scanning requirement of the United Kingdom. In sharp contrast, Germany has a scanning requirement of 56 scanners, yet it already has 80 PET scanners in place.
My question is very simple. What are Her Majesty's Government going to do to address the lack of PET scanners in the United Kingdom? The department's framework consultation last year on the future provision of PET scanning in England looked at which tumour groups would benefit from PET scanning, the likely demand, and the implications for the optimal configuration and location of PET scanners.
While this document highlighted the costs associated with the roll-out of a PET scanning service, it also stated that a network of cyclotrons will need to be established across the country to produce the FDG material required for PET scanning and that:
"Consideration should be given to the establishment of cyclotron services functioning on commercial principles to supply several PET scanning facilities".
Like all radioactive products, the amount of radioactivity decreases with time, and the deterioration of the FDG product means that a number of facilities will have to be built, each relatively close to the PET scanner, because of the difficulty over the problem of time.
The Department of Health has conservatively estimated that the capital cost of installing a PET/CT scanner, including the associated building costs, is likely to be around £2 million. A cyclotron facility is likely to cost a similar amount. The total cost, including VAT, of installing 15 or 16 PET/CT scanners and five or six cyclotrons is therefore likely to be around £50 million.
With the private sector having already shown a commitment to invest in FDG manufacturing in the United Kingdom, does my noble friend agree that it would be prudent for the National Health Service to invest in the provision of PET scanners and let the private sector get on with investing in FDG manufacturing sites in a kind of public/private partnership?
The consultation also looked at PET scanning provision within a window over the next three to five years. Does my noble friend agree that if we are to compare favourably with our European counterparts in the future, we should be looking beyond that three to five year window? Will my noble friend indicate whether he intends to accept the recommendation made by the Intercollegiate Standing Committee on Nuclear Medicine, which stated that state-of-the-art dedicated PET camera facilities should be established in at least 15 sites within the UK in the next three to five years"? What about the NICE guidance on lung cancer recommendation, which states:
"Every cancer network should have a system of rapid access to FDG-PET scanning for eligible patients"?
With the consultation on the draft having ended in October 2004, will the Minister take this opportunity to let the House know when he intends to publish the final framework, to which he recently referred in correspondence to me?
Finally, I draw my noble friend's attention to Early Day Motion 646, Provision of Scanners in the NHS, in the name of Mr George Mudie MP, tabled in the House of Commons last night. It reads:
"That this House believes that the Department of Health should announce the roll-out of a national programme of PET and CT scanners to assist in the diagnosis and detection of cancer and cardiac and neurological conditions, including Alzheimer's, Parkinson's, epilepsy and HIV/AIDS; and further believes that the United Kingdom should meet levels of provision already being planned for in other members states of the European Union".
Last night, on the day that the Motion was tabled, there were two signatories. I hope that by Christmas we will have 200. I beg to move for Papers.
My Lords, I thank my noble friend Lord Campbell-Savours for initiating this interesting and important debate. I must first declare an interest as a former radiographer. As far as I am aware, I am the only radiographer ever to have been a Member of Parliament or a Member of the House of Lords, which perhaps demonstrates what rare creatures we are. There is undoubtedly a need for more PET scanners, as my noble friend has rightly said. Evidence exists about PETs and the good work that they do.
Nuclear medicine brings with it its own set of problems. Whether the scanners are independently run by a private service or established with the National Health Service, the same problems exist and need to be carefully thought through. Capital cost is of course one consideration. But of primary importance is where they should be sited, a decision which should not be taken without a great deal of consultation and thought.
First, the workforce has to be available. The specialist teams of radiographers, medical physicists and radiologists all have to have the right expertise and training to enable them to work as a team in safety. Safety is all important. As with all nuclear medicine procedures, the radiation dose is high. I understand that there is evidence that it is higher than any other nuclear medical examination. The workforce will need to be managed so that they have longer breaks because of the dangers of higher-dose radiation. Thus, although the capital funding will be high, the revenue funding needed will be greater for PET than for any other form of radiation dose.
Indeed, the increasing use of nuclear radiation has highlighted my considerable concern at the proposal to increase the hours worked by radiographers in Agenda for Change. Can my noble friend tell the House whether the dangers from nuclear radiation will be taken into account in controlling the hours worked by radiographers working with PET scanners both in the National Health Service and in private medicine?. Can my noble friend tell the House whether the dangers from nuclear radiation will be taken into account in controlling the hours worked by radiographers working with PET scanners both in the National Health Service and in private medicine?
