Organ Donation (Deemed Consent) Bill

Baroness Deech Excerpts

2nd reading (Hansard): House of Lords
Friday 23rd November 2018 Lords Chamber

[Baroness Deech (CB)]

My Lords, at first sight this Bill is welcome and straightforward. It certainly is welcome, and appreciation is due to the noble Lord, Lord Hunt, and to all those who have promoted it.

I admit that my views are coloured by having been chair of the Human Fertilisation and Embryology Authority, dealing with associated but by no means identical matters. During my tenure, we had to deal with the Diane Blood case, where sperm was removed from her husband just before and just after his death without any consent. Of course, consent is absolutely central to the Human Fertilisation and Embryology Act. The lack of consent was got around by referring in part to the European law on the free movement of goods and services, which apparently included sperm. Nevertheless, the removal of the sperm was a flagrant breach of the law. The law was re-emphasised in the later statute, which pointed out that one cannot take anything from a body, alive or dead, without consent. This Bill goes the other way. Of course, sperm is not an organ, but I thought I should refer again to this notorious case, which highlighted the importance of consent.

As has been said, the BMA supports the shift to an opt-out system. In Wales, which has an opt-out system, consent rates rose from 58% to 72% in the two years to 2017, albeit reflecting very small numbers. So I give a hearty yes to the principle, but with a few words of caution and support. The BMA calls for the appropriate,

“publicity and engagement with the public”.

It highlights the need to balance increased donation with,

“the wishes and autonomy of those who donate”,

and their families.

Somewhat surprisingly, the very expert Nuffield Council on Bioethics did not originally recommend a change to an opt-out system, because, as it said, there was a,

“lack of evidence that such a change alone would increase organ donation rates”,

and because of ethical concerns about the operation of the scheme. Now, the Nuffield Council, accepting the situation as it is in this Bill, emphasises how it can be made to work ethically. It says,

“it is vital to have measures in place that encourage people to express and document their wishes about organ donation during their lifetime”.

A free choice in this or any other field is only legitimate if people are well informed and aware of the significance of their choice.

The Nuffield Council further says that,

“information about the donation process must be easily accessible”.

It is not enough to have a publicity campaign when this Bill is passed. It needs to be maintained on an ongoing basis so that those who might donate, but are not thinking about it now, are as aware in the future as those who benefit from the publicity that will no doubt accompany this Bill’s success.

The Nuffield Council also says that families must,

“stay at the heart of the decision-making”,

process, and that their refusal of consent should be respected even where the deceased indicated a willingness to donate. To appear to have lower regard for the wishes of the family in their moment of bereavement would make their dilemma even more poignant and might make others suspicious of what might happen when a loved one dies.

The Nuffield Council suggests that a solution is to invest further in the network of specialist nurses for organ donation, who can support bereaved families. So the Nuffield Council is opening up the debate to the wider context and emphasising the need to maintain trust in the system. This is important when one recalls the Alder Hey scandal of retained organs 30 years ago, which led to the Human Tissue Act and dealt a serious blow to public trust in the handling of tissues and organs by hospitals—trust which has only now recovered and should not be risked again.

I should point out that one can also foresee legal disputes over the meaning of the provision in the Bill that there is no deemed consent where friends or family provide information that would lead a reasonable person to conclude that the deceased would not have consented to donate in his lifetime. That is in Clause 1(4) inserting the new subsection (6B) into the Human Tissue Act 2004. Any legal delay in decision-making would necessarily be fatal to the successful removal of the organ, which has to be done swiftly. I envisage that any information brought forward at the time of death that the deceased might not have consented, reasonable or not, would act to stop the removal.

There were also concerns on the part of faith groups, which I believe have been successfully addressed and handled. The Government should be thanked for listening. In Judaism, as the noble Lord, Lord Leigh, said, there is nothing more important than saving a life. Religious strictures yield to that, and donating organs is invaluable. Jews and some other faith communities have a commitment to bodily integrity that extends through life to death. Therefore it is critical for them to retain an element of donor and then family control in the system.

The letter from Ms Doyle-Price, Parliamentary Under-Secretary of State for Mental Health and Suicide Prevention—what a bag of responsibilities she has—which the noble Lord, Lord Leigh, referred to, was sent to the Board of Deputies of British Jews, dated 25 October, and was very welcome. The Board of Deputies represents mainstream Judaism. In that letter, the Minister confirmed that the concept of deemed consent applies only in the absence of a decision by the deceased or their appointed representative to consent or not consent, and that the method for signifying non-consent is not limited by the Bill.

The letter also said that, if an individual cannot be identified or a person in a qualifying relationship cannot be found, the organ donation will not take place, since they have to be consulted. Individuals will also be allowed to consent to donate organs selectively or conditionally. And a new faith option will be included in the organ donor register, where organ donors can request that their faith is taken into account when organ donation is in issue; the text on the register will say, “I would like NHS staff to speak to my family and anyone else appropriate about how organ donation can go ahead in line with my faith or beliefs”; and appropriate agencies will engage with faith and minority communities in developing guidance that addresses those concerns.

This letter provided faith and minority communities with the comfort that the change in the organ donation system will respect beliefs while helping to save lives. Along with the noble Lord, Lord Leigh, I ask the Minister to confirm that those assurances will be upheld.

In Vitro Fertilisation: 40th Anniversary

Baroness Deech Excerpts

Thursday 13th September 2018 Lords Chamber

Moved by

[Baroness Deech]

That this House takes note of the 40th anniversary of the first baby born using in vitro fertilisation.

[Baroness Deech (CB)]

My Lords, let us celebrate the birth of Louise Brown in July 1978, a revolution in reproductive science and a British first due to the work of Dr Robert Edwards, a Nobel Prize winner, and Dr Patrick Steptoe. The government response was to establish a committee, chaired by Baroness Warnock, to look into the repercussions. Her 1984 report of the Committee of Inquiry into Human Fertilisation and Embryology paved the way for the establishment of the Human Fertilisation and Embryology Authority in the 1990 Act. Baroness Warnock famously said:

“People generally want some principles or other to govern the development and use of the new techniques. There must be some barriers that are not crossed, some limits fixed beyond which people must not be allowed to go. A society which had no inhibiting limits, especially in the areas of birth and death, of the setting up of families and the valuing of human life, would be a society without moral scruples, and this nobody wants”.


