Terminally Ill Adults (End of Life) Bill

Baroness Fraser of Craigmaddie Excerpts

Friday 20th March 2026 Lords Chamber

Moved by

[Baroness Fraser of Craigmaddie]

167: Clause 5, page 3, line 12, leave out “seek assistance to”

[Baroness Fraser of Craigmaddie (Con)]

My Lords, I want to bring your Lordships back from Wales to the speech, language and communication issues that affect everybody equally right across the United Kingdom. My amendments in this group, Amendments 167 and 546, seek to ensure that people who have serious speech, language and communication issues have an element of protection in the Bill and that they are supported in accordance with best practice. I remind noble Lords of my interest as chief executive of Cerebral Palsy Scotland. I have drawn on my organisation’s experience of supporting people with serious communication issues to inform my remarks.

Amendment 167 is a probing amendment designed to explore the specifics of what is meant by seeking assistance. This is not about the requirement to self-administer, which, if we get to it, will be explored later in Clause 25. This section is to do with the preliminary conversation. Amendment 546 would simply add those with communication and speech difficulties to the list of those who may be provided with an independent advocate in Clause 22.

The Bill currently sets out in Clause 5(4):

“If a registered medical practitioner conducts such a preliminary discussion with a person, the practitioner must first ensure the provision of adjustments for language and literacy barriers, including the use of interpreters”.


I have taken that to cover those for whom English is not their first language, but I am not convinced that it covers a situation where someone has to communicate using augmentative and alternative communication, known as AAC. I shall me explain why I have specific concerns in this area.

This population can be divided into those who have moved on to AAC because of disease progression—for example, those with neurological conditions such as MND or Parkinson’s—and those who have always required assisted communication, those with complex cerebral palsy or severe autism. This population may be deemed to understand English, but they have never been able to speak, so AAC is their de facto first language. Experience illustrates time and again how those who experience communication difficulties, especially those for whom AAC is their first language, struggle to deal with difficult conversations. At Cerebral Palsy Scotland, we work with people with very complex needs, including those with learning disabilities, who need symbols to support understanding and communication. This group will express themselves in a way that is not typical, as they will be restricted to a limited vocabulary.

There are tools—Amendment 172 from the noble Baroness, Lady Grey-Thompson, specifies Makaton—but there are others, such as Talking Mats, that are designed to support big decision-making, and these are currently used to understand a person’s desire to, say, live independently or express what type of care they wish to receive. However, these methods of communication need to be facilitated by a professional who will suggest options: option A or option B. The individual themselves does not have free choice of the words that they can select. Now put that individual in a context where they have been diagnosed with a terminal disease and they meet all the criteria of the Bill yet they might not be privy to the right vocabulary or the right specialist professional support. How can we be confident that they have fully understood the process and that it is their free and settled choice to die?

Much of our communication with people who have complex communication needs is co-constructed. Tools such as Talking Mats or Makaton rely on a professional making the initial choices and making assumptions. How many times have we seen carers or family members talk for a person because they know them best and they know what they are trying to say? Again, I ask: in these situations, how can we be confident that this is truly the settled opinion of the person who is being talked over? Amendments 322, 322A and 406 from the noble Baroness, Lady Grey-Thompson, speak about communication in accordance with a person’s needs and wishes, providing translation in a format of the person’s choice and recording, if communication needs have been identified, how they have been met. I support all these amendments.

People who do not have a learning disability and may come to use AAC because of their disease progression —or, like many adults with cerebral palsy whom we support, they may be literate and use devices that use typing and predictive text—may have the vocabulary to make their views known, but only if they are given the time, space and support to do so. I do not know if any noble Lords have ever tried to communicate through an AAC device. I have, and often you have to scan through a word at a time, picking up which row you choose, and then you go down and choose the word. It requires incredible skill and concentration, and it is exhausting. You have to really concentrate because otherwise your eyes go off and you do not say what you want to. It is essential to allow sufficient time within the appointment to retrieve longer messages, and fatigue and frustration are common.

--- Later in debate ---

[Lord Moore of Etchingham (Non-Afl)]

My Lords, I was deeply interested by the remarks of the noble Baroness, Lady Fraser, and her amendment. I would like to confirm from personal experience that a young man very well known to me can barely speak at all. He has therefore been effectively silent all of his life. Through a system called Spelling to Communicate, it turns out that he has a vast range of knowledge and high conceptual skills, which have only been discovered very late. He is now communicating by these means, but he can only communicate, at this stage at least, through his mother. I very much support what the noble Baroness has said, but—forgive me if I have missed something—I do not quite understand how the wording of her amendment will achieve the effect she intends.