The other important point to consider is the storage and accessibility of the radioisotopes, a point just outlined by my noble friend. It would certainly make sense to have a central production facility. It could be in a university within a reasonable distance of the PET scanners, and with cyclotron facilities. I have been told that radioisotopes have a short half-life of around two hours. If that is so, accessibility and safety will be major considerations.
I have covered capital and revenue costs, staff, sitting, accessibility and safety. All these factors play their part, but no progress can be made without suitably trained staff. Radiotherapy, for example, suffers from a severe shortage of radiographers, exacerbated by the increasing pressure of cancer treatment targets and the lack of availability of staff and time to facilitate the education and development necessary to support advanced practice initiatives.
That is not to say that nothing is happening to correct the shortfall. In December 2003, the Department of Health set up a project to address recruitment and retention of radiographers with a target of increasing the radiography workforce in England by 1,000 by December 2005. I myself, as a former radiographer, received a letter inviting me to return to the profession. That is proof that no stone, however old, is being left unturned. It would be interesting to hear from the Minister what progress is being made.
The Society of Radiographers is extremely active in promoting the ever-expanding role and widening opportunities available in the profession. The establishment of a world radiography day in November and the House of Commons reception have helped to highlight the role of the profession and its importance. Many of its advisory groups meet with representatives from the Department of Health and other professionals to discuss issues of mutual interest. The society's advisory group on nuclear medicine has recently taken part in consultations to extend the PET service in England. So this debate could not be more timely.
It has also enabled me to pay tribute to the often unsung work done by radiographers throughout the world. In doing so, I also wish to thank the Society of Radiographers and its officers for keeping me and people like me up to date on the rapidly changing world of radiography. It is a profession of which we can justifiably be proud.
My Lords, it gives me great pleasure to speak about positron emission tomography in this debate and I congratulate the noble Lord, Lord Campbell-Savours, on securing the debate and mentioning his own experience, which must have been very painful.
Many years ago, some 40 years to be precise, I was a junior doctor engaged in some research on iron absorption. Once a fortnight I would inject myself with radioactive iron. I then had to lie in a huge lead coffin while the Geiger counter detected which bits of me were radioactive. I will not elaborate on which bits were, although I have to say that there were a lot of ribald comments in the students' bar afterwards. But I like to think that that experience 40 years ago was somehow a precursor to the modern and sophisticated techniques used in nuclear medicine nowadays.
I should also declare an interest in that my husband, Dr Keith Tonge, is a consultant neuroradiologist at St Thomas's Hospital across the river who, many years ago, worked on combining CT scanning with PET scanning. It gives a much better and more comprehensive image, as the noble Lord, Lord Campbell-Savours, told us. I will not repeat all that he said, but this is an extraordinarily useful tool not just in the diagnosis of many cancers, but in watching the progress of their treatment and whether, particularly for conditions like lymphoma, it is having any success. It will also detect the secondaries of a tumour long before a normal CT scan could pick them up. So the glowing spots of radioactivity will show up long before. As the noble Lord said, in many cases that can prevent the need for terribly painful and invasive surgery. It can lead to better and more successful treatments for patients and therefore should be considered. Perhaps I may add that my husband no longer works in the PET field; he is now a CT/MRI man across the river. That is as far as the interest goes.
I will be fairly brief because the noble Lord has given us a comprehensive run-around of all the aspects of this subject based, I suspect, on the excellent report produced by the Joint Royal Colleges for the Standing Committee on Nuclear Medicine, which I recommend to all noble Lords who are interested. It is an interesting document, and very concise and easy to read. Medical reports are often extremely long-winded.
I want to follow up on a point made by the noble Baroness, Lady Golding. The staffing required for these procedures is enormous. We need trained clinicians. It is not enough to have just radiologists, we need people who have been specially trained in nuclear medicine, and PET scanning in particular. We need technicians, physicists to work on the cyclotrons, and biochemists who combine the radioactive elements with what is usually a glucose compound which is injected into the patient. A lot of scientists are needed on the case. A new curriculum which includes all the new techniques has been set up for trainees in nuclear medicine, although it is still subject to criticism. We continue to feel our way here. Radiographers need to be encouraged to branch out from specialisms like CT and MRI and to move towards PET.
All this requires huge investment and a national strategy to assess the numbers needed and then to plan accordingly so that staff are linked to our many cancer centres. The Government have set up cancer centres all over the country, each ideally serving around 1 to 1.5 million people. It would be nice to aspire to having a PET scanner in each of those centres to provide a service for those working on the treatment of cancer. Indeed, that would ensure a suitable concentration of staff and patients to allow training to be conducted at the highest level.
