(1 week, 1 day ago)
Lords ChamberMy Lords, I will speak particularly in support of Amendments 181, 45 to 49, 58 and 222. It is a privilege to follow the noble Baroness, Lady Hollins, and the noble Lord, Lord Griffiths, whom I thank for sharing their personal stories. They are a reminder to us that this debate touches some of the deepest things within us, and not only should we be kind to each other but we ought also to be kind to ourselves.
I declare my interests as set out in the register, and particularly that I am vice-president of Exeter Hospice Care, chair of the UK Commission on Bereavement, and patron of AtaLoss. Your Lordships will know that, however many amendments there are to this Bill, I do not feel it will ever be safe. But I want to speak on this group because I believe that these amendments are at the heart of the issue of motivation. I remain concerned about the fact that there is currently no real, deep investigation of the motivation for assisted dying.
Amendment 181 is critical for us in monitoring. Even if there were no further restriction on what the motivation is for assisted dying, just knowing and recording it is extremely important because it can give us understanding of why people choose assisted dying, especially if we are serious about properly funding the care and support for people who are dying.
If we are recording the reason why people choose assisted dying, this means that we can highlight reasons why people choose it that do not fall within the aim of this Bill. For example, there is currently no mechanism in the Bill to stop someone receiving an assisted death if they are in pain because they cannot access palliative care. I hope that all of us would believe that, if somebody in that stage of their life wants to live, they should have access to the palliative and social care support that they need.
Professor Katherine Sleeman, the Association for Palliative Medicine and the Royal College of Psychiatrists highlighted the importance of identifying and addressing unmet need. We have already heard about the pressure on our palliative care service. We know that only 30% of hospices are funded by the Government. We have begun to hear about the beds that are closing and the redundancy programmes that are in place. We also know that if hospices are only 30% funded through government funding, 70% comes through voluntary giving. That is unequal across the country, and therefore palliative care services in hospices in areas that are more deprived are likely not to be as good as those in areas where there is higher socioeconomic activity. It is important for us to begin to identify whether there are reasons for people accessing assisted dying that are not within the aim of this Bill. Therefore, asking this question of a person in the preliminary discussion is the bare minimum of what is needed here.
Amendments 45, 46, 47, 48, 49 and 58 all strike at what many other noble Lords have spoken about today: that pressure, coercion, influence, encouragement, whatever word is most legally appropriate, is subtle and complex. When asked about the meaning of pressure during the Select Committee, the Royal College of Psychiatrists cited
“expectation or the worry of letting someone down”.
In a sense, for me, that gets to the heart of why it is so important that we define these feelings and decide what we think about them. We have also heard not only how hard it is to define the term we want to use but how hard it is to spot it. We heard examples of how we are not spotting coercion already today.
We have also heard how hard it is to train. Certainly, one of my concerns in the discussion of the Bill so far has been that often our focus is on medical staff, but actually people spend much more time with support assistants, with nurses, with occupational therapists and a whole range of people, not just medical staff. Often, if somebody wants to talk about dying, it is not with the doctor but with the person who has spent more time with them, and that is a whole array of people. Therefore, training is much broader than I think we often see it.
It is also true that I suspect most of us at times feel obliged to, or a responsibility for, our family. There will be some point in our life, whether through illness or otherwise, when we have felt a burden to others. The reality is that our decisions do not live within a vacuum; they are shaped by the many currents of our life, which are different at different stages. I believe that the Bill’s supporters have decided that the policy intent is that, even if somebody chooses assisted death to save their family the cost of care, that is okay as long as it is their decision and free from coercion. Amendments 47, 48, 49 and 58 demonstrate why this is not okay. They get to the heart of how subtle coercion is. It is not just personal. As we have already heard, it can be society-wide. Discrimination in healthcare provision and failure to resource palliative care or adult social care adequately are examples of this. Indeed, describing indignity as the loss of physical function, or of incontinence, or the reliance on care, is another societal example of this. We need to remind ourselves that each person is of immeasurable value which cannot be diminished by illness, disability or care costs.
