Terminally Ill Adults (End of Life) Bill

Baroness Grey-Thompson Excerpts

Friday 20th March 2026 Lords Chamber

As the Bill has been progressing, I am more convinced than ever that the NHS is not a suitable place for assisted dying to take place.

[Baroness Grey-Thompson (CB)]

My Lords, I have Amendments 172, 322, 322A and 406 in this group, which address the requirements of accessibility, BSL and Braille.

In speaking to her amendments, the noble Baroness, Lady Fraser of Craigmaddie, raised a number of issues. While I tabled all my amendments before the start of Committee, her speech showed some of the areas where there is still some cause for concern—certainly, around things such as programmable text and the way that it is used.

My noble friend Lady Campbell of Surbiton is not able to be in her place today, but she raised the issues faced by Lucinda Ritchie, who, as a woman who used communication aids, had to go to a care home. The nurses were not able to set up the communication aids, and she, in essence, became voiceless.

As the debate today has highlighted—in the words of the noble Baroness, Lady Nicholson—if this Chamber cannot provide reasonable adjustments for Members, that reflects a bigger problem that exists outside in terms of whether people can really understand what is going on.

The Bill takes its foundation from the Mental Capacity Act. We have to get to grips with whether someone can understand, retain and use information. I am against the process of assisted suicide being called treatment. If we cannot communicate with people properly, the individual might be confused about what they are being told.

In New Zealand, as has already been raised, people have to ring a phone number. Dr Jeanne Snelling said that it is completely inappropriate. A deaf person cannot ring a phone number, so they might not be able to access the service that they want.

I have amendments on reporting mechanisms, but I am keen to understand what issues also might be highlighted from these discussions and whether one impairment group is disproportionately affected in accessing this service. That is why Amendment 406 says that we need to record when people’s accessibility needs are not met. Clause 39(1)(d) gives a power to the Secretary of State to introduce codes. I hope that the breadth and depth of debate in this group will inform that.

The National Down Syndrome Policy Group, as already mentioned, said that it is essential that people are able to understand what is going on, but the Easyread document from the NHS on the Mental Capacity Act is 28 pages long and is complicated. It is difficult to get true consent when we know that people with Down syndrome are already suggestible and potentially eager to please others. We know that people with learning disabilities and deaf people already have lower health outcomes than others. There was the tragic case of Adrian Poulton, a man with Down syndrome and dementia, who starved to death in a British hospital because the doctors put “nil by mouth” above his bed. He was not able to communicate, and the staff were not listening when he asked for food. They just looked at the “nil by mouth” and assumed that he did not know what he was talking about.

The equality impact assessment has identified that there are some areas of concern. It should be noted, too, that British Sign Language is not a direct translation of English. We missed a trick, when we were doing that legislation, in not going into greater depth with it, but we have to be clear about how we provide appropriate translation.

The noble Baroness, Lady Fraser, raised speaking difficulties. I met someone for the first time recently. We had no issues communicating at all. It was only after about 10 minutes that they mentioned to me that they had had a stroke, and they felt that they were struggling to speak and find the right words. You could easily make an assumption that someone’s communication skills are very good, when indeed they are not.

One of the issues is that we do not have enough people who are able to use British Sign Language. I accept that Makaton is not a language and should in no way be confused with BSL, but about 100,000 people use it as a communication aid. There are 1,200 licensed tutors, and they train about 20,000 people annually. I should have probably made it clear in the amendment that Makaton and BSL are not interchangeable. In a different context, we certainly should not replace Québécois with French, or Swiss German with German.

We talked earlier about Wales. I am Welsh, and I think it is important that we discuss these issues. I grew up in a semi-fluent household, and my mother spoke very colloquial Welsh. Depending on who speaks to me, I can understand quite a lot, but what one takes from a conversation can be very different. That is why I am concerned about this group of amendments.

