Terminally Ill Adults (End of Life) Bill

Earl of Effingham Excerpts

Friday 20th March 2026 Lords Chamber

[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.

[Baroness Merron (Lab)]

My Lords, I am most grateful for the debate that we have had today. In keeping my comments limited to amendments on which the Government have major legal, technical or operational workability concerns, I turn first to Amendments 171A and 174A, tabled by the noble Baroness, Lady Nicholson. The duty outlined within these amendments may prove difficult for doctors to discharge as they are ambiguously drafted and use undefined terms such as “religious, cultural or sex-based” barriers. It is also a mandatory duty that does not afford discretion to the doctor to refuse unreasonable requests.

The duty to appoint an advocate conflicts with Clause 22. It is unclear how these proposed advocates would be appointed or trained, or what their role or responsibilities would be. Furthermore, your Lordships’ Committee may note that where a person has religious, cultural or sex-based barriers, the amendment would also require such a person to be provided with an advocate who has training in and experience of relevant safeguarding issues and must be the same sex as the person seeking assistance. Introducing a more extensive mandatory duty for the provision of adjustments, including an advocate, may give rise to workability issues, as the cohort of advocates meeting these criteria could be very limited and may result in a person being delayed or unable to take part in a preliminary discussion.

--- Later in debate ---

[Baroness Lawlor (Con)]

My Lords, my noble friend Lord Moylan and the noble Lord, Lord Carlile, have told us about the uncertainty of the statistical evidence, and indeed the unreliability. That points to a flaw at the heart of the Bill, for which a condition for eligibility is that death must be reasonably expected within six months in consequence of that illness. What then is at the heart of the Bill, if I may develop the point a bit, is a process for managing assisted suicide in consequence of something which is not at all certain.

I have to say that, in the areas we know about where the state has a process for providing a service, particularly in education, we see that a state service is not geared to the individual case. One of the points that my noble friend Lord Moylan explained was the individual case, and most noble Lords agree with this. How are we going to have a state service, as is proposed by the sponsor’s Bill, for a general cohort, and not the specific individual case, that is reliable for individuals? We see in education and other areas that exceptions continue to have to be made—for instance, for children with special educational needs, particularly autistic children. These are exceptional cases which do not fit the general application of a state service.

[The Earl of Effingham (Con)]

My Lords, it is a hallmark of the noble Lord, Lord Moylan, to make valuable contributions to debates in your Lordships’ House, and today is no different. The noble Lord is living proof that an average, median or mean life expectancy is incredibly difficult to predict, as is the third standard deviation of the bell curve, which he rightly referenced.

I believe that the noble Baroness, Lady Finlay, said that she never gives prognoses due to the complexity of the answer. Other noble Lords touched on the way a prognosis is calculated in previous debates. Taking such a monumental decision of life or death based on a medical prognosis derived from a median life expectancy raises questions. That said, it is difficult to see what other measure should be used as the test for eligibility.