Tuesday, 17 March 2009.
Health Bill [HL]
Committee (7th Day)
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.
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”
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,
“enable information relating to a particular person to be ascertained from it”.
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,
“in the form of a summary or collection of information so framed as not to enable information relating to a particular person to be ascertained from it”.
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 GPs—in 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.
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 departments, the British Medical Association and British Dental Association. It is worth noting that my officials have been in discussion with the British Medical Association and the British Dental Association about these matters. Both organisations are closely involved in the production of the inquiries and agree that it is vital that they continue.
I completely agree with the noble Baroness’s sentiments that it is in no one’s 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 amendment—that 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 aggregated level, and only then may it disclose the summarised information to the NHS Information Centre for health and social care.
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 GP’s 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.
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.
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.
I am grateful to the Minister. I beg leave to withdraw the amendment.
Amendment 123 withdrawn.
Amendment 124 not moved.
Clause 32 agreed.
125: After Clause 32, insert the following new Clause—
“Preferential organ donation
(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 D’s organ or organs for transplant to R, and(b) the needs of other patients waiting for an organ transplant.”
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. Laura’s 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 daughter’s 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 person’s 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 rejection—so 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 recipient’s 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 donor’s 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 Minister’s 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 nations must be consulted and I hope that the Minister can tell us that this has happened and will inform the Committee of their response.
Let me explain the practicalities of the amendment. A family is told of the reality of their loved-one’s 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-one’s 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.
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.
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.
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,
“the suitability of D’s organ or organs for transplant to R, and … the needs of other patients waiting for an organ transplant”,
should be considered. The amendment is permissive, but so persuasive that it is crucial to see it in the Bill. I strongly support it.
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. 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.
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.
Extremely briefly, I support the spirit behind the amendment; the actual words we can deal with later.
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 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.
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.
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 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.
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.
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.
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.
(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.”
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.
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 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”.
“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.
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.
A survey was done last year by the SIA which came out with some really quite alarming findings. Some 10 per cent of spinal cord injury patients did not receive any specialist care from a spinal cord injury centre. Some 21 per cent of new injuries did not get admitted within one month of their injury, and the average time from injury to referral was 28 days. It is salutary to read the brief that the SIA sent me, which says that for injuries sustained in rugby football, for example, two-thirds of those with complete spinal cord injury as a result of cervical dislocation who are looked after properly within four hours of injury make a full recovery. Only 5 per cent of those who are looked after properly after four hours will make a useful recovery and none will recover fully. It is rather like stroke, where you have to make certain that you go through a routine religiously and very swiftly after the incident has happened. If you do not do so, the results can be really very poor; the prognosis is poor.
That is the background. I hope that the noble Baroness will not mind my setting it out for her amendment as I have. It is important that the Minister understands what we are talking about here; this is a really very important area of specialist care, which I do not think receives the attention that it deserves.
I strongly support this amendment, to which I have added my name, and I shall be reinforcing much of the background that the noble Earl has just given. I declare an obvious interest, as someone who was paralysed at university more than 40 years ago from a spinal cord injury to my neck, and as vice-chair of the all-party group for the condition.
The number of Peers with spinal cord injury in this House misrepresents its incidence in the general population. Until Lady Darcy’s untimely death last year, there were three of us in a House of around 750 Peers, which far exceeded the estimated numbers of spinal cord-injured people in the general population, which are seen to be low enough for spinal cord injury to be defined as a specialist condition under the Department of Health national definition set. Currently, under Sir David Carter’s Review of Commissioning Arrangements for Specialised Services, published in 2006, spinal cord injury is one of the conditions which should be commissioned at regional level of the health service by specialised commissioning groups, not at the national level. But this is patently not working, as we have heard described so graphically by the noble Baroness, Lady Masham. What is urgently needed is a single commissioning body, as proposed in this amendment, and a national bed bureau.
What is the current position? The precise numbers of people with spinal cord injury in the country are not known and there is no easy means of establishing them. The most reliable estimate is that there are about 40,000 spinal cord-injured people in the UK at any one time and around 700 new traumatic injuries each year. In percentage terms, these figures are small but, in terms of absolute numbers, 40,000 is still a significant group. There are also non-traumatic cases of spinal cord injury from a whole range of causes, such as viral infections, spinal tumours and so on. The incidence of these is thought to be substantially greater than for traumatic spinal cord injury, but, again, the precise numbers are unknown.
There are an estimated 700 people who need emergency first-time admission to a specialised spinal cord injury centre each year. Admission needs to be as soon as possible after injury in order to minimise the damage and not cause additional and entirely unnecessary complications. As noble Lords will hear many times, the earlier a spinal cord-injured person is admitted to a spinal cord injury centre, the less will be the cost of their care and the better will be the outcome. But there is also a vital need for spinal cord injury centre beds for readmission of both elective and emergency spinal cord injury patients.
There is enormous concern among the growing and ageing spinal cord injury population about the inability of district general hospitals to provide them with appropriate care for their existing condition, if they are admitted for non-spinal cord injury conditions such as a broken leg. Their concern is not about the hospital’s ability to treat the broken leg but about the lack of experience and knowledge to provide appropriate pressure care and bowel management. I had not needed to have any in-patient care for more than 35 years, because of my excellent speedy initial care, but I have been admitted twice overnight in the past few years for non-spinal cord reasons to my local trust, which happens to be that of my noble friend Lord Darzi. Both times it was abundantly clear that staff had no knowledge or awareness that my spinal cord injury needs required attention. It was entirely up to me whether or not they were met.
Over the past two years the Spinal Injuries Association has been conducting research with the spinal injury centres to try to establish the true situation in the country. As we have heard, it found that the average time from injury to admission to a specialist spinal cord injury centre for newly injured patients is 46 days—more than six weeks. This is the most crucial time for dealing with the trauma and preventing complications and can reduce the catastrophic effects of the injury. As a result of these serious delays, lengths of stay in specialist SCI centre beds are then greater than need be because the patients have complications that might have been avoided if they had been admitted more promptly. This in turn exacerbates the pressure on specialist beds and reduces capacity for specialist care. It is thought that at least 10 per cent of people with a spinal cord injury never receive specialist care from an SCI centre at all. What that means in terms of unnecessary complications, depression, increased life-long impairment and lack of rehabilitation is appalling.
I turn to the issue of readmission capability for people with SCI. A study in 2000 of readmissions to SCI centres found that almost half—42 per cent—of established SCI patients did not gain admission to the specialist care centre that they needed. What capacity can the present SCI service offer to meet the needs of both new and existing SCI patients? A total of only 450 beds are distributed between eight NHS SCI centres within host NHS trusts in England and one each in Northern Ireland, Wales and Scotland. These centres developed in response to the Second World War and the needs of heavy industry and the coal mines, so they are generally not near contemporary centres of population. As a result, patients can be referred to centres hundreds of miles from their home and family and the scene of their accident, which can be for months, or even years, on end. If you live in Cornwall and need specialist care for an SCI, you have to travel as far as Salisbury for the nearest SCI centre.
A further complication is that the host trust will too often divert funds away from specialist SCI services for which they were intended to plug leaks elsewhere within the trust. Trusts also have a tendency to use specialist SCI beds for non-SCI patients if they are unoccupied. A national bed bureau for patients with SCI, as proposed in this amendment, would help to ensure that the existing bed capacity was used to its optimum level. It would help to address the current wasteful situation where SCI patients spend weeks waiting for referral in a district general hospital; as we have heard, they often develop additional complications, such as pressure sores, which take months for the specialist centre to eradicate, so filling a bed for much longer than anybody wants.
The amendment would provide every A&E department with a systematic and coherent system for placing their spinal cord-injured emergencies in specialist care. What is more, it could heighten awareness of acute traumatic SCI in each A&E department, and so reduce the incidence of missed cases.
Many Members of the Committee will have seen the article about Daniel James in the Sunday Times on 15 March. He was paralysed in a rugby accident, taken to a local hospital and moved unnecessarily many times, and then had to wait until the next day for an MRI scan. He was put last on the list for the scan because the hospital was not aware of his injuries. His hands and arms were moving when he first had his accident, but after having to wait for an ambulance, which arrived at about 10.30 at night, when he finally arrived at Stoke Mandeville he had lost all movement and feeling in his fingers, which he did not regain. As a result, he has the sad renown of being the youngest person to go to Switzerland for assisted suicide.
Crucially, a national bed bureau would mean that we would start to get a true estimate of the level of spinal cord injury service that is required. As my noble friend Lord Darzi said in response to Amendment 35:
“Commissioning cannot be improved without high quality information”.—[Official Report, 26/2/09; col. GC 178.]
With a firmer grip on the numbers, I hope that we can begin to reverse the current decline and ensure that there are no more cases of people waiting weeks for referral to the care and rehabilitation that they so desperately need.
I, too, associate myself with the amendment of the noble Baroness, Lady Masham. That is not simply on the basis of Yorkshire solidarity, commendable though that undoubtedly is, but comes from my experience in particular. Most of my ministry has been in coal-mining communities. The noble Baroness, Lady Wilkins, briefly referred to coal mining as an originator of the injuries of which we speak. I have awareness from working in a coal-mining village of the difference in treatment, and therefore in results, that is unique to the particular set of spinal injuries.
Some with mining injuries had excellent treatment and have recovered or, at least, have been enabled to cope well with their injuries. Others, whose original injuries had been no more serious, remained ill and, in some cases, died quite unnecessarily, because they had not been treated quickly enough or with sufficient skill. There is a particular need for a national policy on spinal injuries, which are different from the other serious injuries that we see and of which we speak.
I was almost surprised to hear that the number of new cases is as low as 700 a year. My own experience is of quite significant numbers. Certainly, if we add together both the immediate traumatic injuries, and those which appear through illness and infection, it is a significant number of people. Significant changes could be made in this area with significant results if the amendment were accepted into the Bill. I hope that we will do exactly that.
I give general support to the principles underlying the extremely important amendment. Having a national bed bureau for patients with spinal injuries is a wholly admirable idea, as is that of having a single commissioning service across England and Wales for the provision of beds in spinal units.
As the noble Baroness, Lady Wilkins, has said, the existing spinal cord injury centres have grown up largely for historical reasons in places where, if one were planning the service from the beginning, one would not necessarily place them. I knew the late Doctor Ludwig Guttmann personally. He was most outstanding and inspirational. His idea—his vision—was to develop that famous spinal injuries centre at Stoke Mandeville, where the quality of treatment, management and rehabilitation and after-care of patients was of such very high quality, as it continues to be today. The National Health Service has funded it substantially, but a lot of the funding for the unit and many of the facilities that have been developed there have come through charitable activities—not least those of Jimmy Savile and others, who have produced an enormous amount of funding.
I have to declare an interest, first, as a patron of the Spinal Injuries Association and, secondly, because my younger daughter, who suffered a spinal injury three years ago, received outstanding care at Stoke Mandeville. Elsewhere, for historical reasons, Dr Silver established a nascent spinal injuries centre in Southport, which has grown and developed. He later became the director of Stoke Mandeville.
For many years in the northern region, which is where I have lived and spent much of my professional life practising neurology, few services were provided for spinal-injured patients. I was brought up in the middle of the Durham coalfield in a mining community. At one stage, there was an attempt to build a spinal injuries unit in a district general hospital at Hexham, but the staffing levels and the ability to attract the appropriate level of staff, including nursing and medical, were not good. Eventually, the region decided to establish a spinal injuries unit at Middlesbrough. That unit at the James Cook University Hospital, Middlesbrough, has an excellent reputation and has developed very well. But Middlesbrough is 50 miles from the biggest centre of population on Tyneside. The region includes Carlisle and Whitehaven. Patients suffering spinal injuries in the west of the region have to travel enormous distances to get to that centre in Middlesbrough. The unevenness of distribution of these centres across the country is unsatisfactory, despite the level of service that they give.
The one caveat that I have to say to my noble friends Lady Masham and Lady Wilkins is the heading of the proposed new clause, “Admission of patients with spinal injuries”. It is important to recognise—I speak as a neurologist—that these centres also treat effectively patients with non-progressive spinal cord deficits, illnesses such as transverse myelitis, spinal artery thrombosis and so on, which also cause quite severe degrees of paralysis.
I shall never forget, in the first year that I was a consultant, being called out by a GP at lunchtime to see a boy aged 17 who had cycled to school that morning. On the way home, he developed weakness in one arm and subsequently in the other arm, along with sensory loss. By the time he got home, he could no longer ride his cycle and was becoming paralysed in both lower limbs. I saw him at noon. By one o’clock we had him in hospital and by two o’clock he was on a respirator, paralysed in all four limbs, due to transverse myelitis. Subsequently, he was cared for brilliantly and, finally, was transferred to a spinal injury unit. He made an excellent recovery, eventually went to university and got an excellent degree.
That kind of non-traumatic neurological illness also needs to be handled in these units. It is important to take account of all those needs as well. It is crucial and, I fully appreciate, extremely difficult for the Government to overlook the historical background which led to the establishment of some of those units, frankly, in the wrong places; that is, remote from major centres of population. But the idea of having a national bed bureau and a single national commissioning service to improve the facilities of spinal injured patients and patients with spinal disease causing paralysis across the country is admirable. Hence, even though I would perhaps dabble a little with some of the wording, I strongly support the principle of this amendment.
The Minister was just a wee lass aged six when my noble friend had her terrible accident. She has made the case extremely strongly for this amendment, as have the noble Earl, Lord Howe, and others. Her Majesty’s Government claim to be a caring Government and I desperately hope that they will accept this amendment, which I believe is one of the most important amendments tabled so far to this Bill. I give it my wholehearted support.