The noble Lord, Lord Campbell-Savours, also mentioned the use of PET scanning in cardiac medicine and neurology, which I shall mention briefly later in my remarks.
However, I am disturbed by the Government's approach so far. We have been spared the PCT commissioning approach to this, which has caused much confusion among specialised services in the NHS. The Minister may be able to enlarge on that point. I was unable to attend the excellent debate held in the House last week called by the noble Earl, Lord Howe, but it illustrated the problems with the PCT commissioning approach. While I will be corrected if I am wrong, I think that the Government have put PET services out to tender and are asking only private and voluntary concerns to submit tenders. I am unclear whether foundation trusts and medical facilities will be allowed to tender.
Here I tread on delicate ground, but I am slightly worried that this may be another bonanza for companies like Alliance Medical or Lister In Health. The former, Alliance Medical, already has one centre and two mobile scanners, as well as a cyclotron opening at Keele University. So there is no problem then, just send it into the private sector. But there will be many difficulties associated with such an approach.
Noble Lords may remember the problems there were with the quality of service when Alliance Medical took over many MRI services. Some of the reports were so bad that NHS consultants had to repeat the work. Much of this was due to private organisations, such as Alliance Medical, having no direct link with the clinicians treating the patients, with whom the scans needed to be discussed. It is essential in clinical care to have that direct link between the diagnostic services and the clinicians.
Another problem associated with privatisation concerns the training of staff. Presumably this will still be carried out by the existing NHS centres. But then we would lose those staff to the private companies, which still would not have any training costs at all. Do we really want this rather haphazard situation for patient diagnosis and extra training expense for the NHS with no return?
Why cannot the Government invest in and change the existing facilities to act as regional centres, with mobile scanners going out from a hub centre which would have the main scanners—with CT back-up, of course—and the cyclotron and the clinicians. The noble Lord, Lord Campbell-Savours, suggested a public-private partnership, perhaps, with the scanners remaining in the public sector and the cyclotrons in the private sector. That is an attractive option but I suggest there would still be a problem with training.
The cyclotron produces the radioactive elements, which are attached to the glucose compounds, which are injected into the patient. There needs to be co-ordination between the physicists, the biochemists and the people doing the scanning. I am not quite sure how that would work out if the cyclotrons were in the private sector and the scanners were in the public sector. It is an interesting idea but it needs working on and thinking out.
This is a rapidly developing field. I was told that at the moment PET scanning is the only way to make an early diagnosis for Alzheimer's disease; it can spot it in the early stages. At the moment we do not use PET scanning very much for Alzheimer's disease because we have no effective treatment. But when a specific treatment becomes available, as is likely—a huge amount of research is being carried out and huge advances are being made in the treatment of Alzheimer's disease—it will mean tens of thousands of patients needing PET scans to obtain that early diagnosis so that they can receive the treatment to arrest the course of the disease.
Imagine the pressure on the health service if we do not have enough scanners in place by then—and we are talking about a very few years' time if the research into Alzheimer's continues at its present rate. Surely we need a proper network within the NHS which could provide the services quickly and efficiently, with a hub and mobile scanners going out from there.
Do we really want a last-minute scramble to provide services similar to that which, I am assured by people who work in the field, we have had over the past 20 years with CT and MRI? We have been rushing to try to catch up and rushing to try to get the equipment into our health service hospitals where there was none before. We were way behind other countries in this.
PET scanning is yet another specialist service in a rapidly developing field of medicine in this country. We must have sane and sensible plans for future provision.
My Lords, I add my congratulations to the noble Lord, Lord Campbell-Savours, on having brought such an interesting and important subject to the Floor of the House. The issue is one which has been highlighted consistently by all the big names in cancer care—Marie Curie, Macmillan, CancerBACUP, the British Lung Foundation, the Roy Castle Lung Cancer Foundation and others. All those organisations and now, more recently, NICE, have unequivocally called for an increase in the numbers of PET scanners across the country. In the light of recent pronouncements from Richmond House, I am confident that the Minister will tell us that the Government fully accept the strength of that case, at least in outline.
The noble Lord listed the advantages of PET scanning technology for the patient and for clinicians. I do not propose to repeat what he said, which was amplified, very ably, by both the other speakers. We are talking about the ability to achieve quicker, better and more informed diagnosis of a number of different cancers. A PET scan can often pick up a cancer in its very early stages, as we have heard, which in lung cancer, for example, can be very important.
We are also talking about being able to avoid wrong diagnosis, such as can sometimes happen in the use of ordinary CT scans, for example. Before PET scans, doctors might well decide to operate on a patient, just to be on the safe side, if a scan was ambiguous. If you can spare a patient the strain of radical surgery because you know an operation is not needed, that is obviously a much better state of affairs.