I turn finally to Amendment 222, in the name of the noble Baroness, Lady Hollins. Though we have been rightly focusing on the person at the centre of making a choice about their death, as we have heard, death affects so many more people than the person who has died. The National Bereavement Alliance has said that the needs of family members, including children, both before and after death, must be considered and met. We know that people who are bereaved unexpectedly are more likely to experience complex and prolonged grief, which is associated with worse physical and mental health, including suicidal ideation. The bereavement sector forum convened by AtaLoss highlighted the risk that the kind of grief associated with assisted death is very similar. It warned that the impact of failing to address it with the right support will bring costs not just on acute services and social care but on individual people.
That complex grief is also well documented in Canada. The Bill has encouraged helpful conversation about death and dying, but we must make sure that the Bill is clear on guidance and support for many families and friends who are involved with somebody who has requested assisted dying. The work of the UK Bereavement Commission highlighted that people still do not have access today to the bereavement support that they need, and there remains a lack of understanding of the cultural and faith considerations that many communities require for death. I hope that Amendment 222 will be an opportunity for us to be proactive about making sure that family, friends and loved ones can access the bereavement support they require.
I think it might be appropriate to hear from somebody who is not against the Bill. We have heard endless interventions.
My Lords, I want to respond to the noble Lord, Lord Griffiths, who is a member of the Labour Party. With respect, I would like the Committee to listen.
Lord in Waiting/Government Whip (Lord Lemos) (Lab)
Does my noble friend Lady Hayter want to make one point? Then we can hear from the noble Lord, Lord Polak.
My one point is that it would very nice if somebody who supports the Bill could also have a hearing.
It is a shame, because I have a particular and important point to raise in response to the noble Lord, Lord Griffiths.
I will. I was given six months to live 37 years ago. I do not often share this personal issue. I stand here today as living proof that prognosis is not certainty. Estimates are sometimes wrong and sometimes wildly wrong. That experience shapes my approach to this legislation and underlines why safeguards matter so profoundly.
When I spoke at Second Reading, I made it clear that I was against the premise of the Bill, and that remains my conviction. However, if the House decides that the Bill should proceed, it must do so with the strongest possible protections, and I support many of the amendments that were mentioned, particularly Amendment 46 in the name of the noble Baroness, Lady Finlay.
In listening to the debate, I was particularly moved by the noble Lords, Lord Evans, Lord Carlile and Lord Deben, and by the noble Baroness, Lady Fox, on the issue of coercion and encouraging. I actually pay tribute to the noble and learned Lord, Lord Falconer, on this whole issue, which is so difficult. I understand. I think that he is plastering over gaping wounds in the Bill. In fact, I think he must have more plasters than my local pharmacy. I will return to this properly when I speak to my own amendments, but I want to say that this vital piece of legislation is not fit for purpose, no matter how many amendments or how many plasters. I think we need to look.
I shall end with just these words: when we debate matters of life and death, we do so with the utmost seriousness. I believe that those who brought forward the Bill are acting from the highest motives, and I respect that, but in moments such as these, I know the whole House feels the absence of the wise counsel of the late Lord Sacks. He reminded us that purity of motive does not guarantee rightness of outcome. Our responsibility here is clear: to ensure that the law we craft is robust, precise and overridingly safe.
My Lords, this has been something of an unbalanced debate, so I hope it might be possible to hear from someone who supports the Bill. I was particularly anxious to come before the noble Lord, Lord Polak—for whom I have a lot of respect; we agree on many other issues—to respond very soon after the right reverend Prelate the Bishop of London. She was very honest when she said that she did not support the Bill, and I think she said that it was unamendable. Here we are, however, discussing amendments.
