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There is some important history. A family wanted the organ to go to only one ethnic group, which was deemed to be contrary to race relations. It was from that case that the decision was made that a family could not express any wish at all. I wonder whether that was gold-plating on a decision, with which I agree, that no one should be able to specify one ethnic group. A few other cases similar to the one that I outlined earlier have appeared over the years and have been referred to the transplant authority. Anecdotally it seems that compassionate decisions have been made and have not gone down the hard line, but the trouble is that it depends on whose watch such decisions are made. The key is the interpretation of any guidance. I suggest that people have become inappropriately rigid because no guidance can allow for every eventuality, but we must respect the wishes of the person who has died. I beg to move.

Baroness Golding:I strongly support this amendment. When the noble Baroness, Lady Finlay, spoke to me about it, it reminded me that when my daughter had kidney failure, the young daughter of one of her best friends immediately asked whether she could be matched to see whether one of her kidneys could help my daughter. People need to be able to do something when a close friend or relative is ill and they feel helpless. This would help the living. This amendment should be strongly considered. Unfortunately, we seem to be no closer to presumed consent and, until that day comes, every little helps to enable people on the waiting list to say that when they die, they want to be able to do something to help their remaining family and people who are in dire need. This amendment should be given strong consideration.

Lord Walton of Detchant: As I expected, my noble friend Lady Finlay moved this amendment with her customary clarity and thoroughness. I do not believe that there is any issue relevant to this amendment that she failed to mention when moving it so persuasively. This is a permissive amendment, and I cannot see any way in which the Government could feel that it is contrary to existing government policy. Subsection (1)(b) states that if:

“D had expressed a wish, or the family of D had expressed a wish ... that a particular organ or organs ... should be considered for transplant”.

It does not state that it must be given to that individual. Subsection (2) states that,

should be considered. The amendment is permissive, but so persuasive that it is crucial to see it in the Bill. I strongly support it.

Baroness Barker: I shall be brief. I wish to add my support for the amendment and to make one point about its wording. Noble Lords will know, because I have spoken about it before, about the experience of my friends who lost their only child at the age of 15 due to a brain haemorrhage. They managed to get through an unimaginable tragedy by dint of the support of their family, their faith and the knowledge that because of their decisions, donations from Daryl’s body helped, they think, at least 25 other young people.

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It was particularly important for them, and they subsequently took part in a project with the Department of Health called, I think, “Patient Voices”, to encourage people from minority communities to become donors. There is a lack of organs from particular minority communities. For biological reasons, it is important that people from minority communities receive compatible organs and tissue.

The second reason why I support this amendment is because it does what the noble Baroness, Lady Finlay, said it does. It takes the point established in the Mental Capacity Act about people being able to make an advance statement of their wishes and have it respected. That is the key to this. In this House, we have had repeated arguments about presumed consent. Whatever one’s view of that, where somebody has made an indication of his wishes, it is important that it is observed. The only point that I would make on that is that I suspect the Minister might seek to turn down the amendment on the basis of the wording. If it could be reworded to have as strict conditions for the notification of consent as is the case in the Mental Capacity Act—for example, that the consent must be recorded in writing—I would be happy with that.

Having said that, I echo the question asked by the noble Baroness, Lady Finlay: what more do people want who wish to increase the number of organs that are available for transplant but who wish to do so within a framework that understands the ethical considerations and objections that some people have? When are we going to move forward on this? We seem to be running out of options, and the situation simply gets worse. When we know that so many people want to do this, it is, frankly, perplexing.

4 pm

The Lord Bishop of Ripon and Leeds: I associate myself with the noble Baroness, Lady Finlay, on the amendment, and I do so from the perspective of being aware of a number of cases from a pastoral point of view where it has proved impossible to follow the wishes expressed in this sort of situation and where that has caused a significant amount of distress to families, as we have already heard from other noble Lords.

I want to take up the ethical issue, which the noble Baroness has raised, and I plead again that we discover the right way in which this amendment can be so expressed that the ethical fears are dealt with. It seems to me that there is no basic ethical objection to anything that has been spoken about in Committee this afternoon. Therefore, we need to be able to find the right way of wording this so that it will not be subject to ethical criticism. I am sure that we can do that, and I very much hope that we shall be able to do so with this amendment.

Lord Rea: Extremely briefly, I support the spirit behind the amendment; the actual words we can deal with later.

