(8 years, 5 months ago)
Lords ChamberMy Lords, I thank the noble Lord, Lord Rooker, for his very clear and forceful statement about adding folic acid. We cannot say that this should not be done. From what he said, there is no doubt that this should be taken up: adding folic acid to flour should take place very soon. If we can save any children from disability, it is our duty to do so. Since many other countries relied on UK research to bring in their own legislation on this, it is pretty pathetic that we have not. The US, Canada and Australia have done this using our research so it is very strange and pathetic that we have done nothing. I cannot understand what the negative is here. What could be the reason for not doing this? If there are, say, 50 births with defects, that is 50 people—human beings—who will not see a good life, or even see life at all. A friend had a daughter with spina bifida. It wrecked that girl’s life and it wrecked the lives of her parents. It is not just the child—if they live—who suffers but the whole family.
I got up to say something else as well. It may not be the right moment—but then, when is the right moment? If folic acid is to be added to flour, I would like to make a case for adding vitamin D as well. People who have come from the subcontinent suffer greatly from vitamin D deficiency. There are now cases of rickets even in adults. There is a lot of evidence that vitamin D deficiency affects people from the subcontinent. Again, it will not hurt or harm anybody to add it. It is particularly necessary, if it is not to be added to all flour, that it be added to chapatti flour, the atta, which most Asian families use. This is a serious matter for Asian families and their children, as they, too, have rickets. When I was teaching many years ago, in the 1960s and 1970s, it was not unusual to see children who came from India in the classroom with rickets. There is no vitamin D around us here. In India or Pakistan, it is all round everybody. There is a new problem, too, because we now say to people, “Don’t sit in the sun; you might get skin cancer”. People are not keen to sit in the sun. It is a real issue. Many families from the subcontinent suffer from vitamin D deficiency.
As has been said, why can they not take supplements? We know that people are not good at self-medication of any kind. It is not medication but it is still something for their health. We get medication and all sorts of things, including advice. Do we take it? I think 90% of people are quite slack about it. That is why I make the case for adding to the Bill the vitamin D deficiency aspect. We will probably never get another chance to do this. If it can be done by an amendment, that would be absolutely wonderful. On the other hand, I have no intention of detracting from folic acid by putting this forward. Clearly, that is absolutely a must, must, must. But vitamin D deficiency is beginning to grow in this country and it would be a very good thing if that were taken on board.
The noble Lord makes a very good point and I hope to address that issue as I go through this, because where the line is drawn is critical to the debate that we should be having.
The ways in which we live our lives—what we eat or drink, how much exercise we should take and how we should look after ourselves and one another—all directly impact on the likelihood of getting cancer, a stroke or diabetes, or premature death. In this case it directly affects the health of children, so prevention has never been more important. I am sure everyone in this House would agree. The question, as raised by the noble Lord, is then: what are this Government or any Government to do? At one extreme, the answer is to do nothing and, at the other, it is to be highly prescriptive: to determine how we should all live and what we should eat and drink.
The noble Lord, Lord Hunt, referred to alcohol, which I will take as an example. The Government could have washed their hands entirely of that issue and left it to individuals—the classic, John Galt, libertarian approach, which he may have read about in Atlas Shrugged in his youth. Alternatively, they could have opted for some form of prohibition, as tried in the USA and as we do with certain drugs today—although with profound unintended consequences, I might add.
In the UK, as in most democracies, the balance as to where responsibility lies has shifted over the years. It has not shifted seismically or even consistently—there have been ebbs and flows of where that line should be drawn over the years—but it has shifted away from government intervention towards the individual. That is not surprising: you would expect that shift as the population becomes better educated, better informed and better able to make good decisions.
I will in a minute but will just finish this point. That is not to say that the Government have no role—far from it—just that the role is different. It is to inform, to educate, to persuade, to nudge, to incentivise, to influence and to cajole but not, I would argue, to dictate, except in the most extreme and difficult circumstances.
What amazes me is that we are talking about nudging and not doing this or that, but we often have research on issues which are of great importance not only to the individual—as we have been talking about—but to the family and to the country. When a child needs lifelong care, surely it is not a good idea to not do anything about that. We seem to be going round and round, saying that we cannot be led by research, while the Government must have their policy. But what is the policy based on?
The noble Lord has just read out a list of the functions of government. Would he not add protection to that? We chlorinate all our water to protect people from water-borne diseases. Why not put folic acid in flour?
