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Copy of Bill as debated
Delegated Powers 3rd Report
The Deputy Chairman of Committees (Lord Geddes): I am obliged, as those who are conversant with Grand Committees will know, to advise that, if there is a Division in the Chamber while we are sitting, the Committee will adjourn as soon as the Division Bells are rung and will resume after 10 minutes.
Baroness Barker: The noble Baroness, Lady Thornton, was kind enough to explain to the noble Earl, Lord Howe, and me that the noble Lord, Lord Darzi, is unable to be with us today because of a family bereavement. On behalf of the Committee, I should like to extend our condolences to the noble Lord, Lord Darzi, and his family. The noble Earl, Lord Howe, and my noble friend Lady Tonge are delayed and will be with us shortly. I am sure that in the absence of the noble Lord, Lord Darzi, the noble Baroness, Lady Thornton, will take the Committee through with her usual thoroughness and aplomb. I wish her all the best for this afternoon.
Clause 32 : Disclosure of information by Her Majesty's Revenue and Customs
123: Clause 32, page 31, line 41, at end insert in so far as such income and expenses relate to practitioners professional activities
Baroness Cumberlege: I should like to associate myself with those comments.
I shall speak to Amendments 123 and 124 in the name of my noble friend Lord Howe. Sadly, the Committee is denied his customary elegance, but I shall do my best. Clause 32 provides for disclosure of information by HMRC to enable the Department of Health to collect statistical data about the earnings and expenses of GPs and dentists. I understand that this type of data gathering has been carried out annually over a number of years, but it appears that since 2005 the disclosure of this particular information by HMRC has been technically illegal, which is why matters need to be regularised by means of this clause.
I have no difficulty with the principle of what is proposed. Subsection (4) specifies that the information that is disclosed has to be in a form which does not,
The Explanatory Notes say that this means that the information has to be presented as an anonymised summary of earnings and expenses, and will not extend to matters unconnected with doctors and dentists professional activities.
The trouble is that the clause does not quite say that. It says that the information has to be presented,
Taken literally, that could apply for the disclosure of identifiable information relating to a specific GP practice with more than one partner. You would not be able to ascertain the income of one individual, but you would be able to ascertain the income and expenses of the partnership.
The wording of the clause is not as tight as I would like to see it. It does not amount to a guarantee that all information will be anonymised. One could, for example, envisage a summary of information covering a particular town or area of the country. As I read it, such a summary could still, strictly speaking, be legally disclosed within the terms of this clause. When we talk about an anonymised summary, we tend to think of a brief resumé of aggregated data. But a summary could be much more elaborate than that. You could have an anonymised summary which showed clearly how doctors income varied between rural and urban areas, between the north and south of the country and whether they were dispensing or non-dispensing practitioners and so on. You could also have a summary which made it quite clear that the range was between the highest and the lowest levels of net income enjoyed by GPsin other words, not just an average or mean. It would be helpful if the Minister could tell us what precise form these summaries usually take.
Equally, nothing in the clause reflects the assurance contained in the Explanatory Notes that only information relating to doctors and dentists professional activities may be passed to the Department of Health. The wording of subsection (2) could allow the Department of Health to be given data about unearned as well as earned income. Again, the drafting is, to my mind, uncomfortably loose. It could be taken to allow the department to gather information for purposes other than the annual earnings and expenses inquiry. I appreciate that Clause 32 is meant to do no more than consolidate existing arrangements. I have no doubt that the Minister will assure me that there is no intention to go beyond those arrangements. Nevertheless. I argue that we could perhaps do better as regards the way in which the provision is framed. I beg to move.
Baroness Thornton:I thank the noble Baroness, Lady Barker, for her kind words; I will ensure that my noble friend receives them and those of the noble Baroness, Lady Cumberlege. I assure her that she definitely matched the noble Earl in her eloquence.
I will address the amendments together. Amendment 123 seeks to limit Clause 32 so that it relates only to the income or expenses of dentists or GPs in respect of their professional activities. The GP earnings and expenses inquiry and the dental earnings and expenses inquiry draw on the anonymised and aggregated analyses that the HMRC transfers to the NHS information centre for health and social care. The resulting reports are intended to provide single, trusted sources of information on GP earnings and expenses and dental practitioner earnings and expenses that can be relied upon by the four UK health
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I completely agree with the noble Baronesss sentiments that it is in no ones interest to use HMRC data for GPs and dental practitioners that are unconnected with their professional activities. Having said that, this is a rather complex area and I hope that noble Lords will bear with me while I explain further. As noble Lords know, GPs can be contractors or salaried employees. Where GPs operate solely as contractors, the relevant data would be unaffected by the proposed amendment. However, where a GP draws a salary of any kind it is not possible, from analysis of the tax data, to unambiguously confirm that the recorded employment earnings of GPs relate to professional medical activities. This is because the tax data that the HMRC analyses record the business of the employer but not the occupation of individual employees, as this information is not needed to calculate tax liability.
