Seòmar agus comataidhean

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.

Does the Government think that the timescale should be different if there are welfare concerns with regard to informing parents or carers?

I presume that it means situations in which informing a parent or carer might result in the child being blamed or the parent overreacting, for example. Does the Government have any concerns about that?

That is helpful; thank you.

We have heard a lot from parents about circumstances when they have not been informed about the use of restraint. As you heard earlier, the parents can hear about an incident from the young person or a third person, or the information comes to light in some other way. Who is accountable when that happens?

The other thing that has been put to us was that the decision to restructure the university into faculties was taken without the agreement of the senate and without discussion and agreement with the campus trade unions and student association representatives. Is that a fair representation of what happened?

That is fair enough. What sort of oversight does the cabinet secretary hope to have on the extent to which the conditions that are attached to the money are adhered to?

I understand that, but, regardless of what they are, are you—

At all? That is not what we have been told.

Can you tell us anything just now about the sorts of conditions that will be attached to the funding? In response to my colleague Willie Rennie, the cabinet secretary made the point that, if money is flowing out from the Government to the institution, one might expect conditions to be attached to it. Can you indicate what any of those conditions might be?

I have heard this morning that the Government is quite keen to gather data and that it recognises that there are some data gaps, which is an important point. I hope that the bill provides an opportunity to address some of that.

Where restraint is used in care settings, incidents are reported externally and can trigger support and challenge, which speaks to the accountability piece that I have just spoken about. In education, that level of live external scrutiny does not necessarily exist. Does the Government believe that schools should move closer to the care model, where incidents are not just logged locally but are actively monitored or challenged?