The noble Lord, Lord Carlile, spoke earlier about whether we should discuss a form of wording on which we could all agree. The question then would be: if we can agree a form of wording, would he then support the Bill? My feeling is that these amendments are not about making the Bill acceptable so that those putting them forward could then support it but are a way of trying to stop our discussion and proper scrutiny, because they do not want the Bill to go ahead.
(2 weeks, 1 day ago)
Lords Chamber
Lord Shinkwin (Con)
My Lords, I apologise, but I rise to raise a procedural issue crucial to the reputation of your Lordships’ House. When I blocked out my diary for the Fridays scheduled for Committee on this Bill, I did so in good faith. I assumed not only that your Lordships’ House would recognise the value of the views of Members with lifelong lived experience of disability, but that steps would be taken to ensure that those views were heard on an equal and non-discriminatory basis. That would be entirely in keeping with the Equality Act 2010, which placed on organisations a legal duty to make reasonable adjustments on account of disability in, among other things, the way in which they work.
In the belief that your Lordships’ House and the Government will appreciate the crucial importance of our being seen to set an example and uphold the law, which we passed and which we expect others to abide by, I emailed the Government Chief Whip and wrote to the Prime Minister to explain that, because of my disability, I need to leave by 3 pm in order to catch my flight home. I requested an assurance that the House would not sit beyond 3 pm, which is of course the time by when the House normally rises on a sitting Friday. Regrettably, I have been given no such assurance. Instead, the Government are using a procedural technicality as a feeble fig leaf for discrimination against me as one of the House’s Members—one of its few Members—with lifelong disability. I do not believe it is beyond the wit or the will of the Government, or indeed your Lordships’ House, to ensure that we rise by 3 pm so that I can participate today and on other sitting Fridays on an equal and non-discriminatory basis. Given that not one organisation of or for disabled people supports this Bill, surely it is right that all of us—every one of us—are enabled to do our duty of subjecting this monumentally significant Bill to the forensic scrutiny it requires.
In conclusion, do we really want to send the message to those who are following our proceedings today, “Do as we say, not as we do”? That would be shameful and it would be unworthy of your Lordships’ House. For our own sake, I urge the House not to discriminate against me as one of the very few Members born disabled. I therefore ask that the House rises by 3pm.
My Lords, I have every sympathy with the noble Lord, but I would like to thank the Chief Whip, the noble Lord, Lord Kennedy, for his willingness to listen and to be flexible, especially when I, together with a number of colleagues, asked for the Second Reading to be split into two days. In the Chief Whip’s remarks yesterday, he talked about convention and tradition, and so we are to rise at 3 pm or thereabouts. I place on record that, as a modern Orthodox Jewish Member of your Lordships’ House, sitting on Fridays in the winter is deeply problematic. Shabbat begins today at 3.54 pm; on 5 December, it will begin at 3.35 pm and on 12 December at 3.33 pm. Your Lordships will know that, by 3.54 pm today, I and others will need to be ready for Shabbat, and I will be in synagogue.
Keeping with my tradition, as the House will follow its tradition, there will be times, therefore, over the coming weeks that I and some others will be absent— I hope that that does not occur when I have an amendment in my name to speak to. I am grateful for the indulgence of the House, but I felt it really important to place this matter on the record as we begin Committee, which will take place only on Fridays.
Lord Ahmad of Wimbledon (Con)
My Lords, I suppose it would be apt for me to complete the Holy Trinity of faith. We have started with the Christian faith, we have heard a Jewish dimension and we have heard about equality and opportunity. As a member of the Islamic faith and as a practising Muslim, I say that, while I fully respect the House and I am grateful to the Chief Whip and the Leader, it is important that we reflect all traditions.
One of the main challenges that I have with this Bill is the lack of consultations with different communities. As many noble Lords will be aware, Friday is also a sacred day for Muslims, particularly in the middle of the day with the Jummah prayer. I just flag that point. I of course respect the organisation and the business of the House, but ask that there is time for those who practise the faith and choose to offer prayer by congregation in the middle of the day. Following on in support of my noble friends Lord Shinkwin and Lord Polak, I think that the diversity of our country, the diversity of the House and the respect of all traditions and faiths is something that should be borne in mind.
