Disability News Service 26th June

Disabled Labour MP Vicky Foxcroft has described how she was left with “no choice” but to resign as a whip over government plans to cut billions of pounds a year from disability benefits.

In her first interview since releasing her resignation letter last Thursday, she told Disability News Service (DNS) that the four years she spent as a shadow minister for disabled people had played a significant part in her decision.

And she also made it clear that the backbench rebellion over the cuts is “huge”, with many of the critics MPs who are “normally very loyal” to the government.

That became clear on Tuesday, when fellow Labour MPs – led by 11 select committee chairs – published a “reasoned amendment” which “declines to give a Second Reading” to the bill, although this is unlikely to be selected to be voted on by the speaker.

She has signed the amendment, which is currently supported by 162 MPs, including 126 other backbench Labour MPs.

Foxcroft says she was taken aback by the number of Labour MPs who approached her on Friday to share their concerns about the bill, as she came to the House of Commons chamber for the assisted dying bill debate (see separate stories).

“Many have come to me to share their concerns, to say they agreed with what I had said in my resignation letter,” she says.

“And some of these were colleagues that you wouldn’t maybe have expected to have expressed concerns.

“These are not the usual suspects from the left of the party, these are people who are normally very loyal and want to be loyal but know the government needs to change this.

“I mean, I’m the same myself, but I was left with no choice.

“I don’t want to speak out like this but the government needs to listen, so I will use my voice to amplify voices that are being ignored.”

It’s clear from Sunday’s interview that if she had thought she could effect change from within government, she would not have resigned, but she made her decision to quit when the bill was published last Wednesday, and she saw that ministers had made almost no changes since March’s green paper.

The next day, she resigned through a letter to the prime minister.

In fact, as DNS reported last week, the measures in the bill were in one respect even worse than those suggested by Pathways to Work, because of the misleading reference in the green paper to a premium for those in the “severe conditions group”, which the bill shows will only be a premium for new claimants.

This was confirmed by the minister for social security and disability Sir Stephen Timms, when he gave evidence to the Commons work and pensions committee yesterday (Wednesday).

Foxcroft’s criticisms of the bill are fuelled by her own lived experience as a disabled MP, but also by the evidence she gathered from meeting hundreds of disabled people, including many representatives of disabled-led organisations, during her time as shadow minister.

“We all know the benefit system desperately needs reform,” she says, “but PIP isn’t and has never been about getting people back to work.

“PIP is there to help disabled people with everyday needs. It’s an in-work and out-of-work benefit, and it’s wrong to deny support from someone who needs help to wash, dress, or use a toilet.

“The cuts will literally remove this basic dignity.

“I couldn’t vote for cuts that would make 800,000 people worse off, with 250,000 pushed into poverty, including 50,000 children. That’s a real human cost.

“And these cuts don’t make human needs disappear. They just shift the costs onto already over-stretched services such as the NHS, social workers and unpaid carers.

“It’s a false economy, with devastating consequences.”

She says she also understands disabled people’s concerns – evidenced in The Department*, by DNS editor John Pring – about the many deaths of claimants, including an estimated 600 from suicide during the incapacity benefit reforms, when there were similarly significant cuts and reforms to out-of-work disability benefits in the early 2010s under the Conservative-led coalition.

She is reading the book and is aware that safety and safeguarding must be a key priority with any reforms, because of the risk of unintended consequences.

During Sunday’s interview, she repeatedly stresses the crucial part played in her decision to resign by her four years as shadow minister for disabled people, leading up to last year’s general election.

She says her engagement with disabled people while she was shadow minister showed her just how badly many of them had struggled through 14 years of Conservative government, and she stresses her admiration for those she worked with, even those who “shouted” at her when her party did not go far enough on disability policy.

“They were desperate to see the change that a future Labour government would bring for them,” she says.

“I said as shadow minister that we would work with them to ensure that changes that affected them improved their lives, but that has not happened.

“These changes we’ll be voting on have not been consulted on with disabled people and disabled people’s organisations, and it’s so important to make sure that consultation happens and their voices are heard when such big changes are taking place.

“That is one of the reasons I resigned.”

She made the same point in Friday’s debate on the assisted dying bill – which she voted against – when she spoke of the “negligible” consultation there had been with disabled people about the legislation, and told MPs: “Disabled people’s voices matter in this debate, and yet as I have watched the bill progress, the absence of disabled people’s voices has been astonishing.”

She is hoping ministers will receive this subtle message: that government must engage with disabled people right from the start of any policy-making process that will affect them.

Despite several questions from DNS, she refuses to criticise work and pensions ministers, including Liz Kendall.

But asked for her message to the prime minister, she is blunt. “He needs to revisit it,” she says.

Despite that bluntness, and her high-profile decision to quit as a whip, her resignation letter makes clear that she is fiercely loyal to the government, but just intensely frustrated at the deeply harmful proposed cuts to the universal credit health element, and particularly to PIP.

She points to government policies that would allow people on out-of-work disability benefits to try work without fear of having to go through the assessment process again if it doesn’t work out; reform Access to Work; introduce disability pay gap reporting; and ensure all disabled claimants have access to a supportive work coach if they need one.

But she says: “We need to be doing those things first before we even start considering how we are going to be reforming disability benefits.

“And when we do eventually do that, we need to make sure that we do it with disabled people and organisations run by disabled people.”

She also lays a large part of the blame at the door of the Department for Work and Pensions (DWP) itself.

She knows from her time as shadow minister that many disabled people have zero trust in the department.

“This bill is most definitely not the right way to persuade disabled people to trust DWP,” she says, “and certainly not when we’ve not worked with them to ensure that we get this right.”

Speaking on Sunday morning, three days after her resignation letter was published, she says she is finally finding time to think after the “whirlwind” media storm it caused, but she insists she has no feelings of regret, although she is sad she had to take the step she did.

“I’m sad to leave my colleagues in the whips office, who I think are absolutely brilliant and do really good work,” she says.

But there is also a keen sense that she knows time is running out to persuade the government to back off, with the bill’s second reading set to take place on 1 July.

“I want to see the government change this. Desperately.

“They need to listen to what I’m saying, to what Labour MPs are saying, and what disabled people are saying.”

26 June 2025

Disabled peers plan to ‘amend, amend, amend, amend, amend’ after assisted dying bill reaches Lords

The disabled peer who has led UK opposition to the legalisation of assisted dying for decades has pledged to work to make a bill passed by MPs so “tight” that only a very few people will be able to take advantage of it.

Baroness [Jane] Campbell said she believed that if the legislation made it easy for people to take advantage of the new laws – if they are eventually approved by parliament – then “people for whom this bill was never intended will die in their droves”.

She was speaking to Disability News Service (DNS) just minutes after MPs had voted by 314 votes to 291 on Friday afternoon to approve the terminally ill adults (end of life) bill, which will legalise assisted suicide in England and Wales for some people diagnosed with a terminal illness, in certain circumstances.

The crossbench peer, who herself has a progressive condition, said she believes her task as a member of the House of Lords – which will now examine the bill in detail – will be to “amend, amend, amend, amend, amend, so it becomes so tight that anyone would find it difficult to get it”.

She also said her task will be to ensure there is no “slippery slope” that will allow the bill to be extended to an ever wider group of people.

But she said that even if she and fellow peers were successful in amending the bill to make it safer, they were “not miracle workers”.

Baroness Campbell, founder of Not Dead Yet UK (NDY UK), which sees legalisation of assisted suicide and euthanasia as “deadly forms of disability discrimination”, said: “There will be mistakes and people will die, whom if they’d had the right support could have lived a good life until they died, but what else can we do?”

She added: “Why choose people like us to help to die when they can so easily put in support and care to help people live dignified lives at home so that they can cope with the bad times, and get through them.

“Because people do get through them and it is possible to have a good death with a progressive or terminal illness. This is what people forget.”

Her fellow disabled crossbench peer, Baroness [Tanni] Grey-Thompson, who has also spent years opposing legalisation, supports Baroness Campbell’s strategy.

She said: “There are very few safeguards in [the bill] currently. Very few amendments were voted on.”

And she said there was no protection in the bill for people with Down’s syndrome or others with learning difficulties.

Before the vote, Baroness Grey-Thompson told DNS that there would be many amendments proposed in the House of Lords, if the bill was passed by the Commons.

She said: “There’s so little safety in this bill, and so little understanding of the lives of disabled people, and the current government’s plans for welfare.”

Last week, NDY UK released polling showing that two-thirds (65 per cent) of disabled people believe that if benefits are being cut – as they are currently through the Labour government’s universal credit and personal independence payment bill – disabled people living in poverty may be likely to seek an assisted suicide instead of struggling financially.