Given that it is impossible, in practice, to have certainty in this regard, the income of all salaried GPs could be ruled out of the analysis by the proposed amendment. This would be highly undesirable given the large increase in the number of salaried GPs over recent years from 3,117 in 2003 to 7,246 in 2007.
The amendment seeks to insert a safeguard into the process, and I would like to reassure noble Lords that the most important safeguard is that the data in question must be anonymised and aggregated. Also, the whole process is overseen by a group known as the Technical Steering Committee. The membership of the committee includes representatives from the four UK health departments and the British Medical Association. They are of the view that the data in question are a necessary part of the inquiry. I hope that that reassures the noble Baroness and that she will feel able to withdraw this amendment.
I turn to the second amendment in this group. Amendment 124 would prevent the HMRC from sharing analyses from which information relating to a group of persons can be ascertained. I appreciate the intention of the amendmentthat we should seek to preserve taxpayer confidentiality to the greatest possible extent.
In the reports, the earnings and expenses are analysed through a range of groupings that are useful both to the Government and the professions. For example, the GP inquiry breaks down overall GPs by contract type, by country within the United Kingdom and by employment status. This highlights the difficulties that are faced when one tries to find an appropriate level of safeguard, and why the Government have decided that the most appropriate safeguard operates at an individual level.
Let us be clear on precisely what the clause as currently drafted permits. It is not enough for the information simply to be anonymised. The HMRC must also bring the anonymised data together at an
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The current practice is for HMRC not to release aggregated, anonymised statistics based on less than 30 cases. This figure would be increased if statistics were thought to be potentially disclosive at, for example, practice level; that is, when there are large practices. The safeguards mean that there is no possibility whatever of any individual being identified from the data disclosed. Nor is there any possibility of a particular GPs practice being identified because aggregation is done in a way which cuts across individual practices and protects against that disclosure risk. For these reasons, I hope that the noble Baroness will not press her amendments.
Baroness Cumberlege: I thank the Minister for that reply. There are just one or two other points that I was hoping the Minister might have responded to, but if she is not able to do so today, I shall quite understand. Perhaps she would write in that case to my noble friend and to me. How is the information stored? Who precisely has access to it? Can she give us an assurance that protocols are in place to prevent the information leaking? My noble friend and I have in mind memory sticks, DVDs or laptops, which can get into the wrong hands, as we know.
Baroness Thornton: If I might, I shall write to the noble Earl and the noble Baroness with that precise information and circulate it to the rest of the Committee.
Baroness Cumberlege: I am grateful to the Minister. I beg leave to withdraw the amendment.
125: After Clause 32, insert the following new Clause
(1) In this section, the conditions for preferential organ donation are that
(a) the deceased donor (D) had a close relative or friend (R) on the transplant waiting list, and
(b) D had expressed a wish, or the family of D had expressed a wish on behalf of D, that a particular organ or organs from D should be considered for transplant to R.
(2) If the conditions in subsection (1) are met, all possible consideration should be given to the wish for preferential organ donation, whilst also taking consideration of
(a) the suitability of Ds organ or organs for transplant to R, and
(b) the needs of other patients waiting for an organ transplant.
Baroness Finlay of Llandaff: I say with confidence that everyone on the Cross Benches would wish to be associated with the words of the noble Baroness, Lady Barker, in sending condolences to the Minister.
I shall start with two cases that outline the need for the amendment. Rachel Leake was registered on the transplant waiting list because of renal failure. Her daughter, Laura Ashworth, was on the organ donor register and had said that she wished to donate her kidney to her mum. Tragically, Laura died of a severe asthma attack, leaving her two year-old daughter orphaned, with her mother, who was on dialysis, to care for her. Lauras organs were donated to three patients in the UK who were on the transplant waiting list, and consideration of donation to her mother was rejected, even though, in life, she had expressed a wish to donate and was even considering being a live donor. There was wide publicity about and outrage at our system that prevented a mother receiving an organ from her deceased daughter even though it was her daughters wish. Interestingly, if Laura had begun the live donor process, her wishes might have been respected, because we have different criteria for live and for dead donors.
I shall tell the Committee about another case that had no publicity. A young man collapsed in the gym and was taken to hospital and into intensive care, where it was discovered that he had suffered a subarachnoid haemorrhage and was declared brain dead. The family was contacted. At that point, it was revealed that his father had died three months previously. His mother said that her other child was on the liver transplant waiting list and understandably asked whether the liver of the child who had been fit and well but was now dead could be considered for transplant to the child who was already on the organ donor transplant waiting list. She was told no.
This woman had lost just about everything. She had lost her husband and her well son; she was losing her already ill son; and the little ray of hope that might have come from this tragedy was being put out.
What does my amendment do? I should say, our amendment; I am grateful to other noble Lords who have put their name to this. It will allow a family member or close friend who is already on the transplant waiting list to be considered in the cross-match process for organ donation, if the family represent the deceased persons wishes to donate an organ to that specific person. This amendment on preferential organ donation would also have to consider the suitability of the organ and, of course, the appropriateness of the cross-match process, as well as the needs of other patients on the waiting list. This is not directed donation. The family of the deceased cannot direct where the organ goes.