My noble friend Lady O’Loan raised the issue of translation. In 2017, I did a piece of work for the then Government on duty of care in sport, and the word “safeguarding” is not translatable into other languages. Even where it is translatable, its meaning can be very different, and we need to be concerned by that.

A survey by the Royal National Institute for Deaf People found that 77% of BSL users had difficulty communicating with hospital staff, and that 33% left consultations with their family doctor feeling unsure about instructions or taking the correct doses of medication. We have seen in the media that a deaf man was wrongly told that he had HIV after the hospital failed to provide an interpreter. There is the case of Derlyn Roberts, an American woman who famously pretended to be a sign language interpreter at a high-profile news conference in Tampa, Florida, where the police were announcing the arrest of a serial killer. She could not sign at all, and experts described her interpretation as gibberish. Members of the deaf community were very upset, and the deaf mother of one of the victims of the serial killer was present and was relying on the interpretation. Just think how distressing that is. However, there are good examples. At the St Helena Hospice, people who prefer to use BSL can communicate with nurses by clicking the BSL live button. Deaf patients or visitors can choose to use that service, so it is possible to provide appropriate translation.

We should not presume that the person with the communication barrier is the patient. It might be that the doctor has some challenges in translating, understanding or, indeed, communicating. I am delighted to learn that doctors are now getting much better training in how to communicate with patients, but this could be improved. The GMC guidance says that steps must be taken to meet the needs of individuals, but each stage of the process relies on an open choice. If discussions are not accessible because of a language or communication barrier, any perceived safeguards in the Bill are simply worthless. The noble and learned Lord has said many times that everyone should have equal access to the process, but for deaf or disabled people and for those who have a combination of impairments, it is really important that they are given genuinely equal access to the process and that they understand every step of the pathway.

[The Earl of Effingham (Con)]

My Lords, before I speak to the substance of the amendments in this group, I pay tribute to the noble Baronesses, Lady Nicholson, Lady Berridge, Lady Fraser of Craigmaddie, Lady Grey-Thompson, Lady Hollins and Lady O’Loan, and the right reverend Prelate the Bishop of Newcastle. They have all stood up for a particularly vulnerable group of people, and they are absolutely right to do so. I am sure that the noble and learned Lord, Lord Falconer, is listening most carefully to their arguments.

Individuals with speech, language and hearing difficulties are particularly vulnerable, and it is imperative that they fully understand the process, their rights and the terms of the Bill before they can access the provisions made within it. My noble friend Lord Blencathra said that we really need to know that an individual understands what they are doing, and the noble Baroness, Lady O’Loan, used the phrase “crystal clear”. They are both absolutely right.

Surely how society cares for the most vulnerable of its citizens is an unmovable benchmark. Society must protect people with communication difficulties. The noble Baroness, Lady Berridge, specifically questioned the Government, and His Majesty’s Loyal Opposition believe that it is fair and reasonable to ask the Minister what specific work officials and Ministers have undertaken to establish the core risks posed by the Bill to those with hearing, speech and language impediments. In the view of His Majesty’s Government, how effective are the safeguards currently in place? Can the Bill be improved from a neutral perspective of workability to ensure that no one who faces the challenges we have discussed in this group ends their life without being given the obvious support that they need to fully understand the life-changing decision on which they are embarking?

As the noble Lord, Lord Winston, referenced in the previous group, during the course of the Bill, noble Lords have debated detailed provisions and addressed complex moral issues with a laser focus. However, the question at hand is not a complex one. Those who are not able to understand the situation without proper support must be provided that support if they are to take the decision to end their life. Surely that is non-negotiable.

The noble Lord, Lord Shinkwin, said that we have to think differently and challenged the noble and learned Lord, Lord Falconer, to lead by example. The right reverend Prelate the Bishop of Southwark took the words out of my mouth when he said that he remains hopeful that the noble and learned Lord will agree with this line of thought and commit to engaging collaboratively with all noble Lords whose amendments in this group aim to implement the right and appropriate protections for this vulnerable body of individuals.

