“I Came Into Politics To Make A Difference”

Kim Leadbeater (Photography by Louise Haywood-Schiefer)

12 min read23 November

“It’s fair to say I have had quite a unique journey into politics. Maybe, unlike some other MPs, I didn’t have a specific idea of what I would do if ever I got the opportunity to change the law.

“I came into politics to make a difference. I didn’t come in here to build a big, fancy career or to get my name in lights.”

Kim Leadbeater, 48, was a personal trainer and lecturer in physical health when her sister, the MP Jo Cox, was murdered. Five years later, after setting up the Jo Cox Foundation, Leadbeater won a by-election in her sister’s seat.

Now, she has been drawn first in the Private Members’ Bill ballot and put herself at the centre of an intense, highly charged debate: whether the terminally ill have the right to a physician-assisted death.

Asked how she decided to legislate on this weighty and complex topic, the Labour MP for Spen Valley continues: “I always knew where I stood on the issue of assisted dying, but I probably didn’t fully appreciate how bad things are at the moment in terms of the current legal situation.

“Once I started to speak to campaign groups and individuals about the limitations of the law when it comes to people’s choices at the end of life, I realised there’s a very clear problem that needs to be fixed.”

Leadbeater has met with terminally ill people, their families, palliative care specialists, disability rights activists, lawyers, judges, doctors, and the hospice sector to come up with what she describes as an assisted dying bill with “the strictest safeguards of any legislation anywhere in the world”.

“It’s been an extremely busy process, and it has been very emotional, because I’m spending probably 90 per cent of my time talking about death. That can be very emotionally draining. I’m hearing really harrowing stories from families who have lost loved ones under really traumatic circumstances, and that’s been really hard.

“There’s the emotional side of the issue, and then there is the workload. The workload has been huge. But that has been my own doing because I’m a very 100 per cent person.”

She raises the experience of former Labour MP Paul Blomfield, who became an advocate for a change in the law after his father was diagnosed with inoperable lung cancer and killed himself. “Paul is traumatised by that,” she says.

I have found it disappointing that some members of the Cabinet have spoken out very vocally on the issue

Leadbeater is frustrated by those Cabinet members – particularly Health Secretary Wes Streeting – who have publicly expressed opposition to her Terminally Ill Adults (End of Life) Bill despite Cabinet Secretary Simon Case’s advice that they should not join the public debate.

“The important thing is that this debate happens, and everybody is absolutely entitled to their different views on the issue. But I have found it disappointing that some members of the Cabinet have spoken out very vocally on the issue, and others have done as instructed and not expressed their views. So, I’ve found that quite disappointing and quite upsetting.”

(After our interview, Work and Pensions Secretary Liz Kendall joins the conversation too – in support of Leadbeater’s bill. Lisa Nandy and Ed Miliband are among others who have openly backed it.)

Streeting believes palliative care is not good enough in this country for it to be a fair fight between that option and an assisted death. He also makes the point that passing her bill would have “resource implications” in the context of a struggling NHS.

Leadbeater accepts neither argument. “Do we need to have important conversations about palliative care, about the NHS, about disability rights, about other things as well? Of course we do, and let’s have those conversations,” she says.

“But at the heart of this debate is looking at the options that are available to terminally ill people who want, and I believe deserve, to have choice at the end of their lives… And no matter how good palliative care is, for some people, it cannot meet their needs.”

It is the Health Secretary who would need to act if Leadbeater’s bill passes: there is a commencement order in it that compels the Government to implement the change after two years, and she sees it being provided by the NHS.

“There are different models around the world, but my view is that this would fit within the existing health system. And remember, these are not new patients.

“These are existing patients who are already having treatment, so this would be part of that end-of-life holistic conversation. We’re not suddenly going to have the NHS swamped by lots of new people, because they’re already in there, having treatment,” Leadbeater says.

“This isn’t going to happen overnight,” she adds. “If we think about the job of the Health Secretary, he’s got a little bit of time to sort all those issues out before this could come into effect. The job of Parliament is to look at the principle of this issue and to decide whether the law needs to change. That is our job.”

Another objection raised by critics of the bill is that the limits it seeks to set are incompatible with the European Convention on Human Rights. Because it is surely discriminatory to value autonomy for those with terminal illnesses but not for others in serious pain it is, they claim, a step onto a slippery slope. And indeed there are plenty of campaigners on Leadbeater’s side who want the bill to be more inclusive.

“It’s been a difficult, very emotional, process hearing from people who would not fall within the scope of the bill. That’s been really hard. Because my bill does not cover chronic, long-term health conditions. We don’t use the word ‘suffering’ at all in the bill, and that’s very intentional because disability rights activists asked me not to use that, and I took that on board,” Leadbeater says.

Applying the bill only to terminally ill people has been challenging for the MP. “I do acknowledge that, for some people, they would’ve liked a bill that would’ve included a greater scope. And that has been difficult. I’ll be quite honest – that has been really hard.”

She does not accept that the scope could be broadened in the future, however.

“People can take a case, but it will never go anywhere… My bill is very clearly entitled ‘The Terminal Ill Adults (End Of Life) Bill. You cannot change the title of that bill. You cannot change the scope of that bill. The only thing anyone could ever do would be to have a new law.”