These should continue to be our guidelines for the future, whatever it holds.

As well as establishing the HFEA, which I had the honour to chair for seven years, the 1990 Act provided for the licensing and storage of embryos, a database, and the use and donation of gametes in treatment and research. The 2008 Act provided further for research on embryos, for same-sex and unmarried couples, surrogacy and a ban on sex selection.

The UK is a world leader in embryology and IVF. Our regulation, which is studied in many other countries, has provided responsible conditions for research and has safeguarded the health of parents and babies. This is the opportunity to thank the Lord Speaker, in his earlier incarnation as the Secretary of State for Health, for getting Baroness Warnock to write the report and for kick-starting the whole process. It is an example of his forward-looking attitude to public health. The noble Baroness, Lady Bottomley, also played an important part in getting the Bill through.

Fortunately, the HFEA has survived at least two attempts to get rid of it by amalgamation. It has stood the test of time and provided a safe haven for new developments like mitochondrial donation. A few limitations will be noted, but we should celebrate the overall success of this British achievement—a magnificent anniversary for the potential of parenthood and for the prospects that embryo research have opened for good health. More than 8 million IVF babies have been born worldwide, 300,000 of them here. By 2100, 3% of the world’s population may be due to IVF. One in six couples has fertility issues. Some 41% of treatments are on the NHS, but availability varies by region for financial reasons. Only 24 clinical commissioning groups offer three cycles of IVF, in line with the NICE guidelines, while seven offer none at all. Moreover, the conditions applied by those that do offer IVF vary, such as being under a certain age or not already having children.

What happens if you have to pay privately? The cost is exorbitant. The HFEA has no remit over price. The cycle of treatment can cost up to £5,000 and there are stories of pricey add-ons being offered without proof of their efficacy. Many people go abroad for treatment because they are deemed unsuitable here, because of the cost, or to avoid the identity of the donor ever being disclosed. There is freedom of movement for such services, but the standards applied in other countries may well be inferior to ours—for example, in screening sperm for disease. They may be more lax about the use of multiple embryos, resulting in a multiple pregnancy. The woman treated abroad comes home to deliver, say, triplets in a UK hospital with the attendant expense and risk that comes with triplets.

The estimated cost of providing full NHS fertility services is £77 million. This would be money well spent because cuts in NHS provision may tempt doctors to transfer more embryos than they should, with the resulting costly multiple births. The percentage of multiple pregnancies through IVF has dropped from 25% in 2008 to 11% in 2016, and this decrease needs to be sustained. Multiple pregnancies are three times as expensive as single ones, sometimes giving rise to emergencies in pregnancy, ill health conditions in the babies, and costs to families both psychological and financial. Regulation must resist the blandishments of doctors to maximise success through the transfer of multiple embryos.

There has been a rise in pre-implantation genetic diagnosis of embryos, enabling parents with a genetic disease to choose healthy embryos. It is possible to screen for about 400 serious diseases. There is no international legislation on this, leading to fears of designer babies. Egg freezing for social reasons and for the preservation of the fertility of cancer patients has increased to more than 1,000 per annum. The techniques for freezing eggs are improving and the topic needs to be revisited because the 2009 regulations on the statutory storage periods for gametes were drafted before freezing became a real option. Freezing enables women to start to balance personal and professional life choices. The basic 10-year limit on storage needs to be reviewed urgently. If a woman freezes her eggs at the age of, say, 25, they will be disposed of when she is 35 so they will not be available to her when she is most likely to want to use them—and even more so if she freezes them when she is in her 30s. If they are allowed to perish, she will be forced to use the more expensive and inconvenient donor eggs.

The regulations as they stand are discriminatory and may be contrary to Article 8 of the European Convention on Human Rights because sperm can be stored for 55 years. The 10-year limit on eggs is wasteful. The cost of treatment and annual storage charges are very high: a few thousand for the removal of the eggs and then a rising charge every year for storage—a charge which a woman has no choice but to meet, and in the end all that is wasted. An extension could be effected by regulation, as allowed by Section 14(5) of the Human Fertilisation and Embryology Act 1990, by adding a ground for extension such as the woman not yet having made a decision about use or not having completed her family. Alternatively, it could be achieved by a panel allowing extension on a case-by-case basis. I want an answer from the Minister on this.

Mitochondrial donation is another British first, which noble Lords will recall debating in this Chamber in 2015 when the regulations permitting it were approved. The UK was the first country to license gene editing in research and mitochondrial donation in treatment: that is, a second mother providing normal mitochondria for the egg of the carrying mother to free a baby of disease.

All these advances mean that the debates continue about the moral status of IVF and the embryo. We should be wary of too much pressure being put on women to pursue treatment at all costs and of treating men as mere sperm donors, along with the pursuit of perfection. Commodification of the male contribution is regrettably a consequence because the treatment and effects tend to be focused on women. The man’s consent was deemed necessary in the Natalie Evans case, but was totally overridden in the crowd-pleasing judgment in the Blood case, luckily undone by later legislation.

The burden of guilt on the shoulders of the infertile woman seems especially heavy in societies where wives are valued for not much more than their fertility. A message taken from reflection on the 40-year history of treatment is this: every woman, like every man, is worth while as her own person without having to be a mother. No childless woman should ever be made to feel that she can be perfected and given a role in life only by being subjected to every reproductive technique that can be provided at limitless expense. There has to come a time when a caring doctor should consider the infertile woman’s future with her if the treatment does not succeed.

IVF has responded to and been influenced by changes in family structure, providing egg donation and surrogacy for older parents and same-sex couples, and PGD and mitochondrial transfer to help parents avoid disease in their children. Anonymity in sperm donation has ended and children will be able to get information about their fathers if they know that they are IVF-conceived. This will have an impact on our views of biological and social parenthood.