[Baroness Fraser of Craigmaddie (Con)]

I thank the noble Lord. By probing the words “seek assistance”, I am trying to explore what assistance is provided. The noble Lord is quite right in the example of his friend. There are people who cognitively can absolutely understand what is going on. Therefore, in the context of this Bill, they would understand the assisted dying process. But they would need help with the tools by which to communicate their will, and the time and space and sometimes the vocabulary to do that. I note that, in the noble Lord’s example, his friend has only recently come to it. An issue is understanding what the right thing is for some of these people. He also said he can, at the moment, communicate only through his mother. That is my other fear. Far too often with this population, people speak for them because they know them best. I hope that clarifies my intentions.

[The Lord Bishop of Southwark]

My Lords, I support the amendments in this group, particularly Amendment 171 in the names of the noble Baronesses, Lady Nicholson of Winterbourne and Lady O’Loan.

Clause 5, as we have heard, introduces a key element in the infrastructure of assisted dying in this Bill by providing what is intended to be a safe, but not mandatory, introduction to the subject of death with the assistance of another human being. For proponents of the Bill, the advantages of such an introduction are obvious. In their minds, it will remove a good deal of unnecessary distress on the part of those who wish to proceed with such an option and on the part of those who do not. However, as we have heard from those of us who have long experience of pastoral encounters, the experience is likely to be rife with pitfalls.

This amendment and the one that follows it, about which I shall say a little and leave it to others to say more, is designed to correct some very obvious impediments to mutual understanding. A good deal of communication is picked up visually. Visual impairment requires an extra dimension when communicating. My twin brother was born with a severe hearing impairment, so I speak with lifelong experience of what it is to communicate thoughts, directions, information and feelings appropriately to someone who has a hearing impairment.

Finally and briefly, for I understand that the right reverend Prelate the Bishop of Newcastle wishes to say more, I also commend Amendment 171A. My experience of more than 40 years of ordained ministry is that there are those who purport to represent a religious or cultural identity and do so for less than an individual’s best interests. That may cut both ways in this debate.

I hope that the noble and learned Lord, Lord Falconer, will look favourably on these amendments, which are designed to provide assistance to women who may face coercion. Should the Bill become law, it will make the vulnerable more vulnerable as it currently stands. That is why so very many amendments, including this one, are so vital, although I continue to fear that assisted dying itself would make the vulnerable more vulnerable.

--- Later in debate ---

[Lord Falconer of Thoroton (Lab)]

I am not in favour of a mandatory bar on any young person. I expect it to be dealt with in a code of practice. I agree that unless there is a mandatory provision in the Bill it will not be effective, but I am not in favour of that mandatory ban.

[Baroness Fraser of Craigmaddie (Con)]

My Lords, I thank everybody who spoke in the debate. I am very conscious that I stand between noble Lords and their lunch, so I will try to sum up quickly. I agree with the noble and learned Lord that we are all trying to ensure the same thing. I am disappointed by his response pointing to his amendments around the right to an independent advocate, because that is only one small part. My Amendment 167 was really about seeking assistance in the preliminary conversation. The reason for that is understanding that, as my noble friend Lord Shinkwin so eloquently said, it is about thinking about the process from the perspective of the person with the communication issues.

Any of us might find ourselves at any moment in our life, through illness, accident or frailty, in this position. Turning the tables and thinking about how we would feel going through this process and the preliminary conversations is really important.

I want to just quickly give examples of why words really matter and why it is not just about independent advocates. We have the next group after lunch on that. In Scotland we had the “right to speak” legislation that went through after the campaigning of Gordon Aikman, and the Scottish Government put in the right for people to access communication aids and support. The problem in practice is that many people have been able to access aids but not the support; that was the essence of my probing.

The noble Baroness, Lady Hollins, mentioned training. Yes, people are trained to support, and independent advocates might be in that camp, but it tends to be very basic. If you consult the Royal College of Speech and Language Therapists, it is extremely concerned about the number of professional people available to support this group of people. Clarity is vital all the way through the process.

I am conscious as time goes on that I cannot mention everybody. The point is that language being either mediated by someone else, culturally shaped or indirect can cause an issue at any point in the process, and therefore we must have support for people with severe communication issues and other issues. I pay tribute to my noble friend Lady Nicholson. We must surely do all we can to ensure that the decision of a person to end their own life is truly that of the individual and not simply a miscommunication.

[Baroness Nicholson of Winterbourne (Con)]

I add my thanks to the noble and learned Lord, Lord Falconer, for his comments. I look forward immensely to the meeting with him. I also point out that his colleague on the Front Bench stood up and said something about me and, of course, I could not hear it. Hearing is a very difficult thing to ignore. I sincerely hope that the amendments will cover that.

[Baroness Fraser of Craigmaddie (Con)]

I beg leave to withdraw my amendment.

Amendment 167 withdrawn.