We have an increasing problem in this country. The need for organs outstrips the supply. In 1954, the first kidney transplant was a revolutionary and complex treatment for organ failure; today, transplantation is the standard and preferred treatment for organ failure. Organ transplantation is cost-effective; the average yearly cost of dialysis is more than £30,000, while the cost of a kidney transplant is around £17,500. Let us not forget that the closer the tissue match, the lower the risk of rejectionso in related donors your chance of that organ lasting longer is much greater.
Today there are 7,877 people on the organ donation waiting list, increasing at a rate of about 8 per cent a year. Last year, 1,000 people died waiting for an organ or after being too ill to withstand transplant. Such is the shortage of organ donors that this morning I had to amend my figures because, since last Thursday when I originally expected to speak, a further 30 people have been added to the waiting list for organs.
I consulted widely on this amendment, including with Professor James Neuberger of NHS Blood and Transplant, the British Kidney Patient Association, the British Organ Donor Society and Professor Nadey Hakim, who was the world president of the International College of Surgeons, and others. All have been sympathetic to my amendment. The Minister kindly met me to discuss this amendment, and I thank her and the Department of Health most sincerely for those helpful meetings. She has also written to me, and I shall try to address some points in her letter. Before I do that, I should say two things very clearly. First, I reiterate that this is not directed donation and, secondly, it is not presumed consent.
The current law seems to conflict with the spirit of the Mental Capacity Act guidance, which requires staff, when appropriate, to respect an advance statement of wishes and the processes for live donors and dead donors are at variance. That variance seems to be incompatible with the spirit of the Mental Capacity Act. In the helpful letter that I received from the Minister, she pointed out that the amendment recognises the need to ensure that others in urgent clinical need of an organ are not harmed, such as patients registered on the urgent heart scheme, liver patients registered as super-urgent and renal patients identified as highly sensitised. The amendment does not exclude any of those people from prioritisation.
It is important to recognise that there is no objective test of prognosis, however. Some patients are put on the list late because the list is too long, so time on the list itself does not correlate to clinical need; it is only when you get very close to death that the prioritisation can be said to hold a degree of accuracy.
Following a death, the family give or withhold consent for organ donation and that consent can subsequently be withdrawn. Consent becomes irreversible probably at the point of knife to skin of the recipients operation, although there is some dispute about it. It seems as if there has been one case in which it was deemed to be irreversible from the time when the organs were taken out of the donors body, so they were not repatriated. There does not seem to be a clear statement anywhere as to the point of irreversibility to withdraw consent.
The Ministers letter refers to guidance being needed, but rarely do we have sight of guidance before we legislate. It usually comes later, so I humbly suggest that the guidance and details of this could be written once the principle outlined in the amendment has been accepted. The letter also stresses the need for this to be closely monitored, but monitoring procedures are already in place through the Human Tissue Authority, and all steps of the transplant process are registered subject to audit, evaluation and reporting, The devolved
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Let me explain the practicalities of the amendment. A family is told of the reality of their loved-ones death, and after brain-stem death consents to organ donation. The family says that there is a brother, sister or whoever already on the organ transplant list and that the person who has died expressed a wish to donate to that person in the event of death. The transplant team would explain that this relative could be considered along with others but that there was no guarantee because it will depend on the cross-match and the state of the organ, but that everyone will be kept informed. If another patient is moribund and in desperate need of that organ it would be discussed with the family, and if the family still consents to donate, the organ will be given on clinical need. It will be noted on the clinical record of the relative who did not receive the organ so that the family will still get something in return for their gift. The name of the person who did not receive the organ would be asterisked as having been closely in the frame but superseded on clinical need.
Such situations would be rare but should help all groups in our population to understand that we want to support organ donation as giving the gift of life, not raiding their loved-ones body for organs. Many people want to give the gift of life in the event of a tragedy. If they have another family member or close friend who is awaiting transplant is it right that their expressed wishes should be rejected outright, as at present? Currently families lose someone only to find that they cannot gain some good from that death by donating an organ to another loved one who is dying from the lack of a transplant. I should point out that donors often donate several organs, so it is only one that will go to the person who is named by the family. The other organs would go into the pool. It would be helpful if we could drive up donation rates.
The Minister concluded in her letter that the Department of Health was actively considering a change in policy and saw real merit in the proposal. The amendment reintroduces discretion and compassion to clinical decisions for a family faced with the tragedy of a dead loved one who, through that death, has become a potential donor. On concerns that placing this in primary legislation might be too blunt an instrument, I can only say that death is a pretty blunt instrument, so how long will we have to wait and what will be the mechanisms to implement the change needed? If it is not primary legislation what will bring about the changes that we need to push up donation rates? If more detailed guidance is needed, who will write it and when? Will the Committee be informed when this has happened and how?
The clinical community to whom I have spoken feel that it needs the discretion that this amendment would give. That community wants to know what will happen if the same situation arises at a weekend, or even next weekend. The organ donation situation is dire and cannot wait any longer. There have been enough committee reports.
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