I, too, support the amendment tabled by the noble Baroness, Lady Masham. The noble Earl, Lord Howe, spoke about stroke, of which I had personal experience when the wife of an American relative came to this country some years ago and had a serious stroke. She was taken to one of our best teaching hospitals, not far from here, in the middle of the night. I spent the night there begging the staff to give her a brain scan. Her husband arrived, asked for the same thing and was told, in no uncertain terms, that that is not what we do in this country. That woman still cannot speak. Our practice has changed, but the average person cannot argue. If people with spinal injuries are in the wrong place, they are not given access to the right sort of care very quickly. We heard about the particularly moving tragedy of Daniel James. We cannot care in the way that we would want to for people who suffer these serious accidents. I hope that we can persuade the Minister to accept this amendment.
I do not think we should forget how lucky we are to have had this amendment proposed by the noble Baroness, Lady Masham. I say that because she will never forget how lucky she was to survive her accident all those years ago. The survival rate for people with such injuries was pretty low at that time. Indeed, if we may put it in terms of before Guttmann—and what an extraordinary man he was—the life expectancy of people who had suffered a severe spinal injury was very short indeed. If they recovered from the immediate injury, it was odds-on that before long they would die of a kidney infection, a urinary infection, bedsores or other associated problems. Guttmann made the difference. It is due to him that so many people survive today.
Noble Lords may recollect that following the IRA/Sinn Fein attempt to murder my noble friend Lady Thatcher, who was then the Prime Minister, my wife and I, who were injured, were taken initially to hospital in Brighton and then, if my memory serves me rightly, she was transferred a week or two later to the spinal injuries unit at Stoke Mandeville, and I was allowed to accompany her. I might say in passing that it was later realised, just before I left Stoke Mandeville Hospital, that I had not been a fake; I had a fractured spine. I had fractured a vertebra in the course of the bombing, and it was not noticed until just before I left hospital. Oddly enough, it was the second time that I had fractured a vertebra and nobody had noticed until some time afterwards. I have been very lucky indeed in my life. From that, I conclude not just that I have been lucky, but that the diagnosis of such injuries among other traumatic injuries in a patient is not quite as easy as we might suppose at times. More to the point, it now seems quite likely that my wife’s injury was more complex than the early diagnosis suggested. It might well have been better for her had she been airlifted straight to a spinal injuries unit immediately she was extricated from the wreckage of the hotel. To me, that underlines the force of what the noble Baroness, Lady Masham, and other noble Lords have said.
Twenty-five year ago, my wife and I were pretty lucky in that the spinal injuries unit at Stoke Mandeville had recently had been rebuilt, not least, as has been said, due to the work of Jimmy Savile. Things were different then from the way they are now. It was accepted in those days that a unit such as that at Stoke Mandeville should have vacant beds and that the bed occupancy rate should not be anything like as high as is now demanded. Of course, those empty beds were held at units like Stoke in those days for spinally injured patients. Now the box-ticking bed occupancy rate philosophy that has permeated the National Health Service requires that those beds are occupied. It is regarded as a failure if they are not occupied. Since spinally injured patients do not turn up obligingly to replace one who has just been let out of hospital, the only way that can be accomplished is by putting into such a unit patients who are in hospital for general surgery. The result is quite catastrophic, both for patients and for the health service. First, I suspect that many of those patients would be better off not in the spinal injuries unit but in the mainstream hospital.
Secondly, as we all know from some of the tragic incidents that have occurred, someone who is in need of a bed in a specialised unit may be weeks in getting one. Their recovery will be at least grossly impaired, and it may be that they will not recover at all. I emphasise that this is not just a matter of the medical and nursing care; it is a matter that in those units, patients generally stay for quite a long time. Many are young people who have suddenly been transferred from a life of action and taking risks, which is how they were before they arrived in hospital, and who find themselves facing a very different future.
My wife and I saw a number of patients who simply could not cope with that. They just turned their faces to the wall and died. They pulled up their roots. That so many survived was not least due to the peer pressure of other patients, which was enormously important, as well as the remarkable nursing care that was offered. That is in danger of going. The last time that I was at Stoke Mandeville, a year or so ago, the medical staff were gravely concerned at the fact that their bed occupancy rate was high solely because they had patients there who did not need the services that they could provide. Equally, they knew that elsewhere there were patients who desperately needed those services and who were blocking beds in other hospitals. I say that they were blocking beds because sometimes they were in high dependency beds, and even intensive care beds, where they did not need to be. They were damaging the interests of other patients.
Like the noble Baroness, Lady Wilkins, my wife recently had to have an overnight stay at the Royal National Orthopaedic Hospital. There is an excellent spinal unit there, and it is a wonderful hospital. It somehow underlines my belief that very often the best hospitals are in the worst buildings; and there are some pretty awful buildings there. It is a hospital where I find that people are happy. The atmosphere of the hospital is a quite extraordinary thing. My wife was on a general ward for an operation that was not directly related to her spinal injury, although it to some extent stemmed from it. The staff there were jolly good, nice people, who well trained, but they were not trained in dealing with a spinally injured patient. Fortunately, that hospital is very wise, and it was able to provide accommodation for one of my wife’s carers to go with her. Otherwise, there would have been very considerable difficulties. It is much quicker to get a pressure sore than it is to cure one. It can be extremely expensive, both to the patient and to the health service.
So we are looking at a system which has come not to satisfy the needs of the patients. As I have said, the spinally injured may make much less of a recovery than might have been, with all that that entails for the patient, their family and, of course, for the public purse, with the costs which rattle on down for many years afterwards. Something needs therefore to be done to ensure that those beds are held open, ready for spinally injured patients. If that is not to be an inefficient system, it needs some form of backup of the kind which the noble Baroness, Lady Masham, envisaged. A little bit of planning could avoid great suffering and expense. It is time that it was done.
I thank the noble Baroness, Lady Masham, for proposing the amendment. It is evident from what has been said around the Committee today that the clinical pathways have not been sufficient to meet the needs. It is around the clinical pathways and quality of care which the Bill centres. There is obviously a great need, particularly in general hospitals, where patients go inappropriately and where there is insufficient knowledge, training and skills to be able to cope with spinal injuries and neurological conditions. While other conditions may well come to the fore by our saying that the clinical pathways are not being met, spinal injuries are very important in terms of quality of life and future development. By way of an interim measure, a bureau which supplied immediate care for people suffering from a spinal injury would perhaps stop inappropriate suffering and even death of patients. I very much hope that the Minister will support the amendment.
As my noble friend Lord Carlile has put his name to the amendment, perhaps I might make just one or two brief comments. Nobody ever accused the noble Lord, Lord Tebbit, of not having backbone and of coming away uninjured; we do not realise quite how tough his backbone is.
I take three key points from the debate. First, as the noble Earl, Lord Howe, said, the services which we have are the result of historical accident and great charitable effort—I have no wish to denigrate that at all—but I am not sure that those services would now be deemed to be the best if we were to start from scratch.
Secondly, the noble Earl, Lord Howe, was right that we are in urgent need of data on incidence, frequency and, most of all, location. Let us be absolutely honest: we shall not have a specialist unit in every district general hospital; there will always need to be a small number of highly specialised units which filter out their knowledge and expertise into secondary and primary care. The question is where they should be. The location of our current services is an accident. I do not know, and I would like somebody to tell me, whether there is a case for a new unit in Birmingham, because the new military hospital is there, which I imagine is seeing an awful lot of people with spinal injuries and is perhaps developing an area of expertise. Particular sports might attract a unit. For example, I imagine that if you were going to choose a location for a national centre in Scotland, you would want to find a location that was not only within a short distance of the largest centre of population but also within reach of people who have climbing accidents, who have a high number of spinal injuries.
Thirdly, the noble Lord, Lord Walton of Detchant, was leading us to the right point on the collocation of those services with others. In this day and age, with research as it is, there is an increasingly convincing case for having spinal injury and neurological units, if not together, then in close proximity. I do not wish to take the Committee into territory that might be contentious, but some of the research—for example, on stem cells—is going on in neurology and will have applications to those with spinal injuries.
When the Minister comes to respond to the debate, she may feel that her department is unable to accept the amendment. However, perhaps she can take those points from this debate and indicate whether and how the department would be willing to review and update the overall provision of these badly needed services.
First, a debate like this shows the tremendous strength, expertise and personal experience in the Committee; I have found it very moving. To take up the point of the noble Baroness, Lady Barker, to think that we will be doing a lot more building in the future is pretty unrealistic. With our tremendous difficulty with resources, globally as well as in this country, I cannot see new units being built. That is why there is great strength in the amendment. It says that we must work with what we have. The secret is in how we are going to commission, using the available services.
I like the idea of the noble Baroness, Lady Emerton, that we should perhaps have an interim solution. I see the Minister looking more and more glum as she replies to the debate. I suspect that she will say that she is very sorry but she cannot go with a national bed bureau, so we will have to try to think of other ways of resolving some of these problems. As I have said, we must do it through commissioning.
The other area is awareness. I am appalled by some of the statistics. Just 19 per cent of new injuries were admitted on the day of injury, yet we have heard from people with enormous expertise that speed is of the essence; I know that the noble Baroness, Lady Masham, has got her society going and tried to increase awareness of the issue. Can the Minister, thinking forward, say in her reply what the Government can do to ensure that there is much greater awareness of that, especially in accident and emergency units but also throughout the country? It is important that people are admitted within four hours of the injury if at all possible.
I do not want to detain the Committee. I want to make a couple of points and, in particular, add my support to this incredibly important amendment. I was impressed by the contribution of the noble Earl, Lord Howe. It seems to me that we have a win-win situation here.
I do not altogether accept that we cannot expand capacity. The foundation trusts, in general, build up considerable cash reserves and the capacity to borrow for capital projects. In the years ahead, however, after the following two years, there will be the most incredible squeeze on resources in the National Heath Service for revenue for ongoing expenditure. The Department of Heath probably cannot afford not to have the amendment, or something rather similar to it. We will be unable to spend at the same level as we have in the past. Here we have a possibility of improving the quality of services for severely injured or unwell people—of course, we all want to see that—while cutting the overall revenue spend, so I hope that the Minister will be able to support the amendment.
My final point is about bed occupancy. In mental health, we have always worked to 100 per cent bed occupancy and under government targets, we are being driven to a lower level: 85 per cent bed occupancy. I find it hard to imagine that other bits of the NHS are driving bed occupancy up to 100 per cent, so I hope the department can clarify that point because it is extraordinarily important.
Amendment 126, moved by the noble Baroness, Lady Masham, would establish in statute a new national bed bureau to oversee the commissioning of services for spinal injuries. I am grateful to the noble Baroness for raising the important issue of spinal injury services and for her contribution to the improvement of services for those with spinal injuries through her presidency of the Spinal Injuries Association.
I found the contribution made by the noble Lord, Lord Tebbit, very moving. He will not remember, but we had a conversation some years ago when he was campaigning on behalf of Stoke Mandeville Hospital. I expressed my support for his campaign because my grandfather returned from the war and was put back together at Stoke Mandeville. He lived for 25 years in a wheelchair and visited Stoke Mandeville Hospital two or three times a year, so I may have been six years old when my noble friend had her accident, but at that time, I was sitting on the knee of a grandfather in a wheelchair, so I am very sympathetic to this.
I wrote to the noble Baroness on this matter last week, and I hope she will forgive me if I repeat for the record some of the points I made in that letter. I fully sympathise with the situation she described but, at the moment, we are not convinced that primary legislation is the best route to achieving her objectives. In May 2006, Sir David Carter published his Review of Commissioning Arrangements for Specialised Services in response to a request from the noble Lord, Lord Warner, then Minister of State at the Department of Health. This report resulted in the establishment of the National Specialised Commissioning Group, the National Commissioning Group, and 10 new specialised commissioning groups, including one for spinal injuries. The noble Baroness, Lady Cumberlege, is correct that commissioning is the answer.
The new arrangements offered significant improvements in the organisation and governance of specialised services commissioning at local and national level. Specialised commissioning groups plan collectively, share risk through pooled budgets and co-ordinate strategic commissioning across PCT boundaries. No primary legislation was needed to establish them, and one of our concerns is that to place the arrangements for spinal injury services on a statutory footing might undermine the work being undertaken across the breadth of specialised services. That is not to say that we are by any means where we wish to be on this matter.
I understand that the Spinal Injuries Association sits as a partner on the south of England board for the commissioning of spinal injury services. The board has discussed making proposals to the National Specialised Commissioning Group for an English forum for spinal injuries, in similar terms to the proposed amendment, which could help set a strategic direction and address concerns across organisational boundaries.
No formal approach has yet been made to the National Specialised Commissioning Group or its support team. I am pleased to inform noble Lords and the noble Baroness that the director of national specialised commissioning is keen to meet representatives from the Spinal Injuries Association to discuss these proposals. The director is currently in consultation with the south of England board to explore how its existing collaborative arrangements are working, what wider applications they might have and a range of other options for improving commissioning arrangements, all of which has the potential to improve the experience of patients across the country in the way the noble Baroness and other noble Lords described and which we envisage.
The noble Earl, Lord Howe, and my noble friend Lady Wilkins both mentioned the lack of data about the number of spinal injuries. We recognise that this is a problem. The clinical coding for spinal injuries is weak, but the NHS is making bids for new codes which will better identify spinal injury patients and the severity of their cases.
There is a strong case for improving the co-ordination of the commissioning of spinal cord injury services and we are looking to the National Specialised Commissioning Group to lead that. We want to facilitate the meeting as soon as possible to take those arrangements forward. I hope that this offer of further consideration within the existing structures and further discussion with the noble Baroness will go some way towards reassuring her, and that she will withdraw her amendment.