A consultant radiologist has estimated that as many as 20 per cent of the 3,000 lung cancer operations carried out each year could be avoided if PET scans were used beforehand. Similarly, a PET scan enables a clinician to monitor the effect of chemotherapy so as to see whether there is still active disease present in the patient.
In other western European countries, PET scanning has been an accepted technology for some years now. Five of those countries have at least one scanner per 2 million of population; here it is only one per 5 million. In the main, the machines are concentrated in London and the south east, although two weeks ago a new PET scanner was unveiled at University Hospital Birmingham. So we have a great deal of catching up to do.
The department issued a consultation document at this time last year on the benefits and implications of developing PET scanning more widely across the NHS. The responses to the consultation have not yet been published, as the noble Lord mentioned, but we understand that the plan is to issue a revised framework this year. One of the main concerns has to be the workforce implications—as so well highlighted by the noble Baroness, Lady Golding—which the cancer director, Mike Richards, has been asked to oversee. It would be helpful if the Minister could update us on that.
Cancer Research UK tells me that although the merits of PET scanners are well recognised, more research is needed fully to understand the cost-effectiveness of PET as a diagnostic tool, not least in relation to quality of life issues for the patient. I suggest that that research is essential. I hope the Minister agrees.
The backdrop of this, of course, is the prevalence of cancer. One in four people in England will die of it and, although mortality rates have been improving gradually for some 15 years, we are not doing as well as we should. Survival rates vary greatly throughout the UK. You have less chance of surviving five years following a cancer diagnosis if you live in a deprived area than if you live in a more prosperous part of the country. Part of this imbalance is due to staff shortages. In north London, there are more than 20 clinical and medical oncologists per million of population; in Greater Manchester the figure is 10; in Cumbria and Lancashire it is just over five.
There is still a post-code lottery in cancer drugs—Herceptin for breast cancer being the classic example. In the Midlands, only 14 per cent of women have access to it, despite it being a NICE-endorsed treatment. A study carried out last year by Cancer Research UK found that the breast cancer survival rate in Britain was the lowest in western Europe. For lung cancer, our survival rate of 7 per cent is significantly below the European average; the best performing country, the Netherlands, achieved nearly 12 per cent.
Cancer Research UK has estimated that if Britain could achieve the survival rates of the best country in Europe for each cancer, it would mean a saving of 25,000 lives. That surely must be our target.
I pay due tribute to the Government on their programme of investment in diagnostic and radiotherapy equipment over the past few years. A great deal of money—some £400 million—has been spent and the NHS now has state-of-the-art CT and MRI machines in a great many hospitals around the country. Unfortunately, and despite the new technology, there are still considerable problems.
The main problem relates to radiotherapy. Depending on the purpose and urgency of the treatment, different maximum waiting times for radiotherapy are recommended by the Joint Collegiate Council for Oncology. For radical treatment—that is to say curative treatment—the maximum time is four weeks. The Royal College of Radiologists published an audit of radiotherapy waiting times in 1998, and it found that 32 per cent of patients were waiting longer than the maximum acceptable waiting time for radical treatment.
In 2003, when it repeated the audit, the figure was 72 per cent. There was a similar serious deterioration in waiting times for palliative treatment. The rising proportion of patients waiting longer than the maximum acceptable delay is not confined to a few treatment centres. In all three major categories of treatment—radical, palliative and adjuvant—we have seen longer waiting times appearing across the country.
The Government have been trying to do something about that. They have increased the numbers of radiographers in post and in training and the number of linear accelerators, although not perhaps by enough. They have also for the first time tackled head-on what is sometimes called "the hidden wait". Only two stages of waits for treatment are currently recorded: the wait between GP referral and first outpatient appointment; and the wait for a first inpatient appointment.
The bit in the middle—the wait between when one is seen as an outpatient and when the doctor gets the scans and decides to operate—is not measured at all and it can often be a long time. That long time can be tremendously detrimental to the patient's state of health; apart from being a source of huge anxiety. The Public Accounts Committee in its report of January this year was trenchant in its criticisms of diagnostic delays in radiology, endoscopy and pathology.
So, again, we must welcome the setting of the 18-week target, which embraces the entire patient waiting experience, from GP referral to the start of treatment. The problem of the hidden wait will no longer be brushed under the carpet. But what is the progress on the issue? In January, John Hutton told us that delivery plans were in train at strategic health authority and PCT level and that they would be agreed with the department in the spring.