What is coming down the line? Excess embryos have enabled human embryo research, for example into miscarriage and growth defects. They may be kept for only 14 days from fertilisation—a limit that requires re-examination now that embryos may be kept viable for longer. Researchers have reached a point where they are beginning to think about experimenting on embryos up to 28 days old. This is too controversial; it would reignite bitter divisions over the nature of the embryo. As chair of the HFEA, I have been asked when the embryo or foetus is viable; I am sure that many religious leaders have been asked the same question. In Judaism, the answer is quite simple: only when it has graduated from law school.

In any case, scientists are only just beginning to keep an embryo alive for 13 days. Despite the great medical advances that could come from watching the crucial period in human development in the first month after conception, the time is not yet ripe for extension, as was said by Baroness Warnock. The birth of a cloned sheep, Dolly, in 1997 led to studies on human embryonic stem cells and stem cell research. Cells may be used to grow tissue for regenerative medicine, such as for heart disease or Parkinson’s. Genome editing—the removal of heritable characteristics from embryos, eventually editing DNA—is progressing. It is not yet permitted here, but the Nuffield Council on Bioethics recently reported that it might be permitted on a case-by-case basis if it is consistent with welfare, social justice and solidarity, and strictly regulated. Should it be? These issues need to be debated by Parliament well in advance so that they are understood and acceptable to the public and can be placed under satisfactory regulation.

I am concerned that the regulation of future genetic advances is overly complicated and difficult to navigate. Will our genetic future be as well regulated as our recent reproductive past? Following the Rawlins review into medical research in 2011, the plan seems to be that the Human Tissue Authority licenses establishments that are involved in handling and processing tissue, and monitors the quality, safety and traceability of cells used for human application—except in the case of reproductive cells, which are the responsibility of the HFEA. The Health Research Authority provides ethics review and authorisation for gene therapy medicinal products. The HFEA has to decide whether to license novel treatments that involve the manipulation of reproductive cells according to its own criteria. The Medicines and Healthcare Products Regulatory Agency provides marketing authorisation for medicinal products, including stem cell therapies, under the advanced therapy medicinal products regulations. Is that clear? Me neither. This regulatory pathway is apparently clearer to navigate for stem cell researchers than it used to be, but consistency between EU member states remains an issue. Researchers may well go to the member state with the lowest safeguards.

In 40 years, IVF and reproductive medicine have gone from simple infertility issues to matters of convenience and preference, such as the insemination of older women who are past the menopause, posthumous insemination, choosing the baby’s sex, and PGD for the purposes of eliminating inherited diseases or achieving the birth of a sibling with tissue that may save a sick older child. Then, there is cloning and stem cell work that may give us renewed tissues and the ability to live healthily for longer, if not for ever.

Just as the invention of the contraceptive pill 50 years ago divided sex from pregnancy, so IVF developments have separated genetic parenthood from childbearing, the embryo and pregnancy. Baroness Warnock’s slim report succeeded in harnessing the very different views of scientists, clinicians, patients, ethicists, religious people and politicians. Developments in IVF have kept in step with changes in the modern family and have put Britain at the forefront of innovative but safe research. I hope that Baroness Warnock is proud of the achievements of the regulatory structure to which she gave birth. I beg to move.

--- Later in debate ---

[Baroness Deech]

My Lords, many years ago, before I was in this House, I was summoned to give evidence to a Select Committee of the Commons about the HFEA. I had hardly sat down when the chairman looked at me and said, “Who do you think you are, playing God?” I did not miss a beat. I said, “I am playing God because that power was given to me by Parliament”. I mean, who else could give me such a power? It goes to show how important, and how efficient, our law-making has been in this area, largely because of the expertise that was evident in this House then and is still evident today. This topic shows just how valuable the membership of the House is—it is full of ethicists, doctors, obstetricians and gynaecologists, theologians, and other people who know how these things work.

I thank the noble and learned Lord, Lord Mackay, for his contribution; I also thank the noble Baroness, Lady Thornton, the noble and right reverend Lord, Lord Harries, and many others who, over the years, have pushed forward the legislation or helped to improve it, or have served on the HFEA. When we have debates in the future, as we must do, about surrogacy and genome editing, I expect that same expertise to show itself. It is a very good example to the outside world of why we have a second House and why many of our Members are appointed on the grounds of their expertise.

Guiltily and belatedly, I pay tribute to Jean Purdy, to whom I should have given credit. There is a certain element, in science generally but also in this field, of rather overlooking the contribution of women. My experience when visiting clinics and seeing patients was that IVF was very much something that powerful and confident men did to grateful, subservient women. I heard one in vitro fertilisation doctor say, “I have made a thousand women pregnant”. I wondered quite what was going through his mind and how badly he took it when it did not work.

There is another unsung female hero, if that is the right word: Mrs Brown. We appreciate the birth of Louise Brown, but let us imagine and reflect on the courage and fear that must have gripped Mrs Brown as she waited to give birth to the first-ever IVF baby.

[Baroness Barker]

We have talked today about how Louise Brown was the first IVF baby, but we have not mentioned the most wonderful thing of all, which is that loads of people in Oldham, some of whom I know, were invited to take part in this world-leading research programme. They took part not because they had money but because they lived in a United Kingdom that had a National Health Service. So it is absolutely right to mention Mrs Brown, but a whole load of men and women in Oldham, whose names will never be known, played a really important part in all of this.

[Baroness Deech]

I am very glad to hear that intervention from the noble Baroness. I have often thought about Mrs Brown and it is very sobering to realise how many other people contributed to the eventual success.

I look forward to this House debating changes to surrogacy reform, which I hope will come soon. I hope also that we will debate genome editing and how to regulate it in the future with the expertise that we have.