I thank all Members of the Committee who have taken part in this debate for their support. I also thank the Minister, who is always helpful, for which I am very grateful. The Spinal Injuries Association recently received a letter from a consultant in Oldham who had had a spinal cord injured patient. He had contacted Middlesbrough to get the patient a specialised spinal bed, but he was told by Middlesbrough that it takes only patients from its own area. Recently, I was told that five tetraplegics are on respirators, waiting for beds in a spinal unit, in the intensive care unit of the Royal London Hospital. What is that if it is not blocking beds?
On Sunday night, I spoke to the sister of a tetraplegic who has been in the Norfolk and Norwich University Hospital for 12 weeks on a respirator, awaiting a bed in a spinal unit. He has already had a pressure sore. A few years ago, the Spinal Injuries Association did a survey of how patients get pressure sores. It found that most of them occur in intensive care units where everything is monitored, but basic skin is forgotten. How many more such patients in general hospitals across the country are getting into difficulties? How many paraplegics, who get just as many problems and get just as depressed, are in general hospitals?
Some Members of the Committee may have read about the tragic case of the young rugby player mentioned in this week’s Sunday Times. He was treated incorrectly, which made a disaster of his life. My noble friend Lady Wilkins has referred to this young man. I am told that there is an upsurge in rugby accidents. Many sports, such as diving, riding and mountaineering, incur spinal cord injuries, as do driving and industrial injuries, as well as even falling down the stairs and getting stabbed or shot. A tetraplegic in the Royal London Hospital was shot in the neck.
We cannot let this situation get worse. I am sure that this amendment will help. For many years, this problem has been talked about. The noble Lord, Lord Carlile of Berriew, who has put his name to this amendment, said that 20 years ago he was discussing the lack of treatment places for spinal cord injury patients. We must have a better, transparent system of admitting patients across the country. We cannot wait any longer. The noble Baroness mentioned the forum. Forums are very good for talking and discussion, but not for action. Sympathy is not enough. I will bring this amendment back on Report.
Before the noble Baroness withdraws the amendment, will the Minister clarify my understanding of her answer? Are the Government considering putting spinal cord injury into the national commissioning group as opposed to the regional commissioning group, where it is at the moment? In that way, the Government could make the proposed changes in the amendment to provide a national commissioning body without the need for legislation or for making spinal cord injury a special case.
No, we are not considering that at the moment.
After that helpful intervention, I say again that I will bring this back on Report. I beg leave to withdraw the amendment.
Amendment 126 withdrawn.
127: After Clause 32, insert the following new Clause—
“Tax relief on premiums for medical insurance
(1) Where an individual makes a payment in resepct of a premium under a contract of private medical insurance, it shall be deducted from or set off against his income for the year of assessment in which it is made for the purposes of calculating his liability to income tax.
(2) In this section—
(a) a premium, in relation to a contract of insurance, is any amount payable under the contract to the insurer,(b) a contract is a contract of private medical insurance where—(i) it either provides indemnity in respect of all or any of the costs of all or any of the treatments, medical services and other matters for the time being specified in regulations made by the Secretary of State, or in addition to providing indemnity of that description provides cash benefits falling within rules for the time being so specified,(ii) it does not confer any right other than such a right as is mentioned in sub-paragraph (i) above, and(iii) the premium under the contract is reasonable.”
I am aware of the time. We have spent over an hour debating the important amendment proposed by my noble friend, and we are now on the seventh day of Committee. Some Members of the Committee will no doubt remember that I tried to persuade Her Majesty’s Government that this amendment had great merit during the last Health Bill in 2006. I am introducing it again for the same reasons as last time. It would simply greatly encourage individuals and companies to invest in private medical insurance, which in turn—this is the important part—would greatly reduce the National Health Service waiting lists. That is the sole purpose of the amendment. If the proposed EC working hours directive becomes law, it will be even more difficult to dramatically reduce the waiting lists. This amendment would greatly help. For that reason, I beg to move.
I know that I shall be unpopular with the Government for giving warm support to the amendment. When I became a consultant neurologist in 1958, I chose at the outset to be part-time in nine sessions, and I spent two half-days a week in private practice. That was an interesting experience and one which I greatly enjoyed, though I was absolutely meticulous in making certain that my nine NHS sessions were more than fulfilled, often amounting to over 60 hours a week.
At that time, I had a neurological ward with 28 beds, and of those 28 beds in the Newcastle General Hospital there were eight single rooms and two bays, one of 10 beds for women and one of 10 beds for men. Of the eight single rooms, two could be used at any time, if the situation so arose, for the care of private patients. I have no doubt whatever in my mind that, as time went by, the situation became very difficult because, under pressure from the trade unions at the time when Mrs Castle, subsequently Lady Castle, was Secretary of State for Health, slowly but surely private beds were withdrawn from NHS hospitals. We ended up with the ridiculous situation that there were in Newcastle three private beds, one in each of the main general hospitals.
I had by then become a full-time academic, and I was no longer undertaking private practice, after several years as a consultant in part-time practice. I had built up a major research unit for research into neuromuscular disease, for which I developed such a reputation that we had patients referred from other parts of the world to come to that unit for investigation. Very properly, it was the law that any patient coming directly to the UK for treatment from overseas had to be a private patient. That was absolutely right, because it was not the case for people who were visitors from overseas who happened to fall ill. Those who came specifically who were referred from overseas had to be private patients.
That decision by Mrs Castle gave the greatest impetus to the development of private hospitals outside the NHS of any decision of any Government. Before that time, many consultants in part-time private practice were geographically full-time: they looked after their NHS patients and their private patients in the same hospital—they were private wards, all of which were closed. I was thereafter compelled to refuse patients referred to me from the United States, Australia and other countries. I could not take them into hospital because no specialist facilities such as were required for the investigation of neuromuscular disease existed in any private hospital. I found that situation intolerable.
I have always believed that a partnership between the public and the private sectors is a benefit to the National Health Service provided that part-time consultants give their services, as they must for the time for which they are contracted, to the NHS. Individuals with private health insurance have paid their taxes and have in the same way as everyone else contributed to the costs of the NHS. The proposal would benefit the National Health Service by allowing more money to be developed on the private practice side which would go into the hospitals. I support the amendment, as I did under a previous Government. I am a Cross-Bencher; I am not a member of any political party; but I strongly favour this form of tax relief on private medical insurance.
I shall address Amendment 127, tabled by the noble Lord, Lord Palmer. It is a long and well established principle that most personal private expenditure is not eligible for tax relief. Our tax system has to be fair to a very large number of people and relief is given only where it supports specific government priorities. Premiums paid for private medical insurance are treated in the same manner as other personal expenses and are not liable for income tax relief.
Alongside general tax principles, there are several reasons why the Government do not allow tax relief for individuals paying private medical insurance premiums and why they do not support the amendment. The Government do not believe that public money should fund private healthcare. It is a longstanding and fundamental principle of the NHS that it provides a comprehensive, universal health service which is free to all at the point of use. For the Government to subsidise a minority of people who choose to take out private medical insurance would undermine the fundamental principle of equity in the NHS. It would reduce the money available to fund the NHS and other public services. I hope that noble Lords would agree that there must be no question of using tax breaks to subsidise a two-tier health system, which would discriminate against those who were not able to pay for their care. In addition, the level of coverage offered by private medical insurance plans varies widely. For example, it is very rare for them to cover emergency care and access to a private GP, and therefore no one taking advantage of the proposed amendment would be able to opt out of the NHS completely.
We do not believe that the proposal would be a cost-effective use of taxpayers’ money. We have been sparing in our use of tax exemptions and have introduced them only where we are convinced that they offer the best-targeted and most cost-effective support for our objectives. If tax relief was given to the 1.7 million individuals who currently pay for private medical insurance, the cost to the Exchequer would be £810 million.
It is also highly likely that the amendment would cause a behavioural change, with many individuals who currently receive taxable corporate care changing to pay for it personally to gain the benefit. If a quarter of those who currently receive corporate private medical insurance moved, it would increase the cost of the amendment to £1.32 billion. I hope that noble Lords agree that this would not be the best way of using funds available for health.
As with all tax exemptions, the most benefit from the introduction of this proposal would be gained by higher-rate taxpayers, who would get 40 per cent tax relief on the premium paid. It would give little or no benefit to those on the lowest incomes who most need the support of our healthcare system, and those who are not taxpayers would obviously gain no benefit from the amendment whatever.
It would be hard to justify granting relief for this expenditure and not for other expenditure which some might think equally deserving. Notwithstanding the support for the amendment of the noble Lord, Lord Walton of Detchant, I hope that, on reflection, the noble Lord, Lord Palmer, will feel able to withdraw it.
I look back to 2006 to Report stage on an earlier Bill, and it is interesting to be reminded of what the noble Lord, Lord Warner, said in response to the amendment.
With the greatest possible respect the noble Baroness has forgotten that the point behind this is to reduce NHS waiting lists. The new 48-hour directive from Europe will present terrible problems of prolonging the waiting lists for operations such as artificial hips, limbs or whatever. I knew that I would get absolutely nowhere and that the noble Earl, Lord Howe, would be sitting firmly without rising to his feet, as indeed would the noble Baroness, Lady Barker, but we ought not to lose sight of the amendment. I am particularly grateful to my noble friend Lord Walton of Detchant for saying that the idea behind this is to reduce the waiting lists in the NHS for hip replacements and so on.
I am grateful to the noble Baroness for listening to what my noble friend and I had to say and beg leave to withdraw the amendment.
Amendment 127 withdrawn.
128: After Clause 32, insert the following new Clause—
“IncomeIncome from private health care in NHS foundation trusts
For subsections (1) to (7) of section 44 of the National Health Service Act 2006 (c. 41) (private health care) substitute—
“(1) For the purposes of the treatment of income derived from private charges, NHS foundation trusts will have parity with all other NHS trusts.
(2) NHS trusts receiving income from private patient services will be required to demonstrate the benefit to their NHS patients.
(3) “Private charges” means charges imposed in respect of goods and services provided to patients other than patients being provided with goods and services for the purposes of the health service.””
I emphasise at the outset that this is a probing amendment. The aim is to initiate a discussion and explore how best to reform the private patient cap in such a way as to uphold the following fundamental principles. First, private patient work will not change the public service nature of foundation trusts; secondly, private patient work will in every case benefit NHS patients and will not cause detriment to NHS patients. It is not good enough in my view to benefit some NHS patients if you cause detriment to others. One needs both safeguards. Thirdly, the approval of boards of governors will be required for any significant new private patient expenditure, to ensure that the fundamental principles and specified safeguards are adhered to. That would fulfil the requirement for local accountability. The boards of governors would be extremely effective in protecting the resources and position of the NHS, which is why I believe it is the way forward.
Currently, the private patient work of foundation trusts is dealt with through the private patient income cap. This was introduced in the context of the establishment of foundation trusts by the Health and Social Care (Community Health and Standards) Act 2003, and was restated in the National Health Service Act 2006. The cap was imposed by Parliament in response to understandable fears that allowing an open approach to income from private patients may radically change the nature of the NHS. I think that these fears remain valid today.
I declare an interest as chair of a foundation trust. Most Members of the Committee will be aware of that from previous debates However, I emphasise that our trust in east London has no interest at present—I cannot say what it will be in 20 years’ time—in developing private patient services. I am not coming here to plead for something from which my trust would benefit.
I was approached by the Foundation Trust Network to raise this issue, which I was content to do. The network has received expressions of concern from foundations across the country about the detriment to their work caused by the PPI cap as it is currently structured. I hope that in the minutes available to me I can capture those concerns and persuade the Committee that there is a case for reform, whatever that reform looks like.
The proposed new clause would not abolish the cap. Rather, subsection (1) would require that whatever the framework is in the future—we do need a new framework, in my view—it must be the same for NHS trusts that are not foundation trusts and for foundation trusts themselves. There are six problems with the current private patient cap. First, and most obvious, is the uneven playing field. Those NHS trusts which are not yet FTs are not subject to any cap and can provide services to private patients without limit. At the other end of the scale, a mental health foundation trust has a zero cap and cannot provide any private patient work. As I have said before, that is not a problem for me, but it is a fact. In the middle are foundation trusts that provide acute care. The level of the cap depends on the amount of private work that a trust did in 2002-03, the year before the first foundation trusts were authorised. The cap varies because of that slightly odd way of doing things. One FT has a 30 per cent cap, whereas many others have a 5 per cent cap. It just depends on what proportion of their work was private in 2002-03. Over time, the inequities are likely to have perverse consequences. Trusts may elect not to become foundation trusts because of the private patient cap on the FTs, but not on NHS trusts. That would thwart the Government's public sector reform agenda. The aim is that all provider trusts should become foundation trusts.
Secondly, Monitor has expressed the concern that there are real administrative problems in basing the level of the cap on the 2002-03 earnings from private work. As we extend further into the future, even getting hold of the data could be a problem. Thirdly, the Foundation Trust Network is concerned that the structure of the private patient cap is preventing a substantial and growing part of the NHS family from gaining income from privately funded work, which could be invested in improving NHS services. For example, apparently, a mental health foundation trust wants to set up a mother and baby unit. Through its business case, it has established that in order to be cost-effective the unit needs to have 20 beds. It has also estimated that NHS demand for these beds is 15 beds. The mental health foundation trust’s argument is that, if it could have five private patients in its mother and baby unit, the unit would be cost-effective and, thus, it could have one. It says, without that, it might not have one.
A further example is that of an NHS foundation trust which is concerned that the private patient income cap will impact on the development of its cancer services.
On this mother and baby unit case, which I have looked at, in what circumstances would a person seek to go into a mother and baby unit as a private patient?
That is an extremely good question. Perhaps people coming from, say, the Middle East to Great Ormond Street Hospital would want to come to a very specialist service, which probably would not exist in a lot of other countries. It is not something that I am planning in my trust. Obviously, the Foundation Trust Network has looked into the possibilities and has established that this would be feasible from its point of view.