Lord Tebbit: Briefly, I add my support to the amendment proposed by the noble Baroness. I do so from a position way beyond that which I suspect she

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and most others in this Room would hold. I regard this body of mine as being mine in life and it is for me to say in what way it should be disposed of after my death. I regard that as an absolute. I recognise that many people do not, but this goes some way along that road. For example, I would have the gravest reservations about any organs from my body after my death being used to save the lives of Mr Adams or Mr McGuinness, or any of the gangsters with whom they have long been associated. To me, this seems a very reasonable movement along the path. I would like to go a long way farther.

Baroness Cumberlege: My noble friend has put his name to this amendment, and I am sure that he supports the noble Baroness, Lady Finlay. I understand that an inquiry or review took place, which was chaired by Elizabeth Buggins. If the noble Baroness, Lady Finlay, could tell me what response she has had from that body, I would be grateful.

Baroness Thornton: Amendment 125 seeks important changes to organ donation that aim to enable a person or the family of a person to express a wish that a specific family member or friend who is on the transplant list should receive that person’s organs after death. I am pleased to be able to inform the noble Baroness, Lady Finlay, and the Committee that such a change has already been agreed in principle by the Department of Health and that the process of implementation has started to be worked through. I pay tribute to the noble Baroness, Lady Finlay, for her work on this. We have been in dialogue on it since our last debate on the issue in this Room.

Members of the Committee will be aware that current policy is that organ donation is a gift and the donated organ is allocated on the basis of clinical need. This policy, as has been mentioned, reflects a case a few years ago where a patient's family agreed to a donation on the basis that the organs could only be given to specific ethnic group. However, as the noble Baroness has clearly set out, this policy has led to some rare but difficult situations where the clinical team would have preferred flexibility to take account of a patient’s, or their family’s, wishes. Department of Health officials have been working with the Human Tissue Authority and NHS Blood and Transplant over the past year to consider the various legal, ethical and public health implications of a review of the existing policy that would give a deceased donor similar opportunities as a living donor, as the noble Baroness mentioned, to donate an organ to a close relative or friend.

It might be helpful to outline some of the issues to be considered. Perhaps the key consideration, as the noble Baroness recognises within her amendment, is the need to ensure that others in urgent clinical need of the organ would not be harmed—for example, patients registered on the urgent heart scheme, liver patients registered as “super-urgent” or renal patients identified as “highly sensitised”. There are also legal implications to consider—for example, whether or not directed deceased donation could be seen as discriminatory or open to legal challenge. The numbers involved are

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likely to be so small as to make it difficult to show discrimination. However, any change of the policy would require careful monitoring. If, following monitoring, there was evidence of disproportionate impact, we would need the flexibility to reconsider the policy and the justifications for it.

NHS Blood and Transplant has written to the Department of Health, giving its views and those of the Human Tissue Authority. There was agreement by both organisations, and broadly across the transplant community, that unconditional directed donation was acceptable in exceptional circumstances where the following principles apply: that there were no others in urgent clinical need of an organ who may be harmed by directed donation; that there was appropriate consent to donation; that the deceased had indicated a wish to donate to a specific named relative or friend, or relatives had expressed that wish on their behalf; that the intention to donate was not conditional on the directed donation going ahead; and that the need for a transplant was clinically indicated for the intended recipient.

I assure Members of the Committee that Department of Health Ministers have agreed in principle to a change of existing policy to enable the directed donation of an organ from a deceased donor in certain exceptional circumstances. However, there are a number of important areas that still need to be worked through. First, it is vital that we agree a UK-wide approach. It would be unacceptable for there to be different policies in different parts of the UK. As Members of the Committee know, organs donated in one part of the UK can be transplanted in another. Therefore, the implications of any change of policy would need to be considered and agreed by all the UK Administrations. NHS Blood and Transplant has already written similarly to Ministers in Wales, Scotland and Northern Ireland. I am aware that the framework proposed by NHS Blood and Transplant is being actively considered by Ministers in Scotland, and that Ministers in Wales and Northern Ireland have already agreed in principle. A review of policy in this area is justified, and they want it to be subject to certain safeguards. We are making progress and are very busy indeed on this. The Department of Health will work with the other health administrations to take this forward as quickly as we can.

We are considering the safeguards necessary to support the implementation of any change of policy—for example, the need for guidance for professionals in the transplant community. In recognition of the fact that there will always be difficult cases that require further discussion, arrangements for the decision-making process and lines of accountability will also need to be clear. Implementation of the framework will also need to be monitored routinely to understand how consistently, accurately and legally it was being applied.