There is just one issue that I remain unhappy with. I think that there must be a missing letter. The noble Lord, Lord O’Shaughnessy, referred to a letter to me from, I think, Maria Miller. I wrote to the noble Lord in mid-July but I have no recollection at all of receiving a response.

[Lord O'Shaughnessy]

I am sorry to interrupt the noble Baroness. It was from my colleague Jackie Doyle-Price, the Minister. If it has not arrived, I absolutely apologise, and I will make sure that it gets to the noble Baroness as soon as humanly possible.

[Baroness Deech]

I contacted the noble Lord this morning to say that I had not received a response. I can see that something went wrong somewhere and I do not quite know what the response will say. I listened to the noble Lord but I think that relying on medical exemptions to the 10-year limit is insufficient. Many—indeed, an increasing number—of the women who want egg freezing do so not for medical reasons but for pressing social reasons, with which we should have sympathy.

Regardless of the science, there is no reason why, if you can keep your eggs for 10 years, you should not be able to keep them for 20 if that is suitable—and it can be achieved simply by a change in regulation. The pressures on women with the biological clock ticking and the cost of freezing are such that it is a pity to say to them, “Don’t wait for Mr Right. Time is ticking. Mr Average will have to do, or Mr He-Will-Do will have to do”. As has been said, it would not involve many women—but the fact that there are not many is no excuse for not changing the law. So I hope that the letter, which I have not yet seen, is sympathetic. I will continue to raise in this Chamber the issue of egg freezing until we get a change, because it means a great deal to many women and it will have a profound psychological effect on the way they lead their lives.

I conclude by thanking all noble Lords who have participated in this very meaningful anniversary debate, and I am even more grateful to those who have played such an important part in achieving this great British success over the last 40 years.

Motion agreed.

Health: Hormone Pregnancy Tests

Baroness Deech Excerpts

Thursday 21st January 2016 Lords Chamber

[Lord Prior of Brampton]

All I can do is entirely agree with what my noble friend says. That must be right.

[Baroness Deech (CB)]

My Lords, there has been great fuss about the Prime Minister’s wish to ensure that all women, particularly Muslim women, learn English. What steps can the Government take to make sure that all pregnant women receive directly the medical advice that they need during pregnancy?

[Lord Prior of Brampton]

Much advice is available on NHS Choices and elsewhere. Clearly, GPs have a primary responsibility in giving initial advice to women, of whatever nationality, when they become pregnant.

Care Bill [HL]

Baroness Deech Excerpts

Monday 29th July 2013 Lords Chamber

Moved by

[Baroness Deech]

105SA: Before Clause 107, insert the following new Clause—
“Unpaid carers and co-dependants: financial rights and obligations
(1) The Secretary of State must arrange for a review of the legal and financial rights and obligations of—
(a) unpaid carers and those they care for, and (b) co-dependant family members who share a house,and who in the case of paragraphs (a) and (b) are adults within the prohibited degrees of marriage and who have lived together in the same household for a period of at least five years.(2) The review referred to in subsection (1) shall be for the purpose of considering the creation of a legal status that is non discriminatory and the review shall include rights and obligations arising on the death of one of the adults included in subsection (1)(a) and (b).
(3) The Secretary of State shall report to Parliament on the outcome of the review and the arrangements made by the Secretary of State must provide for the review to begin as soon as practicable and include a full public consultation.”

[Baroness Deech]

My Lords, I return once again to the treatment, during life and at death, of elderly siblings or close family members who have lived together for years but whose position vis-à-vis each other and the state is fragile. Noble Lords may recall that I addressed this issue twice during the passage of the Marriage (Same Sex Couples) Act and that I have spoken about it on several occasions in debates. You wait for years for the right Bill to turn up and then two come along together.

In 2004, the House agreed to an amendment that would have extended civil partnerships to family members in view of the financial disadvantage they suffer under inheritance tax, but not only inheritance tax. Civil partnership structures may have been overkill, yet the Government acknowledged the importance of the issue even though the amendment was overturned in the other place. Still nothing has been done. I have tried to persuade the House more than once to take heed of the unfair way in which carers and siblings are treated in our law—indeed, they perceive themselves as being treated unfairly—compared with those in a sexual relationship.

In the course of the Civil Partnership Bill 2004, some Members of this House said that it was not the Bill through which to right an injustice. During the passage of the Marriage (Same Sex Couples) Bill the same argument was made. However, where there is a wrong we should hasten to take the opportunity to remedy it without resorting to technical or process arguments.

The unfairness has increased. Every adult in this country can now marry or enter a civil partnership, for whatever reason, with concomitant legal advantages. Only family members cannot benefit. Today I received a letter from two such people. They live together in their family home—one is divorced, the other never married—and when the surviving parent died six years ago they paid a great deal of inheritance tax. They feel that the current law treats them unfairly and fear that the son, who will inherit from both of them, will again have to pay a vast amount of tax. They say there is nothing they can do about this. Cohabiting couples can choose to marry and thus benefit; and same-sex couples can marry or enter a civil partnership. However, because they are blood relations there is nothing that they can do.

--- Later in debate ---

I respect the wish of the noble Baroness to care for those who care for others. However, I hope she can see that she was in fact right when she said that the Care Bill was not the vehicle that she was seeking. I hope that she will accept that what she proposes would require a root-and-branch review of the whole tax and welfare system and that the Government and society show no sign of being persuaded that this is the right route to go down. Although the noble Baroness will be disappointed, I hope that noble Lords will accept that the Care Bill offers much in support of carers and that the noble Baroness will be content to withdraw her amendment.

[Baroness Deech]

My Lords, we start from the position that the European Court of Human Rights found that the situation was discriminatory. As far as I am concerned, it has nothing to do with the Christian Institute or attacks on civil partnership. I have nothing to do with the Christian Institute. I got interested in the Burden sisters’ case because two of my former students were their barristers and the two ladies wrote to me. I then remembered all the other situations that I knew about.