In May the Government said that they expected to agree local delivery plans in June. Then in July, Liam Byrne, in a written reply, said that the department was,
"still in the process of agreeing local delivery plans".
Perhaps the Minister can tell us when agreement is likely to be reached and whether, as I suspect, the underlying complexity of the issue relates to workforce considerations more than to any other single factor.
It would also be helpful if the Minister were to clarify recent reports of difficulties with private sector procurement of diagnostic services, as referred to by the noble Baroness, Lady Tonge. There is everything to be said for contracting with the private sector so as to expand and speed up scanning capacity across the health service. I do not think that anyone should have a problem with the principle. The worries are around Alliance Medical's performance, as revealed in Panorama in February this year. in February this year.
Health authorities from all over England have spoken of "suboptimal care for patients", and Dr Gill Markham, chair of the BMA radiology subcommittee, branded the contract, "a complete disaster". Those are strong words. On 9 June this year The Times reported that five hospitals have pulled out of contracts to buy MRI scans from Alliance Medical over allegations of inaccurate reports and excessive delays. reported that five hospitals have pulled out of contracts to buy MRI scans from Alliance Medical over allegations of inaccurate reports and excessive delays.
What are we to think of that and what is the Government's assessment of the quality of Alliance Medical's performance? And what of the other serious concern in this area, namely NHS waste? There are a number of MRI scanners in hospitals, some brand new, which are not running at anything like capacity, simply because the scans are being carried out in the private sector.
The Times reported last month that NHS scanners in Middlesbrough, Coventry and Rugby were left idle because the scanning budget had been directed to Alliance Medical. That cannot make sense: it is a classic example of how central planning, albeit well-intentioned, can produce perverse results when it is not properly dovetailed with local conditions. reported last month that NHS scanners in Middlesbrough, Coventry and Rugby were left idle because the scanning budget had been directed to Alliance Medical. That cannot make sense: it is a classic example of how central planning, albeit well-intentioned, can produce perverse results when it is not properly dovetailed with local conditions.
What this debate has brought out most forcefully is that it is above all in diagnostic services that we need to do a great deal better. Unfortunately no magic wands can be waved. We know from the Secretary of State's speech to NHS chief executives last month that, in her words,
"a great deal more needs to be done"—
to meet the waiting time targets set out in the NHS cancer plan. In his reply I hope that the Minister will be able to take the opportunity of sharing with us some of the Government's thinking; not least about how long it is likely to take for us to have enough radiologists and radiographers in place for waiting time targets on all cancers to be met and where the pinch points are likely to be felt in the drive to expand diagnostic and treatment capacity. I hope we can depart for the Summer Recess on a note of optimism.
My Lords, I am sure that we can depart for the summer Recess on a note of optimism. We are all grateful to my noble friend Lord Campbell-Savours for raising this important issue and for his excellent exposition on the benefits of PET scanning and the issues involved.
We all have huge sympathy for my noble friend over the loss of his son. It demonstrates that cancer touches many people in our society; that is why as a Government we have made preventing cancer and improving the care of people diagnosed with that disease such a priority. It is why we have put in place a major 10-year programme of work, the NHS Cancer Plan, supported by record levels of investment.
A key element of that investment is the unprecedented expansion of modernisation of cancer diagnostic and treatment equipment that we have seen in the NHS over the past five years, which the noble Earl, Lord Howe, graciously acknowledged.
Since April 2000, 115 new MRI scanners, 209 CT scanners, 109 linear accelerators and over 730 items of breast-screening equipment have been delivered to hospitals in the NHS through central funding. A further 23 CT scanners, 48 MRI scanners and 58 linear accelerators are due to be installed by the end of December 2006. That is a major investment, which means that 64 per cent of MRI scanners, 73 per cent of CT scanners and 67 per cent of linear accelerators now in use in the NHS are new since January 2000.
Cancer survival rates have been increasing under this Government and waiting times are coming down. I say to the noble Earl, Lord Howe, that we are planning in detail the work on delivering our manifesto commitment to removing hidden waits for GP referrals for treatment to 18 weeks.
However, I have to say to the noble Baroness, Lady Tonge, that hidden waits cannot be delivered in such a timescale without some diagnostic assistance from the independent sector. The arithmetic is incontrovertible: it cannot be done simply by doing it through the NHS. We need that level of assistance from the independent sector to stop the hidden waits and to give diagnosis and treatment to NHS patients faster. That is an inevitable consequence of trying to get rid of hidden waits and bring down waiting times rapidly for our citizens.