26 June 2025

Minister finally admits that working-age benefits spending is stable, despite months of ‘spiralling’ claims

A minister has finally admitted that spending on working-age benefits is stable, and is not spiralling out of control, despite months of claims from his own department and fellow ministers.

Sir Stephen Timms made the admission as he told the Commons work and pensions committee that ministers had decided not to carry out a public consultation on the billions of pounds of cuts to personal independence payment (PIP) and the disability element of universal credit because of the “urgency of the changes needing to be made”.

He was giving evidence in the committee’s final session of its inquiry into the government’s Pathways to Work green paper.

Sir Stephen, minister for social security and disability, said that spending on PIP had risen in real terms from £12 billion in the year before the pandemic to £22 billion last year, which he said was “not a sustainable trajectory”.

But the committee’s chair, Labour MP Debbie Abrahams, asked if he accepted the evidence of Ben Geiger, professor of social science and health at King’s College London, who had told the inquiry that working-age social security spending had remained at about five per cent of GDP* for the last decade.

Abrahams also asked Sir Stephen if he accepted that the rise in the number of PIP recipients has been due to demographic change, the nation’s poor health, and the increase in the state pension age.

The minister replied: “Well, yeah, I mean, much of what you say, I completely accept.”

He added: “I think that working-age social security spending as a percentage of GDP isn’t much more now than it was before the 2008-2010 recession, but as you say, the share on disability and incapacity benefits is very substantially up.”

He said most of this increase was in the last six years, and that while the “incidence of disability” had risen by about 17 per cent since just before the pandemic, the incidence of “benefit claiming” had risen by 34 per cent.

Abrahams suggested an explanation for this was that more disabled people were needing to claim PIP because of financial pressures.

Sir Stephen agreed, and suggested that the government needed to cut spending on PIP, even though disabled people were only claiming it because they were struggling due to the cost-of-living crisis.

He said: “I think you’re absolutely right. I’m sure that the cost-of-living challenges are a very big factor in what’s happened.

“The people who may well have always been eligible but have not in the past claimed benefit are now doing, and that’s what’s driven this very substantial increase.

“As I say, the current trajectory is not a sustainable one and it is not in the interest of people who depend on PIP for it to be on a financially unsustainable trajectory.”

Disability News Service reported in February that claims by ministers, opposition politicians and the media that social security spending was “spiralling out of control” were false and “ideological”.

Last August, chancellor Rachel Reeves said the previous government had “let welfare costs spiral out of control”.

In January, the Department for Work and Pensions (DWP) said in a press release on benefit fraud that it wanted to “tackle the spiralling welfare bill”.

And in February, in a press release on disability employment, DWP claimed again that benefits spending was “spiralling”.

*Gross domestic product, the size of the country’s economy in a particular year

26 June 2025

This bill opens the door to scandal, abuse and injustice, disabled activists say after assisted dying bill vote

Disabled people’s lives will be increasingly in danger because of MPs’ failure to understand the risks posed by the assisted dying bill, devastated activists warned on Friday after the legislation was approved by the House of Commons.

Disabled activists had started gathering outside parliament at 6.30am last Friday in preparation for a crucial debate on the terminally ill adults (end of life) bill before a vote that determined whether it passed to the Lords.

The bill was eventually passed by the Commons by 314 votes to 291 on Friday afternoon, although disabled MPs strongly opposed the legislation (see separate story).

Before the vote, supporters of Disabled People Against Cuts (DPAC) and Not Dead Yet UK (NDY UK) held up traffic in front of the House of Commons with a last-minute direct action, accompanied by chants of “we are not… dead yet”.

Author and activist Ellen Clifford, who has helped lead disabled people’s opposition to the bill over the last year, said she trusted the Lords to improve the bill more than MPs, some of whom she said had acted on “naked ambition” and the principle of assisted dying, rather than what was in the bill.

She said she hoped the bill’s passage through the Lords would improve the safeguards and provide opportunities “to show what a shambles the bill is”.

Among those disabled people outside the Commons was musician and activist John Kelly, who said after the vote was announced: “The truth is, our voices haven’t been listened to.

“What this does is open the door for injustice.

“To rely on a panel to decide my life of social workers, and psychiatrists, have you not read how many injustices and mistakes those people have made, how much abuse and how many rights have been denied disabled people?

“And what they have done is open the door to allow in yet more scandals, yet more abuse.”

Disabled activist Anna Landre told Disability News Service (DNS): “A lot of us are scared about the prospect of enshrining a state-funded ability to die when we don’t have properly-funded state services to live with dignity, let alone to thrive, let alone to get disabled people into work, like this government claims it wants to do.”

She said: “I most certainly don’t feel safer now.

“I think it’s going to create an atmosphere for disabled people that is increasingly unsafe, when our services are being stripped from us, when we’re going to have to fight even harder to get the basics, the scraps that we can already barely access and now in any medical, in any doctor’s office we enter, we face the prospect of being offered a death, of being offered [an assisted suicide].”

She said it was particularly unsafe for disabled people who face multiple marginalisations, including disabled women, who are more likely to be in an abusive relationship; disabled people of colour, who are more likely to be doubted by their medical practitioners; and disabled people of low socio-economic status, “who are looking at not being able to pay rent next month”.

She added: “As a disabled woman, I’ve been trying to access a cervical cancer screening for over two years.

“I wish this government would work on that rather than working on streamlining my access to suicide.”

Another leading activist, Simone Aspis, said that, as a disabled woman with learning difficulties, it was “a very sad day for our community”.

She said the bill was “really, really dangerous”.

She said she believed that, for her and other people with learning difficulties, assisted dying will become the “de facto” treatment option given to them by doctors.

She said: “The government keep saying that there is not enough money to go around, so we are going to spend money on creating an assisted dying service?

“Where is this money going to be found? It’s going to be taken away from education, from care, from housing, from anything that supports us to have good lives.”

Aspis also pointed out that people with learning difficulties had been “excluded from this debate” because the bill had not been made available in easy read.

Dermot Devlin, co-founder of DPAC Northern Ireland, said that, with the government’s cuts to disability benefits coming in, it was “a dangerous country now if you’re disabled… but we will keep fighting back.”

Chelsea Roff, a researcher and founder of the US-based charity Eat Breathe Thrive, who has fought for months to alert MPs to the risks the bill poses to people with eating disorders, said: “I’ve spent the last six months trying to raise awareness about this loophole, and hundreds of experts have warned parliament: charities, people with eating disorders, physicians, doctors, lawyers…

“I did that because I thought it was the right thing to do because I thought if MPs understood the evidence, they would act on it and amend the bill.

“I’m really disappointed and I think the evidence was minimised, it was dismissed, it was not meaningfully engaged with.”

Michael Lorimer, from DPAC Northern Ireland, said he was concerned that the bill gave ministers “massive executive powers”.

He said: “Given what they’re doing on benefit cuts, we can’t trust them to represent our best interests in terms of implementing this legislation.

“It’s getting to the stage where Labour are a clear and present danger to disabled people’s lives here because of the benefit cuts and because this bill has gone through, giving them almost unlimited powers in terms of how they shape this legislation.

“And they’ve been clear through the benefit cuts that they don’t value our lives.”

Jason de Souza said he believed the new law would be “a catalyst for a much wider agenda against disabled and vulnerable people, especially people who are in a situation where they need palliative care and support”.

Earlier, disabled activists had gathered nearby to share their final thoughts before the vote, after months of campaigning.

Devlin had told fellow protesters: “As a disabled person, this assisted dying bill breaks my heart. It terrifies me.

“It tells me that my life, already pushed to the margins, already made harder by endless cuts and cruelty is… now disposable, it [turns] the language of choice and dignity into something darker.

“I want to live, I deserve to live, but this bill makes it clear to them that lives like mine are just too expensive to bother saving.”

The disabled crossbench peer Baroness [Tanni] Grey-Thompson fought back tears as she thanked disabled activists for attending the protest “despite the discrimination they face in their daily lives and inaccessible public transport”.

She said there was “so little safety in this bill, and so little understanding of the lives of disabled people, and the current government’s plans for welfare”.

Kevin Caulfield, former chair of Hammersmith and Fulham Coalition Against Cuts, said: “The bill, and what is happening with the universal credit and personal independence payment bill, really indicates disabled people’s position in society, because we have been sidelined all the way through this process.

“People with life-limiting illnesses are disabled people and that’s in practice and in law and yet they have successfully managed to portray this bill as having very little to do with disabled people, and that’s a f*****g disgrace and it’s disgusting and the same is happening with the benefit cuts.”