This is not a question of forcing a relationship on anyone. We all know of situations where two people choose to live together: no one has forced them to and either of them could have moved out years ago. There are many of these situations around the country. Two family members have lived together voluntarily and feel slighted when death and other difficult legal situations pop up and there is no proper law for them. That is why I said in my amendment that I was referring to adults who have lived together for five years—I could easily have said 20 years and it would have come to the same thing. I am no longer pushing for a relationship because that has been seen by many in the House to be inappropriate. However, I think it would be heart-warming to those who have written to me and taken an interest in this if the House were to be a bit more generous-spirited towards people who find themselves in this situation. It is a question of equality in a situation where the European court did find that there was discrimination.

People are not tied to each other in such a way that one might take advantage of inheritance tax relief—they have chosen to live together and would expect a hand of equality to be offered to them. The noble Baroness, Lady Northover, pointed out that only a very small number of people pay inheritance tax. The other side of the coin is that, if there were some generosity, for example towards siblings in this situation, a very small number would be affected. As far as I understand it, avoiding inheritance tax is rather more complicated than the noble Baroness has indicated. It takes quite some confidence to start making gifts when you think that you only have seven years to go. As far as I know, if you carry on living in the house, it could hardly be regarded as a gift that you have handed over to someone else; you would have to move out to make it plain that it was a gift.

I hope that between now and Report, the Government would at least give some indication that they will look at inheritance tax in the situation that I have described. Otherwise I might well choose to come back to this in the interests of those who have written to me and who feel that they do not get the same generous treatment on death as others. In the mean time, I beg leave to withdraw my amendment.

[Baroness Barker]

Before the noble Baroness does that, I would just make a point of fact. If people make arrangements in respect of their property for the purposes of minimising their inheritance tax, they do not have to move out. That is a matter of fact—they can continue to live in the property. I would not like people watching our debate to take what the noble Baroness has said as fact. I believe that she is wrong.

Public Health England Advisory Board Membership

Baroness Deech Excerpts

Thursday 4th July 2013 Lords Chamber

[Earl Howe]

I simply cannot tell because we do not know which candidates have come forward. It may be that no women come forward. I hope that that is not the case. We make a point of advertising our appointments on the website of Women on Boards UK Ltd—the noble Baroness may be aware of it—which is an open UK-wide organisation for women seeking to leverage their professional skills, if I can put it that way, on to leadership roles. We will see what happens, but I assure the noble Baroness that while there will not be positive discrimination, there certainly will not be negative discrimination either.

[Baroness Deech]

Does the noble Earl agree that very well qualified women are held back from getting appointments by the lack of affordable childcare and that this is especially crucial in medicine? Does he agree that report after report has recommended that medically qualified women be given more flexible working arrangements, and more time and help, to serve on boards such as this, and that those reports have by and large not been implemented?

[Earl Howe]

I am aware of those concerns and I share them. In the context of Public Health England, these are non-executive roles and will involve only a certain amount of the person’s time. Nevertheless, childcare could well be an issue for any successful woman candidate.

NHS: Women Doctors

Baroness Deech Excerpts

Tuesday 6th November 2012 Lords Chamber

Tabled By

[Baroness Deech]

To ask Her Majesty’s Government how they propose to facilitate the retention of women doctors in the National Health Service.

[Baroness Hollins]

My Lords, on behalf of my noble friend Lady Deech, and at her request, I beg leave to ask the Question standing in her name on the Order Paper.

NHS: General Practitioners

Baroness Deech Excerpts

Wednesday 23rd May 2012 Lords Chamber

[Earl Howe]

My Lords, each GP practice will have a GP or other health professional who will represent the practice in dealing with the CCG. Other GPs may be involved in the clinical design of local services, building in some cases on existing GP involvement in practice-based commissioning. Most day-to-day commissioning activities are likely to be undertaken by staff within CCGs, but part of the rationale for this is clinical engagement and involvement. I would be very concerned to hear of instances where GPs felt that they were being shut out of the process of development that is now under way. If the noble Baroness could draw my attention to any such instances, I would be grateful.

[Baroness Deech]

My Lords, the Minister will know that a very large number of GPs are women. I chaired a committee on this for the Department of Health. To increase their availability, what steps is he taking to ensure that there is proper maternity leave provision for GPs, and assistance with childcare? These two issues have definitely restricted the availability of women GPs.

[Earl Howe]

The noble Baroness is correct: these are important issues and my department is in regular contact with the Royal College of General Practitioners, talking about those issues among others. The number of GP trainees has increased in recent years, as she will know, both men and women. The Centre for Workforce Intelligence, which is our independent advisory body on workforce planning, recommends that we should increase the number of entry-level training posts by 450 to around 3,250, phased over the next four years. I am afraid that I have not got the split of figures between men and women GPs but I shall write to her to let her know exactly what we are doing to address the areas of concern that she has raised.

Health and Social Care Act 2012

Baroness Deech Excerpts

Wednesday 25th April 2012 Lords Chamber

Asked By

[Baroness Deech]

To ask Her Majesty’s Government whether they have any plans for post-legislative scrutiny of the Health and Social Care Act 2012.

[The Parliamentary Under-Secretary of State, Department of Health (Earl Howe)]

My Lords, all government Bills receive post-legislative scrutiny within five years of receiving Royal Assent. However, I can reaffirm the commitment that I made at the Second Reading and Committee stages of the passage of the Health and Social Care Bill. Although five years would normally elapse prior to the Department of Health undertaking post-legislative scrutiny of a Bill, we will bring that forward to three years for the Health and Social Care Act 2012.

[Baroness Deech]

My Lords, I am grateful to the Minister for his reply. However, does he agree that the reputation of this House rests largely on its ability to scrutinise, and that there is still insufficient capacity for this House, not a department, to carry out post-legislative scrutiny? Does he further agree that the Health and Social Care Act is very different in the end from what was proposed? It aroused huge concern and must be a number one candidate for monitoring, not necessarily by the department but by this House to ensure the appearance of total objectivity.