A further example is a completely different foundation trust, which wants to deliver a model of care to NHS patients that is not currently available under the NHS; namely, cancer care. It can achieve this only by increasing substantially its private income in that area, which it cannot do because it would take them over the private patient cap. In a completely different example, another trust wants a private company to provide equipment for laser dermatology for private and NHS patients. The equipment is very expensive and is not available under the NHS. That foundation trust knows that its NHS patients would benefit if only it could get hold of that equipment. Those are just a few examples of the arguments coming forward to the Foundation Trust Network from trusts around the country.
The fourth general problem reported to the Foundation Trust Network is that the cap means that NHS foundation trusts are precluded from supporting and delivering some of the Government’s policies. I shall give a couple of examples. Mental health trusts are precluded from contracting with private insurance companies to deliver services for employees they cover, and also from delivering the return-to-work activity, which I happen to know a little about. I suppose that we probably could not do that work; it is no problem for us, but it might be a problem for patients.
Another area is the top-up issue; again, it is rather controversial, but there we go. NHS patients will not be free to choose a foundation trust to receive their top-up treatment if that treatment would take the foundation trust above its cap. This is particularly likely to be a problem in cancer care, where the treatments are very expensive and some of them have not been approved by NICE, and also in dementia care where, again, expensive treatments have not necessarily been approved by NICE.
There is a barrier faced by some leading NHS providers against becoming foundation trusts, because of the extent of their private patient work. For example, Great Ormond Street has highly specialised care for tiny groups of children. To provide that care, it brings a couple of children over from some other countries so that they can sustain their highly specialist units within the hospital. However, it is in trouble in terms of becoming a foundation trust; it is not a foundation trust, ironically.
A very different issue, which happens to be important to me, is that some foundation trusts—I do not know how many—use NHS resources to help them provide private patient services. These trusts are below the PPI cap and, therefore, as foundation trusts, no one can actually do anything about this, as I understand it—or are not doing anything about it, anyway. I would want to see a change in the law so that a foundation trust cannot use NHS resources to support its private patient work. Rather, to the contrary, if it is to do private patient work, it must demonstrate that that is beneficial to NHS patients and of no detriment to others.
The new clause does not indicate whether the level of private patient services should be higher or lower. I happen to have a personal view on that, but the amendment does not indicate it. If we can achieve agreement about the principles for the purposes of the Bill, I know that the Government will want to go in for a major consultation exercise about how the detail of this should be sorted out, ideally in regulations. This is not a simple matter. It is quite controversial, but if we could get the principles right, we could have something far better than what we have at the moment; certainly, what we have is pretty inadequate.
I propose two further safeguards in addition to the three principles that I mentioned at the beginning, which are important for me. One is a restricted rate of change in the percentage of private patient work over a period of time. You should not be able to leap to some huge private patient involvement, partly because that would threaten the public service ethos of the trust. Secondly, private patient work would not create an unacceptable divergence from existing services.
Will the Minister confirm her agreement with the following four propositions? They are, first, that proper control of the extent of private patient services within all health trusts is desirable—that should not be too difficult; secondly, that the current framework for controlling the extent of private patient services is unfair and needs reform; thirdly, that reform should be done in a way that ensures that private patient work enhances and avoids detriment to services to NHS patients; and, fourthly, that the system should have an equal impact upon all trusts, whether NHS or foundation.
In conclusion, I suggest that getting the treatment of private patient income right could greatly help the NHS to weather the storm of public service restrictions in the years ahead. In crafting a solution, however, the essential nature and integrity of the resources of the NHS must be safeguarded.
Will the noble Baroness deal with two questions which occurred to me while she was in her usual style putting a very powerful case? She argued that the foundation trust concerned estimated that the number of patients from National Health Service quarters would be 15, whereas they needed 20 for the service. But how far is that a reflection of the seriousness with which the needs of such patients—
Because we are in Committee, the noble Lord does not need to interrupt the noble Baroness in the middle of her speech. The amendment needs to be moved.
So I am just speaking?
No, you need to sit down.
I beg to move.
Well, I am very happy to sit down and now stand up again. Will the noble Baroness, who knows that I hold her in great respect, deal with two questions? The first goes back to the mother and baby unit. How far does that estimate of 15 patients from National Health Service quarters reflect the seriousness with which the contribution that could be made by such a unit is regarded by GPs and others within the area? How do we know that, if such a unit exists, we would not find that the demand from health service quarters quickly increased? Would the hospital or trust concerned then be tied into giving access to private patients when it had become clear that the need from health service quarters was larger than anticipated?
My other question is a simple one. The noble Baroness said that her foundation trust had no interest in this issue at all and that she was simply putting the case for the network. I am quite certain that, if she were in the chair in such a situation, a facility would be honourably and in the spirit implemented. Is she absolutely convinced that it would be approached in quite the same way in all trusts, and that, once having had a facility provided under such regulations, a trust might not be tempted to seek wherever possible to maximise income for the trust from private quarters as distinct from health service need?
I shall have a go at answering those questions. My own trust runs a very small mother and baby unit. It is interesting that the demand is very limited. For those severely mentally unwell mothers with newly born babies who come into the unit, it is immensely important, partly to get early treatment for the mother and partly to assess her capacity to mother that baby. It is a highly specialised service. However, we do not have a lot of demand coming at us, and I had never thought of private work. Whether we can continue to run a mother and baby unit has become a serious issue for us, because of the limited demand for such a specialist unit, even in east London.
I say in answer to the noble Lord’s second question that I am as conscious as he and others of the incredible importance of protecting the NHS—its principles, style and everything that we know and love about it. That is why I have not rushed into saying, “And the future framework should look like this”. I have been very careful in agreeing to table this amendment, and in tweaking it a bit, to say, “All we’re saying here is level playing field and no detriment to the NHS”. I am assuming, and it is my understanding, that there would be lengthy consultation by the Government on how we achieve those principles. However, if you have clear principles—we have had long discussions in the context of the Mental Health Act about having clear principles in the Bill—it should be possible to adhere to them and to ensure that what the noble Lord and I fear would not occur.
I thought we would all be rushing to our feet on this amendment because it is, in my view, the most controversial amendment. It is an Exocet amendment. If it were to be implemented—and we will come to the motive of the noble Baroness in a minute—it would completely undermine the National Health Service. I understand where the noble Baroness is coming from. She has tabled this as a probing amendment because she wants to provoke a debate about these issues. She is not saying that this is exactly what she would pursue. She made it clear that she would not wish it to apply to her trust, certainly while she is leading it. She said that there may be some interest in it in the longer term in a more refined form.
I regard this as a very dangerous amendment. I have talked to Anne Campbell, the former Labour MP who I presume has written to a number of Members of the Committee about her views on this matter. We have to go back to what happened in 2003 when the Bill establishing foundation trusts went through the House of Commons. Many MPs were opposed to foundation trusts being established. I recall moving between the tea room, the bars in the House of Commons and other places lobbying, not officially on behalf of the Government, in favour of the creation of these trusts. I believed in them because I believed the assurances that were being given by Ministers that they would not go down the route that this amendment suggests. If the undertakings that were given to Parliament at that time had not been given to Parliament, there would—
The noble Lord referred to the road that we might go down in future. The fact is that we are down the road. The problem is how to make sure that we get the road designed in the best interests of the NHS. I am not suggesting that we go into private patient work. One hospital gets 30 per cent of its income from private patient work, and many other foundation trusts do similar things.
I understand that. We have gone so far down this road, but I do not want to go any further, which is why I am arguing my case. I call in aid the comments made at the time. The Minister said in the House of Commons:
“The rules have been the subject of extensive comment both in Standing Committee and elsewhere. We have introduced a cap on the income that NHS foundation trusts can earn from private patients, so that NHS patients will always come first. We have also moved to ensure that the NHS in England will not become a two-tier service”.
He then went on to say:
“Let me make it clear that under clause 15(2) the regulator must impose such a restriction on the amount of private business that an NHS foundation trust can undertake. There is no question at all about that: he must exercise that provision”.
Further on, he said:
“I give my hon. Friend an absolute assurance that the regulator must impose a cap on the volume of private patient activity that an NHS foundation trust is to undertake”.—[Official Report, 8/7/03; col. 943-44.]
My colleagues asked about the threshold to make sure that hospitals would not go further down this route, and undertakings were given. When we came to ping-pong between the Houses, a further assurance was given by Dr Reid, who was then Secretary of State, to try to make sure that we did not have problems in the Division Lobbies in the House of Commons.
In other words, this structure was based on those undertakings. This amendment challenges those undertakings. It may well be that there is an uneven playing field, but that is what Parliament decided at that time. It was on that basis that it went through. Members of Parliament must have known at that time, on the basis of the 2002 assessments, that individual trusts must have had different levels of private patient care in operation. It would have been known to them when they voted. They knew they were voting for an uneven playing field. It was on that basis that a large number of Members of Parliament abstained and many voted against it in one of the biggest rebellions in the House of Commons in the previous Parliament. It was not a full turn-out; the Lobbies were down, because many Members abstained.
I have gone to my old friends in Unison, who have very strong views on these matters. They are part of the story. The noble Baroness knows their involvement in all this. I now turn to what they have said to me and what they would like me to say to the Committee, just to remind the Committee of where we are.
In the event that this amendment was passed, it would simply replace the cap with a vague public interest test, which would be highly subjective and impossible to administer. Such a fundamental change would clearly run contrary to the Government’s position when they set up foundation trusts. Many foundation trusts would obviously like to increase their income from private patients, and this amendment would mean that there was no limit on the amount of money that they could take in from cash-paying private patients. The logical outcome of this amendment is a two-tier system, which normal National Health Service patients—
If it is all right, I shall give way in a minute. Normal National Health Service patients are seen as less important because they are not bringing any extra income into the hospital.
I want to make the point that I made to the head of health in UNISON. This initiative is not designed to abolish the cap, unless a clearer, firmer and more even framework could be put in its place. I explained that, and I agree that you could read the amendment as implying the removal of the cap. All that it actually says is that the framework will be the same for foundation and NHS trusts. UNISON has a misunderstanding on that, which is the basis on which it has briefed the noble Lord, in my view.
However, the noble Baroness did, if I recall, correctly quote some figures of between 5 per cent and 30 per cent. Even with the increase from 5 per cent to 30 per cent in those National Health Service trusts, they are not able to have the advantage—as they might see it—or the privilege of the 30 per cent cap. There would inevitably be a lot more increased private treatment work inside those hospitals as they go to the higher cap limit. It was the noble Baroness who quoted the distinction between the 5 per cent and the 30 per cent, based on the 2002 figures. I am only quoting the fact that if National Health Service foundation hospitals move to 30 per cent, it inevitably means that they must be taking on more private work.
Can we have a little bit of clarification? There is no suggestion here that everyone move up to 30 per cent. I was stating facts. One NHS foundation trust has a 30 per cent cap, while others have 5 per cent. What we need is an even playing field and what that should look like is a matter for discussion with Ministers and a consultation across the country. No one is suggesting any increase in the cap—any loosening of the system. I would like to see a tightening of the system, while others would like to see a loosening of the system, but this amendment does not address those issues.
I do not think that those hospitals that already have a 30 per cent cap will volunteer to reduce it, will they?
Exactly. In other words, the ones taking 5 per cent will want to get up to 30 per cent as soon as possible, so it is inevitable that there will be more private work in those National Health Service hospitals. I give way to the noble Lord.
I do not propose to spend too much time, except to say that I support the amendment, for a variety of reasons. When I spoke enthusiastically a few moments ago in favour of the amendment proposed by the noble Lord, Lord Palmer—
Forgive me, but is this an intervention? I am still on my feet.
I did not realise that the noble Lord was still talking. I beg his pardon.
I can understand why the noble Lord might not want me to carry on, but I do want to carry on and complete what I have to say. The logical outcome of the amendment is a two-tier system, in which normal National Health Service patients are seen as less important because they are not bringing in any extra income into the hospital. The stated purpose of foundation trusts, whether or not one agrees with the concept, is to allow those hospitals that have achieved foundation trust status extra flexibility in the way in which they run their affairs, not to allow them to erode the founding principles of equality and universality that lie at the heart of the NHS. To quote the then Health Secretary from the debates around the foundation hospitals when they were set up:
“First and foremost, NHS foundation trusts will be NHS hospitals. They will treat NHS patients according to NHS principles”.—[Official Report, Commons, 7/5/03; col. 709.]
That principle must always remain at the heart of our debates when we discuss these matters.
There is more to this question than preserving the principles of the NHS, although that should be paramount in our thinking. There is also a pragmatic reason for us to reject the amendment, relating to the conduct of the foundation trusts’ regulator, Monitor, and an ongoing potential legal situation. UNISON has repeatedly aired its concerns that Monitor has failed to produce accurate guidelines on what NHS foundation trusts need to declare on income derived from providing services to private patients. The union engaged with Monitor for more than a year to end the dispute, but with no success. This began in late 2007, when Unison challenged the legality of Monitor’s financial guidance to foundation trusts, which lets them avoid a cap on private patient income by setting up legal entities in the form of joint ventures or charitable organisations to do private patient work, creating a major loophole for foundations to exploit.
The cap limits the percentage of total income that trusts can get from treating private patients to the level of 2002-03. While the 2003 Act defines private patient income as charges relating to the treatment of non-NHS patients, prior to 2008, Monitor’s financial reporting manual defined private income as that arising from activity provided directly to patients. In accountancy terms, this means that income received via special purpose vehicles—a very interesting phrase—does not count against the cap.
In July 2008, the Health Service Journal used a freedom of information request to reveal a confidential analysis of foundation trust private patient income by consultants KPMG. Foundations declared private patients earnings of £165 million in 2008, but the widest definition of private patient income would increase this figure by 70 per cent to £281 million. That is the assessment on which UNISON is making its case.