In conclusion, I hope that I have given Members of the Committee some assurance that we have agreed in principle to a change of policy and that work is in hand. However, as I say, any change would have UK-wide agreement. The best approach would be to have more detailed guidance, possibly supported by directions. I understand that that guidance is also in draft.

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I hope that Members of the Committee agree that good progress is already being made. I am confident that, by Easter, we will be able to identify the necessary work to take this forward and the timescale involved. I will write to Members of the Committee immediately after the Easter Recess with a more detailed update. In light of those reassurances, I hope that the noble Baroness feels able to withdraw the amendment.

Baroness Finlay of Llandaff: I am most grateful to the Minister for that optimistic reply and for answering the question “When?” by stating that by Easter we should see something. I hope that that will be before this amendment has to appear on Report, if it needs to—I hope that it will not need to.

I am extremely grateful to all Members of the Committee who spoke. I reassure the noble Baroness, Lady Cumberlege, that I spoke to Elizabeth Buggins about the amendment; she was supportive. The noble Lord, Lord Walton, said that this is permissive and the noble Lord, Lord Tebbit, referred to the need to be able to express how you would wish to be disposed of after death.

The Mental Capacity Act, to which the noble Baroness, Lady Barker, referred, requires something in writing for advance decisions to refuse treatment. When the best-interest decision is being made on behalf of someone who has lost capacity and their advance statement of wishes is being considered as part of that information, we are obliged to seek the views of as broad a group as possible. We often have only the verbally expressed views of family and friends; you are looking for consistency in that verbally expressed view. Similarly, with funerary wishes, we will ask the family if they know how the person wished to be disposed of. Very often, there will be only a comment about burial or cremation—that is what guides the way in which the body is disposed of. It is quite rare to have that in writing. I went through the guidance on the Mental Capacity Act to address the point that was raised. I hope that that has answered it.

I had a helpful conversation with James Neuberger about the monitoring that is needed. We discussed possibly asterisking on the register—or however—and about monitoring the outcome. I understand that there may be difficulties if this is locked in primary legislation and if there needs to be a subsequent review, because it would need further primary legislation to undo it.

With those comments and the overwhelming support that I have had from all parts of the Committee—noble Lords who are not here today have also expressed overwhelming support for this amendment—I beg leave, holding the Minister to her Easter promise, to withdraw the amendment.

Amendment 126

Moved by Baroness Masham of Ilton

126: After Clause 32, insert the following new Clause—

“Admission of patients with spinal injuries

(1) The Secretary of State shall by regulations establish a national bed bureau for patients with spinal injuries to monitor and manage the availability of hospital beds for patients with spinal injuries.

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(2) The bureau must in particular aim to meet the following objectives—

(a) to provide a single commissioning service across England and Wales for the provision of beds in spinal units;

(b) to work with primary care trusts and hospital trusts to co-ordinate information on the availability of hospital beds for patients with spinal injuries within each strategic health authority; and

(c) to ensure that beds are made available to patients with spinal injuries as soon as possible following admission, both when a patient is admitted for the first time and when a patient is urgently readmitted.

(3) Regulations under this section must stipulate—

(a) details of how membership of the bureau is to be decided,

(b) the terms of reference of the bureau,

(c) the types of information that hospitals must make accessible to the bureau for the purposes of establishing availability of beds,

(d) details of any pay or remuneration made to members of the bureau,

(e) any powers which the bureau will have to instruct hospitals to admit patients from outside their usual area.

(4) At the end of each financial year, the bureau must produce a report for the Secretary of State which outlines how each of the objectives in subsection (2) have been met and which makes recommendations as to how performance in these areas could be improved.

(5) The Secretary of State must respond in writing to the bureau’s report within two months of its reporting.

(6) Regulations made by the Secretary of State under this section are—

(a) to be made by statutory instrument, and

(b) subject to annulment in pursuance of a resolution of either House of Parliament.”

Baroness Masham of Ilton: I must declare an interest in relation to this amendment, which is about spinal cord injuries.

I broke my back in 1958 and was taken to a nearby accident hospital at Swindon. I sustained a complete lesion at T5 and had many fractured ribs, a suspected head injury and serious internal haemorrhaging. My top half was in agony and I had no feeling below my breasts, which was most confusing. My life was saved by blood transfusions. Having lived through the night, and when the bleeding was controlled, I was transferred to the spinal unit at Stoke Mandeville Hospital the next day. We were treated in an old nissen hut but the medical nursing and physiotherapy were world-renowned, and the support from fellow patients was invaluable. Once I left hospital and got married, I realised that not all paralysed people went to spinal units, with the disastrous results of bowel and bladder problems, sepsis from infected pressure sores and irreversible problems such as joint contractures. That is why, with colleagues, I founded the Spinal Injuries Association 35 years ago.