[Earl Howe]

My Lords, I am in tune with the sentiments that the noble Baroness has expressed. I am sure that she will be in no doubt that my department will be monitoring the implementation of the Act very closely. Of course Ministers will continue to provide information to Parliament—for example in response to Questions and in Select Committees and, indeed, in debates if noble Lords put down Motions. I am sure that we will provide a lot of information both on the implementation of the Act and on health and social care more widely in the months and years ahead.

Public Bodies Bill [HL]

Baroness Deech Excerpts

Monday 9th May 2011 Lords Chamber

Moved by

[Baroness Deech]

7: Schedule 5, page 22, line 11, at end insert—
“2 An order may not be made in respect of the Human Fertilisation and Embryology Authority or the Human Tissue Authority unless an independent assessment indicates that making such an order under section 5(1) would increase the cost-effectiveness of the functions exercised by that Authority.”

[Baroness Deech]

My Lords, in a nutshell what I and others are calling for is that the HFEA and the HTA should remain untouched until a new research regulatory body is in place with its own statute ready to receive those functions, and that in the mean time there should be a wholly independent external review of the HFEA.

The HFEA is like no other quango. Its work touches deeply on the intimate lives of the one in six couples who cannot conceive naturally, the health of babies, scientific research, cures for diseases now and in the future, the profits of scientific companies, and public morality. It is unique, has an international reputation and was a British first. I am seeking to preserve it from being shattered and to prevent lasting damage being caused to that area.

The HFEA and the Human Tissue Authority, to which similar considerations apply, are both listed in Schedule 5 as bodies that may have their functions transferred or modified under Clause 5. In Committee and at Report, amendments were tabled to remove the HFEA and the HCA from that schedule but, for various reasons, the proposal was not voted on but withdrawn to give the Government a further chance to reflect on the damage that it seems to us will be done, which we were convinced would persuade the Government to change their minds. This did not occur. Indeed, it seems that the Government are developing policy in this area as they go along. I sometimes suspect that behind closed doors there would be relief if the amendments being looked at by the House today were to succeed.

The first two amendments in the group are set down in my name and those of the noble Baroness, Lady Warwick, the noble Lord, Lord Walton, and the noble and right reverend Lord, Lord Harries, who cannot be in his place today because he has an unbreakable prior commitment but is giving his full support. The amendments seek to rectify an omission—the need for an independent review—and to prove a point that change in the organisations will be for the worse.

We have the support of the key organisations in this field—the Association of Clinical Embryologists, the British Fertility Society, the British Infertility Counselling Association, the BMA, the RCN, the RCOG and the Infertility Network UK. They do not consider that the HFEA should remain in the Bill because there has been no full and impartial public review of the risks and benefits of the new proposals, including the financial costs of all the options. However, as I have said, the removal of the two bodies from the schedule is not now a possibility. There is agreement that there are some elements of its remit that the HFEA could do better. Therefore, there should be an independent external review of the HFEA, with the aim of reducing bureaucracy, increasing accountability and saving money—albeit that the cost to the public purse is only £2 million and can be reduced. Even those who are most critical of the HFEA cannot oppose these two amendments, which call for just such a review.

The consultation proposed by the Government is not at all the same. No doubt the HFEA’s working practices could be streamlined with other regulators. Efficiencies could be found in the back offices and research regulation could be improved. However, there was no need to include the HTA and the HFEA in this Bill. No matter how irritating the HFEA may have been found to be by clinicians, they must surely welcome a review, for if they accept the Government’s way forward the irritations will no doubt increase and there will be no improvement of those functions.

I wish to say a few words about the third amendment, Amendment 9. Just shifting the HFEA into the Care Quality Commission will not achieve money savings or efficiency. The shift will not meet the objections of the professionals to some of the ways in which the HFEA works. I am saying: do not take it apart but make it better, with an impartial review by, for example, the King’s Fund, the Nuffield Foundation or the Wellcome Trust. Indeed, the proposed overarching regulatory body could work with the HFEA to achieve the aims desired by the Government. By splitting away the research functions of the HFEA as the Government propose, there is the risk of creating additional bureaucracy and increasing, rather than diminishing, the burden of regulation. The HFEA and HTA functions will be transferred to the Care Quality Commission, and research will go to a new body that has not yet been created. There is to be consultation about that reallocation of functions, even about the database—perhaps the most important feature to be concerned with in dismembering the HFEA—but in the mean time, the shadow of destruction hangs over the HFEA. That will affect staff morale and retention, and the confidence of scientists and clinicians, who rely on it for legitimacy and guidance, not to mention international respectability.

--- Later in debate ---

[Baroness Deech]

I thank the noble Lord the Minister and all noble Lords who have spoken. However, I particularly thank the noble Lord the Minister who has, as others have said, been very attentive throughout the passage of the Bill to the concerns of those involved in this field. I know that he has the best interests of the HFEA, the HTA, and all the people involved in them, at heart. When the noble Lord the Minister says that he gives a firm commitment, the whole House believes him and relies on his word.

The noble Lords, Lord Alderdice and Lord Winston, pointed to problems: in one case in the HTA; in the other in the HFEA. However, those points, and the points made by the noble Lord, Lord Patel, are irrelevant as, whatever problems there are with the HFEA and the HTA will not be solved by moving them lock, stock and barrel to another agency, because, as we all know, the human fertilisation and embryology Acts will remain. I say to the noble Lord, Lord Winston, that there is nothing that the agencies can do about costs. They are not able to fix costs. We all wish that the NHS would take on IVF; that would provide a solution to all our problems. However, no one can seriously imagine that if regulation were transferred to another government department, charges would somehow mysteriously come down, the patients would be charged less and nobody would make a profit. Indeed, the stories that the noble Lord, Lord Winston, shared with the House show precisely why regulation is necessary. If the doctors are all competing and jostling for pole position, this again confirms the need for regulation by a body other than a purely medical one.