Monitor consulted its members in 2008 on the interpretation of the law and amended its guidance on the private patient cap. It opted to retain its existing approach but to extend the definition of private patient income to include private patient charges for goods and services provided by associate and joint venture arrangements. However, Monitor claimed that it was unworkable for all income derived from private patients to be included in the cap, and the new definition stops short of including additional sources such as donations from charities, when the donation was funded by private patient charges made by the charity. Unison believes that the changes made still fail actively to reflect the intention and meaning of the law and, as a result, the union is continuing to seek a judicial review into the matter.
As more hospitals and other NHS organisations take on foundation status, we need to ensure that there is no room for error. It would therefore be premature to change the law so drastically before the meaning and practical functioning of the current legislation has been clarified by the outcome of this potential legal process.
Finally, I shall touch on one of the arguments being used to justify removing the cap—the fact that mental health foundation trusts are effectively unable to raise any private income as their 2002-03 level of private income was zero. When the trusts were originally mooted by Alan Milburn in January 2002, they were clearly part of an agenda to separate the highest achieving hospitals from the rest of the bunch. It was originally intended that the only hospitals eligible to apply for foundation status would be those scoring a three-star rating. To begin with, it was not envisaged that all hospitals and mental health trusts would eventually be expected to apply for and be granted foundation status. It was a last-minute compromise prior to the 2003 vote that conceded the possibility of trusts having a chance to achieve full foundation trust status, which in itself has created the problem.
Finally, I offer a word on Anne Campbell and her particular problem, which she has outlined. It was an interesting letter. I have talked to her, and to the noble Baroness, Lady Meacher, about it. I do not close this whole route off completely. In mental health trusts, a refining of the law could provide for a little movement. I do not see the need for a national review, but I hope that someone can turn up with an amendment on Report that is far more refined that this blunt instrument—which, as we know, is a probing amendment—and which might deal to some extent with the problems in mental health trusts because they are on a zero cap. I would like to think that if an amendment surfaced, even if it were not acceptable on Report, Ministers would consider whether there was any scope for further movement in this area.
I shall be brief. First, since I started working in the National Health Service in 1948 when it first began, I have been one of its most fervent supporters. I firmly believe in the principles that led to the establishment of the NHS, and those principles are continuing. Nevertheless, having private patients and services working in partnership with the NHS is of value to it and helps to nurture its development. That is why I support the amendment.
When I spoke so enthusiastically, with tongue in cheek, to the amendment of the noble Lord, Lord Palmer, I was simply concerned that any potential opposition from the Government might conceivably have been actuated by what I thought might be an outmoded and outworn ideology. However, when I heard the noble Baroness tell me what the costs would be, I was concerned. I am glad that the amendment was withdrawn. In this case, the argument of the noble Baroness, Lady Meacher, has been powerful. She has drawn to our attention a whole series of problems that are beginning to emerge in a number of the foundation trusts.
What perhaps concerns me most is that the cap that has been imposed, as the noble Lord, Lord Campbell-Savours, has said, was based upon the private charges in the base year of 2002-03—six or seven years ago. The Government have themselves changed their attitude and developed many more public/private partnerships over the succeeding seven years. The cap needs to be considerably revised. As the noble Baroness, Lady Meacher, has said, the legal framework of the private patient income cap is increasingly untenable. The amendment does not seek to remove the cap but to redefine it and, in doing so, to provide the opportunity to discuss how we can ensure that NHS patients derive even greater benefit from foundation trusts. For that reason, I support the amendment.
Before the Minister winds up this discussion, it might be of interest for the Committee to know just what the noble Baroness’s position is. She has done a masterly job in presenting the case as the network wanted, but also clearly distancing herself from all the possible implications of that amendment. It would be immensely helpful if the noble Baroness, with whom I frequently find myself in complete agreement, could clarify whether she will vote for or against, or abstain from, the amendment.
The first thing that we must do is have further discussions with Ministers to determine the shape of an amendment that might be tabled on Report. I am assuming that if I were to table such an amendment I would vote in favour of it.
I give my strong support to the spirit of the amendment. It seems to me that despite all that the noble Lord, Lord Campbell-Savours, has said, the world has moved on since we first debated the creation of foundation trusts six or more years ago. I suspect that we did not need reminding of how politically charged the issue then was, not so much between the Government and the Opposition as between the Government and their own supporters who were extremely suspicious of this new animal that Ministers were trying to foist on the NHS. Many of them could not come to terms with the idea because they did not feel confident that foundation trusts would in practice operate like NHS bodies. That was why the private income cap was inserted. It was seen as a guarantee that publicly owned hospitals could not move surreptitiously out of the NHS and into the independent sector.
We have now had several years’ experience of foundation trusts and it should be clear to everybody that they are, and always have been, very firmly members of the NHS family. Monitor, as regulator, has been outstandingly successful. Trusts are only authorised to operate within very strict terms and their managerial freedoms are counterbalanced by regulatory restrictions. But the private patient income cap was always going to be a problem. Because it originated as more of a political totem than anything else, it was set up in such a way as to be completely inflexible, which was never going to make sense in the real world. At the time I remember pointing out that the cap would prevent a forward-looking, go-ahead foundation trust from investing in a piece of capital equipment that it needed to treat NHS patients but which could only be justified financially if a certain number of private patients were also to avail of it. That absurd situation persists.
We now have the even more absurd situation of trusts such as those mentioned by the noble Baroness, and particularly health trusts, with low or zero private income caps being unable to implement government policy, which is the height of absurdity. The problem is not the rule but the inflexibility of the rule. Until his peroration at the end, I took the noble Lord, Lord Campbell-Savours, to be saying that there is no business case that would convince him that the rule should be relaxed. If that is his inflexible position, it is not a reasonable one and I am pleased that he slightly relented on it at the end of his speech.
The amendment is not quite in the form that I would wish to see. The noble Baroness has acknowledged that, but I genuinely believe that the time has come to amend the rule. I do not say that it should be done away with altogether or that there should be unlimited scope for a foundation trust to generate private income, but where a case can be made in the interests of the NHS for a trust to earn additional private income, why should it be prevented from doing so?
I wish to make only two very quick points at this stage. The noble Lord, Lord Campbell-Savours, brought to life again for those of us who had the misfortune to be there, the battles of 2002. The fact that we ended up with such rigid agreements that many years after the fact are slightly absurd is entirely down to the way in which foundation trusts were introduced and sold by the Government. One of the key things that the Government did was to impress upon us all that foundation trusts would be liberated from the strictures of the NHS by having new freedoms. One of those new freedoms was that they would not be answerable in the same way as existing trusts.
I return to the opening, very tentative statement of the noble Baroness about the three conditions that she wanted: private patient work would not damage NHS patients; private patient work would benefit NHS patients; and there would have to be approval by governors for a significant increase in private work. I do not agree with the second point, because I do not think that that is sufficient accountability. I say to the noble Baroness that we are now five years into the existence of foundation trusts. It is high time for there to be a thorough review of the way in which they now work in the NHS. They are part of the NHS family, but we need to look in the round at what cost and what benefit they are to the rest of the NHS.
The noble Baroness is slightly premature in picking one particular aspect of foundation trusts and trying to change that; that is wrong. If she were to persist in doing that, I suggest to her that to satisfy those people who continue to have misgivings about an age-old problem in the NHS—not whether there are private patient treatments but how there are private patient treatments—there would have to be this: foundation trusts would have to accept the same principles, the same underpinning criteria, for selection for their agreement to private patient work, and they ought to be willing to give the same level of disclosure and accountability as other trusts. That is the level playing field that I would like us to examine before we go any further down either the road of the noble Lord, Lord Campbell-Savours, or the road of the noble Baroness, Lady Meacher.
Amendment 128, tabled by the noble Baroness, Lady Meacher, seeks to remove the current private patient cap that applies to foundation trusts. In its place, the amendment would introduce a new requirement for both foundation trusts and NHS trusts to,
“demonstrate the benefit to their NHS patients”
of any income that they may derive from private patients. The noble Baroness introduced this discussion with her customary thoughtfulness.
NHS providers should always focus their efforts on the provision of care to NHS patients. Any private work that they undertake should not compromise this fundamental objective, but there are different types of providers and so there are different ways to achieve the same end. NHS trusts are subject to the Secretary of State’s direction. For example, he can direct them on their powers to provide services to private patients. NHS trusts are also performance-managed by strategic health authorities, which will expect them to follow national guidance on private provision.
Because NHS foundation trusts are not subject to these powers of direction or performance management, it was felt important that from the outset there should be some other protection in place. That is why, when we introduced the concept of NHS foundation trusts, we included in the 2003 Act an explicit restriction on private income—the private patient cap—for reasons that have been outlined by Members of the Committee. Members of the Committee will know that the introduction of a cap addressed a concern in Parliament that NHS foundation trusts would represent a step towards privatisation and destabilisation of the National Health Service.
As Members of the Committee may be aware, the way in which the law has been interpreted is the subject of an application for judicial review. The Government are an interested party in the legal proceedings. In those circumstances, I do not propose to comment in detail on the interpretation of the current provisions. Instead, I will restrict my remarks to the practical effect of the current law and of the amendment which has been tabled.
I understand that, in tabling the amendment, the noble Baroness seeks to highlight two issues. First, that the cap on private income does not apply to NHS trusts. Secondly, because the cap is based on levels of activity in the financial year ending on 31 March 2003, there is wide variation between one NHS foundation trust and the next regarding the proportion of private work that they can now undertake.
I have already touched on the first of these issues. NHS trusts do not have a cap because their accountability arrangements are quite different from foundation trusts. There are different but no less effective safeguards in place. It is perhaps an oversimplification to suggest that there is a great disparity between NHS trusts and NHS foundation trusts in this respect.
However, it is more difficult to ignore the second issue, that the variation in cap levels means that there will be some NHS foundation trusts with very low caps, or whose cap is set at 0 per cent. This is plainly true.
What is the practical effect of those low and zero caps? One consequence may be the risk that continuity of care for some patients may be fragmented, as described by the noble Baroness. For example, if repeat cycles of IVF, for which a patient pays, mean that the cap is exceeded, the patient must go elsewhere to continue her treatment. More generally, some NHS foundation trusts may be unable to develop new patterns of service delivery, as outlined by the noble Baroness, which could potentially support our efforts to improve health and well-being, make services more widely accessible and available, and support innovation. We want NHS providers to be able to reach out into their communities, and work seamlessly and in partnership with their communities, the voluntary sector, employers and so on. This is especially, but not exclusively, true of mental health trusts. That this progress might be impeded by the private patient cap is a matter of some concern. The Government’s position is that we seek to maintain and strengthen the protection of NHS services for NHS patients, which is non-negotiable. We cannot ignore the fact that the current cap locks some providers into historic levels of income derived from private charges, irrespective of what may be considered best for patients and public. For that reason, we are already discussing with a variety of stakeholders their views and concerns about this issue.
The interpretation of the current law is a matter for the courts and I have no desire to influence this. But we would like a broader debate about the longer term direction, as mentioned by the noble Baroness, Lady Barker, and about how to strike the best possible balance between protecting services for NHS patients, while at the same time creating maximum flexibility for NHS providers to serve the best interest of patients and the public. There are good reasons for keeping this approach under close review.
I turn now to the specifics of the amendment tabled by the noble Baroness, Lady Meacher, which seeks to replace the cap with a new requirement for NHS foundation trusts and NHS trusts to demonstrate how any private income they earn benefits NHS patients. We have significant concerns about this approach, which would remove the restriction on NHS foundation trusts to grow their private provision. We recognise that income from privately funded work can be used to improve and widen the services for NHS patients. However, we believe that this amendment could potentially allow a market to develop in competition with the NHS. A test which simply requires private income to be used for the benefit of NHS patients could, in principle, allow an NHS foundation trust to generate almost half its income from private charges yet remain within the law and compliant with its terms of authorisation. We would not wish to see unrestricted private income in an NHS foundation trust leading to a poorer service for NHS patients—for example, for this to interfere with its ability to carry out its NHS functions and obligations under NHS contracts with commissioners.
It is not clear how the proposed approach—demonstrating benefit to NHS patients—would work and be overseen in practice. Demonstrating benefit could be a highly subjective approach. I appreciate that the noble Baroness raised this matter in order to open the debate, but this proposal raises as many questions as it answers. Members of the Committee will understand that on this issue we are particularly keen not to introduce ambiguity and uncertainty.
I want to assure the Committee that our goal is to ensure that NHS foundation trusts remain focused on the provision of the high quality services they deliver for NHS patients. As part of this, we are committed to their ongoing development and share their desire to promote innovation, enterprise and partnership working. I do not believe that it would be sensible or timely to prejudge this debate, nor should we attempt to make changes to the current law while it is subject to an application for judicial review. Therefore, I would ask the noble Baroness to withdraw her amendment.
I thank the Minister and all Members of the Committee who have contributed to this discussion. In response to points made by the noble Baroness, Lady Barker, FTs should be as transparent as NHS trusts. In fact, in my view, they are far more transparent because we have to account to our boards of governors and the local people who can go everywhere, including our wards. On the whole, the Secretary of State does not tend to do that. We are absolutely transparent to our local communities. We are also accountable to Parliament. I believe that those are good safeguards, but I would always support an evaluation of any model of treatment of any kind. However, at the moment, all evaluations of foundation trusts and NHS trusts show the foundation trust to be vastly better in terms of the quality of services that they provide. No doubt there are other ways of looking at these things, and I would absolutely support that.
As the Minister recognises, this is a probing amendment; there is no question of putting it to a vote at any stage. However, it is an important issue. We currently have a very unsatisfactory situation. I hope that we can continue discussions on how best to ensure that we have a better, fairer system in the future. On that basis, I am happy to withdraw the amendment.