The equipment that we put in place is having a real impact on the care of patients. The NHS can now provide an extra 240,000 more CT scans and 175,000 more MRI scans each year as well as offering patients the latest in radiotherapy treatment and techniques. This is the context in which I wish to say a little more about PET CT scanners and respond to the points of my noble friend and other noble Lords.
My noble friend described extremely well some of the clinical benefits of using PET scanning, such as determining the extent of the spread of cancer which helps in assessing the suitability of patients for radical surgery; seeing how well a patient has responded to treatment; and detecting any recurrence of cancer under treatment. As noble Lords have indicated, PET scanning can do a great deal to help prevent unnecessary surgery.
Although PET scanning has been used in clinical practice for some time, it is only more recently that robust evidence has begun to emerge about its benefits in terms of improved outcomes for patients. We now have this evidence, as well as reports from other countries' early experiences of using this technology. We know there is particularly strong evidence for the use of PET CT scanning for lung cancer, bowel cancer and lymphoma. There is also growing evidence for the use of PET CT for other cancers such as head and neck, oesophageal, brain tumours and a range of less common cancers.
Let me reassure my noble friend that we will not hesitate to modify guidance as new evidence emerges of the benefits of PET CT scanning. As part of our commitment to establish an evidence base to support further investment in this technology, we are establishing processes which would enable us to monitor emerging evidence of new applications for PET CT scanning.
As my noble friend has indicated, we know that PET facilities are expensive to build and run. The capital cost of a PET CT scanner, including building costs, is in the region of £2 million to £2.5 million. The costs of building a cyclotron, the machine needed to produce the radio-pharmaceuticals required for PET CT scanning, is another £3 million to £3.5 million. In addition, the annual costs for each scanner are likely to be in the region of a further £2 million.
As other noble Lords have said, this is not just a matter of money. It is about the human resources required to make this very complicated equipment work. We need a wide range of qualified and well trained staff—technicians, radiographers, scientists and others—to get the benefits of these capital investments. These resources are not easy to turn on overnight; there needs to be training and help to maintain the up-to-date nature of some of these areas. It is not like popping down to Tesco and collecting a few more. So there is a big job to do in workforce planning terms.
There are currently six PET CT scanners and one PET scanner routinely available for clinical work in the NHS. These provide more than 6,500 scans per year—that is about 60 per cent of total scans. In addition, around 4,000 scans—40 per cent—are either referred individually to privately run centres or are provided by independent sector mobile scanners under contracts negotiated locally by the NHS. These mobile units currently visit 11 sites around the country. So as of today, without doing anything more, we have NHS patients receiving about 40 per cent of their scans from the independent sector. If we told the independent sector not to provide these services, the only people we would be damaging would be NHS patients.
I acknowledge that the location of PET equipment is currently biased towards London and the south east, as my noble friend rightly indicated. However, this is changing. A PET CT scanner at Queen Elizabeth Hospital in Birmingham, as the noble Earl, Lord Howe, mentioned, started scanning patients earlier this month. This facility is a partnership scheme between the NHS and the independent sector. It hopes to scan around 4,000 patients a year when fully operational.
There are also similar advanced NHS and independent sector plans to bring PET CT scanners online at Nottingham City Hospital and the Lancashire Teaching Hospital in Preston within the coming year, with other schemes still in development. I am very grateful to my noble friend for raising these important issues; it gives me the opportunity to explain the work that is going on.
I should like to pick up on a point made about the number of scanners in other countries. We are now in a position to learn from other countries' knowledge and experience of using PET scanners. This is helping us to gauge demand for PET scanners, as well as enabling us to select the best service model to meet that need. It also helps us to learn from mistakes made elsewhere. My noble friend mentioned Germany. We know that a number of PET scanners in Germany in the past couple of years have been lying idle because of the lack of funding and resources to operate them. We do not want to put ourselves in the same position.
I can reassure my noble friend and other noble Lords that we intend to issue a national framework for the development of PET scanning services in England. The framework has been drawn up following requests from strategic health authorities, NHS commissioners, clinicians and the research community to look at how the NHS can fund the high cost of PET scanning as well as ending the current geographical inequities of provision.
The framework will aim to provide guidance to specialist commissioners and potential service providers on the development of PET services and to ensure that there is equitable access to scans for patients across the country. The framework has been drawn up using a number of different national and international strands of evidence and expert advice, such as the Intercollegiate Standing Committee on Nuclear Medicine, expert groups established by NICE, both of which my noble friend Lord Campbell-Savours mentioned and the Centers for Medicare & Medicaid Services in the USA.