It is also the case that the law is involved. I am sorry to say this about my fellow lawyers, but there are many things that the HFEA and the HTA cannot do, or cannot do more vigorously, because of the way in which the Human Rights Act came in on top of the existing human fertilisation law and shifted it much more towards the individual, the requirements of the Competition Commission and the requirements of the Data Protection Act, which make it very hard to carry out the research that we wish could be undertaken. If ever there was a case for calling for an external independent review, which is what at least one of these amendments calls for, the noble Lord, Lord Winston, has made the case because all those points can be looked at by an external impartial review, which is what we are calling for.

Although there is no time to go into this, other countries do have regulation such as is carried out here. Israel has a system for considering cases on a one-by-one basis. Canada is emulating us. Surely we do not want to be like the USA where recently a woman gave birth to octuplets. Noble Lords who have a spare moment can go online and look up Cryobank and see sperm for sale. Usually the students involved are called Randy and have a PhD from Berkeley or Stanford and sell their sperm online. We do not want to go down the unregulated route followed by the USA. I know from my involvement with the HFEA that we were bombarded all the time with concerns from the public. Many noble Lords will recall that when the HFE Act was revised in 2008, members of the public lined the streets across the road and waved banners that depicted their fear about hybrid embryos as they showed embryos that were half man and half horse because they did not understand the subject yet it meant an awful lot to them. Therefore, it is very important that regulation is put in place. I should not say that the issue was more important than abortion or neonatal care, but all these areas have their own special regulations and laws taking care of them, as this area should do. The points made by the noble Lords, Lord Alderdice, Lord Winston and Lord Patel, perfectly make the case for an independent review.

The noble Earl, Lord Howe, to whom I am extremely grateful, seems to have given a firm commitment that there will be only one transfer, if it ever happens, of the functions of the HTA and the HFEA—one jump straight into new bodies that will have been firmly established by legislation. That is very satisfactory and I am grateful to those who have listened to that case. I know it is difficult, but they have listened and we should be appreciative of that.

That leaves just one area of disagreement—the nature of the review. I do not wish to sound sceptical, but government reviews and consultations often start from a particular point of view and present rather limited options, and in the end the Government may well do what they wish anyway. I believe that given the range of problems that have been revealed, not just when I was addressing your Lordships’ House but by expert speakers on the Floor, there is a strong case for a wholesale review by an external learned body before the HFEA and the HTA take the irreversible move into the new bodies, when they are established.

Therefore, the points that lie behind certainly Amendments 7 and 8 have not been met and I wish to test the opinion of the House on Amendment 7.

Public Bodies Bill [HL]

Baroness Deech Excerpts

Monday 28th March 2011 Lords Chamber

[Lord Willis of Knaresborough]

My Lords, I apologise to the noble Baroness, Lady Thornton, for missing her opening remarks in introducing the amendment.

The fact that so many noble Lords wish to speak to the amendment at this hour indicates that this is an issue of significance to your Lordships’ House. In Committee, my noble and learned friend Lord Mackay ended his remarks by saying that he had helped to give birth to the baby that was the Human Fertilisation and Embryology Authority but that perhaps it was now time to let the child move out, or words to that effect. Before a child moves out into the world, it is important that a responsible parent—and I think that the House should regard itself as a responsible parent—knows that it is safe to do so. However, the reality is that during the passage of the Bill, and in particular during the Committee stage and in the clarification given since then, many questions asked on behalf of the HFEA and the HTA, as the noble Baroness has just indicated, have not been answered. That is regrettable. I think that the House accepts that what the Government are trying to do has a great deal of merit; it is just that it requires organisations to be properly set up before the functions are transferred.

As I have said on two previous occasions, I am not against what the Government are ultimately trying to do. However, before we get rid of two organisations in which the public have great confidence and whose operation is tried and tested, we should be absolutely clear about what will happen to their functions. Although the Minister has made tremendous attempts to satisfy inquiries from noble Lords on all sides of the House, I think that his letter of 22 March to the noble Lord, Lord Warner, raises more issues than it resolves. I am sure that the noble Lord will go through that letter in great detail and therefore I do not intend to do so. However, some of the comments in it indicate that two organisations appear to be in the running to inherit most of the functions of the Human Tissue Authority and the Human Fertilisation and Embryology Authority —the Medical Research Agency and the Care Quality Commission. I was delighted that the Chancellor made it clear in his Statement last week that the Medical Research Agency is going to be set up but, as many noble Lords have said, that announcement was made literally only a week ago. We know nothing about the way in which the organisation will work, other than the report of the Academy of Medical Sciences suggesting that an agency overlooking the whole of medical research would be a good thing.

As for the Care Quality Commission, it is itself an organisation in its infancy and learning how to do its business. Indeed, there are significant complaints about the Care Quality Commission. That is not an overarching criticism. It is inevitable that when a new organisation sets itself up, particularly one that inherited so many problems from its predecessors, there will be difficulties, yet here we are, saying that we will lump another major piece of work with it.

In Committee, the Minister made it clear that the existing personnel would be transferred en bloc into the new organisations, yet in the letter to the noble Lord, Lord Warner, there is no mention of key personnel being transferred into the Care Quality Commission. I understand that staff are seeking posts elsewhere. They will move out of the organisation. If we are not careful, there will be nothing to transfer and we will be looking for new personnel in these key posts. Will the Minister clarify that issue?

The new Medical Research Agency will not be set up until the latter part of this Parliament at the earliest. The Minister floated the idea that some of its functions could be transferred early using the Public Bodies Act—regulation and inspection of clinical services could go to the Care Quality Commission, for example. There is a further suggestion that all but the research functions of both the HTA and the HFEA could be transferred under the Public Bodies Act, as it will then be, with the final process completed following the setting up of the Medical Research Agency. Such hypothetical and confusing scenarios to break up two well-respected and well-worked regulators will do little for public confidence in either of these two areas. It will do little for clinician confidence and will certainly do nothing for research community confidence either. It is important that the agency is set up, properly staffed and has clear terms of reference agreed with both Houses of Parliament before we transfer these key functions to it.