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Moved by

[Baroness Grey-Thompson]

168: Clause 5, page 3, line 15, at end insert “, at which an independent advocate must be present.”

[Baroness Grey-Thompson (CB)]

My Lords, in moving Amendment 168, I will speak to a number of amendments in this group. The lunchtime break was very useful in being able to reflect on the discussion of the previous group and think about where the two areas may interact.

Clause 22 of the Bill introduces a new role of independent advocate for people with

“a learning disability, …a mental disorder under section 1 of the Mental Health Act 1983, or … autism”,

or anyone who

“may experience substantial difficulty in understanding the processes or information”

given. My concern with this clause is that it leaves almost all vital detail on independent advocates to regulations set by the Secretary of State.

The Bill sponsor’s new clauses on independent advocates were published on 29 January, and the noble and learned Lord says that these are intended to respond to the comments from the Delegated Powers and Regulatory Reform Committee that the obligation to appoint independent advocates should be on the face of the Bill. Although the new clauses from the noble and learned Lord, Lord Falconer, do put more detail in the Bill, I believe that they weaken the provision of independent advocacy for vulnerable people. The new provisions can be optional or waived, and the advocate need not be present. To have an advocate is simply to instruct one.

I believe that the new clauses fail to address the key parts of the Delegated Powers and Regulatory Reform Committee feedback. The obligation to appoint independent advocates must be on the face of the Bill and must also be scrutinised by Parliament. The subsection that states that regulations may in particular provide for

“obligations on persons performing functions on this Act to ensure the presence of an independent advocate for a qualifying person”

is not replicated in the noble and learned Lord’s new clause.

The noble and learned Lord’s arguments on 13 March are, I believed, contradicted by his amendments. On 13 March, the noble and learned Lord said that independent advocates were a “rock-bottom protection” for the vulnerable, but I believe that the amendments would shift to a system that is more discretionary and, therefore, weaker. They would also put an awful lot of pressure on disabled or vulnerable people—issues that were so powerfully raised by the noble Baroness, Lady Monckton.

My amendment 168 would require that anybody providing a “relevant activity” under the Bill—the new subsection (8) defines relevant activities as including “conducting a preliminary discussion”—must not carry out the relevant activity unless the person seeking assistance has an independent advocate. The amendment would allow a qualifying person to refuse or waive their right to an independent advocate and would permit a preliminary discussion to proceed without one if the patient states that they are content to do so.

Clause 22 of the Bill currently mandates that the Secretary of State must set out obligations. I cannot reiterate enough how many concerns I have about that. We have previously debated the crossover between a terminal condition and somebody who is also disabled. For a vulnerable person, it feels like it is just enough to say that a conversation has been had. I do not think that there is enough depth or protection in what we are looking at here, and there are many unanswered questions.

We have discussed in other areas who will make the appointment, what they will do, what training they will have, and how they will engage with families. Will it be a person? Could it just be a leaflet? How does the noble and learned Lord envisage that this will work in reality? We have debated online discussions. It may be that the person—the advocate—is just there as an online presence.

Relating to the previous group of amendments that we have debated, how will the independent advocate be explained to the individual? This is really important. Will there be flexibility to change the advocate if the person seeking assisted suicide does not get along with them and does not form a connection? I am sure that we will be told that it will be for secondary legislation, but there are important questions such as whether they will be paid. Most positions such as this are subject to minimum wage. How can we also ensure that they are free from bias? I am really concerned about this optionality. If a person does not understand what an independent advocate is, how do they know whether they really need one?

