The 58-year-old from North Yorkshire has become a passionate campaigner for the bill after her husband Anthony was diagnosed with motor neurone disease (MND). He lived with the disease for six years before deciding to end his life at Dignitas, in Switzerland, in December 2024, feeling like he had “no choice”.
“Anthony was so upset by that, that he wasn’t able to have the right conversation and to be able to say ‘see you later’. He’d gone out for lunch with his parents, but of course they didn’t know [his intentions]. Knowing the pressure and pain I was under, and knowing the day was going to come, they were spared that suffering.
Louise Shackleton in London, as Humanists UK and My Death My Decision join forces with those who have accompanied loved ones to assisted dying facilities in Switzerland (Photo: Belinda Jiao/PA Media Assignments)
Anthony, who died aged 59, was a furniture restorer who had earned worldwide recognition for making rocking horses. Louise travelled to Switzerland with her husband of 25 years – the couple had known each other since they were teenagers – and on her return handed herself into the police.
A spokesperson for North Yorkshire Police told The i Paper: “The investigation is ongoing. There is nothing further to add at this stage.”
However, even if the bill passes, a landmark assisted dying law in England and Wales is unlikely to help people with MND. That is because the legislation would permit a person who is terminally ill with less than six months to live to legally end their life after approval by two doctors and an expert panel – but it is almost impossible for doctors to give life expectancy with that level of accuracy to patients with terminal neurological conditions. As a result, Louise hopes MPs eventually pass a bill that has a wider focus.
Anthony, who died aged 59, was a furniture restorer who had earned worldwide recognition for making rocking horses.
“He may have declined to so rapidly that someone could have said he had two days to live but then the bill wouldn’t have covered him due to all the investigations that need to be carried out. So the bill as it stands doesn’t really help the MND community.
If it takes more than one session to debate the bill on Friday, it will be debated again on 13 June prior to a vote on its third reading. The bill would allow an assisted death for those in England and Wales with a terminal illness with less than six months to live, needing the approval of two doctors and a panel including a specialist lawyer, social worker and psychiatrists.
At least five more MPs have decided to vote against the assisted dying bill, it was reported this week, including Education Secretary Bridget Phillipson who said she would not change her stance after voting against the bill.
Reasons MPs believe the assisted dying laws won’t work
By Eleanor Langford
Limited bill scrutiny
Many MPs have criticised the decision to present the assisted dying legislation as a private members’ bill (PMB) rather than it being put forward by the Government.
There is historical precedence for using a PMB on laws related to matters of conscience. The legalisation of abortion, decriminalisation of homosexuality and the abolition of the death penalty were all brought in through such bills.
However, such bills have a much stricter time limit. MPs were given only five hours of debate at the bill’s second reading, and will have a similar time limit for future Commons stages.
‘A slippery slope’
Many opponents of the legislation also cite concerns about it leading to a “slippery slope”, suggesting that the bill could be expanded later with undesirable consequences.
Those touting this criticism often point to Canada, where assisted dying has been legal for those with a terminal illness since 2016.
Lack of safeguards
Politicians on both sides of the debate have stressed the need for strong safeguards when it comes to assisted dying to prevent the coercion of patients and unintended consequences of the law.
When Leadbeater first proposed the legislation to the Commons, one of the most talked about safeguards was the requirement for two doctors and a High Court judge to sign off on all requests for assisted dying.
However, this requirement was scrapped and replaced with a voluntary assisted dying commissioner during the committee process.
Palliative care resources
MPs supportive of the assisted dying legislation have argued that the process would complement rather than replace palliative care provisions.
However, fears remain that the new law could divert focus from the palliative care and hospice sector.
On Tuesday, the Scottish Parliament voted in favour of its Assisted Dying for Terminally Ill Adults (Scotland) Bill. MSPs voted 70 in favour, 56 against on Stage 1 of the Bill, which is about general principles. There will be another two rounds of voting and amendments before the Bill passes fully. No Assisted Dying Bill in Scotland has ever made it past Stage 1.
The couple had known each other since they were teenagers.
“I don’t like that word ‘vulnerable’,” Louise says. “I’m part of the MND community and I’ve never met such strong people in my life.” She lists some of those – Dave Setters, Lee Millard – who were pivotal to the campaign which successfully lobbied the government in 2021 for £50m in funding for the UK Motor Neuron Disease Research Institute – “although we’re still waiting on the last £15m”.
“So to call terminally ill people ‘vulnerable’ is wrong because our MND community is full of very strong people. I haven’t met a weak or ‘vulnerable’ one. They’re very strong, outspoken and driven.”
square ASSISTED DYING Big ReadFour reasons MPs think the assisted dying laws won't work
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“I think that would be far more compassionate towards people who are already going through such a difficult time,” she said.
“There is nowhere else in the world that will have this level of safeguarding that England and Wales will have. I know the opponents will say it’s a slippery slope, but the slippery slope hasn’t happened anywhere else.
“Where there has been a change in place that have introduced assisted dying it is because that has been asked for by members of public. It has not been medically or politically led. People have lobbied parliaments for change and the people’s voice should be heard.”
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