(5 months, 2 weeks ago)
Grand CommitteeMy Lords, I also congratulate the noble Lord, Lord Booth, on securing the debate. After listening to his story, I am rather glad that we were able to listen to him today. I have also listened to grieving families, passionate campaigners and dedicated cardiologists, each of them urging us to act more boldly on the issue of sudden cardiac arrest in the young.
Earlier this year, I had the privilege of co-hosting a symposium with the Italian embassy and Ambassador Lambertini. We brought together leading cardiologists and sports scientists from the UK and Italy to share insight, evidence and experience on preventing sudden cardiac death in young people. Tragically, it is not a marginal issue. Every week in the UK, at least 12 young people—children, students and athletes—die from sudden cardiac arrest. That is the equivalent of a full secondary school wiped out every year. What is more disturbing is that 80% of those young people had no prior symptoms. They were seemingly healthy, vibrant and active. Sport can exacerbate hidden conditions, putting young people at three times greater risk, yet 80% of these deaths occur in sleep, which means that defibrillators, while essential, cannot be the whole answer. We must move from crisis response to prevention.
I have campaigned alongside Mark King, who tragically lost his son Oliver at just 12 years old during a swimming lesson at my old school—King David High School in Liverpool. Together we pushed for greater access to defibrillators in schools and public venues, but even more pressing is the need for screening to detect these conditions before they claim a young life. One mother, Hilary Nicholls, shared with me the story of her daughter Clarissa. She was just 20 years old, full of promise, physically active and with no diagnosed heart condition or health issues. Her sudden death from an undiagnosed cardiac condition was devastating. Tragically, her story is not unique, so the case for widened access to ECG screening is clear.
In elite sports such as football and rugby, we have mandatory screening in place, led by UK-devised international ECG protocols. But, beyond elite sport, there is a vacuum. Students, grass-roots athletes and local community clubs are largely left unprotected. Compare that to Italy, which I recently travelled to with Hilary to see the model in action. For over 40 years, it has had a mandatory pre-participation screening programme. Young people must present a certificate before taking part in organised sport or joining a gym, and the result is an 89% reduction in sudden cardiac deaths. While I acknowledge that there are different views across Europe on the rigidity of such systems, the outcome speaks for itself. Italy shows us what can be done when there is political will, public buy-in and healthcare alignment. I also pay tribute to CRY—Cardiac Risk in the Young—and its chief executive, Steven Cox, for the excellent work the charity does in raising awareness. It has been doing so since it was founded by Alison Cox in 1995.
I do not propose a copy/paste solution, but I urge the Government and my noble friend the Minister to act on what we already know. What is needed is modest and actionable: first, more specialist training to interpret ECGs in fit and active young people; secondly, increased local capacity to carry out screenings in schools, universities and community sport—I urge the Minister to meet Hilary to look at some of the remarkable programmes in testing that Clarissa’s friends have put in place at Cambridge University; and, thirdly, greater education around cardiac health, defibrillator use and prevention woven into our schools and clubs.
We must listen to families; we must act on evidence; we must catch the condition before it catches our children. These are preventable deaths. Let us not look back in five years and say that we could and should have done more. Let us act now to save young lives.
(7 months, 3 weeks ago)
Lords ChamberI am not aware of the specifics around that point, but we will be very pleased to look into that because we do not want people to be inconvenienced and distressed even further.
My Lords, the Minister will know that, in the Jewish community, we bury our deceased within 24 hours. I have not noticed any change in that since September—so perhaps that fact will help her.
I am grateful to the noble Lord. He is of course aware that, as the former chief executive of the Board of Deputies of British Jews before coming to this place, I worked on this very area to ensure that there were swift responses and burials for the faith communities that require them. That continues to be a great focus of our work.