The framework also reflects the many comments received from major stakeholders when a draft of the document was sent for consultation last year, to which my noble friend rightly drew attention. I reassure my noble friend Lady Golding that we have gone to a great deal of effort to do this on a partnership and fully consultative basis, so that in this complicated area we take full account of all the professional expertise available.
The National Cancer Research Institute, which includes the major research organisations in the NHS, has established a working group to co-ordinate future research in response to a recommendation in the draft framework. The aim of this group is to ensure that future research into PET CT scanning for cancer is co-ordinated through a UK-wide research strategy. That will ensure that research funding is targeted to have the greatest scientific impact on health policy and service delivery.
We intend to issue the framework shortly to coincide with the publication of a report from a working group of major stakeholders on the use of PET CT in the UK. The working group includes the Royal College of Radiologists, the Royal College of Physicians, the Intercollegiate Standing Committee on Nuclear Medicine, the British Nuclear Medicine Society and the Institute of Physics and Engineering in Medicine.
My noble friend Lady Golding is right to remind us of the safety issues and the importance of radiologists. As she acknowledged, we are working hard to increase the number of radiographers, with some success, and I am very glad that efforts have been made to lure her back into practice. I echo her recognition of the contribution that radiographers make to the NHS.
The Royal College of Radiologists-led working party report has addressed many of the workforce and training issues on this and includes health and safety of all the staff involved. That report will be published early in September.
On other staffing issues, we have something like 13 per cent—about 1,600 more NHS radiographers—than in 1997. The number of students entering training to become radiographers has more than doubled since 1996–97. The NHS staff vacancy rates in this area are also dropping. They certainly were between 2003 and 2004; I do not have any information later than that. So the position on radiographers is improving, but I acknowledge that it is an area we need to continue working away at very hard.
The report that I have mentioned will provide a strategy for the development and the integration of this leading-edge technology within routine clinical practice. It will recommend a model of service provision and provide guidance on the staffing of facilities, as well as standards and protocols for the delivery of the service.
My Lords, perhaps I may intervene. My noble friend has referred to the report. and I hope that will give him the opportunity to answer the question which I asked him about the NHS investing in PET scanners and, at the same time, about the private sector concentrating its investment in FDG facility sites in a kind of public/private partnership?
My Lords, I was about to come on to the issues of capacity and investment, which I know are of great concern to my noble friend and other noble Lords. I am not sure whether I will be able to satisfy him on the precise way in which the partnership that he has delineated between the independent sector and the NHS will work, but I will look into that issue and write to him. But as I move on to the capacity and investment issues, I will be able to explain the approach to partnership working between the independent sector and the NHS that we have in mind.
The department's national framework will dovetail with the working group's report and provide comprehensive guidance to the NHS. I cannot say much more on these two documents at this point, but I will ensure that all noble Lords have access to them and that my noble friend is sent copies as soon as they are published. We expect them to be published in the very new future.
I turn to the issue of investment in PET scanning, which my noble friend has encouraged me to talk about. This is the concluding part of my remarks. Currently, around 10,500 PET scans are undertaken in the NHS each year. We estimate that around 40,000 PET CT scans will be needed each year by 2007–08. We anticipate that this demand will rise rapidly when further evidence of the benefits becomes available. It is likely to be a moving target, so to speak.
To help meet this demand, we will make capital available to the NHS to build new PET CT facilities. This is in addition to the funding that we have allocated to primary care trusts in their baselines from 2006–07 onwards to develop and provide PET scanning services for their local populations. However, it takes a long time to plan and build major facilities such as PET CT scanners. As in other areas of rapid expansion of diagnostic facilities, we will, therefore, be making a greater use of the independent sector by purchasing additional scans to meet the anticipated demand. We will ensure that this additional independent sector capacity is delivered where it is most needed and in support of local plans.
I think I have made it clear already that I do not share the hostility of the noble Baroness, Lady Tonge, to seeing the independent sector involved in providing these additional services for the NHS. They are provided under the same terms; that is, being available to people on the basis of clinical need and free at the point of use, and we will require them to meet the specifications and the price that the NHS requires. But NHS patients are benefiting from access to these services and will continue to benefit from them if we can make PET CT scanning available faster through these means.
I accept that there were some initial teething troubles in the work that was done by Alliance Medical, but we also have a survey which shows 96 per cent satisfaction rates among the patients who have been involved. We will publish by the autumn some very good evidence, from a large-scale study, on the effects on quality of using the independent sector in these diagnostic services. Despite the fact that, in some cases, things have not worked as well as they might, the evidence is that the independent sector is providing diagnostic services that are at least as good as those provided in the NHS. Without being too smart about it, we cannot all acknowledge that nothing ever goes wrong in the NHS and that mistakes are never made. The level of service which is being provided for diagnostics by the independent sector is comparable with that which is provided through NHS means.