Some still worry that once Parliament gives its view on assisted dying, the courts can consider whether the legislation discriminates against those who are excluded from its scope – and that if the law were found to be discriminatory, Parliament would not be able to ignore that.

Critics also point to Oregon, often held up by campaigners as an example of where assisted dying is done right. Although it is restricted to the terminally ill in the US state, the scope has grown organically to include illnesses such as anorexia.

“No, the criteria in Oregon is six-month terminal illness, and it has not gone beyond that,” Leadbeater interjects.

Nonetheless, the Oregon Death with Dignity Act 2021 data summary lists anorexia as one of the illnesses (along with arthritis and others).

“Anorexia is a mental health condition, and mental health conditions are not included in my bill,” the MP says firmly. “I’m very happy to look at that. But look, from my perspective, eating disorders are absolutely not within the scope of the bill.”

According to a study (Roff & Cook-Cottone, 2024), patients with severe, enduring anorexia have been considered terminally ill in the US and eligible for assisted death on that basis – not because of a concurrent terminal illness, nor because they have organ failure. Eating disorder specialists have told The House they are now alarmed that the same could happen in the UK. ‘Terminal’, they argue, is not as limiting as it might first appear; in Oregon, an illness can fall under that category after a patient refuses treatment.

“I have worked with people with eating disorders and I know what a serious condition it is. Nobody with an eating disorder, any more than a person with a disability or a psychiatric condition or mental illness alone would be eligible under my bill,” Leadbeater later tells The House over email.

“There may be tragic situations where a person with anorexia also has a terminal illness, but it would only ever be that illness that would permit two independent doctors and a High Court judge to agree to their request for assistance to shorten their death.”

Another commonly cited concern is coercion. How would a registered medical practitioner know whether a patient is being coerced?

“Doctors are dealing with the issue of coercion all the time anyway,” says Leadbeater, who points out: “People are going to Switzerland. We have no idea if those people have been coerced or not.”

She adds: “There would be training for anybody who would choose to opt in to be part of the assisted dying programme. Medical professionals will receive thorough training; there will be a code of practice around it.”

It’s very difficult to legislate for emotions, isn’t it? That’s the point

While the bill does make coercion by another person an offence, it does not address the less direct version – ending your life because you feel like a burden, either to the NHS or to your family. Disabled broadcaster Liz Carr has called it “state-level coercion”. 

Is the omission because Leadbeater felt it was impossible to reliably identify that feeling and thus exclude those people?

“It’s very difficult to legislate for emotions, isn’t it? That’s the point,” she replies. “That’s where the robust training programme and the code of practice would come into play… I know some people struggle with this, but we do have to put our faith in medical professionals and lawyers and judges who are making difficult decisions all the time.”

Choosing an assisted death because someone feels like a burden is not a reason, under her bill, for the medical practitioner not to sign off on their decision, however.

“The eligibility criteria are really clear. The person has to make the decision voluntarily; is not being coerced or pressured by another person into making it. The person is making an informed choice, including being aware of all the other treatments… and if there is any doubt about mental capacity, the doctor can refer to another medical practitioner.”

Emphasising the need for a “clear, settled and informed decision”, Leadbeater adds: “Whilst people might think, ‘How can you possibly check?’ Well, we’re not checking anything now. This is far more robust than the status quo.”

As well as two registered medical practitioners, the High Court must be involved. Leadbeater acknowledges in written correspondence after the interview that the bill does not specify it must be a High Court judge – under the Senior Courts Act, that technically means a district judge could provide the safeguard. However, she says, “from my discussions, the clear expectation is that the number of cases in the first few years of operation would be relatively small and this would certainly be a High Court judge”.

So, when the High Court hears from one of the doctors, possibly both, and perhaps hears from the person making the application, some lawyers have asked: who pays for the court proceedings?

“I wouldn’t anticipate someone would pay a fee. But listen, these are the details that would have to be sorted out if the bill passes,” the MP replies. “It’s the job of Parliament to decide they want to change the law and then look at those issues. You don’t put in a piece of legislation, ‘it’s going to cost a certain amount of money’.”

The Leadbeater bill specifies that people must self-administer the lethal drug: the co-ordinating doctor can assist the person in that but cannot take the “final act”. (This is the distinction made between assisted dying and euthanasia.) In some cases, it is not as simple as they’d hoped, however – there can be complications. Could the co-ordinating doctor step in to hasten the death in that situation?

“I understand why people want to focus on those cases, but it happens very, very rarely. The doctor would have had a conversation in advance with the patient about what they want, but the doctor cannot step in.”

After the huge piece of work that was drafting the bill, Leadbeater now has the job of convincing her colleagues to vote it through. With Streeting’s comments swaying some Labour MPs, the Second Reading result has become difficult to predict.

Asked how confident she is, Leadbeater says: “I don’t know what will happen on the 29th. But what I’m really pleased about is the fact we’re having debates and conversations about really important issues, including talking about death, which we’re not very good at doing in this country.

“Many people have come up to me and said, ‘Thank you for doing this.’ They’ve told me a horrible, harrowing story of their own experience, but also said, ‘I’ve actually spoken to my family about death and about dying, and what I might want.’ I think that’s a really positive thing, because it’s going to happen to us all at some point.

“Whatever happens with the bill, the fact that we’re having those debates is a really important and positive thing that’s come out of this.” 

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