One function that has been set out by the Academy of Medical Sciences, which is a clear pathway, is an ethical structure. We argued when we were looking at the draft Bill and your Lordships in this House argued during the passage of the Human Fertilisation and Embryology Act that we ought to have some form of parliamentary ethics committee. At least the Academy of Medical Sciences has said that there ought to be an overarching ethics committee to look at both areas. But if clinical ethics are not dealt with by that organisation, who will deal with them? Where within the Care Quality Commission are the sort of important ethical considerations that are necessary if we are to transfer all these functions to that body?

I can see the attraction of a method of transfer of functions to avoid primary legislation. I understand why the Minister would want to go down that road, particularly given the enormously strong public scrutiny over legislation concerning the Human Tissue Authority and embryology and stem cells over the past five years, but the idea that if the scrutiny is only in both Houses of Parliament it will be less severe does not hold up. There are 200 new MPs in the other place who were not party to any of this legislation when it went through. It is highly optimistic to believe that there will not be very detailed scrutiny of any new arrangements. I suggest to the Minister in all humility that he accepts the amendment before us tonight or makes some provision to satisfy our concerns. He should seek a comprehensive solution to the problem that the Government have created for themselves. I for one—and, I suspect, many of your Lordships—would agree that there is a way forward from this. The Medical Research Agency is a good idea. There is a possibility of transferring some of the functions to the Care Quality Commission, but it needs to be done en bloc, rather than piecemeal, so that there is a danger of undermining two excellent regulators, which have public confidence, the confidence of most clinicians and the confidence of the research community.

[Baroness Deech]

My Lords, I declare an interest as a former chair of the HFEA. My name is on this amendment, and I support every word of what previous speakers have said. Those who oppose this amendment consist largely of those who are impatient about the shackles that regulation imposes and wish to be free of them. They will not be if this government scheme goes ahead. As researchers and clinicians, they will have to deal with at least two departments or bodies in place of one, which can be guaranteed to be no quicker or cheaper.

Criticisms have been made of the style or overlap of inspections, but that is not the point. Those faults can be remedied. Inspection can be delegated or contracted out. What is at issue is the continued existence and symbolism of one integrated body—the HFEA and the HTA—representing lay and clinical interests, accountable to patients through consultations and to Parliament, speaking with one voice to government and to the world. The HFEA may be alone among the many bodies listed in this Bill that has an international significance and symbolism. Google it, and you will see twice as many thousands of references internationally as in the UK. It has achieved a presence in the world that has helped to give UK science a good reputation and has enabled this country to be the first legally to embrace embryo research for stem cells and as the object of study around the world. Other advanced countries have national ethics committees, such as the United States and France, or HFEA-type regulators, such as Canada, California and parts of Australia. They will be aghast that where the UK led the way it is now abandoning its respected structure.

Now we have to look at the unanswered questions—indeed, there are more unanswered questions at this stage of the Bill relating to these two bodies than there were a few months ago. Noble Lords have referred to them. There is a failure of governance in the plans put forward in the Bill. Plans is too positive a word for an outline of future options which may or may not involve primary legislation and may or may not be predicated on the establishment of an unknown new body—a general medical research regulator—about which we know next to nothing. The notion of an all-purpose regulatory body for medical research is a possibility mentioned in a letter kindly sent by the Minister to those interested in this amendment and available in the Library. However, there is no information in that letter as to when and whether it will be created and how much will be in its scope. There are no powers in this Bill to set it up; it will have to be provided for in separate primary legislation when time allows. But the new body is a linchpin of the planned dismembering of the HFEA and the shifting of embryo research away from it. How much confidence can UK and overseas researchers who may come here have in our system, while years may go by before it is reconsidered? It will be like the familiar experience of being forced into a single lane on the motorway with a coned-off section indicating improvements but with absolutely nobody working inside the coned-off section and no end in sight. If this amendment is not passed, the attractiveness of the UK research environment may plummet immediately. Just as staff may drift away, so will researchers.

As others have said, the future division of functions has not yet been settled, but we know that there is already a risk that the CQC will be overburdened. If there is an overlap between the CQC and the HFEA in licensing, the CQC should be relieved by dropping HFEA-type inspections. In the mean time, the welfare of patients and children will be at risk. It is not clear what functions will go to the CQC and we do not know where the all-important database will go. In a few years’ time, children will be entitled to ask how about their parentage. Who will safeguard the answers? Who will enable researchers to carry out anonymised research from that database? The future governance and organisation of IVF and related matters has been cast into even greater doubt than before in this latest attempt to sort out the detail, which goes to show what a bad idea it was to unpick the HFEA in the first place.

--- Later in debate ---

[Earl Howe]

In theory, my noble friend makes a constructive suggestion. We have considered that option and, I am afraid, rejected it on the grounds that the Health and Social Care Bill is big enough as it is, and contains a substantial programme of modernisation. It would be possible to Christmas-tree that Bill almost ad infinitum, and we have decided that that would not be helpful. With the Health and Social Care Bill, we seek to focus on the modernisation agenda, pure and simple. I am sorry to disappoint my noble friend, who makes a perfectly sound point, but I am afraid that we are not going to do that.

As I made clear earlier, I confirm to my noble friend that the CQC will have staff transferred into it. The intention is that expertise in staff and advice will follow the functions. Unfortunately, we cannot be definite about exactly which functions will be transferred to the CQC or elsewhere until after the summer consultation. If, standing here, I were to say exactly how that would work, I would be pre-empting the results of that consultation. I agree on the desirability of having clarity and certainty, and our aim is that there should be more clarity and certainty for HFEA and HTA staff after the consultation.

The noble Baroness, Lady Warwick, asked a number of detailed questions about the effect of our proposals on bodies regulated by the HTA and the way that its functions are performed. The case that she put eloquently was an argument in favour of keeping the HTA’s functions together. I understand her point of view; however, I reassure her that we will consult on the option of keeping the HTA’s functions together. We will not consult simply on one model, let alone pre-empt the results of the consultation.

[Baroness Deech]

Will that same option in the consultation apply to the HFEA, whereby its functions can be kept together?