This approach will build on our recent initiatives to use the independent sector to create, as I have said, enough diagnostic capacity to deliver the new, 18-week GP referral-to-treatment target that we set out in our manifesto, as well as help improve our performance in treating cancer and coronary heart disease. I can assure my noble friend that we see partnership with the independent sector as an important part of developing PET CT scanning in this country, but the precise way in which we do that will to some extent depend on the circumstances in particular parts of the country and how that is best done.
The major contracts that we have made with the independent sector providers have enabled us to draw in international best practice in service design, use of new technologies and workforce redesign. They have spearheaded the provision of more convenient access to services, as close as possible to where patients work and live. Before the independent sector was involved in this area, no mobile scanners were being used for NHS patients, and this has provided an opportunity to cut waiting lists.
An announcement giving details of these new additional PET/CT scans from the independent sector and the extra capital funding for NHS-provided services will be made at the same time as the publication of the national PET framework that I described earlier. We are very close to an announcement on the publication of the framework and the other reports and to giving a picture of investment in extra capability in this area.
In conclusion, through the investment in the new CT and MRI scanners and linear accelerators, this Government have shown their willingness to support the NHS in expanding its capacity and enabling it to adopt the latest technologies. We shall build on that with investment in PET/CT scanning and with the publication of the national framework, the procurement of scans from the independent sector and the extra funding for new NHS PET/CT services. That will help us to meet demands in the short and medium terms as well as to plan for longer-term needs and provide greater and better geographical distribution of services. I am confident that in the near future we shall see far greater numbers of patients with cancer and other diseases benefiting from greater access to PET/CT scanning, regardless of where they live.
I am grateful to my noble friend for giving me the opportunity in this debate to set out the Government's approaches in this area.
My Lords, I thank all noble Lords who have participated in the debate. My noble friend Lady Golding brought to it all the expertise of a highly experienced radiographer. At the heart of her contribution, she called on the need for increased training and protection for workers in this area of nuclear medicine. I am reassured that my noble friend the Minister said in his reply that the Government are treating these matters very seriously.
The noble Baroness, Lady Tonge, brought her expertise as a GP and referred to her husband's role in the development of PET and CT combined scanners, for which we are all grateful. But she also referred to the identification of secondary tumours, which was a subject that I failed to refer to. A particular point was made to me by John Moore Gillan, who is the lead consultant in the department of respiratory medicine at St Bartholemew's Hospital. On the other training issues that the noble Baroness raised, I myself will do more research into those specific issues, which are of particular interest to students of this whole debate. Her concerns related to what happens in the conditions of the development of public/private partnerships and the implications for training.
The noble Earl, Lord Howe, referred in his contribution to the views being expressed by leaders in the area of cancer care nationally to this whole debate. He referred to the sparing of pain for patients, but I would argue that there is equally a sparing of pain to another group of people in society—that is, to the taxpayer. There are major public expenditure implications in CT scans which are beneficial to the taxpayer, as the avoidance of surgery has major implications for health service budgets.
I would suggest to the National Audit Office that, following the success in the treatment of its report on cancer issues and the subsequent PAC report to which the noble Earl referred, it too might want to look specifically at that area, to see whether it can be shown—as I am suggesting—that major savings would arise for the public purse if we went down the PET CT scanning route. In other words, there are issues of economy, efficiency and effectiveness in this whole area that are of great interest to the taxpayer.
My noble friend the Minister referred to the Government's substantial record in providing equipment for the treatment of cancer, and we are all as a nation indebted to the Government for that. As my noble friend said, there are thousands of pieces of equipment—without going into detail—that have only recently been brought on stream, many of which I was able to observe closely during the time that I spent with my son. My noble friend emphasised the role that independent contractors will make in meeting the demand for that kind of equipment. That emphasis will generate a lot of discussion in hospitals throughout the country, in the trade unions involved and particularly among health service professionals, who have been gravely frightened by their experience over CT scanning and the contractualisation of use of facilities.
I close by thanking my noble friend for this promise that we are about to receive the framework document, which we are all looking forward to reading. I thank him for the time that his department officials have spent in recent days in ensuring that my debate, of which they were given good notice, was fully answered. I thank my noble friend and I beg leave to withdraw the Motion for Papers.
Motion for Papers, by leave, withdrawn.
House adjourned at twenty-eight minutes before three o'clock to Monday, 10 October next at half-past two o'clock.