(9 years, 11 months ago)
Lords ChamberMy Lords, the noble Baroness, Lady Bakewell, has brought to us a subject that we all need to consider. I cannot see anybody here who is a child anymore, and I think that it is important for us to think about this. I have always felt that in this country—and maybe in other countries as well—people do not want to think about the end of life. They are frightened of dying. It is a very strange thing, because the one thing that we are certain of we are most frightened of, and you would think that that was very strange indeed. I do, because I have never felt frightened of dying. When I was 12 years old, I remember very clearly thinking at bedtime, “What is it that I would have done if I do not wake up tomorrow morning?”. It does not make a lot of sense, but at least I thought about it and it did not worry me. It actually made me think about things that I should try to do.
If you try to talk to people about dying, they are upset. You cannot even use the word “death”. You have to say “passed away” or “not with us any longer”, or use other euphemisms. As human beings, we all have to accept the inevitability of dying. Therefore, like anything else that we arrange in our lives, we should arrange our death. We should plan what we want done when we die, and how it should be done. We should plan around our own personal worries about being ill and sick and having dementia—anything and everything.
The idea of making advanced decisions and having a lasting power of attorney are excellent, but how do you access the wishes of that person? I have looked through all the bits of paper that I have seen, and there is nothing that tells us how it can be done easily and clearly. We very much need to concentrate on the decision of the person who is ill and may be dying, who does not want to be resuscitated time and again. There are cases of people being resuscitated three or four times in a matter of months. That is just not right in the sense of humanity—it is not right for that person. There is no quality of life for that person.
I first read about Dr Gawande in a wonderful article in the New Statesman. That man has his finger on the absolute pulse of what we need to be doing and thinking about. He believes in looking after people, but he also believes in respect for the patient’s views, to the point when he says that the time may come when a patient needs to be able to ask for assisted dying. That man must have a most wonderful understanding of human beings, and the more that we follow what he suggests, the better we will be.
I hope that we can find a way in which to make sure that our advance decisions, such as through the LPA, are there to let everyone know our wishes. We would like to know that whatever we have wished for will be accessed before it is too late. There is talk about a national database, but could we not wear a little bracelet like the Medic Alert bracelets, when we are getting very ill, which would say, “Please look at the database for my wishes”? At least that way people cannot say, “Oh, we did not know that you had wishes”. That is the point—whether anybody knows that you have wishes. I am hoping that my son will have power of attorney for me, but he is a doctor, so it is very simple for me. Not everyone has a son who is a doctor, however, and it is very hard even for family members always to make the right decisions. Therefore, discussion between the parent and the attorney or child is essential.
I hope that something will come out of this discussion and that we will have some way of actually finding out what the person’s wishes are. The noble Baroness, Lady Bakewell, said that it is very difficult to make a power of attorney. She referred to the experience of the noble Baroness, Lady Afshar, who took a very long time to do it. That is ridiculous: if you are trying to do something, and it is so difficult to do, then obviously a lot of people will be put off from doing it. It seems such a good idea that it should not be difficult to do it, and it should be possible to simplify the forms. I hope very much that something will be taken back and we will be assured that we can make decisions while we are capable and that they will be followed.
My Lords, I am very grateful to the noble Baroness, Lady Bakewell, for bringing this important issue to the House. At a time traditionally associated with making resolutions it feels like a particularly appropriate moment to be considering how we plan for later life together with our families and loved ones. I hope she will agree with me that the contributions from all speakers this evening have combined to make for an excellent debate.
I am sure all noble Lords would agree with the basic premise that all citizens should be cared for and treated in a manner that they themselves would choose, at a time in their life when they may no longer be able to make decisions themselves. The Mental Capacity Act 2005—the MCA—provides the legislative framework for how caregivers should support individuals who may lack the mental capacity to make decisions themselves. The Act and its associated code of practice emphasise the importance of treating each person as an individual and of seeking out their particular wishes and preferences, to ensure that any decision made is in the best interests of that person.
Noble Lords will, I am sure, be aware of the excellent work of the Select Committee of this House which scrutinised the implementation of the MCA last year. Its report, published in March 2014, highlighted that awareness of the Act was poor and that as a result many individuals were not aware of or taking up their legal rights. The Government embraced this finding and set out a programme of work in our response, which was entitled Valuing every voice, respecting every right. The response sets out the great challenge we face—essentially that of bringing about a change in culture whereby individuals are comfortable talking openly with friends and families about their wishes for later life and where wider society treats those who lack capacity with the same respect as those who have capacity.