Caulfield was given a terminal diagnosis 28 years ago, and says he “might well have decided to take the option” of an assisted death if it was available then “because I was a newly disabled person, I didn’t have access to other disabled people, I had no access to mental health support, and it may well have seemed like a reasonable option”.

But he said he was “still here 28 years later”, and there were “going to be many people in a similar situation to me, tens of thousands of people that will end up being dead as a by-product of this legislation”.

Disabled actor, writer and activist Liz Carr, said the number of disabled activists who had attended the protest was “amazing” in the context of spending cuts and “the struggle to survive”.

She told fellow activists: “You make me know that we’re right and that even if this goes through today and goes through to the Lords, we just keep going there because we know where this goes, we know what it means, we know how it will impact our community and other communities.”

Paula Peters, who had been the first to start the protest, at 6.30am outside parliament, said: “Whatever the outcome, we keep going, and we keep fighting, and we keep resisting… and we are not dead yet.”

Jamie McCormack, another disabled activist who refused to accept defeat, said: “We will fight on, we will fight for assistance to live, not to die.

“We will fight to our very last dying breath.”

And George Fielding told fellow activists: “Our most precious public services, and the things on which we all rely, rely on doing no harm.

“This bill will do harm; its very premise is to kill people, it’s a pre-designed process.

“We are on the right side of history, always have been, and the resistance starts as soon as we hear the result today.”

26 June 2025

Timms says cuts must go ahead, despite being reminded of risk that disabled claimants could die

The minister for social security and disability has insisted that billions of pounds a year of cuts to disability benefits must go ahead, despite the risk that they will once again cause countless deaths of disabled claimants.

Sir Stephen Timms was giving evidence yesterday (Wednesday) to the Commons work and pensions committee about plans to cut billions of pounds a year from spending on personal independence payment (PIP) and the disability element of universal credit.

He was giving evidence to the committee’s final session of its inquiry into the government’s Pathways to Work green paper.

The first question he was asked, by committee chair Debbie Abrahams, was about the health impact of the cuts on disabled people, and whether the planned new employment support and jobs would be available by the time the government begins to implement the cuts next year.

She highlighted how research in 2015 by academics at Liverpool and Oxford universities showed the reassessment of disabled people on incapacity benefit through the work capability assessment was linked to about 600 suicides between 2010 and 2013.

Unpublished research also showed how cuts in 2017 – of nearly £30 a week to payments to new claimants of employment and support allowance who were placed in the work-related activity group (WRAG) – were associated with 130,000 “new onset mental health conditions”, she said.

Conservative ministers were ridiculed when they first announced the 2017 cuts and argued that they would “incentivise” those in the WRAG to find work.

Abrahams had already asked Sir Stephen what estimates the government had made of the impact the bill would have on health, in the light of these two pieces of research, at work and pensions questions on Monday.

He said on Monday that the Department for Work and Pensions was “working very closely with the Department of Health and Social Care to ensure that the health and care needs of people who lose benefits as a result of this process are met”.

And when asked again yesterday about the risk of harm caused by the bill, Sir Stephen said the government needed to make sure that both “employment support” and “health and care support” were in place when the cuts were implemented.

He said that new investment in infrastructure and jobs would be “coming into place” in the next few years, and with “what we are proposing on all of those fronts that we will be seeing the progress that we need”.

He added: “I don’t think it would be a viable option to say, well, we’re kind of not going to do anything about the health and disability benefits for a few years and see how things go.”

The minister was also asked by Liberal Democrat MP John Milne about government plans to halve the health element for new claimants of universal credit next year from £97 per week in 2024-25 to £50 per week in 2026-27, and to freeze it at £97 for existing claimants from 2026-27.

Sir Stephen claimed there was a “very big incentive” for disabled people to “seek to be classified” as having limited capability for work and work-related activity (LCWRA), and so eligible for the health element top-up.

He said: “If they are classified as LCWRA they get a premium which is worth more than the universal credit standard allowance, and that is unavoidably a massive magnet for people.”

He pointed to a letter he had seen in which an MP’s disabled constituent had said that being classified as LCWRA – rather than as having limited capability for work – would mean they would be paid £400 a month more, which would mean they would be “comfortable”.

But Sir Stephen Timms appeared to suggest that a disabled person being financially “comfortable” on benefits was a bad thing.

He said: “And I think this is a really serious flaw in the current system, that it presents this sort of LCWRA status as a sort of something to aim for, that ‘if only I could get to that, I would be comfortable’, when the system should not be doing that to people.

“That is a very bad feature of the current system.

“What the system should be doing is encouraging people to aspire to work and providing the support to make work possible and feasible, and so, yeah, we are wanting to substantially reduce that incentive.”

He said this would partly be done by raising the standard allowance of universal credit by £5 a week, as well as reducing the health element.

But Milne suggested that the government was concentrating on “Treasury first, needs second”, when what it should be doing was focusing on “needs first, Treasury second”.

26 June 2025

Absence of disabled people’s voices from assisted dying bill has been ‘astonishing’, says disabled MP

Disabled MPs have voted overwhelmingly against the assisted dying bill, and warned that it poses a clear danger to disabled people if it eventually becomes law.

Although the terminally ill adults (end of life) bill was passed by the Commons by 314 votes to 291 on Friday afternoon, disabled MPs strongly opposed the bill.

By Disability News Service (DNS) calculations, those MPs who have publicly self-described as disabled people voted against the bill by seven to one.

Disabled MPs who voted against the bill were Labour’s Jen Craft, Marsha de Cordova, Vicky Foxcroft, Liam Conlon, Emma Lewell and Marie Rimmer, and Liberal Democrat Steve Darling.

The only disabled MP who voted for the bill was Marie Tidball, who spoke repeatedly in favour of the legislation during its committee stage, and whose support has likely persuaded some wavering MPs of its safety.

Of the eight disabled MPs, only Craft and Foxcroft spoke in Friday’s debate.

Craft told fellow MPs that their vote would have “real-world consequences”.

She warned that the medical establishment placed a lesser value on disabled people’s lives, and revealed that when told of her daughter’s Down’s syndrome when she was pregnant, “the first thing the midwife said to me after ‘I’m so sorry’ was, ‘I can book you a termination within 48 hours.’”

She said she could not support the bill “because we cannot legislate against discrimination and we cannot legislate out inherent bias”, and the bill did not have “the adequate safeguards in place”.

She said: “We have been told that there are panels that will provide a safeguard and take into account all of someone’s circumstances, and whether they have capacity.

“However, those panels may in exceptional circumstances – the bill does not set out what those are – opt not to even meet the person whom they are discussing.

“We know that the panels do not allow for family members and carers and those who know that person – if they have limited capacity, a learning disability or are unable to make certain decisions themselves – to play a role in that process or have any right of appeal.”

Craft said it was not the job of MPs to send a flawed bill to the Lords and then “out into the world, hoping that others will do our job for us and that it will all just come out in the wash”.

She said: “That is a dereliction of our duty as members of parliament.

“If you have any concerns about this bill, now is the time to vote against it. You must do that.

“You must not think that someone else will do your job for you. It is our decision.”

Foxcroft, who was speaking a day after resigning as a government whip over her concerns about the government’s disability benefit cuts, said she had previously been in favour of legalisation.

But she said that her four years as shadow minister for disabled people, during which she spoke to hundreds of disabled people and their organisations, showed they were “extremely fearful of assisted dying”.

She pointed to the huge numbers of disabled people who died during the pandemic, and those who had “do not attempt resuscitation” notices placed on their health records without their knowledge, which “made them fear for their lives”.

She said: “It made them fear that the authorities thought that their lives were worth less. It also made them fearful of what would happen if assisted dying was brought forward.”

She said disabled people “need the health and social care system fixing first” and “want us as parliamentarians to assist them to live, not to die”.

She said: “Disabled people’s voices matter in this debate, and yet as I have watched the bill progress, the absence of disabled people’s voices has been astonishing.

“They have wanted to engage. Indeed, they have been crying out to be included, yet the engagement has been negligible.

“I believe that only one disabled people’s organisation was given the opportunity to provide [oral] evidence to the committee.”

She also pointed to the failure to provide the bill in accessible formats, including easy read and British Sign Language.

She told MPs: “I will finish by saying that I am not opposed to the principle of assisted dying, but until we have a system that supports the right to life, I cannot support it.

“Until we ensure that all safeguards are in place, I cannot support it.