Amendment 128 withdrawn.
Amendment 129 had been withdrawn from the Marshalled List.
130: After Clause 32, insert the following new Clause—
“Charges to overseas visitors
(1) The National Health Service (Charges to Overseas Visitors) Regulations 1989 (S.I. 1989/306) are amended as follows.
(2) In regulation 4, paragraph (1), sub-paragraph (c) after the second “Kingdom” insert “or under the Human Rights Convention, whether or not such application has been decided.”
(3) In regulation 4, paragraph (1), sub-paragraph (c) omit “which has not yet been determined”.”
I shall speak also to Amendment 132. I have spent seven Committee sittings in this Room listening—actually, trying to avoid catching my noble friend’s cold and, as Members of the Committee will see, my upper respiratory tract has finally succumbed so I did not succeed. However, I have sat patiently, listening to ways of improving the lives and safety of our citizens, and of improving already good health services for a very privileged population in this part of the world. This amendment is, for me, the most important. It addresses what we do for some of the most oppressed and unfortunate people in the world. I feel passionately about it, and ashamed that, as a privileged nation, we do not do enough.
This is a probing amendment, to clarify an unclear, confused and sometimes inhumane policy that has operated since 2004. Since then, there has been no free treatment for refused asylum seekers in hospitals except in emergencies. Ostensibly, this puts people’s lives in danger and requires doctors to consider immigration status before treating a patient. This is difficult for a doctor who simply wants to help the patient. Organisations representing asylum seekers have many examples of patient suffering which they, of course, have given to me.
People with non-life-threatening illnesses can be turned away until those illnesses become a life threatening emergency. As a simple example, what happens if you are a diabetic? You cannot access treatment because it is not an emergency, but if you go into a diabetic coma and could die, it is an emergency and you will then be treated. This is extraordinary.
Cases are cited where failed asylum seekers who have been admitted to intensive care from accident and emergency departments are charged for further treatment when they leave the intensive care unit. You cannot go straight home, but you have to pay for the rest of the treatment. Some asylum seekers who are too ill to be deported are denied treatment that would make them well enough to return home. GPs often refuse to register failed asylum seekers and refer them to accident and emergency departments instead. There have been examples of pregnant women being denied maternity care or being made to pay enormous fees.
Of all these examples, the one that concerns me most is that of people with conditions deemed not an emergency being refused treatment until it becomes one. I cannot imagine a concept that goes against medical ethics more than that; it is quite extraordinary. The extra expense to the NHS, not to mention the suffering of the patient, is just not acceptable. As a Member of Parliament in the other place whose constituency had its fair share of asylum seekers, because it was very close to Heathrow Airport, I know how long it can take before a failed asylum seeker actually gets returned home. It can be a very long time indeed.
Moreover, the UK is signed up to the Convention Relating to the Status of Refugees of 1951, which says that host countries must provide those fleeing tyranny and persecution with access to health services, housing, education and employment. Even at the point of entry, when application is made for asylum, we do not do basic testing that would help the individual and protect our society. Testing for TB, hepatitis and HIV should be routine. If people are being tortured, swift referral to psychotherapy would help them and us—our society. It is terribly important that children should have their vaccination status assessed and be vaccinated against childhood diseases if necessary. Why is that not done?
I am well aware of the list of conditions exempt from these regulations. I have them here—I have been sent the list—and I thank the department very much for that. They are all conditions that are relatively obvious and are certainly a great danger to our society as well as the asylum seekers. We take those measures, but the rationale for the current policy was to protect us from health tourism, whereby foreign nationals deliberately come for healthcare. If you cross the continent of Africa and trust yourself to some unseaworthy little boat, are at sea for I do not know how long, finally make land and are accepted as an asylum seeker, apparently you have come deliberately for healthcare treatment and you are a health tourist. I am very sceptical.
Many people do come for medical treatment in this country, and they pay for it in the private sector where the healthcare is often world-renowned. Overseas visitors can be distinguished in most cases from asylum seekers, I would contend. Where are the figures for health tourism that you hear about? Is it just the anecdotes of taxi drivers, or is there real, hard evidence? This year the Royal College of General Practitioners concluded:
“There is no evidence that asylum seekers enter the country because they wish to benefit from free health care”.
Other doctors have supported this view, and the general opinion is that the psychological and physical health of asylum seekers, especially those who become failed asylum seekers, worsens progressively in the UK asylum system.
At this point, I shall briefly address Amendment 132, which would exempt HIV treatment from charges, irrespective of residency status. This would ensure that everyone in the UK, including failed asylum seekers, would be able to access HIV treatment while in the UK. We offer testing and counselling for HIV, which would, one hopes, reduce the risk of HIV being spread by sexual contact—or would it? Might the fact that no treatment is available unless you pay for it make a failed asylum seeker less likely to have the test in the first place? I think that it would.
HIV sufferers are not a huge public health hazard in the same way as are the conditions on the exempted list that I mentioned under Amendment 130, but full-blown AIDS is extremely debilitating and might make an individual too sick to be sent home. What is gained then? We discussed the protection of our society from HIV when the Health and Social Care Bill came through this Chamber last year, and vigorously defended the need for some degree of protection for the HIV carrier from discrimination now and in future. This amendment seeks to add the right—and it is a right, I contend, under the convention on refugees—that AIDS sufferers receive treatment so long as they remain in this country. Scotland, Wales and Northern Ireland have chosen not to charge for HIV treatment, so why do we in England? I remind this Committee that it is the only serious communicable disease and the only sexually transmitted infection for which treatment is not provided free of charge, irrespective of residency status.
Finally, in April 2008, Mr Justice Mitting ruled that failed asylum seekers should be classed as ordinarily resident in the UK and be entitled to NHS treatment. This judgment is currently being appealed by the Government through, I think, a judicial review. There is great confusion in the system. Vulnerable people are suffering as a result. This country is also probably in breach of an international convention on the status of refugees. We have no reason to be proud or complacent on this issue. I beg to move the amendment.
I strongly endorse the amendment. In doing so, I am well aware that my noble friend is an extremely compassionate person. I am certain that, as an individual, she shares many of the anxieties that have already been expressed by the noble Baroness and that will, no doubt, be expressed by other Members of the Committee. I hope that in the spirit of her characteristic compassion, she will be able to say things in response to this debate that can give us some grounds for encouragement about how the Government seek to meet the situation.
While I was still a member of the Joint Committee on Human Rights, we examined the human rights of those within the immigration system. This issue became one on which there was a great deal of misgiving and indignation right across the party divide in the Select Committee. The noble Baroness moved the amendment extremely well, but all I can say is that in the discussions that we had at great length in that committee, the inconsistencies, the counterproductivity and the unacceptability in terms of any civilised standards, not least our obligations under existing conventions to which we as a nation signed up in good faith, made the policy untenable in the present situation. I remember that one witness, a highly qualified medical person working in the sphere of care for people in this predicament, suddenly became very indignant in the course of giving her evidence and said that as a result of this policy, we are putting people in this country at risk from infection. How can that be right? We talk about our obligations to people with a legitimate right to be in this country, and we are not fulfilling them. It is arguable that we are not fulfilling them under international obligations. This is a serious issue. I find it almost inconceivable that as a civilised nation we can behave in this muddled, insensitive way. I agree with the noble Baroness when she spells out the acute suffering that many of these people have been through, even before they reach our shores.
I also strongly endorse her point that we keep hearing about tourism for health reasons but have never seen any hard evidence to substantiate it. It all seems to be impressionistic and anecdotal. This issue is far too serious for policy to be formulated on that basis. I am one of those, and I am sure I will be to my dying day, who believe that it is disgraceful that we all, in all parts of the political life of our country, allow ourselves to be influenced and held to ransom by the tabloid press. So much of the policy in this area is really dictated by the tabloid press, as distinct from what it should be: objective, sound analysis of what the problems really are, what the needs really are and how we as a civilised nation should respond. I am deeply grateful to the noble Baroness for having moved this amendment. I am sure that she will have unlimited good will from the Committee, and I am equally confident that my noble friend shares the anxieties expressed and will try to meet them in her reply.
The Equality and Human Rights Commission, of which I am proud to be a member, has an obligation to protect vulnerable groups of people because all its work is underpinned by the Human Rights Act, which was adopted in this country to comply with the European Convention on Human Rights. This is surely a perfect example of a group of people who need to be protected under the convention and our own legislation. I strongly support the amendment.
I, too, support the amendment and thank the noble Baroness, Lady Tonge, for her excellent introduction to this short debate. I shall concentrate on the two ethical questions which the noble Baroness, Lady Tonge, raised. The first related to the right of all human beings to have access to healthcare, which is included in a whole collection of international agreements, including the International Covenant on Economic, Social and Cultural Rights, which states that Governments may not limit equal access to healthcare. It seems that all sides of the Committee have a concern for compassion and a concern to establish that right of human access to healthcare. We have therefore come to a point where we need to find a way in which we can establish that.
Much of the best information on destitution of, and healthcare for, asylum seekers and refused asylum seekers in Leeds comes from the Rowntree report, to which the noble Baroness, Lady Warsi, was one of the major contributors. That the need for mental healthcare among those who have come to our country fleeing torture derives originally from that torture but has been added to by destitution and the ways in which they have felt unwelcome within our own society is one of the reasons why it is important that we find a way in which we can provide properly for their healthcare.
The noble Baroness developed fully the second major ethical issue; namely, that healthcare professionals are given by the present law the duty to consider a person’s immigration status rather than their need for care. That cannot be acceptable in any society, and the BMA has described it as such. I hope that we shall be able to find a way in which people from a wide variety of situations and political convictions can come together in compassion for some of those in most need in our society. Acceptance of this amendment or something like it would be a way in which we could signal our compassion and alleviate the fears not only of asylum seekers but of hundreds of others in our cities who are seeking to help them and who find it impossible to explain to them the justification for our present law.
I, too, support the amendment. I have been struck by the wide range of individuals and groups who are dismayed by the Government’s current policy on healthcare access for refused asylum seekers, whether they be children, old people or torture victims. During my time on the Joint Committee on Human Rights—the noble Lord, Lord Judd, has reminded us of that—I was struck by the information we received from people working in the health field as to how the policy was operated, which seemed to all of us to be in many cases inhumane and counterproductive.
Since that was two years ago, I had a look at the more recent evidence session before the Home Affairs Select Committee on this question, which was in November of last year. That was a very informative session, some of which is worth putting on the record today. Professor Nathanson of the BMA described the situation as,
“the asylum seekers, the failed asylum seekers, the undocumented individuals”,
do not access healthcare very often.
“The evidence is that they access services late; that they believe they have no right of access; but very often they are frightened to access; and … more often of course they do not know how to”.
The committee asked what would happen to a doctor who acts in a clinically disobedient way and provides medication when the patient has not paid. The answer came from Lisa Power at the Terrence Higgins Trust. She said:
“There would certainly be disciplinary activity within the hospital were the hospital to seek that. There are a large number of clinicians who are so”—
I hesitate to interrupt, but that is absolutely not the case. I say that categorically as I have had meetings with the noble Baroness.
I am grateful for that intervention. However, I am quoting from evidence given to the Joint Committee on Human Rights, which is on the record. Lisa Power went on to say:
“There are a large number of clinicians who are so concerned that this is not the correct way to behave and so concerned for public health that they are prepared to do whatever it takes”.
She cited the example of a clinician who had managed to chase the Revenue retrieval teams away using a combination of a better understanding of the law and a common-sense approach to the pointlessness of retrieving money from the destitute. At the time of my membership of the Joint Committee on Human Rights, we heard a large amount of evidence about the activities of the Revenue retrieval teams. I believe that they exist and that they undertake activities.
I ask the Minister this: is it not rather undesirable for the state to require people who have a very high ethical standard to take actions that require them to go to a lower ethical standard and then put them in the position of having to use stratagems in order to do their moral and professional duty? Is it not strange that professional health workers in Scotland and Wales, as I understand it, do not have to do this because in both jurisdictions that is a step too far? I share the view of the Minister that has been expressed by others and I am very optimistic that she will respond positively to what Members of the Committee are saying.
I should like to ask a few questions about Amendment 132. As a member of the All-Party Parliamentary Group on AIDS, I should like to ask the Minister: why are people waiting in England for decisions about their status, or if they are waiting to be deported, denied HIV drugs? From a public health interest, why are those vulnerable people denied therapy, which would make them less infective? People with HIV/AIDS in the UK are covered by the Disability Discrimination Act. Are these individuals not classified as people? Is it not odd to treat them for TB and not HIV/AIDS if they are co-infected? Many people will not come forward with HIV because of stigma, and stigma among their own people is worse than other sorts of stigma. The present situation just makes a double stigma.
There is a large number of people in this country who are HIV infected but who do not know their HIV status. One estimate I have seen is that there are as many as 20,000 of them and many are in the immigrant population, including asylum seekers. This risks the further spread of infection for obvious reasons. Many of these people are put off seeking tests, because they fear both that it might affect their immigration status and, as the noble Baroness has said, the potential costs of treatment should they be so diagnosed. The amendment will protect public health in this country and should therefore be supported.
I will not detain the Committee much longer, because I, too, have heard similar evidence as a member of the Independent Asylum Commission last year: evidence of unfair treatment of destitute asylum seekers urgently requiring healthcare and being turned away. We reported this in our interim findings, and again in our third report, Deserving Dignity. To take HIV/AIDS as an example, we have had submissions from the National AIDS Trust, the Terrence Higgins Trust, the Refugee Council and the George House Trust. They basically said that it was a disgrace that refused asylum seekers are unable to access hospital care when the cost of caring, say, for a destitute mother with HIV/AIDS is so much greater than the initial treatment.