The noble Baroness asked specifically about lasting powers of attorney—LPAs, to use the abbreviation—and living wills. An LPA allows someone with mental capacity to appoint an attorney to look after their affairs in the event that they lose capacity at some point in the future. As well as the traditional property and finance LPAs, the MCA legislated for health and welfare LPAs, which, I believe, are the focus of the noble Baroness’s question. There are currently more than 1.3 million LPAs registered, and applications are increasing at a rate of 20% year on year. This is good news, but we do not intend to rest on our laurels, especially when we look into the statistics and see that for every three finance and property LPAs registered, only one health and welfare LPA is recorded. The Office of the Public Guardian, which has responsibility in Government for registering LPAs, is using all available opportunities to raise awareness of LPAs through conference events, media engagements and work with multiple partners across finance, legal, health and care settings.
A number of noble Lords voiced concerns that executing an LPA is difficult and complicated. A good example of recent success is the LPA digital tool. This tool allows applicants to enter all the required information step by step on a personal computer and then simply print it out, add the relevant signatures, and send it to the OPG. This online service was the first so-called “government digital exemplar” to pass the Government Digital Service’s stringent new 26-point test. We believe and hope that this user-friendly service will help drive further increases in LPA registrations.
In 2015, the Department of Health and the OPG will continue to work closely to raise awareness of health and welfare LPAs. The department is in the final stages of production of a statement of rights which will inform the public about their rights under the MCA, including their right to make an LPA. In addition, the OPG is looking at how LPAs are used and will look to include use within the NHS as part of this project. This should lead to potential new guidance for the health system on LPAs.
Noble Lords will I am sure be aware that overall policy responsibility for the Mental Capacity Act lies with the Ministry of Justice. This was referred to by the noble Baroness, Lady Bakewell. I can inform the House today that the Ministry of Justice plans to run a campaign to raise public awareness of the options for planning for the future and encourage members of the public to think about what would happen in the event of their death or if they lost their mental capacity and needed someone to make decisions for them.
As for living wills, an issue which was mentioned by a number of noble Lords, the House will be aware that this term has no strict legal meaning but in common usage can be taken to describe an individual’s wishes and views about any future medical treatment or indeed any other care, support or lifestyle preferences. An advance decision to refuse treatment however does have a specific legal meaning under the Mental Capacity Act. End-of-life decisions are intensely personal matters. As individuals, our views on how we would like to be cared for can change over time, even when we still have full mental capacity. The Government’s policy is to seek to ensure that individuals are aware of their rights under the law—to make them aware that they have the choice to make a living will or advance decision to refuse treatment—but fundamentally to allow the individual to decide if they want to exercise this right. Our awareness raising efforts here are tied closely to our work to raise understanding of the wider provisions of the MCA. This work is multi-faceted: professional training, which I will mention again in a moment; revising our national governance structures; and ensuring that the MCA is a key line of inquiry in the Care Quality Commission’s new inspection model for care homes and hospitals.
The noble Baroness, Lady Bakewell, cited various obstacles which she felt can deter people from registering an LPA. One of these was the cost factor, which was also mentioned by the noble Baroness, Lady Wheeler. The OPG appreciates that the cost of making an LPA may be an important factor for those who wish to plan ahead. The cost of an LPA is £110. LPA forms, however, have been designed so that they can be completed without a solicitor. However, if a person chooses to seek advice from a solicitor they will have to pay the solicitor’s fees, which may vary and, of course, are a consideration. Another obstacle cited by the noble Baronesses, Lady Bakewell and Lady Flather, was that of complexity. We need to look at the balance of the arguments here. On the one hand, as I have mentioned, there are more than 1.3 million current instruments registered and LPA applications are increasing at quite a rate. Nevertheless, the OPG recognises that it is important to ensure that the LPA process is as straightforward as possible and acknowledges that some people find the existing LPA forms too complex to complete without legal assistance. It continually reviews its forms to make sure that they are easily understood. The OPG is also rewriting and restructuring its guidance and correspondence on LPAs so that it is clear, consistent and accessible to all.
The noble Baroness, Lady Bakewell, asked whether Scottish powers of attorney were recognised in England and Wales. We are aware of the important question of cross-border recognition of powers of attorney, and are considering how best to address it. We are in frequent communication with our colleagues in the devolved Administrations—for example, in Northern Ireland, where that Administration is consulting on new mental capacity legislation based on our Mental Capacity Act. Clearly, raising awareness of issues surrounding mental capacity is a UK-wide concern. My officials intend to share learning with colleagues in the devolved Administrations as part of our upcoming work programme. I will be happy to write to the noble Baroness with the precise legal response in terms of the validity of Scottish lasting powers of attorney in England.
I agree with the noble Baroness that raising awareness is important. We recognise that awareness among the general public of what an LPA is and the benefits of having one is low. We are working to increase this level of awareness, as I described. Having said that, we would not seek to tell adults that they should have an LPA; ultimately we believe that this is a matter of personal choice. My noble friend Lord Hodgson asked whether someone could use a power of attorney to make decisions about legacies. There are exceptions to the decisions that an attorney may make. I would be happy to write setting out these exceptions in more detail.
