My Lords, I thank the noble Baroness, Lady Finlay, for introducing this Bill, which is close to her heart, as we all know. I thank all noble Lords for a great debate. I thank the Library, the BMA, Dignity in Dying, Marie Curie and others for their briefings. I declare my interest as a member of a CCG, as set out in the register.
I particularly enjoyed—if that is the right expression—the noble Baroness’s introduction to the Bill. It reminded us yet again how privileged we are to have a Member of the House with such expertise and experience. As we all know, the Bill aims to,
“make provision for clinical commissioning groups to ensure that persons in their area have access to specialist and generalist palliative care and appropriate support services”.
I want to say how much I valued the contributions from the noble Baronesses, Lady Hamwee and Lady O’Loan, whose personal experiences add enormously to our debate. Frankly, I am too close to various experiences to talk about them myself, but I appreciated the fact that they had the courage to do so and thank them for it.
If enacted, the Bill would require CCGs to ensure that individuals with palliative care needs have access to “appropriate health services”. This obligation, as noble Lords have said, would include, but not be limited to, ensuring access to pain and symptom management; psychological support for individuals and their relatives, particularly children; and information regarding an individual’s condition and palliative care. It would place a duty on CCGs to publish that strategy. They question is: can they deliver the strategy? That is the theme that has run through all noble Lords’ contributions.
I thought the briefing we received from Marie Curie was very important: it justifies very succinctly why the Bill is necessary. It tells us that every year 150,000 people in the UK do not receive the care and support they need at the end of their lives. It tells us that more than 5.5 million people will die in England, around 75% of whom will need some form of palliative care and significant action at the end of their lives. It tells us that in 2016, there were more than 1.6 million emergency admissions, as the noble Baroness, Lady Meacher, mentioned, which amounted to 11 million days in hospital and cost the NHS £2.5 billion. If CCGs do not put strategies in place to ensure access to palliative care and appropriate support for people at the end of their lives, it will cost the NHS more money than is necessary—money that could be spent on palliative care. That is the challenge the Minister needs to address in her remarks.
All the briefing we have had points to the importance of the Bill and I add my voice to those of the noble Baroness, Lady Brinton, on behalf of children, and the noble Baroness, Lady Hollins, on behalf of those who approach the end of life with learning difficulties—their contributions were very important. I think the whole House agrees that the best possible palliative care is vital, so my questions have already been asked by other noble Lords. These concern individual care preferences, which are absent from the Bill, having been included in previous Bills. I appreciate that the noble Baroness, Lady Finlay, said that codes of practice will be written to incorporate those issues that are not in the Bill and had been in previous Bills concerning end-of-life care, but there is a problem. I know that the noble Lord, Lord Balfe, does not want there to be any amendments, but the truth is that if we want the Bill to be effective, we have to consider that codes of practice may not be enforceable. Given that we have legislation already that is not being enforced, we have to question the effectiveness of the delivery of the ambitions that are in this Private Member’s Bill.
I am not going to rehearse the issues raised by other noble Lords about Brenda Grant and Jill Rushton, or the case raised by the noble Lord, Lord Low, about P3 and the care home. We know there are enormous challenges. Personalised end-of-life care, which is a key component, is not being delivered with any consistency across the piece. There is an absence of education and training from the Bill: it is a shame that that is not there. The need to ensure that palliative care is in line with the Mental Capacity Act, as set out in Clause 3 of the 2016 Bill, should be reintroduced into this current version. While the BMA and the Royal College of Physicians have developed excellent guidance on clinically assisted nutrition and hydration, it is clear that not all health and care professionals learn about and implement these guidelines. I have personal experience, not many months ago, of the assisted nutrition and hydration of a relative.
Finally, other noble Lords have addressed the absence of any research element in the Bill. Will the noble Baroness, Lady Finlay, explain that? Robust data is crucial to measuring and analysing the effectiveness of palliative care and considering where improvements could be made. Can the Minister say whether the National Survey of Bereaved People will be revived? It seems even more important now to place data collection and research on advances in end-of-life care on a statutory footing. The issue for the Minister is whether the Government will be able to deliver on the Bill if we put it on the statute book, as I hope we will. Because we are wasting our time if the answer to that is, “not really”, or if there is an equivocation about it.
I end by agreeing passionately with my noble friend Lord Browne about the need to address the inequities and inequalities in palliative care. We need leadership, funding, monitoring, research and drive in order for the Bill to be implemented once we get it on the statute book, and we will certainly support the noble Baroness in doing that.