We have heard examples—I will not repeat them—of excessive charges for, for example, maternity care. Citizens Advice says that a mother can be asked for as much as £2,500, which she will not have. I was interested to learn of a point made by the noble Lord, Lord Judd, that, while we know that asylum seekers suffer from persecution in their country of origin, their health may suffer further because of destitution in this country. In other words, we in the UK have become a source of persecution. Few of them have the means of supporting themselves, let alone their healthcare. We are just forcing them further into the accident and emergency category.
Refugee Action found that 83 per cent of those surveyed said that they had had serious problems since arriving in the UK, despite the relevant fact that four out of five in that survey were between the ages of 21 and 40. Any trauma suffered overseas is compounded by the isolation and deprivation that they experience when they arrive in the UK; and then, in many cases, they are turned away. One wonders why the Government are hesitating in the face of this evidence. Are they still clinging to the deterrent argument? We all remember that there was some logic behind that a few years ago, and some of us believed in it and expected it to work. It does not work; the evidence is otherwise. We have heard from the noble Baroness, Lady Tonge, and the Royal College of General Practitioners that there is no evidence that immigrants enter the country because they wish to benefit from free healthcare. That was endorsed by the British Medical Journal. In 2005, the then Minister was asked what health tourism cost the NHS. He admitted that it was,
“not possible to give a definitive assessment of the scale of health tourism”.—[Official Report, Commons, 1/3/05; col. 1076W.]
I expect that the Minister will confirm that this is still the case and that it is a dead issue.
More important than that, as the noble Baroness, Lady Tonge, has said, it is against medical ethics to deny healthcare to anyone in need. There is plenty of evidence of the urgent need of so-called “failed” asylum seekers. They are not “failed”—they are in many cases waiting to leave the country. Unfortunately, two out of five have problems accessing a general practitioner.
Finally, there is public opinion. Asylum seekers are constantly and unfairly confused with illegal migrants. I am not going to go into that, I just urge the Minister to look at the arguments in the Welsh Assembly to take account of the number of members of the public who are positively in favour of genuine asylum seekers and others who may have slipped through the net but who are still deserving of the highest standards of care, for which our health service has a good reputation.
I will respond to Amendments 130 and 132 together, as they are clearly related.
First, I emphasise that we recognise and respect our duty to ensure that the provision of healthcare is fully compliant with human rights principles. That is why immediately necessary and urgent treatment for any medical need, including HIV and AIDS, must never be denied or delayed, irrespective of a person’s right of abode or ability to pay. Decisions about need are always clinical and are made solely by a clinical professional. I think I am going to repeat that: decisions about need are always clinical and are made solely by a clinical professional. The suggestion made by the noble Baroness, Lady Tonge, the right reverend Prelate and others that this is not the case is somewhat unfair.
The regulation to which Amendment 130 refers already ensures that people seeking asylum or refuge have full, free access to healthcare throughout their application, including any appeals. This should already capture most human rights applicants, and we are currently reviewing whether any other genuine applicants are being excluded. I met the noble Baroness and my noble friend Lord Dubs, who is interested in this issue, to discuss that review. It is taking place now, and that is at the heart of what I have to say.
The amendment would extend this so that anyone who had made an application for leave to stay in the UK, either as an asylum seeker or under the human rights convention, would be exempt from charges, even if that application had been decided and, indeed, rejected. In other words, he would continue to receive free treatment indefinitely, even if it was established that he was not in need of the protection or sanctuary of the UK. In deciding whether such a significant extension is appropriate, we must, while still paying due regard to human rights principles, also take account of other factors.
The NHS, which is free at the point of need, is one of the most generous provisions that any country provides. We legitimately need to ask whether we can provide all healthcare free of charge to people who are not legitimate residents in the UK. Also, might such an amendment not encourage applications under the human rights convention, particularly for chronic conditions? I am dubious about that, and I share the questions of the noble Baroness about that. I am not saying that any of these arguments should justify the denial of human rights in the provision of healthcare. However, decisions on the extent of free NHS provision must consider all these factors, such as public health, clinical costs and cost implications.
In terms of retrieving revenue, it is the case that NHS trusts are obliged to charge and then seek repayment. However, if it is then obvious that the people whom they are trying to retrieve from have no funds, they are not required to pursue it.
On Amendment 132, HIV/AIDS is one of the world’s most significant medical and human challenges. Although the number of new diagnoses of HIV in the UK appears to be stabilising, HIV continues to be a major global health concern with 2.5 million new infections in 2007. Once diagnosed, a patient requires lifelong treatment. I have already said that nobody should be denied clinical treatment if it is urgent or immediately necessary, nor should it be delayed, irrespective of their ability to pay.
However, this amendment would make all treatment for HIV/AIDS free, creating a number of risks that we would have to take into consideration. First, what is the capacity of the NHS to provide for a demand for clinical provision that is likely to be significant? What would the additional financial burden be, and is it affordable? Those are legitimate questions.
The approach that the Government are taking is an international one. We provide support to countries with high HIV prevalence to improve their own facilities and resources to combat HIV. The Department for International Development provided over £1.5 billion between 2005 and 2008 for this purpose, and its AIDS strategy, published last year, included a further funding commitment of over £6 billion over the next seven years to strengthen healthcare systems.
I am not saying that any of those arguments rule out extending free NHS provision, but we do have to consider those factors. Both the amendments raise complex issues, which is why the review of access to the NHS for foreign nationals has been set up. Both amendments fall within the review’s scope; its recommendations will be put to a full formal consultation and agreed changes will be subject to the appropriate parliamentary process.
I should make a procedural point that the regulations to which these amendments refer are secondary, not primary, legislation, so the proposed means of amendment through this Health Bill is not appropriate. However, I am pleased that the amendments have provided the Committee with the opportunity to debate these issues and for those views to be taken into consideration in the review. I hope that with those reassurances about our ongoing work to tackle those issues the noble Baroness will feel able to withdraw the amendment.
Before my noble friend sums up the debate, I want to clarify the point about HIV. There is clearly an entirely different understanding on the part of the department and of the HIV charities about the position of staff who are treating people with HIV. The Minister and her officials had a very helpful meeting with me and my noble friend Lady Tonge, during which they explained the point that the Minister made—that clinical decision-making always takes priority over the assessment of whether somebody has proper residence status or the ability to pay. Yet we have this distinction about HIV being a communicable, infectious disease for which people have the right to have a test but not to have treatment. What do clinicians do in that case? They carry out the test, and it becomes immediately apparent that somebody immediately needs antiretroviral therapies, which will not be a cure but will enable him to live. We also know that antiretroviral therapies are comparatively expensive drug therapies in the NHS. If the clinicians work in a trust that has a policy that it will not treat people who are not eligible, what then happens to the individual? It seems that there is a problem here. For most conditions, we can get away with doing it on the quiet and being humane on the quiet, but HIV is the particular problem, and it is different from all the other conditions.
We provide counselling, but we ensure that urgent treatment is always provided and that the decision on urgency is always made by a clinical professional. If the need for treatment is not yet urgent and the person can return home, that is what they should do. Otherwise, we will ask them in advance to protect NHS resources for those entitled to use them without charge. That is the situation. However, if they do not return home and their need for treatment becomes urgent they will receive treatment even if they cannot pay for it in advance. By urgent I do not mean emergency or immediately necessary. A person whose need for treatment is urgent should not have it denied until it becomes immediately necessary, regardless of payment.
I do not question my noble friend’s good faith in telling us about the scope of the review, but can she assure us on the important issue of how far what is understood by Ministers and senior officials to be the policy is happening on the front line? Certainly, when we were taking evidence in the Joint Committee on Human Rights, people whose integrity was beyond question were not encountering on the front line the situation that my noble friend described.
We are taking that into consideration and in our consultations we will be taking recourse on abuses such as those that have already been outlined.
I thank the Minister for her reply, and everyone who has contributed to the debate and supported the amendment. I pay tribute to the health team who listened to us patiently—and the noble Lord, Lord Dubs. I listened to them patiently and, uncharacteristically, I did not lose my rag when I had a meeting with them. I just listened carefully to what they said. I have thought and thought about this and feel we cannot simply say that it is the discretion of the medical practitioner to treat or to decide whether or not a situation is an emergency. We know of many examples of people not being treated when they need treatment. Whether it is because doctors do not understand the law or have not read the documents—it is more likely that they have read them but do not understand them—we know of examples of people being sadly neglected, especially, as my noble friend has said, in the case of HIV/AIDS.
Of course, the cost must be assessed, but let us know the estimated cost to treat these people. We need some sort of assessment. I have no quarrel with the Department for International Development with which I worked for many years. It is the best department in government. No doubt we shall be called bleeding hearts, Mother Teresa and Albert Schweizer—does anybody remember him? He was my hero when I was at school. The noble Lord, Lord Judd, was so right about the tabloid press. This initially was a reaction to what the tabloid press would say about a stupid government who let people in to use all our health services, and that we are fools to accept it. I am sure that that was the main reason.
Does the noble Baroness agree that another issue that needs to be looked at when considering how far what is intended by policy makers is pursued on the front line is the perception that all GPs are the same? They read the tabloid press and are influenced by it so that they then approach their patients in the context of a tabloid press perception. We have to get it across that the medical profession has a duty to follow through the procedures that Ministers and others lay down. It is not just that the profession has a discretion to do it; it is its job to do it.
The noble Lord is absolutely right and I thank him for his intervention. I repeat that what is decided in the ivory towers of Richmond House is not always what filters through. I have said it many times on issues of management in the NHS. You set up a great scheme and do not realise what the lower echelons do with it. I am not blaming the Minister; I guess I am blaming the system. I think that it was done so that the Government appeared tough and pleased the likes of the Daily Express, the Daily Mail and the Sun.
This is a matter of human rights. I thought we were a country that always cared passionately about human rights. I am not so sure whether we have adhered to that in recent years. I look forward to the review but give due warning that I shall probably bring back my amendments on Report. In the mean time I beg leave to withdraw the amendment.
Amendment 130 withdrawn.
131: After Clause 32, insert the following new Clause—
“Patient transport services
It shall be the duty of primary care trusts and hospital trusts to work with passenger transport authorities, unitary authorities and county councils, as appropriate, to co-ordinate the provision of patient transport services provided by primary care trusts and hospital trusts with the provision of other passenger transport within the trusts’ areas.”
This is a non-clinical and very practical amendment. I shall be very brief, because there is one other important amendment to consider tonight. I have tabled the amendment because of concerns that I have been made aware of that an existing failure to co-ordinate transport for patients is both wasting public funds and making travel to and from hospital unnecessarily difficult for many people.
For example, I have been told that 25 per cent of the “did not attends” at Newham Hospital can be attributed to transport problems. This is a problem that will have been distressing for the patients concerned, who may not get another appointment for some time, and it is at an incredible cost to the NHS, which has a statutory duty to provide patient transport. While it is right for patients to have such transport provided, I suggest that it is not sensible for the NHS to be providing this service without any consideration as to whether passenger transport authorities, unitary authorities and county councils might assist in meeting that need, possibly at a much lower cost than that faced by the NHS.
My amendment seeks to insert a clause requiring primary care trusts and hospital trusts to co-ordinate and co-operate with those other authorities to address this issue. I beg to move.
Amendment 131, tabled by the noble Baroness, Lady Greengross, would place a duty on primary care trusts and hospital trusts to work with passenger transport authorities, unitary authorities, and county councils to co-ordinate patient transport services with the provision of other passenger transport services.
The noble Baroness is absolutely correct that it is vital for the NHS to engage with its local passenger transport authorities and key partners. Providing a health service that is of high quality and is responsive to the needs of the patient lies at the heart of our vision of a modern NHS. Ensuring that people can access those services is part of this aim. I hope that significant steps have already been taken in this area. The Government have introduced a comprehensive policy framework on patient transport services, which clearly sets out the expectation that NHS transport commissioners will work with other transport services when co-ordinating access to healthcare facilities.
Following a public consultation, guidance to PCTs published in August 2007 clearly states that they are responsible for commissioning ambulance services and patient transport services to such extent as the PCT considers necessary. Where necessary, patients with a social need for transport may seek reimbursement, as the noble Baroness will know. Alternatively, they may seek assistance in the form of a Social Fund payment. Patients not receiving a qualifying benefit may be eligible for assistance through the NHS Low Income Scheme.
We remain clear that multi-agency working can lead to more effective, user-focused transport services. For example, the Northwest Regional Centre of Excellence is soon to publish a document presenting examples of good practice on passenger transport. This will show how health organisations and local authorities have worked together across a range of health, transport, education and social care services to ensure that patients are offered the most appropriate transport service that best meets their individual needs. We are committed to supporting the NHS in ensuring that good practice such as this can be spread more widely. That is the core of what we want to do.
There is already a framework in place to support and encourage the NHS to work in partnership with other passenger transport agencies. I hope that the noble Baroness will feel reassured by this brief and rushed answer. As she rightly noted, we have one more amendment to discuss. I hope that she will feel able to withdraw her amendment.
I thank the Minister for that very full reply. I know that there is willingness to pilot such co-operation and co-ordination in some areas, but it is not quite the same as imposing a duty to do so. With that, I shall take this back and think about whether I can take it forward in some way. I beg leave to withdraw the amendment.
Amendment 131 withdrawn.
Amendment 132 not moved.
133: After Clause 32, insert the following new Clause—
“Committee to advise on treatment of haemophilia
(1) The Secretary of State shall by regulations establish a Committee to advise on the treatment of haemophilia in the United Kingdom.
