Terminally Ill Adults (End of Life) Bill

Lord McCrea of Magherafelt and Cookstown Excerpts

Friday 20th March 2026 Lords Chamber

[Baroness Coffey (Con)]

My Lords, I recognise that the noble and learned Lord, Lord Falconer of Thoroton, has tabled Amendment 548A, which completely leaves out Clause 22. It could be useful to hear from him early in this group, recognising that he has not answered questions on advocates in the past because of the amendment he has tabled.

[Lord McCrea of Magherafelt and Cookstown (DUP)]

My Lords, I have tabled Amendments 540B and 544A in this group. My intention with these amendments is to probe how we have ended up with the list of eligibility criteria for qualifying for an independent advocate contained in Clause 22(4). These provide that a person may qualify for an independent advocate if they have a mental disorder, including a learning disability, if they are autistic or have a substantial difficulty in understanding or communicating information. Clearly, there are obvious difficulties with an approach which attempts to list certain conditions but not others. Why, for example, is autism explicitly mentioned in the Bill when Down syndrome is not?

I see that the noble and learned Lord, the sponsor, has adjusted his approach to the eligibility criteria in his new Amendment 548A on the subject, presumably to avoid this problem and any unnecessary duplication. The criteria in that amendment centres much more on the “substantial difficulty” test extracted from the Care Act 2014. It would be helpful for the noble and learned Lord, the sponsor, to set out whether he anticipates that this new test will provide for a wider range of people to access an independent advocate. It may also be helpful and useful to get the Minister’s assessment on the same point, and on how that may affect the questions of resourcing and costing set out in the impact assessment. Currently, the impact assessment suggests that 2.5% of people may be eligible for an independent advocate. This figure has been arrived at by

“Estimating the proportion of people with a learning disability, mental disorder, and/or autism”,


though it admits that doing so is “complex”.

Statutory guidance on the use of the same “substantial difficulty” test under the Care Act 2014 seems to suggest that the net could be much wider than just those groups. It states that

“a person who is near the end of their life and appears disengaged from involvement and decision-making”

may be eligible for an independent advocate. That seems to encompass many more people than under this assisted suicide Bill. If the effects of terminal illnesses—of which we have heard a wide range over the last number of weeks, such as depression and fluctuating capacity—are likely to make us eligible for an independent advocate, it seems that the Government’s 2.5% figure is far of the mark. Equally, if I am wrong and the list of people who can access independent advocate support is narrowly defined then this would surely give rise to a human rights challenge under Article 14 of the European Convention on Human Rights, against non-discrimination. I therefore ask the Minister: how have the Government satisfied themselves that no one else will need independent advocate support to engage the provisions of the Bill?

Ultimately, for these reasons and for the ease of administration, we are likely to end up in a position where every applicant is treated as eligible for independent advocate support. After all, anyone with six months to live is deemed to have a disability under the definition in the Equality Act 2010. Given that this is where we could end up, it would be helpful if the Minister could set out exactly what the implications would be, including the resourcing challenges for already overstretched advocacy services. Is the Minister satisfied with the sponsor’s apparent solution to the costing and resourcing problem, which is to make the new advocacy role in Amendment 548A one that people have to opt in to, so that it is no longer mandatory and easily waivable?

I have some sympathy with the position of Dr Sarah Hughes, chief executive of the mental health charity Mind, who told this House’s Select Committee on the Bill:

“I think we would also say that individuals need advocates. While there is a panel and there will be various assessments, the person really does need an independent advocate at every point to be able to understand the information that they are being given, the conversations that they are having and so on”.


She is right to have this concern. We are not talking about a trivial decision, such as buying a cup of coffee; we are talking about a life and death decision, and one that is often dressed up in euphemistic language that can be misleading even to those of us who do not have additional vulnerabilities.

It is vital that people truly understand the nature, gravity and risks of any decision on this matter, but I am seriously concerned that, in practice, that is not where we will end up, particularly if we need enough independent advocates for each applicant. Where will these advocates come from? The Government’s impact assessment hopes that there will be social workers employed by the NHS, but job adverts for independent advocacy often have no training, qualification or experience requirement.

The 2023 review of advocacy found serious deficits in advocacy skill sets. It found that there was

“a lack of basic understanding of autism and learning disabilities”

and

“a lack of practical communication skills, particularly when working with a person who uses non-verbal or augmented communication”.

The same review found:

“Only one third of family carers described the advocate supporting their loved one as ‘skilled and experienced’”.


What assurance do we have that things will be different here? Such training is crucial, particularly considering that we are talking about highly susceptible individuals.

Again, I refer to an example from the evidence presented to the Select Committee. Ken Ross OBE, founding officer of the National Down Syndrome Policy Group, shared his worry at the lack of specific training on Down syndrome for health and education professions. He pointed out that the

“very complex and unique speech and communication profile”

that people with Down syndrome can have makes them “highly suggestible”, particularly to those perceived to be in a “position of authority”. Without training, how would an independent advocate appreciate this and mitigate for it?

Further, how will we ensure that resourcing independent advocates for this purpose does not draw away from the much-needed functions under the Care Act, the Mental Capacity Act or the Mental Health Act? Data suggests that, in some local authorities, fewer than 15% of people get an advocate when they should get one. Clearly, the system is already broken. Are we going to risk breaking it further and take away the little support that is designed to help people to live?

Finally, I am concerned at the risk that advocates become not advocates for the patient but advocates for assisted suicide. No doubt the noble and learned Lord, Lord Falconer, will tell us that this is not at all what happens with independent advocates, but I remind him that in connection to other independent advocacy services, NICE has said that

“non-compliance with legal duties is common”.

In other Acts that establish independent advocacy services, their specific duties and functions are set out in statute—something the sponsor has not done either in the Bill before us or in his new Amendment 548A. Without the detail—such as whether an independent advocate has a duty to help the patient understand non-fatal options—we cannot be sure exactly of the direction that such advocacy would take. Therefore, I believe that my amendments are worthy of consideration.