“And until the vast majority of disabled people and their organisations support the legislation that is being brought forward, I cannot support it.”

She added: “We are not voting on principles today.

“This is real and we have to protect those people who are susceptible to coercion, who already feel like society does not value them, who often feel like a burden to the state, society and their family.”

26 June 2025

Timms misleads MPs on DWP transparency and cover-ups, as he gives evidence on PIP review

The social security and disability minister has misled MPs after suggesting he has ushered in a new era of openness and transparency in the Department for Work and Pensions (DWP).

Sir Stephen Timms told members of the work and pensions committee yesterday (Wednesday) that DWP was being “much more open” than under successive Conservative-led governments.

He had been asked by the committee’s chair, Labour MP Debbie Abrahams, about the review of personal independence payment (PIP) that he will shortly be leading.

He was giving evidence to the committee’s final session of its inquiry into the government’s Pathways to Work green paper, which will see billions of pounds a year cut from disability benefits.

Abrahams highlighted how the department had previously failed to share its own secret reviews into deaths linked to the benefits system with independent experts commissioned by ministers.

Disability News Service had exposed how the department failed to share both peer reviews – now known as internal process reviews (IPRs) – and coroners’ reports with the experts commissioned to review the work capability assessment between 2010 and 2014.

Abrahams asked Sir Stephen to reassure the committee that data on deaths associated with PIP assessments would be available to whoever led the review.

He told the committee: “I’ll be undertaking the review, so yes, the information will be available to me, and actually, you know, we are being – not least thanks to your work, chair – much, much more open about all of this now than was the case in the past.”

He said the department “want people to see what’s going on”.

He said: “There isn’t any benefit for the department in hiding these things.

“They were hidden too often in the past. And I think that’s one reason why the trust in the department deteriorated so badly, because people can see that things were being covered up and hidden and it shouldn’t have been happening.

“And I’m determined that it won’t happen in the future.”

But despite his comments, the department is continuing to hide crucial information about deaths linked to the disability benefits system.

This week, Disability News Service (DNS) submitted written evidence to DWP’s safeguarding review to highlight how DWP was still hiding crucial information that would expose its past actions and failings.

Last month, DNS reported how DWP had unlawfully failed to respond to a freedom of information request to see a secret “critical friend” paper from 2021 on the department’s safeguarding failures.

It is also continuing to refuse to release recommendations made by IPRs following deaths linked to universal credit, dating back as far as 2020.

DWP is also appealing a decision made by the information commissioner that the department should release to DNS “a paper detailing the impact of errors on vulnerable customers” that was discussed at the 12 October 2022 meeting of the department’s serious case panel.

And the department is continuing to refuse to release a transcript of a training session on human rights law given to DWP staff employed on working-age benefits.

These are just some of the reports being hidden by DWP; there are likely to be countless other reports and data being kept from other disabled campaigners and allies.

Sir Stephen said he hoped the terms of reference for the PIP review would be released before MPs rise for their summer recess on 22 July.

26 June 2025

Ministers are considering further extension to disability hate crime laws, after pledge on ‘aggravated’ offences

The government is considering whether to strengthen disability hate crime laws even further, after ministers agreed to make a long-awaited improvement that will mean longer sentences for offenders.

Home Office minister Diana Johnson announced last week that the government would act to extend the law so that standalone “aggravated offences” would

apply to disability hate crime and hate crime motivated by sexual orientation or transgender identity.

She said the government would add an amendment to the crime and policing bill to make this change when it reached its committee stage in the House of Lords, keeping a pledge made in Labour’s general election manifesto last year.

This would mean an offender could be charged with an offence – such as assault, harassment or criminal damage – that was aggravated by hostility towards a disabled person, and they would then face a tougher sentence if convicted.

At present, aggravated offences only apply to racial and religious hostility, and a disability hate crime can only be addressed by a court during sentencing, where the sentence can be increased if prosecutors can prove the offence was motivated by disability-related hostility.

The move was proposed in an amendment to the crime and policing bill by Labour’s Rachel Taylor, who told fellow MPs last week that the current discrepancy “cannot be right”.

She said: “We cannot say, as a society, that some forms of hatred are more evil than others.”

The amendment was supported by disabled Labour MP Marie Tidball, who said the “opportunity to legislate to strengthen the law on hate crime offences must be seized”.

Disabled campaigners have been calling for the change for more than a decade.

But one leading campaigner said the government needed to go much further.

The aggravated offences change was recommended by the Law Commission in December 2021, but it also made two other key recommendations to strengthen disability hate crime laws.

It called for existing offences of stirring up hatred, which only apply to race and religion, to be extended to disabled and LGBT+ victims.

And the Law Commission also said an offender should be found guilty of a disability hate crime offence if they had been “motivated” by “hostility or prejudice” towards disabled people, rather than – at present – only by hostility.

Dr David Wilkin, a disabled activist, researcher, author* and support worker for survivors of disability hate crime, welcomed the move to extend aggravated offences.

But he was critical of the continuing refusal – following years of resistance from Conservative governments – to implement the two other Law Commission recommendations.

He said: “Now, with the perfect opportunity to bring disabled people into the 21st century by establishing legislative equality, they are choosing once again to make sure that disabled people are treated differently, with their hopes and needs once again relegated.

“Hate crime campaigners have looked forward to disabled people being offered the same rights as other protected groups in new legislation.

“But now, having reached this timely and convenient critical moment, the Labour government are deliberately excluding those with the greatest needs from attaining simple, fair, and much needed equality.”

The Home Office has told Disability News Service that it will be considering these two further recommendations carefully.

A Home Office spokesperson said: “This government has committed to making our streets safer for everyone and nobody should ever be harmed because of who they are.

“Criminals motivated by racial or religious hate already get tougher sentences.

“Now we are making sure thugs who carry out vile attacks against someone based on their sexual orientation, transgender identity or disability will also spend longer behind bars.”

*Disability Hate Crime: Perspectives for Change, is published by Routledge

26 June 2025

Making all self-driving pilot schemes accessible would be ‘counter-productive’ and slow us down, says minister

A transport minister has told peers that it would be “counter-productive” – and take too long – to draw up rules that would ensure all pilot schemes of self-driving taxis are accessible to disabled people.

Labour’s rail minister Lord [Peter] Hendy was responding to concerns from disabled peer Baroness [Sal] Brinton, who had asked whether the government would make sure disabled people could use the self-driving vehicles when the pilots begin in England next spring.

The former president of the Liberal Democrats told Disability News Service (DNS) earlier this month that she was “very, very concerned” that the government was planning to allow companies to launch self-driving taxis and minibuses even if their vehicles were not accessible to disabled people.

She told fellow peers that the launch of driverless vehicles was a “once in an era moment”, and that contracts with providers should ensure that ramps and audio and visual announcements are “designed in right from the start”.

She said: “The government need to ensure that taxis and bus-like taxis will have accessibility designed into them.

“Otherwise, it will be like everything else for disabled people: reasonable adjustments after the event that are expensive for the manufacturer and never perfect for the user.”

Lord Hendy told her the government would be subject to equality laws in deciding how granting a permit could “improve understanding of how these services should best be designed for and provided to disabled and older passengers”.

And he said permits could enforce certain conditions, while “accessibility considerations” would be set out in guidance.

But he said: “It would be counterproductive to specify detailed requirements in regulation for innovative new services.”

He said it was likely that the first driverless vehicles would be “the same sort of vehicles” already used for taxis and private hire vehicles.

He added: “In the medium term, clearly there will be new designs, and there are already some that are suitable for wheelchairs and people with disabilities.

“We have to acknowledge that automated vehicles are part of an exciting future, but they have to be implemented safely, and she is right that they have to be implemented to benefit all parts of the community.”

He said he had “great sympathy” with Baroness Brinton “striving to make sure that disability is treated in the mainstream, but if we are going to do this quickly, we have to recognise that the early adoption under this act is likely to be using the same sorts of vehicles as are used now”.

He said: “What we are looking for in the medium-term future is new designs, which should have the facilities such as audio-visual equipment and facilities for people in wheelchairs that she would expect.”

Lord Hendy said the government needed to “design in – as far as we can – facilities for disabled people among this”, but the government “have to get going with this, because it is such an exciting future”.

But another disabled peer, the Conservative Lord [Kevin] Shinkwin, pointed out that deputy prime minister Angela Rayner had spoken of the importance of getting disabled people into work, and he questioned how “the retro, ad hoc inclusion of disabled people facilitates the realisation of that worthy goal”.

Baroness Brinton told DNS afterwards that Lord Hendy’s response was “very disappointing” and that she would now seek a private meeting with him to discuss her concerns.