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[Lord Falconer of Thoroton (Lab)]

What I understand the noble Baroness to be saying is that a doctor who will not conduct the conversation because, for example, he or she is against it on conscience grounds, might refer somebody to what she describes as a pro-assisted dying mafia. First, that seems to me to be unlikely. Secondly, the Bill cannot prevent people talking to anybody they like about assisted dying. We have free speech in this country. Thirdly, the Bill provides that before you can have an assisted death, you have to have a Clause 5 conversation, which requires the doctor—legally—to put every option before you. What is being proposed is a network of neutral advisers to ensure that before you get to the second Clause 5 doctor, you have not talked to somebody who might be pro it, who you are not prevented from talking to anyway by the law. No, I am not in favour of it.

[Baroness Grey-Thompson (CB)]

I thank all noble Lords for the debate this afternoon and the noble and learned Lord for explaining his amendments. I think the answer to the problem that we are trying to solve is somewhere in the middle of this group of amendments. I still have a level of concern about whether an individual knows what they are saying yes or no to with the independent advocate and their understanding of the information that they are given. I would be very concerned if it turned into some sort of tick-box compliance in terms of someone’s understanding.

I thank the noble Baroness for her confirmation that, under the Equality Act, someone with cancer or leukaemia would count as being disabled. It was not my original intention for everybody who wanted to enter this process to have somebody independent alongside them.

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[Baroness Hayter of Kentish Town (Lab)]

I therefore understand that the noble Baroness does not mean this for everybody, but only for people in a restricted category.

[Baroness Grey-Thompson (CB)]

In the context of this amendment, I meant it in a restricted category. I did not want to start withdrawing amendments and retabling them, because, in Committee, I think it is useful to explore such issues. I am not sure for anyone reading the Marshalled List on the outside—for any who do—that it is terribly helpful to see that amendments have been withdrawn. It has been a really useful discussion to have in Committee.

I thank my noble friend Lady Cass for raising the issue of remembering information, and I thank my noble friend Lady Finlay of Llandaff for bringing in a sporting analogy. I was thinking about the work that I do outside this Bill, and over the years I have done a lot of work on concussion protocols. In the early years, when concussion protocols in sport were brought in to help make sure that people did not carry on playing rugby or other sports while concussed, there was a lot of coaching going on because the same questions were asked through the concussion protocols: do you know what day it is?; do you know who the monarch is? The answers were learned. In that moment, people might not have been able to answer the question but they had learned the answers. The point raised by my noble friend Lady Cass is something else that we need to think clearly about.

Another area I work in is anti-doping in sports. We now have a new system. It used to be that the governing body of the sport would take tests from the athletes and then, if there was an adverse finding, do the policing on that. An independent system, UK Anti-Doping, was purposely developed so that the governing body could, if there was an adverse finding at the first or second stage, guide an athlete through really complex processes. This is just anti-doping in sport, and the athletes are educated about it at least every year, but if even something such as anti-doping in sport is hard to understand—between what is written in a document and what happens when you are in the process—assisted suicide probably deserves a bit more.

I am not convinced by the amendment tabled by the noble and learned Lord. I still do not think it provides enough of a safeguard. I would be interested in being able to tie up what the noble and learned Lord said in the Chamber and then coming back with some stronger amendments.

This is in the context that statutory advocacy is generally of quite poor quality. Less than 15% of people get advocates in other areas when they need them. If you look at advocacy in general, it is worrying that there is no central data collection for advocacy under the Mental Capacity Act. In 2019, a freedom of information request which looked at this area found that 51 out of 139 local authorities did not collect data on IMCA support. There is still limited data on Care Act advocacy. The CQC said that, for Care Act safeguarding, where there is a duty to appoint an independent advocate, in England in 2025 some 83.38% of those lacking capacity had an advocate appointed. To pick some random counties, in Derbyshire, the figure was 14.38%; in County Durham, it was 32.64%; and in Liverpool, it was 53%. Where there is a duty to appoint one and the figures are so low, I wonder whether the take-up in this space would be very limited.

I still do not think that we have the right balance between accessing the process and safeguarding, but at this stage I beg leave to withdraw my amendment.

Amendment 168 withdrawn.