4.15 pm

We are extremely concerned about the crisis situation that many people with spinal cord injuries, and their families, find themselves in at present. In many parts of the country, people cannot be admitted to a spinal unit with the expertise needed to treat and rehabilitate

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them, so complications set in. One of the worst is depression. Since 1980, the number of beds has fallen while the proportion of people surviving spinal cord injuries has increased. Pressure on specialist spinal cord injury beds has led to long-term spinal cord injury patients admitted to general hospitals where they are not offered basic spinal cord injury care get the complications I mentioned and so increase long-term costs to the NHS.

Amendment 126 inserts a new clause entitled,

“Admission of patients with spinal injures”.

It states:

“The Secretary of State shall by regulations establish a national bed bureau for patients with spinal injuries to monitor and manage the availability of hospital beds for patients with spinal injuries ... The bureau must in particular aim to meet the following objectives ... to provide a single commissioning service across England and Wales for the provision of beds in spinal units ... to work with primary care trusts and hospital trusts to co-ordinate information on the availability of hospital beds for patients with spinal injuries within each strategic health authority; and ... to ensure that beds are made available to patients with spinal injuries as soon as possible following admission, both when a patient is admitted for the first time and when a patient is urgently readmitted”.

Spinal cord injury centres are classed as specialised services under the Department of Health’s national definition set. Specialised services are those with low patient numbers requiring a critical mass of patients to make care costs effective. Specialised services are vital, but expensive in isolation. Primary care trusts currently come together to form consortia to commission such services. The Government’s commissioning framework includes many of the recommendations made by the independent review of commissioning arrangements for specialised services led by Sir David Carter.

However, the system does not seem to be working as far as spinal cord injury patients are concerned. If it were working, a spinal cord injury patient with a medical emergency, whether a new acute injury or a readmission condition, would be promptly admitted into a place of safety. This is not happening in a large proportion of cases. I am told that there has been no improvement in the care offered to spinal cord injury patients since the South of England Board was established. Matters are worse than before, and I keep hearing of severely injured tetraplegics—people with broken necks—having to be kept in general hospital intensive care units on respirators, costing, on average, £2,000 a day. They could be having expert treatment in spinal units for less cost if the facilities existed and if free spinal beds and funding were transparent across the country in a true National Health Service spirit.

At the opening of a cancer centre two weeks ago, Alan Johnson, the Secretary of State for Health, said:

“This centre should reassure patients that the advances we have made recently in cancer services are only the beginning of what we intend to be able to provide in the near future”.

That is good news, but in the amendment we are only asking for the correct treatment for spinal cord-injured patients, whose fate at the moment is a lottery. The noble Lord, Lord Darzi, always quotes his wish for high quality care for all. I hope that the Minister will seriously consider the amendment. I beg to move.

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Earl Howe: I support the noble Baroness in her very well considered amendment. To my mind, there are three main problems here. First, we do not know precisely how many spinal cord-injured people there are each year. We know roughly, but we have no nationally collected data and, on the basis that what you cannot measure you cannot have a proper policy for, the first lesson from the noble Baroness is that we need to know the numbers.

Secondly, there is a shortage of spinal cord injury beds. The spinal cord injury service in the UK has a total of up to 450 beds; the precise figure varies depending on how many beds are closed at any one time. They are located across eight NHS centres in England and one each in Northern Ireland, Scotland and Wales. Since 1980, the number of beds has fallen, while the proportion of people surviving spinal cord injuries has increased. Pressure on specialist beds has led to long-term spinal-injured people being admitted into non-specialist hospitals, where they are not offered basic spinal cord injury care requirements, and they often develop complications unrelated to the cause of their admission. Those complications increase rehabilitation time and reduce final outcomes.

Thirdly, there is a lack of co-ordination, which is the sine qua non of enabling swift and appropriate referral. This is not a case of asking for more money to be spent on spinal injury care, but rather that the same amount of money should be spent in a different way. At present, many of those with spinal cord injuries are spending time being managed in non-specialist centres by people who lack the necessary competence. As a result, they develop complications, as I said, which result in longer stays and poorer outcomes. It has been estimated by the SIA that if every spinal cord injury patient were appropriately managed from the outset, the cost of treating each person would be less. That means that one could treat more people with the same amount of money.

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