Transport for All (TfA), the disabled-led accessible transport charity, said the government’s plans, which could exclude disabled people from the pilot schemes, were “unacceptable”.

Megan Barnett, TfA’s policy and public affairs officer, said: “Equal access to transport allows us to be part of society.

“If self-driving vehicles are allowed to develop without disabled people, they will only deepen existing inequalities.

“We need a strong national policy to ensure that the design and rollout of this exciting new technology includes disabled people from the start, so our whole community can benefit from driverless vehicles, now and in the future.”

The Department for Transport announced earlier this month that firms would be able to pilot small-scale “taxi- and bus-like” services without being monitored or controlled by a human for the first time next spring, before a potential wider rollout when the Conservative government’s Automated Vehicles Act is implemented in the second half of 2027.

The government believes self-driving vehicles could help reduce deaths and injuries on the roads, add new public transport options in rural areas, and have the potential to improve mobility, accessibility and independence for those who cannot drive, including many disabled and older people.

26 June 2025

Involve disabled people ‘meaningfully’ from the start when developing digital assistive tech, says report

There must be “meaningful participation” of disabled people in the initial stages of developing new digital assistive technology, if its potential for supporting their independence is to be realised, according to a new report.

The Royal Society concluded that tech companies, researchers and governments should do more to remove barriers and engage disabled people in the design of digital assistive tools and services.

Among the recommendations made by the Digital Technology report*, launched this week, is that governments should not consider smartphones as any less a form of assistive technology than hearing aids, manual wheelchairs, or white canes.

But it also warns that many disabled people globally experience lower levels of income compared with non-disabled people, so digital assistive technology needs to be affordable if it is to be useful.

It calls on governments, technology companies and research funders to explore ways to ensure affordability.

As part of the research, the Royal Society – the UK’s national academy of sciences – commissioned the Research Institute for Disabled Consumers to survey a panel of 850 disabled people.

Three-fifths (62 per cent) of them said they used digital assistive technology, with more than half of this group doing so throughout the day.

The survey found that more than half of users of digital assistive technology (53 per cent) said they could not live the way they did without it.

The report defines digital assistive technology as “any technology that processes information to help make people’s lives easier”, such as audio-to-text apps, wayfinding and navigation apps, wearable health devices, smart home devices, sight assistance apps, and screen-reading software.

The report also calls for statistics bodies to collect more data on the daily barriers many disabled people experience with their sight, mobility, and memory, rather than solely focusing on their self-reported disability identity.

Sir Bernard Silverman, emeritus professor of statistics at the University of Oxford and chair of the report’s steering committee, said: “As a statistician, I would particularly stress that the data we record, and how we categorise it, affects everything and everyone.

“Data on the functional challenges experienced by disabled people would help researchers and providers to ensure that digital products and services, especially in the AI age, are genuinely responsive to their needs.”

The report was developed by a committee of international researchers and technology experts, several of whom are themselves disabled.

Dr Hamied Haroon, a research fellow at the University of Manchester and a member of the Royal Society’s diversity and inclusion committee’s disabled scientists subgroup, said: “We shouldn’t be developing assistive technologies or policies without disabled people being front and centre of the process.

“How do you capture the day-to-day challenges faced by disabled people, or ensure you’re offering solutions that actually work, unless you talk to disabled people?”

Dr Haroon, a member of the report’s steering committee, added: “These assistive technologies are fundamental to the workplace and our daily tasks – but they can be prohibitively expensive or unusable in some settings.

“We need to look at removing these barriers, whether that’s costs, additional training, or infrastructure improvements – like addressing patchy mobile data services that can cut off disabled people in rural and deprived areas.”

*Disability Technology: How data and digital assistive technologies can support independent, fulfilled lives

26 June 2025

UK Deaf and Disabled People’s Monitoring Coalition

The UK Deaf and Disabled People’s Monitoring Coalition is a secular network of user led Deaf and Disabled People’s Organisations across the United Kingdom.

This paper sets out the reasons why we are not able to support the Terminally Ill Adults (End of Life) bill following report stage.

Many of our concerns echo those voiced by the Royal College of Psychiatrists, Royal College of Physicians and Association of Palliative Medicine.

We do not believe the bill has received sufficient scrutiny for legislation that will so fundamentally impact the relationship between doctor and patient.

For the Abortion Act there was months of engagement prior to introducing the bill and for the Human Embryology and Fertilisation Act, there was the Warnock Commission.

For this bill there has been no direct consultation with marginalised groups and the speed and inaccessibility of the passage of the bill has been a barrier to engagement.

The equalities impact assessment is frighteningly lacking and there has been insufficient consideration of adverse equalities impacts in jurisdictions where it is legal.

For example, a lawsuit is being brought against California’s End of Life Option Act on the grounds that it puts disabled people at greater risk of being coerced into seeking assisted suicide.

At the same time, the opinions of professionals with the most relevant expertise have been largely ignored.

Below we set out our key concerns with the bill as it now stands, a list of the amendments we supported which would have improved safeguards but which were voted down and a list of amendments that have been held up as safeguards but which fail to ally our fears.

This paper concludes with our recommendations for MPs.

KEY CONCERNS

No guaranteed access to palliative care. The bill places a duty on the Secretary of State to guarantee access to assisted dying but not to palliative care. Where deaths in pain do occur, the person has not accessed specialist palliative care or accessed it too late or for too short a time. One in four people who need palliative care do not get it. Palliative care provision across the country is patchy and facing cuts with hospice care under-funded.

No emphasis on suicide prevention. This is one key reason why the Royal College of Psychiatrists are against this bill. Suicidal ideation and hopelessness are treatable including for people with terminal illness. There is no mandatory psychological assessment as part of the application process and people who both meet the eligibility criteria for the bill and have mental health diagnoses are not excluded.

Inaccurate prognoses. People who are terminally ill with six month prognoses may have many months and even years left to live. According to figures from the Department for Work and Pensions, one in five benefit claimants given less than 6 months to live are still alive three months later. This makes it less inevitable that people with terminal illness should want to end their lives.

Inappropriate use of Mental Capacity Act as a safeguard. The MCA was not designed for this purpose and has a presumption of capacity. It is possible to be assessed under the MCA as having capacity and yet having impaired judgement due to for example, depression, malnutrition or coercive control. Doctors will be trained in coercive control but psychiatrists and other professionals report how difficult this is to detect even with many years of experience.

Insufficient provision for keeping people alive. Changes to a person’s circumstances can change their wish to die. The place for a multi-disciplinary team assessment is at the very beginning of the process with the aim of identifying options to improve the person’s situation. Instead, the bill has a multi-disciplinary panel at the end of the process rubber-stamping applications for assisted dying with no requirement to meet the person. There is no requirement for a doctor to consult a specialist in the patient’s condition or for the patient to have a meeting with a palliative care specialist. Patients will be able to access assisted dying more quickly and easily than social care, mental health support or suitable housing.

No requirement to include family members. Evidence from jurisdictions where assisted dying is legal demonstrates how traumatic it can be for family members to lose their loved ones in this way, especially if they do not find out until after and especially if their loved one made their decision when experiencing impaired judgement. There is no right to appeal assisted dying decisions for family members.

Safety concerns about assisted dying drugs. Death by assisted suicide can be very unpleasant. The patient needs to swallow a large number of pills which the body may reject resulting in vomiting. The drugs used as the same as used for death row prisoners and have been linked to, for example, experiences of dry drowning. The bill impact assessment says the “safety and efficacy” of substances used for assisted dying is “currently difficult to assess”.

Fear that assisted dying will replace access to services for terminally ill and disabled people wanting to live. The impact assessment shows savings that will be made to both health and social care budgets through this bill. This has increased concerns that the choice to live will be removed for those of us who cost more in support. One care home group finance manager messaged colleagues about savings they could realise through “aggressive promotion” of assisted dying as an option for residents. The voting down of an amendment to limit advertising of the assisted dying service alongside costs in the impact assessment for an NHS education campaign is concerning.

Insufficient attention to equalities impacts. The equality impact assessment accompanying the bill was not published until after Committee stage and is unfit for purpose. It concentrates on equal access to the assisted dying service and omits many key risks in terms of adverse inequalities impacts, ignoring data on for example low levels of awareness and access to palliative care services by racialised minorities and those facing socio-economic disadvantage.

Increasing non-assisted suicide rate. There is no evidence that legalisation of assisted dying reduces non-assisted suicides. Research on the contrary shows a rise in the overall suicide rate even after accounting for those deaths by assisted dying. This is likely due to suicide contagion. This risk needs to be understood within the current UK context of escalating levels of mental distress and already increasing suicide rates. There has been no discussion of this or proposal of measures to mitigate this risk.