(2) The Committee shall in particular provide advice on—
(a) the selection, procurement and delivery of available therapies for haemophilia patients;(b) patients accessibility to treatments for haemophilia or any conditions which arise from consequent haemophilia therapy;(c) the financial and other needs of haemophilia patients.(3) The membership of the Committee shall include—
(a) specialist haemophilia clinicians;(b) representatives from the Haemophilia Society;(c) representatives from the Department of Health;(d) representatives of haemophilia patients, through nomination by the Haemophilia Society and other bodies working to support the haemophilia community.(4) The Secretary of State shall consult the Committee before making substantial changes in policy regarding the treatment of haemophilia patients and before introducing legislation which affects them.
(5) 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.”
At last, completion of the Bill’s Committee stage is at hand. For one dread moment, such was the heat generated by the debates on tobacco, I thought that we might all go up in smoke; but mercifully, due not least to the customary fortitude of my noble friend Lady Thornton, we have survived to address now the urgency of the needs of a small community of congenitally disabled people who, in the words from the scriptures, are living in sorrow and acquainted with grief.
I have interests to declare, not pecuniary, as president of the Haemophilia Society and architect of the independent public inquiry, headed so admirably by my noble and learned friend Lord Archer, into NHS-supplied contaminated blood and blood products, some of whose recommendations could be implemented by acceptance of the new clause, either now or on Report, pending fuller debate and further action on its findings as a whole.
I am most deeply grateful to my noble and learned friend and his colleagues in the inquiry team, Dr Norman Jones and Judith Willetts. Their report, exhaustively researched, is one also of excelling integrity and humane concern for arguably the most stricken minority in Britain today. I warmly acknowledge, too, the help of my noble friend Lord Turnberg who, as immediate past president of the Royal College of Physicians, served the inquiry with such skill and commitment until he and his wife Edna were so tragically bereaved.
When I set up the inquiry two years ago, 1,757 haemophilia patients had already died from being infected by their NHS treatment with HIV and/or hepatitis C. The death toll has since risen by more than 200, and many more are left terminally ill by what my noble friend Lord Winston, vice-president of the Haemophilia Society, has described as the worst-ever treatment disaster in the history of the National Health Service.
Yet the grievous death toll is not the whole story; the haemophilia community suffers privation at a depth that most other people can barely imagine. I had a letter yesterday from a friend of a haemophilia patient infected with hepatitis C, which described his plight. He is uninsured due to the prohibitive premiums imposed by insurers on people with his condition. He can no longer work full time and his income is in sharp decline. Travel and other costs are becoming too high for him to cope with, and a mortgage deal is out of the question. In the noble tradition of Good Samaritans, the man who wrote to me has himself been helping his friend financially, but now he, too, is facing the loss of full-time employment. This is but one example of the urgency of the need now for purposeful action on the Archer report, of which approval of this new clause would be a clear signal to the haemophilia community that at long last its plight has been recognised at Westminster and in Whitehall.
For parliamentarians, there can be no higher duty than that of ensuring just treatment for those afflicted and bereaved by contaminated and life-threatening medication supplied by the state, and the emphatic backing of the report's recommendations by the mass media as a whole shows how clearly that duty is understood by the people of this country. It was just as clearly understood, too, by my right honourable friend Harriet Harman MP, Deputy Leader of the Labour Party and Leader of the House of Commons, when speaking on 5 March. Already having thanked my noble and learned friend Lord Archer for his “important work”, she told my honourable friend Dr Brian Iddon of her,
“congratulations to the campaigners”,
“brought to the public’s attention the injustice that they have suffered”,
from contaminated NHS blood and blood products. She also made it clear to the House of Commons that:
“The Government will respond shortly”.—[Official Report, Commons, 5/3/09; cols. 993, 999.]
Thus the Haemophilia Society now looks forward to a positive response to the landmark report that she so fulsomely welcomed.
There are two other issues to which I must briefly refer. The first is the sombre threat now of a third scourge facing the haemophilia community. I refer to the increasing number of haemophilia patients known by the Department of Health to have received blood from donors who subsequently died of vCJD, and the recently reported case of one hepatitis C-infected patient, a post mortem on whom revealed vCJD in his spleen. I was informed more than once on the authority of the Chief Medical Officer that the risk for recipients of blood donors who subsequently died of vCJD was purely “hypothetical”; but that demonstrably is not the case now.
Is donated blood currently being screened, or filtered to remove vCJD infection? If it is not, can my noble friend in replying to the debate say what protection is in place to safeguard recipients of donated blood? I understand, and my noble friend will confirm whether it is so, that technology is now available to remove by filter the abnormal prions which are the causative agent of vCJD, and that it has passed EU-wide safety testing and clinical trials as required for its use in the UK. The haemophilia community, like Members on both sides of both Houses of Parliament, are anxious to secure ministerial assurances of urgent and effective action in this policy area, and I look forward to my noble friend’s response to the questions that I have raised.
The other issue to which I must finally refer is that of Crown immunity, which the Archer report raises in commenting on the behaviour of the Blood Products Laboratory (BPL). The report says:
“In July 1979, the Medicines Inspectorate visited BPL. They reported that the buildings were never designed for the scale of production envisaged. They commented: ‘If this were a commercial operation we would have no hesitation in recommending that manufacture should cease until the facility was upgraded to a minimum acceptable level’”.
The report then says:
“BPL was rescued by Crown Immunity”,
and goes on to say that,
“the existing plant continued production, relying on Crown Immunity to dispense with all the requirements of the Medicines Act, but was able to meet only about 40 per cent of the national requirements”.
Surely, words have lost their meaning if this does not mean that by the use of Crown immunity, a relic of feudal England, the lives of countless haemophilia patients were blatantly and gravely put at risk.
In this House on 10 March, the noble Lord, Lord Darzi, responding to me in exchanges about thalidomide, referred to,
“the tremendous amount of work that has gone into the marketing, testing and regulation of drugs, as encapsulated in the Medicines Act 1968, from which society has benefited greatly”.—[Official Report, 10/3/09; col. 1059.]
There could be no clearer text for describing the enormity of the use by the BPL of Crown immunity to dispense with all the requirements of that renowned and vital statute. I beg to move.
I welcome and support this excellent amendment tabled by the noble Lord, Lord Morris. It is late, so I will attempt to get my words out quickly. The noble Lord, Lord Morris, has been a vigilant campaigner on behalf of people with haemophilia, especially those affected by contaminated blood products. He is to be applauded for calling the independent public inquiry chaired by the noble and learned Lord, Lord Archer, which reported last month.
I declare an interest: my first husband, Graham Ingleson, and his brother, Anthony, died as a result of receiving contaminated factor VIII blood products. Graham was 34 years old when he died and, at the same age, I became a widow. The scandalously slow reaction by previous Governments to safeguard blood products imported from the United States meant that we failed to protect nearly 5,000 people who died or are now living with HIV/AIDS, hepatitis C or, now, CJD.
The amendment proposes establishing a committee that will go some way to righting a great wrong which was done to those people. It is not a big initiative—it is just a committee—which would be a small, uncostly affair. The committee would not only improve the care of those who have suffered from the blood scandal, it would also help thousands of people with haemophilia who, with the right treatment, could lead long and active lives, working and building families. They are great when they have their treatment. You would not even know that they have a disability. Finally, as I have often said in the past, those with the most expertise of long-term conditions are those who experience them. I welcome, under subsection (3) of the proposed new clause, the holistic spread of the proposed commissioners; namely, charity supporters, Department of Health officials and, most importantly, the patients.
Every year on the anniversary of my husband’s death, I visit the church of St Botolph without Bishopsgate in the City of London. At the back of the church is a small memorial book, which names those haemophiliacs who have died as a result of contaminated blood products. Every year, new names appear. Every year, haemophiliacs living with the consequences of lethal treatment—it was lethal treatment—require the very best information, advice and support. The proposed committee could provide that help. The Government have this opportunity to show that they recognise the extraordinary plight of haemophiliacs and I hope that they, and Members of the Committee, will feel able to support this amendment.
At this late hour, it would not be right to go into the many issues raised in the Archer inquiry. It is a very good report, which deserves serious and detailed consideration by this House. If it has established one thing, it is that people from all political parties were in different ways involved and that some have taken responsibility. This is not a partisan issue. I would suggest that it is an issue that the House of Lords is well placed to look at in some depth. I do not want to dishearten the noble Lord, Lord Morris of Manchester. I am not sure whether his proposal for a committee is right, but I am willing to listen to the Committee on that. What I am most concerned about is that the Government’s response should be timely and appropriate. It is a great shame that the Government did not contribute to the inquiry chaired by the noble and learned Lord, Lord Archer, but they are under an obligation to respond in a timely fashion. The government response perhaps needs to be in two parts: one an urgent response to the needs of people who are currently living with the consequences of being given these blood products, whose needs are urgent and serious, and the other on the wider question of what we should learn from the inquiry. That response would be much longer and more detailed.
We would do well to consider things that happen in other healthcare systems, particularly the response in the American healthcare system, although it is an entirely different system, and what should happen in our healthcare system is not the same. Many deep questions of policy and practice emerge from the report of the inquiry chaired by the noble and learned Lord, Lord Archer. They deserve to be looked at, but let us not use them as a reason to delay responding to the urgent needs of people who need help now. Similarly, let us not use the urgent needs of people now as a reason to give a cursory response to those quite deep questions.
I shall be very brief, as we are up against the clock. I hope that we will have a constructive reply from the Minister this evening in so far as she has time to deliver one. I understand that the Government did not provide witnesses to the inquiry chaired so ably by the noble and learned Lord, Lord Archer. That was regrettable. I join the noble Baroness in congratulating the noble and learned Lord on an excellent and thorough report. Great credit is due to him, his colleagues and all those who gave evidence to him. One of the things that I have learnt from the report is that there are too many haemophilia patients currently suffering hardship and serious distress as a result of this worst of all healthcare accidents in the history of the NHS. The Government have a moral obligation to give careful consideration to the report and to respond to its recommendations for the sake of those patients.
I declare an interest as a vice-president of the Haemophilia Association. This seems to be a reasonable amendment. People with haemophilia have had the most unfortunate time over the years since the emergence of HIV/AIDS. In the early years of HIV, it was found that 75 per cent of haemophiliacs at the Newcastle upon Tyne unit developed HIV, and many of them have died. Hepatitis C was also found to be a problem. So was variant CJD, and nobody knows whether it will present itself and to whom. It has been horrific for people who have died from CJD and for their families.
Safety in blood and blood products is of the utmost importance. While I was visiting a haemophilia unit in Leeds, the telephone rang. It was a teacher from a school asking if a haemophiliac boy could play football. There are so many questions to be asked and answered. A united committee could give support and information to those involved with this challenging speciality, which needs all the support it can get. This amendment may be the last on the Bill, but this is an important issue. The work with prions needs top scientists to find a way of protecting everybody from the dangers of contaminated or tainted blood. It could affect anyone at any time.
The Committee is supposed to finish in one minute.
I have a quote from the report, which sums up the problem in a nutshell. Page 105 states:
“We must now look to the future. We cannot undo the damage done, nor turn back the clock to take a closer view of those past events and decisions. We must address the ongoing needs of those affected and consider how the state can ensure these citizens are recompensed”.
This amendment does just that.
I regret enormously that we could not have at this stage of the Bill the full discussion that this report merits, but self-regulation rules in your Lordships' House, including in Grand Committee. Noble Lords must have been aware of that earlier this afternoon.
Amendment 133, laid by my noble friends Lord Morris and Lord Corbett, is based on a recommendation made by the noble and learned Lord, Lord Archer, in his recent report, published on 23 February. The report, as we all know, considered the supply of virus-contaminated blood and blood products, and its devastating effect on the haemophilia community in particular from the early 1970s until tests became available for hepatitis C and HIV.
Noble Lords will be aware that my noble and learned friend’s report is a wonderful document. I warmly thank him again, and my noble friend Lord Morris, for their work on behalf of haemophilia patients and their families. We recognise that the lives of many people have been seriously impaired and appreciate that noble Lords wish to take every opportunity to remedy this situation as far as they are able.
The establishment of a statutory committee is one of a number of recommendations made by the noble and learned Lord, Lord Archer. The Government take the report very seriously. We are giving careful consideration to all the recommendations. In light of this, it would be premature to implement any one of the recommendations before we have had time to consider the implications. However, some feedback from the Government on this matter is entirely possible before we reach the next stage of the Bill, which I hope that noble Lords will take into consideration.
My noble friend asked about vCJD screening tests. He is quite correct that no screening test was available. Getting a validated screening test is a priority. Prion filters are available, which we are testing with all speed. Those tests are still under way. Addressing this situation is a priority. We are taking the matter very seriously indeed.
There is no doubt that this group of patients has suffered tragic consequences as a result of these serious infections. It is important to ensure that the patients concerned and their families are properly supported, and to act to reduce as far as practically possible any future risk to patients who need blood and blood products.
I am sorry that we are unable to consider the matter further. I suspect and hope that we shall have a much longer and more serious debate on aspects of the report in the House. I have answered one question; we have dealt with it very briefly. That is not a satisfactory way of dealing with the important report of my noble and learned friend. However, until all its aspects have been considered, I would ask my noble friend to withdraw his amendment.
This is not the moment to press the amendment, to which we can of course return on Report. No effort will be spared in doing everything that parliamentarians can do to vouchsafe full implementation of the Archer report’s recommendations. Naturally, I deeply regret that there has not been time even for the noble and learned Lord, Lord Archer, to speak in the debate. All of us want to say to Peter that he is held in high admiration, and we shall do our very best to see that justice is done to his exceedingly helpful and humane report. I beg leave to withdraw the amendment.
Amendment 133 withdrawn.
Clauses 33 and 34 agreed.
Schedule 6 agreed.
Clauses 35 to 37 agreed.
Bill reported with amendments.
Committee adjourned at 7.35 pm.