Terminally Ill Adults (End of Life) Bill

Lord Barber of Ainsdale Excerpts

Friday 12th September 2025 Lords Chamber

[Lord Barber of Ainsdale (Lab)]

My Lords, I have been asked by my long-standing friend and TUC colleague, my noble friend Lord Monks, of Blackley, to contribute to this debate. My noble friend Lord Monks is unable to be present today due to family reasons, and what follow are his remarks, which I am pleased to bring to your Lordships’ attention.

“Some of you will be familiar with Daniel’s story. Daniel, our son, died just over a year ago. His story was featured in an ITV documentary titled ‘A Time to Die’ and in an article in the House magazine. Daniel was 48 years old, a music teacher and a popular live-wire presence in many situations. When he was 26, he was diagnosed with MS, almost certainly primary progressive MS, which by early 2024 had wiped out all his movements except for speech. My wife and I had looked after him since 2016. In 2023, an attack of pneumonia left him unable to move any limb and a concurrent attack of Crohn’s disease caused a blockage in his bowels. He was then placed in palliative care.

Daniel always maintained a cheerful and positive outlook on life despite his enormous disabilities, enduring his suffering with good temper and consideration for others. He did not suffer from depression, but he did decide that he had had enough; he wanted to die.

He had registered with Dignitas in 2022, and had explored the Dutch system of assisted dying, as he had a Dutch passport. Neither option worked for him. So, he did the only thing he could in the absence of any UK system for assisted dying: he starved himself to death by not taking anything by mouth, and a week later died in St Christopher’s Hospice in south London—who, by the way, were marvellous.

So ends Daniel’s story. But I ask those of you who are opposed to assisted dying to face the same choices Daniel and our family faced. Would you have helped him? Would you have put obstacles in his way, or would you have helped to smooth his passing?

This Bill, unfortunately, does not cover Daniel’s type of illness. In my view, that is its major weakness. Nevertheless, in due course, I shall vote for it. It may not ease the end of life for those suffering from neurological illnesses, but it will help many more if Parliament has the guts to give them a choice. And please, my Lords, do not make exercising that choice a hugely bureaucratic Grand National course that is very difficult to navigate. Put the emphasis where it should be—trust people to make the right choice for them. Please pass this Bill when the crucial vote comes”.

I will now speak very briefly for myself. Daniel was a talented, impressive, lovely man, and his loss is still deeply felt by a lot of people. I recognise that there are concerns among some colleagues about whether the safeguards currently built into the Bill leave uncertainties in some minds about possible unintended consequences—issues which we will be debating thoroughly in the Bill’s detailed scrutiny to come. But what is absolutely certain is that, if the Bill is not passed, countless people will continue to suffer painful, horrific, undignified deaths—suffering from which they could be relieved if the Bill passes. That is why, like my noble friend Lord Monks, I strongly support the Bill.