Too great a reliance on Henry VIII powers. A worrying amount in the bill delegates powers to Ministers to make secondary legislation without full Parliamentary scrutiny. This is even more concerning for a bill that will prompt the founding Act of the NHS to be opened up. Deaf and Disabled people are disproportionately reliant on the NHS and potentially at significant risk from this bill. This aspect of the bill is therefore of great concern to us.

PROPOSED SAFEGUARDING CONCERNS THAT WERE VOTED DOWN

To close the anorexia loophole. The bill gives eligibility to people where the physical condition that meets the criteria is either the result of a mental health condition or of Voluntary Stopping Eating and Drinking. This is a huge concern within the context of a mental health system unable to cope with demand where young women with severe and enduring eating disorders are routinely labelled as “hopeless cases” and transferred onto palliative instead of receiving the support they need to live. In other jurisdictions Voluntary Stopping Eating and Drinking (VSED) is used by people who don’t otherwise meet the eligibility criteria to gain access to assisted dying.

To exclude from eligibility people with who are homeless and prisoners. Disabled people are over-represented among both as are self-harm and suicidal ideation. Homelessness and conditions in prisons are growing problems. These amendments would have protected against people choosing assisted dying because of adverse external factors rather than the “clear, settled and informed wish to die” that is part of the eligibility criteria within the bill.

Doctors to ensure that there are no remediable suicide risk factors before proceeding to the initial discussion about assisted dying and for psychosocial assessments to be conducted at the start of the process. These amendments would have provided a safeguard against people with impaired judgement seeking assisted dying due to a mental health condition and/or suicidal ideation.

To exclude from eligibility those seeking assisted dying for the benefit of others. This could include financial concerns. This amendment would have been an important safeguard against coercion.

To exclude from eligibility those seeking assisted dying because they feel like a burden. This is particularly relevant within the context of inadequate social care support services so that family members and friends experience greater strain. Around one half of those seeking assisted dying in Oregon consistently cite being a burden as a primary reason compared to one third concerned about pain.

To replace use of the Mental Capacity Act to assess capacity to make a “clear, settled and informed wish to die” with a new ability test to assess ability to make a clear, settled and informed wish to die free from impaired judgement.

For doctors not to be able to raise assisted dying with patients unless they mention it first. This is a major concern for disabled people due to the prevalence of negative medical attitudes towards disabled people’s quality of life and the risk of medical coercion. This risk is evidenced by experiences during COVID when Do Not Resuscitate orders were unlawfully placed on the medical notes of disabled people without their consent as well as a weight of evidence concerning discrimination and medical negligence within the health system. An amendment not to permit doctors to raise assisted dying with children was voted down at Committee stage but accepted at Report stage.

To prevent doctors from raising assisted dying as an option with people with learning disabilities and people who are autistic. Instead, clause 20 provides access to independent advocates for people in this situation.

Inclusion of a 28-day period between a terminal diagnosis and the start of the assisted suicide process. This is important because fear and depression are common responses to terminal diagnoses. Practitioners in other jurisdictions told the Committee at oral evidence how giving patients the option of assisted dying when first diagnosed calms their fears and that many never end up taking the drugs because their fears over pain never materialise. As proven by the lived experience of our members, the same can be achieved by better support accompanying diagnosis, including, crucially, peer support.

AMENDMENTS THAT FAIL TO ALLAY CONCERNS

Training for doctors in coercive control.

According to professional opinions shared with the Committee, it is very difficult even for those with many years of experience to detect coercive control.

Much stronger safeguards would have been making psychological assessments mandatory as part of the application process and excluding from eligibility those feeling a burden and those acting for the benefit of others.

Provision of independent advocates for “qualifying persons” including “those with learning disabilities, mental disorders, autism or other ‘substantial difficulties’ in understanding processes or information”.

The focus of this clause is on access to information rather than protection from coercion. As a safeguard it is limited in that those willing to act as independent advocates will likely be in favour of assisted dying and may therefore have a bias towards ensuring access to the service that clouds their alertness from detecting coercion.

It is unclear from where the independent advocates for this role will be sourced.

New multi-disciplinary panel including a psychiatrist and social worker.

This will replace the role of the high court judge in rubber stamping approvals at the end of the application process and with no requirement to meet the person or involve their family.

The proper place for this panel is at the beginning of the process.

Multi-disciplinary team involvement is good practice when needing to identify holistic solutions for improving a person’s situation.

The role of the multi-disciplinary panel as prescribed by the bill represents a mis-use of MDT involvement. It will not enable the psychiatrist or social worker to utilise their expertise.

Professionals willing to be on these panels will likely be in favour of assisted dying and may therefore have a bias that limits their ability to detect coercion.

It is also unclear how these panels will be resourced given shortages within both psychiatry and social work.

RECOMMENDATION

We urge MPs to vote against this bill at third reading. A Private Members Bill is not the way to legislate on such a complex issue and one that puts large groups of the most disadvantaged members of society at significant risk for the benefit of a small minority. A Royal Commission where objective scrutiny can take place and that hears equally from all sides of the debate is needed. Due to insufficient transparency in jurisdictions where assisted dying is legal there is a dearth of evidence. Attempts to remedy this and to plug research gaps must also happen.

Response to Terminally Ill Adults (End of Life) bill Equality Impact Assessment

All Posts, Assisted Dying Bill, Disability Rights No Responses »

Jun 182025

By the UK DDPO Monitoring Coalition June 2025

Introduction

1. The Equality Impact Assessment for the Terminally Ill Adults (End of Life) bill was published alongside the impact assessment on 2 May 2025.

1. For a bill that proposes such fundamental changes to the practice of medicine in England and Wales, this was inexcusably late on in its passage through Parliament.

1. Due regard for equalities impacts should occur at the beginning of any new initiative and inform the development of that initiative. An EqIA should not be treated as a bolt on extra.

1. We have significant concerns about the content of this EqIA and agree with commentators who have raised concerns about its adequacy.¹

1. It takes at face value safeguards contained within the bill despite concerns raised by numerous professional bodies, organisations and individual witnesses as to their lack of strength.

1. It also misses a number of potentially significant adverse equalities impacts and therefore also fails to propose measures to mitigate the risk of those.

1. A criticism of the passage of the bill shared by doctors and Deaf and Disabled People’s Organisations (DDPOs) is the lack of engagement and account taken of our respective views, informed by expert opinion and lived experience, as well as those of other marginalised groups.²

1. The EqIA is one example where our input would have been beneficial.

Summary of concerns

1. Lateness of publication – the EqIA was published on 2 May, more than a month after the end of Committee stage and just two weeks before the first report stage debate.

1. Coercion – the EqIA gives an inadequate assessment of risks of coercion and the strength of safeguards contained within the bill.

1. Capacity – the EqIA fails to note question marks regarding the appropriateness of the bill’s use of the Mental Capaity Act (MCA) as a safeguard.

1. Lack of disability understanding – mental health is inappropriately included as a separate category distinct from disability.

1. Adverse equalities impacts gaps and omissions – there are a number of potential adverse equalities impacts relevant to the bill that are not included within the EqIA.

1. These include:

1. 1. Disability – risk due to inadequate services to live

1. 1. Disability – risk of medical coercion

1. 1. Disability – risk from failure to exclude anorexia and voluntary stopping of eating and drinking

1. 1. LGBTQ+ – risk from fear of accessing palliative care services due to discrimination

1. 1. Racialised communities – lack of awareness and lower referral levels for end of life services

1. 1. Socio-economic disadvantage – risk of seeking assisted dying as a response to poverty

1. 1. Women – risk of coercion owing to inability to continue care-giving roles within the family

1. 1. Intersectional impacts for Disabled people experiencing socio-economic disadvantage; members of the LGBTQ+ community living with mental distress; women experiencing socio-economic disadvantage who are therefore at higher risk of domestic abuse

1. 1. Wider societal impacts including risk of an increase in non-assisted suicide rates and increased levels of disability hostility and hate crime

7. The EqIA is unfit for purpose and increases our already significant concerns regarding the adequacy of safeguards in the bill and its potential to cause adverse equalities impacts.