I take the point made by the noble Baroness, Lady Flather, that it is important for people to know if someone has an LPA in place. Good practice is always changing, but we should not forget that lasting powers of attorney are registered by the Office of the Public Guardian, which maintains a register. Those who wish to know whether an LPA is in place may apply to the OPG to search the register. The noble Baroness, Lady Greengross, stressed the importance of carers. I absolutely agree that carers do a fantastic job supporting those who lack capacity. I am pleased to say that my department has worked closely with the Standing Commission on Carers—
Yes, I will be quick. The Office of the Public Guardian charges a lot of money to give the information.
I will write to the noble Baroness about that. The Standing Commission on Carers, which represents the needs of carers to the government policy-making process, is a body we are working closely with. It will help us channel our new statement of rights directly to carers, providing them with an understanding of the rights of the person they care for under the law.
The noble Baroness, Lady Wheeler, spoke about the need for professional training. I agree that that is vital. Health and social care professionals need to learn the basics of the MCA through their initial training and to keep updated on this through continuing professional development. Health Education England provides national leadership for planning and developing the whole healthcare workforce. The mandate set for it by the Department of Health specifically states that Health Education England should,
“work with … partners … to improve skills and capability to respond … to the needs of people who may lack capacity as well as maximise the opportunities for people to be involved in decisions about their care”.
The noble Lord, Lord Joffe, indicated that he felt that there was a lack of government leadership in this area. I would defend, in fact, our leadership record. We do not want to shy away in the least from our responsibilities when it comes to supporting better implementation of the Act. The legislation underpinning the MCA has been widely praised. Indeed, only a few months ago, we were visited by a delegation from the Swedish Government, who are looking to learn from our legislation as they draft their own. The problem is not the framework. The problem is a lack of understanding at the local level on the ground. It is the Government’s belief that the primary drivers of better implementation of the MCA are local organisations—hospitals, care homes, local banks and solicitors. That is why we intend to make the new national mental capacity forum, which we are setting up, predominantly outward looking. Its emphasis will be on forging collaborations, but then taking these out into the country and putting actions in place at the local level. I would be happy to write further on that, when I do write, as I shall, after this debate.
I have overshot my time but, in conclusion, I emphasise that planning for a time in later life where we are unable to make our own decisions is something that we are all likely to benefit from and which can ease the burden on our loved ones. Unfortunately, as the noble Baroness, Lady Flather, reminded us, I know many people find this type of conversation uncomfortable—even morbid, perhaps. That is to an extent understandable: no one wants to dwell on the possibility of a serious debilitating disease or, indeed, on death itself.
Ultimately, however, planning for the future can be greatly empowering. It can provide a degree of comfort as we approach a vulnerable period in our lives, it can allow us to determine how we are treated—which itself can improve our well-being and health outcomes—and it can provide comfort to our friends and family. The Government are determined to support our citizens in this regard, and the thoughts and expert advice of noble Lords are, as always, most welcome.
(10 years, 8 months ago)
Grand CommitteeMy Lords, I have looked forward to this opportunity to say some things that are very dear to my heart. First, millions of girl babies have been aborted in North India, and the difference between the numbers of girls and boys in two states, Punjab and Haryana, is ridiculous. In Punjab it is 10% and in Haryana it is 11%. Bearing that in mind, it leads us to the conclusion that this must never, ever be allowed in this country. Secondly, whatever the noble Lord, Lord Singh, says, Punjab is the homeland of the Sikhs. He once said to me, “What a pity the Sikhs don’t know how good their religion is”. It is a wonderful religion, but they do not follow it. There is a lot of discrimination, which is not unusual, as we know. In Gujarat, not so long ago—this is current, I am not talking about 500 years ago—they used to drown girl babies in buckets of milk saying that they were drinking the milk. There have been such terrible things happening in countries to get rid of girl babies.
I wrote to Jeremy Hunt, and I received a reply from Dame Sally Davies, the Chief Medical Officer, from which I quote two parts. The first is that, “The CPS concluded that the two cases did not provide a clear basis of finding for a gender-based abortion” and secondly, this part is in bold, “The law is clear that termination of pregnancy on grounds of gender alone is illegal and this decision does not alter that”. We can take comfort from that. We have had a bit of debate that should not have happened today about whether there should be abortion at all, or at what stage there should be abortion. I think that it is a woman’s right to have family planning and, if she does not want a baby, not to have it. It is a human right; women have very few human rights and this is an important one.