My Lords, I am most grateful to all noble Lords who have given up their Friday to speak in this debate on the Bill. As the Minister said, this touches us all personally. The accounts from the noble Baronesses, Lady Hamwee and Lady O’Loan, in particular brought a lump to the throat of many of us and exemplified the importance of excellence in care for everybody. There is only one chance to get it right. You cannot have a re-run; you cannot have another go.
Many noble Lords, including the noble Viscount, Lord Bridgeman, the noble Baronesses, Lady Brinton and Lady Hollins, and the right reverend Prelate the Bishop of Coventry addressed the fact that the Bill would close a gap. The right reverend Prelate spoke about peace at the end. I reassure him that spiritual care goes way beyond religious boundaries. It is striking how many people profess to have no faith at all but actually seek some kind of solace through faith at the end when they are facing their own existential crisis. As the noble Baroness, Lady O’Loan, pointed out, good care has to be holistic.
The noble Baroness, Lady Meacher, pointed out the opportunity cost of not providing good palliative care. While I understand the amount that the Government are doing, they are not adequately addressing the opportunity costs that are being missed. I am afraid that they are plugging small gaps without having an overall national strategy. Yes, education is going on, but there is still too little, particularly around communication skills.
Several noble Lords asked why the reference to the Mental Capacity Act was not on the face of this Bill. We already have that in legislation, and I was advised that it was repetitive to put it in this legislation because that Act applies to everybody and provides provision for advance care planning and legally binding advance decisions to refuse treatment. Legislation does not in itself make sure that everybody complies. It is there, and it is giving a strong message. It is educating and upskilling professionals who will make sure that things happen properly, particularly around advance care planning.
I wish I could share the Government’s optimism about personal health budgets. I am worried that people who are suddenly in a crisis and in complete turmoil may find it very difficult to access the services that they would want to buy, particularly if those services are just not provided in their area. I am still not convinced that personal health budgets will solve the problem. As the noble Baroness, Lady Brinton, pointed out, A&E is not the place for the predicted death of either children or adults. However, I must pay tribute to A&E departments, which deal with death day in, day out. They do it remarkably well and in the most incredibly difficult circumstances. In Wales we have actually put in place an ambulance service lead on end-of-life care to help upskill all the paramedics and ambulance crews, because they are often the ones who arrive at the scene.
I was asked about research. There is a difficulty with metrics. At the moment we measure death and disability in our national metrics; we do not measure pain and suffering. The Lancet Commission has underlined the importance of developing appropriate metrics against which we can measure what we are doing. Research is absolutely fundamental, and with all the Brexit negotiations I am concerned that funding may become more difficult. Again, I was advised that, to give this Bill a chance of moving forwards, I should take some of the details off the face of the Bill and allow them to go into a code of practice. Of course, I would hope that a code of practice to go along with it would become mandatory.
In my last moments I will address the overwhelming courage of Chris Gard and Connie Yates, who have taken their deeply traumatic experience forward and have wanted to ensure the right to try. They have done it with phenomenal dignity. Along with the noble Baroness, Lady Jolly, I have met them on several occasions. This Bill would be an appropriate place to put the requirement for access to mediation and the right to try, as has already been referred to. Indeed, many people facing the end of life and disease progress are desperate for a right to try and will say, “Even if it does not benefit me, I want to enter a trial of some sort because the results will benefit other people”. People are phenomenally generous when faced with real difficulties themselves.
I am very grateful to those who have highlighted the problem of children, because they have often been overlooked, as the noble Baroness, Lady O’Loan, pointed out. On average, one in 30 children is bereaved of a parent or relative. I remind the House that that means that one in 10 of all schoolchildren has suffered a major bereavement, because there are bereavements beyond those of parents and children. Again, it is in schools and so on that we need to have in-reach from specialist services to upskill teachers to cope, particularly when a whole class is bereaved. That happens, sadly, all too often.
The current bereavement services for children are there in the voluntary sector, and they are overwhelmed. They are coping with only the tip of the iceberg. That is the problem with the voluntary sector. On the investment to which the Minister referred. I remind her that Hospice UK data shows that the voluntary sector is now struggling, is having to cut back and is having to delay expansion and improvements to meet clear need even in the patches where we have voluntary sector hospices, because they are finding it so difficult to bring in the funds to meet the needs that they identify.
So, while all the Government’s initiatives are to be applauded, and many services around the country and many thousands of patients are getting excellent care, we should not rest until we know that it is really available for everybody. We should not accept black holes. I am disappointed by the Government’s response, but I am heartened by the support that I have had from around the House. I beg to move.
Bill read a second time and committed to a Committee of the Whole House.
House adjourned at 12.16 pm.