1 https://x.com/soniasodha/status/1918341432282083670

https://x.com/kesleeman/status/1918333123625947556

2 https://news.sky.com/story/its-simply-not-safe-a-thousand-doctors-write-to-mps-urging-them-to-vote-against-assisted-dying-bill-13380847

For the full document, download the Response to EqIA (.docx format)

Terminally Ill Adults (End of Life) Bill – briefing from UK DDPO CRDP Monitoring Coalition

Assisted Dying Bill 1 Response »

Nov 162024

We are a secular, human rights network of organisations run and controlled by Deaf and Disabled people (DDPOs) from across the UK.[1] We monitor and campaign for implementation of the UN Convention on the Rights of Disabled People, promoting the interests of 16.1 million Disabled people.[2] This includes those who are terminally ill and who live with progressive, life-threatening conditions.

The debate around legalisation of assisted suicide[3] (AS) requires profound sensitivity and compassion. On both sides of the argument are lived experience of pain, suffering and distress.

The implications of this Private Members’ Bill (PMB) are far-reaching with serious potential consequences. There is no straightforward way to legalise AS and the issues involved are complex. There are no clear lines, only blurred boundaries.

This is why no DDPO in the UK is in favour of legalisation. Additionally, all medical bodies remain opposed or neutral on the subjects. Doctors working in specialities such as oncology, geriatrics and palliative care, those where they are most likely to work with dying people, are the most opposed.[4]

We urge Parliamentarians to rigorously engage with all perspectives and the evidence base on which they rest.

Our key concerns are as follows:

LIMITING ELIGIBILITY AND SAFEGUARDING
Need to consider in detail lessons from other jurisdictions where AS is legal.
Pressures to extend eligibility. This has happened in ALL jurisdictions where it has been legalised so far. Legal experts warn the same will happen here. Pressure is already being exerted to within Westminster and by the main campaigning organisations in favour.
Risk of abuse and need to consider whether AS can ever be safely legislated for.

NEED FOR PROPER SCRUTINY

Legalisation entails a fundamental shift in society but a PMB gives little scope for scrutiny.
Need for extensive pre-legislative work by an independent commission.
Inadequacy of the health and social care select committee inquiry as a basis for legislation.
Need to question unconscious assumptions about quality of life.

FIX THE FOUNDATIONS FIRST

Palliative care is in crisis. Choice at the end of life must include the choice to die at home and to die naturally in as little pain as current medical knowledge can provide for.
Services (NHS, social care, mental health) to support those who live in pain and distress are broken. Assisted suicide must not become a replacement for public services.

For more detail on the above see the following pages / go to: https://dpac.uk.net/2024/10/choice-at-the-end-of-life-bill-briefing-from-uk-ddpo-crdp-monitoring-coalition/

1) LIMITNG ELIGIBILITY AND SAFEGUARDING

These two issues are of fundamental importance to the question of legalisation. There are no easy answers to either.

Any legislation must robustly safeguard against abuse. The risks are too big to disregard.

Those who are well-intentioned often under-estimate the capacity of others to take advantage of those whose situations make them vulnerable. Harsh reality is evidenced by the fact that Disabled people are statistically more likely to be victims of crime and abuse than non-Disabled people. We are three times more likely to be the victims of domestic abuse.[5]

Consideration of adequate safeguarding must be informed by a full understanding of the factors involved in abuse and exploitation of those at the end of life, of the complex dynamic between carers and those needing support and of established difficulties not only spotting but also addressing abuse.

Examples of abuse from other jurisdictions where AS is legal must be carefully explored including reports of coercion pushing individuals to end their lives against their wishes[6] and the situation in Canada where AS has been linked to human rights concerns.[7]

Widening of the original eligibility has occurred in ALL jurisdictions where AS has been legalised.

Eligibility is a complex issue to begin with. It is not possible for doctors to give an accurate prognosis of how much longer a person has left to life. This makes it difficult to limit eligibility to those with only a set time left to live naturally and makes legislation vulnerable to extension.

In Oregon, the list of diagnoses covered by the definition of terminal illness under AS legislation has grown and now includes, for example, anorexia,[8] and diabetes.[9]

In 2021, the Canadian Parliament voted to extend their Medical Assistance in Dying (MAiD) programme to people with mental health conditions.[10] The introduction of this expansion has been paused until 2027.[11] Meanwhile, from 30 October, the Canadian province of Quebec started allowing people with incurable diseases or in the early stages of dementia to make advance directives specifying conditions under which they could receive medical assistance in dying without giving further consent.[12]

In four out of eight of the jurisdictions where AS is legal, young people living with mental distress who might otherwise have lived decades have been granted euthanasia. One study found that the majority of people labelled with personality disorders who have been granted EAS (euthanasia or assisted suicide) had not received any relevant evidence-based treatment.[13]

With wider eligibility, one of the areas of greatest concern involves questions of mental capacity, coercion and abuse of advance directives.

KC Alex Ruck Keene, who is a legal expert in mental health and mental capacity law and who represented Noel Conway, a man with Motor Neurone Disease who took his legal challenge fighting for the right for assisted suicide to the Supreme Court, says the idea that capacity is straightforward is “hopelessly naïve” and stresses that Parliament has to be aware that working it through is not immediately straightforward.[14]

In the Netherlands, there have been cases where people labelled as not having capacity have been held to advance directives made at a different time in their lives and forcibly killed against their wishes. There is one report from the Netherlands of a person being physically restrained by relatives, in order for the physician to administer the lethal dose.[15]

It is also not uncommon for patients to use physical conditions to access euthanasia or AS while motivated by reasons that are outside the eligibility criteria such as depression, loneliness[16] or homelessness.[17]

The percentage of those granted AS in Oregon who cite financial concerns as one of the reasons for their decision has been steadily rising over recent years.[18]

Inadequate pain control remains as an end of life concern for only around one third with loss of autonomy and inability to participate in enjoyable activities scoring highest.[19] Figures for those citing that they “feel a burden” remains at around one half.[20]

Autonomy and being a burden are distinctly different concepts from end-of-life pain.

They are also ones with which Disabled people are extremely familiar.

We understand that there is no inevitable connection between reliance on assistance to live and a desire to die.

If given the chance, and with the right support, people can and do adapt to circumstances they once imagined they would find intolerable.[21]

We have read reports of lobbying by MPs who support legalisation for the PMB to include those who are “incurably suffering”[22].

Many of those campaigning for the right to take their lives through assisted suicide will not qualify under Leadbeater’s bill so legal challenges on the grounds of discrimination will inevitably follow any passage of the bill into legislation.

A dozen human rights barristers and legal scholars have warned that the Leadbeater bill could breach the European Court of Human Rights by denying some groups access to AS while granting it to others.[23]

We urge Parliamentarians to seriously consider whether AS can be safely legislated for in any form; and, not to allow any legislation to pass that is both without adequate safeguards against abuse and against future widening of eligibility beyond the original intention.

2) NEED FOR PROPER SCRUTINY

The question of AS legalisation requires time for extensive study, evidence-based discussion and heavy scrutiny.

Legislation will turn an abstract idea into a reality with enormous implications, impacting the lives and deaths of millions of individuals as well as touching the lives of all those who care what happens to them.

Anecdotally, we know of family members of those who have chosen to have their lives ended through the MAiD programme in Canada left bereft that they never had a chance to try to change their lived ones’ minds.[24]

“…none of her immediate family knew that Ms. [Wilma] Hertgers had been approved for medical assistance in dying, let alone set a date. Not her 88-year-old mother, whom she called twice a day. Not her older brother, who lived one town over. And not Mr. Hertgers, 61, [her other brother] who had only that Friday, after driving the four hours to Chilliwack, B.C., shared a pot of tea at Wilma’s kitchen table.”[25]

It will change the essential nature of the role of the physician.

At the same time, it represents a fundamental shift in society from one where State intervention in the lives of its citizens is concerned with saving and extending life to one where it also provides for assistance to end one’s life.

KC Alex Ruck Keene has warned:

“That’s the thing I think is very difficult in this space to think about. Because you have individual stories which are very, very powerful, and we’ve got lots of other individual stories out there in the public domain at the moment. But the law can’t operate for individuals. The law has to operate for everybody.”[27]

Parliament will only be able to do this ONCE.

Any gaps or oversights will have profound consequences.

Professor of Health Care Ethics, Theo Boer, who was originally in favour of AS legalisation when it was passed in the Netherlands and is now a strong critic, has warned:

“We [in the Netherlands] have put in motion something that we have now discovered has more consequences than we ever imagined.”[28]

It is welcome that the second reading of this bill is scheduled for later than anticipated on 29 November 2024. However, the timeframe for adequate consideration of the many complex facets of this question is still inappropriately tight.

The Government has made it clear that it will not take any steps towards legalisation and this will only happen through Parliament, should its members choose to.

