We do not have much time on the matter. Stakeholders and people with lived care experience would probably have thought that the Government would have done that in advance, given that the Government made a lot of the UNCRC. What specific drafting routes are you looking at to bring the provisions into scope?

Thank you.

Nobody wants to have to go to court to do that—I am not suggesting that—but, ultimately, there is no point having rights if you cannot uphold them. Therefore, is the answer to lodge amendments to the bill on participation, best interests and non-discrimination duties at stage 2?

Thank you. I will quote from the note of the meeting with young people: talking about the bill, the group said that

“there needs to be someone, whether a person or a department, who needs to be culpable if it isn’t delivered.”

Who does the minister think that that is?

Young people told us—and the minister must acknowledge—that local authorities are really struggling to do anything in the margins that is not a statutory responsibility. Is that something that she thinks the bill will take—

I do not doubt that people have welcomed those provisions, but we have also heard significant evidence about what is not there. On that point, what is not there is the commitment to the United Nations Convention on the Rights of the Child in some areas. Many stakeholders have said that the drafting of sections 1 and 2 specifically on aftercare and section 10 on the register of foster carers, for example, amend the Children’s (Scotland) Act 1995. As that is pre-devolution UK legislation, it is outwith the scope of the United Nations Convention on the Rights of the Child (Incorporation) (Scotland) Act 2024. What is the minister’s view on whether the bill needs to be amended to bring the affected sections within scope of the 2024 act?

Thank you. I guess that that will happen as we progress to stage 2.

I have another question. What training and qualifications would you expect the single member on the panel to have?

It will come as no surprise to anyone, nor will it make any front page, that I do not support the legislation. People know that. However, I want to use this opportunity to raise some of the concerns that have been raised by disabled people and others, and to seek to strengthen the bill so that, if the Parliament decides to support it, it contains safeguards. That is what I am seeking to do.

Amendments 219, 221 and 222 make provision about eligibility for assistance but with an expanded definition of “appropriate social care”. Amendment 219 specifies that a person is eligible for assistance under the legislation only if they

“have accessed appropriate social care relevant to their terminal illness”.

In drafting the amendments, I had wanted the provision not to be quite so narrow as “relevant to their terminal illness”, because some people might need social care that falls outwith that, but I was told that the bill was too narrowly drawn to be able to do that. Therefore, I do not think that this is the safest bill as it stands, and I do not think that the amendment will make it safe for disabled people, for example, who access social care on a regular basis—or try to but are unable to get it. However, the amendment is important within the confines and the scope of the legislation.

Amendment 221 specifies that:

“a person is ineligible to be lawfully provided with assistance to end their own life if they have been—

(a) unable to access appropriate social care relevant to their terminal illness, and

(b) on a waiting list for such social care for a continuous period exceeding 6 weeks prior to making a request for assistance in accordance with the provisions of this Act.”

The amendment is important because all the members around this table know the experience of our constituents and how difficult it is for them to access any form of social care and, indeed, because of the points that have just been made about the social care that is required in a palliative care approach. It is very important that we do not create a situation in Scotland where such intolerable circumstances have arisen in someone’s life for them to assess that their quality of life is such that they cannot continue because they have not been able to access a crucial aspect of independent living, which is social care. The amendment is therefore essential.

Amendment 222 sets out a definition of “appropriate social care”, which includes but is not limited to

“care provided in accordance with each risk category of the national eligibility criteria”.

Again, members around the table will be well aware that a number of our constituents are struggling to access any social care that is not just literally life-and-limb care. Most local authorities are operating an eligibility system that says that individuals can access social care only if there is a “substantial risk” to life as a result of their condition. We have to bear in mind that the bar between whether life is tolerable or intolerable cannot just be that an individual is at substantial risk of dying if they do not get social care. That is why we need to consider the broadest possible definition, and it is why I have lodged amendment 224.

I stress to members that, even with my amendments, because of the narrow scope of the bill on assisted suicide we are only talking about people who are eligible in this context. We are not able to discuss or amend the bill to address social care in general, which I think is needed in order to prevent the everyday or internalised ableism that comes with being unable to access social care on a daily basis, and which can build into a feeling that life is intolerable. That also relates to the third grouping of amendments, on coercion. It is the sort of thing that could encourage people to end their lives. The amendments are narrowly drawn, but they are important.

Amendments 227 and 228 make provision about the assessment that the medical practitioner must undertake to ensure that the person has been offered and provided with appropriate advice and support. When many people are diagnosed with an illness, be that illness terminal or otherwise, there is a sense of loss. I was diagnosed with my illness when I was 18 months old, too young to directly experience any sense of loss, but I know that my parents did, and I know that the people who were around my parents felt that sense of loss. We need to ensure that we are creating a society around people that provides them with the level of support required and signposts them to the services that may exist to make their life tolerable, even at the end.

Particularly given the conversation that we have had on the previous grouping, on timescales, my argument remains that, if we do not sort out some of the structures—the systemic inequality that can come from the fact that social care does not exist for many disabled people to allow them to live their life equal to others—we are creating a circumstance where choice is not equal and we are not taking control of our own lives. The state is taking control of our lives and, I can say as a disabled person, it has been doing so for decades, because we rely so much on those systems. My amendments seek to operate within the constraints of the scope of the bill, and I am doing the best that I can, but they will not address some of the issues on coercion.

I also wish to talk briefly about the amendments where we have another opportunity—and I encourage members to take it—to consider including a time limit of six months. I turn to the arguments that have been made previously by many members, including Jeremy Balfour, Daniel Johnson and, more recently, Bob Doris, on the question of premature illness. I say what I am about to say not because I am looking for the tiniest violin in the world, or because I am trying to pull at members’ heartstrings, but because I am trying to set out the real dangers. I therefore encourage committee members to vote for the amendments that include a timescale.

On the definition in the proposed legislation, the policy memorandum says:

“the member decided to focus on whether a registered medical practitioner considers a person to have an advanced and progressive illness”.

I was diagnosed with juvenile idiopathic arthritis when I was 18 months old. I am now 44 years old, and there is not a medical practitioner in this country who would not consider my condition to be “advanced and progressive”. It is not something that I am going to recover from, and that has been proven time and again. I therefore meet those criteria. Yes, as a result of some aspects of my medical condition, it could cause my premature death.

As the bill stands, it has no protections. I do not think that it is intended to cover me—and I am not saying this to make it sound like I think that it is—but the fact is that it does. Without having the six-month time limit, we are opening up the bill to cover any advanced and progressive condition, and I have already made the point about most of the people concerned being disabled people.

I am asking the committee to take the opportunity now to put in the safeguard with some of the amendments. People know that I will still have some concerns, but the six-month time limit is incredibly important. Without it, how do we draw the line between allowing someone like me to choose this option—to take my own life because things have got so intolerable, because my social care has fallen apart, my house is not accessible or I cannot get public transport, or because of all the things that make life very difficult for disabled people—and not? I encourage members to think very carefully, please, about how they vote on the six-month time limit amendments in the group.

I understand the member’s view, but surely it is not an unacceptable delay but a necessary delay to have in place those regulations before the act commences.

Forgive me—I thought that you had reached the end of discussing my amendments.

I am not sure that I fully follow the argument about access to social care not having been offered, or, indeed, the previous argument about palliative care. I do not understand why the requirement would create an additional barrier, unless the member admits that social care and palliative care are in such a poor state in Scotland that the timescales involved would be difficult and the money involved prohibitive.