Terminally Ill Adults (End of Life) Bill

Debate between Lord Falconer of Thoroton and Lord Weir of Ballyholme

Committee stage
Friday 20th March 2026 Lords Chamber

[Baroness Cass (CB)]

Not at all. When I first saw the term “independent advocates” in the Bill, I worried because, in my clinical career as a neurodisability consultant, I have had some very negative experiences of advocates who allegedly were speaking on behalf of people with a range of disabilities but who, we were fairly clear, were not accurately doing so. Some of their behaviours were, frankly, coercive. I know that my noble friend Lady Hollins will have similar experiences and stories to tell.

“Advocate” means different things to different people. Under the Mental Capacity Act, the role is to support people to have capacity, often in the context of the need to make decisions on life-saving treatments. That is clearly not what we are talking about here.

My amendment to Clause 22(4)(b)—which might now be academic, as the clause is to disappear—tries to frame it as people having difficulty accessing information about decisions they need to make for the purposes of requesting assistance and communicating relevant matters. It narrows it down to a communication problem, in the widest sense of the word.

I am slightly concerned that Amendment 548A, from the noble and learned Lord, Lord Falconer, includes “retaining that information” and

“using or weighing that information”

as part of the process. It is very hard, if someone is not retaining information, for anyone to help them to do so; people who are suffering from dementia or memory loss would otherwise be able to be facilitated to remember things, which they cannot possibly be. If somebody does not have capacity, it is hard to see how an independent advocate can facilitate them to have that. That is certainly not what we want them to do, so I am slightly concerned about that line in the new clause.

As for what that independent advocate should do, the noble and learned Lord, Lord Falconer, and I are on the same page, in that it should very much be about facilitating the effective participation of the qualifying person in relation to the provisions of the Act, where their communication needs would otherwise impede such participation. It is about acting to support communication—both understanding and communicating—but not deciding, representing or driving a particular view.

The noble Lord, Lord Sandhurst, who is not able to be here today, and I have put our names to an amendment that seeks that the independent advocate should not be a relative, carer or someone with professional responsibility, for obvious reasons, because, de facto, the individual should be independent and should have had training. Within that training, it is important that they are able to recognise coercion, domestic violence and many of the other issues that we have recurrently discussed in this Committee.

In summary, certainly, my amendments on the role of the independent advocate are subsumed in the new replacement for Clause 22. However, I still have some concerns about who qualifies.

[Lord Weir of Ballyholme (DUP)]

My Lords, I will speak to my Amendment 553B. It is one of a range of amendments I have tabled, which have been put into a number of groups, to try to deal with some of the concerns that have been raised by disabled people and to provide high levels of safeguards. The amendment overlaps with other amendments in this group, as a lot of us are coming from a similar position, irrespective of our broader attitudes towards the Bill as a whole. As such, I am not suggesting that my amendment would cover all aspects.

There is reference in this amendment to one area that we need to get our heads around: how the independent advocate is selected and from where they can be drawn. In the interest of time, I will restrict my remarks purely to my amendment and let others make the case for theirs. My amendment would ensure that there is the availability of an independent disability advocate with “appropriate expertise”—that is as close as I was able to get to defining this—which must be provided by the commissioner for any disabled person within the definition of Section 6 of the Equality Act 2010.

[Lord Falconer of Thoroton (Lab)]

Could the noble Lord indicate which amendment he is talking to?