It remains the case that the more limited Parliamentary scrutiny given to PMBs makes this an unsuitable mechanism for enacting legislation on this issue.

It feels extremely unfair for new Parliamentarians to be asked to vote on an issue of this magnitude while they are still finding their feet.

A law of this nature requires extensive pre-legislative work by an independent, properly resourced commission.

The inquiry undertaken by the health and social care select committee in 2023 does not provide an adequate basis for legislation and does not negate this need.[29]

The committee’s aim was to publish a report to serve as a basis for discussion and debate in future Parliaments, and not to inform the drafting of actual legislation.

The conclusion to the report states:

“The debate on AD/AS is not new, and our report is not intended to provide a resolution to it.”[30]

Those with decision making-powers on this question must have the chance to reflect on unconscious assumptions about quality of life and what makes a life worth living that may influence their ideas on the subject.

There are people in the same situations, living with the same levels of pain, distress, physical limitations and/or degenerative conditions as those campaigning for legalisation who are opposed to it.

It is important to understand the different perspectives.

Nicki Myers, a Disabled woman who lives in Cambridge, said:

“I’ve been a Disabled person for my entire life but I was diagnosed with a terminal condition in 2017. I have almost died so many times and then I’ve rallied. I did not expect to still be alive now. I’ve been able to support my children and grandchildren, paint portraits from my bed, spend time with friends. My view on assisted suicide has never wavered, despite some very difficult times. In the UK, we do not have sufficient health and social care support or adequate palliative care or hospice services for legalisation to be safe. I have been reassured by the doctor at my hospice about my last days. Everyone should be able to access services to give them a good death.”

We urge Parliamentarians to ensure they have adequate time and information to give due scrutiny to legislation of such a profound nature.

3) FIX THE FOUNDATIONS FIRST

AS must not become a way of plugging gaps left by broken services.

The UK must not follow in Canada’s foot-steps where human rights experts continue to express “alarm about the significant human rights concerns” presented by inadequate safeguards and the proposed expansion of MAiD.[31]

The Canadian Human Rights Commission is particularly concerned about reports that Disabled people are applying for and being granted MAiD because:

“ they cannot access the basic supports and services they need to live with dignity.”[32]

They have stated that:

“MAiD cannot be a default for Canada’s failure to fulfill its human rights obligations”[33]

This is a situation that could very easily happen here under current conditions.

Dr Bob Gill, a family doctor for over 20 years, said:

“I strongly oppose the concept of assisted dying because there is a great risk that the patient’s decision is shaped by many external factors including the sense of guilt and anticipation of suffering… Our fight should be for better funding and access social services, restoration of benefit payments and high-quality public service.”

More than 3,400 NHS staff have warned against putting an added burden on the ‘broken’ NHS by legalising assisted suicide.[34]

In the letter, 2,038 doctors, 905 nurses, and 462 other healthcare workers expressed their concerns, saying:

“The thought of assisted suicide being introduced and managed safely at such a time is remarkably out of touch with the gravity of the current mental health crisis and pressures on staff.”[35]

The letter added that the:

“Any change would threaten society’s ability to safeguard vulnerable patients from abuse; it would undermine the trust the public places in physicians; and it would send a clear message to our frail, elderly and disabled patients about the value that society places on them as people.”[36]

Palliative care is in crisis and increasingly unable to meet the needs of those requiring support to die with dignity and with as little pain as possible.

The Association for Palliative Medicine opposes any change in the law that could lead to the supply or administration of lethal medications to deliberately end a person’s life.[37]

84% of respondents to a survey carried out by the British Medical Association who work in palliative care said they would not be willing to actively participate in the process of prescribing life-ending drugs.[38]

A survey carried out by King’s College London found that over 100,000 people in the UK die each year needing palliative care but do not receive it, and inequalities in accessing care, including among people from ethnic minority groups, are common.”

Professor Katherine Sleeman, from the Florence Nightingale Faculty of Nursing, Midwifery & Palliative Care at King’s College London said:

“The shocking gap in the public’s understanding of palliative and end of life care also needs to be addressed… It is essential that we address the disparities that create additional barriers for people to access the care that they need.” [39]

Palliative care has long been chronically under-funded with hospices relying on charity for the majority of their income.

According to data published by Hospice UK in September 2023, England’s adults’ hospices experienced a real-terms cut in their Government funding of £47m in the preceding two years.[40] None received any uplift in line with inflation over that period.[41]

Toby Porter, CEO of Hospice UK said:

“On average, only one third of adult hospice income comes from the state, leaving hospices to rely on charitable donations to pay for the majority of their vital work. With the cost of living crisis affecting everyone, many hospices are increasingly concerned that their local communities will not be able to continue to give as generously.”[42]

Many palliative care professionals fear that AS legalisation will lead to further reductions in funding justified on the basis that money will be saved through elimination of support costs for those opting to end their lives early.

This will mean increased denial of palliative care services to those who want and need them.

Anecdotally, we know of State funded palliative care services making frontline redundancies due to funding cuts. Staff working in the community fear they will be the first to go, removing patients’ choice to die at home.

Choice at the end of life is only meaningful if it includes the choice to access palliative care support right up until a natural end.

It also requires adequate support to continue living where there is no immediate terminal prognosis.

Sadly, the situation in the UK is far removed from this.

The Prime Minister has described the NHS as broken.[43] Social care and mental health services are in the same desperate state.[44] [45] There is also a housing crisis[46] and figures show that poverty rose dramatically among Disabled people even before the cost-of-living crisis.[47]

In 2016, an unprecedented special inquiry by the United Nations Committee on the Rights of Disabled People found the UK government guilty of grave and systematic rights violations. Two of the three areas on which the inquiry focused were support to live in the community, and income and adequate social protection.

Disabled people have direct and often very distressing lived experience of the impact of inadequate service levels, staff shortages and long waiting lists not just on our own lives but also on those of loved ones left to take the strain.

Nathan Lee Davies, a Disabled man with Friedreich’s Ataxia, a progressive genetic condition of the nervous system said:

“The median age of death for someone with my condition is 35. I am 47. None of us know what is around the corner and this is why I passionately oppose assisted suicide.

“We all have a role to play in society. The main problem now is that people with impairments are overlooked and denied the services we need to express our creativity and be part of our communities. I have written three books and produced art works and there is more I passionately want to do.

“But I am currently tied up in a battle with my Local Authority who would rather tie me up in red tape. I haven’t seen a social worker in the past year and a half. I have a continual nightmare recruiting suitable Personal Assistants. Without support I am unable to eat, drink, use the toilet or wash, I can’t write or reply to emails from friends. I should be enjoying the final years of my limited life but instead I am trapped inside my bungalow.”

Disabled people in the UK are in urgent need of adequate support to meet our most basic needs.

In jurisdictions where eligibility has widened beyond terminal illness, our peers are choosing to end their lives not because of pain but because they are not able to access support to participate and contribute to society.

There are also anecdotal reports of Disabled people being inappropriately offered, pressured or made to feel guilty by professionals because they are choosing to carry on living and not opting to kill themselves.[48]

We urge Parliamentarians to be on the side of real and meaningful choice – not only over the deaths of individuals who live with pain and distress but also over the right of millions of Disabled and older people to live.

For more information contact: mail@dpac.uk.net

Additional resources

Documentary

Better Off Dead? A documentary on assisted suicide, authored by actor and disability rights activist Liz Carr.

Journal articles and research

Assisted death in eating disorders: a systematic review of cases and clinical rationales – https://www.frontiersin.org/journals/psychiatry/articles/10.3389/fpsyt.2024.1431771/full

Assisted dying: Quebec allows advance directives, defying federal ban – https://www.bmj.com/content/386/bmj.q2029

Euthanasia and assisted suicide in patients with personality disorders: a review of current practice and challenges – https://bpded.biomedcentral.com/articles/10.1186/s40479-020-00131-9

Oregon Death with Dignity Act access: 25 year analysis – https://spcare.bmj.com/content/early/2024/04/05/spcare-2023-004292

Psychiatric euthanasia, suicide and the role of gender – https://www.cambridge.org/core/journals/the-british-journal-of-psychiatry/article/psychiatric-euthanasia-suicide-and-the-role-of-gender/936B360C6B2AEF2CA5360357ED8CF020

Terminal anorexia nervosa is a dangerous term: it cannot, and should not, be defined – https://jeatdisord.biomedcentral.com/articles/10.1186/s40337-022-00599-6

The Dangers of Physician Assisted Suicide in Eating Disorders – https://static1.squarespace.com/static/58e4b708f5e2312cc949b8b4/t/66e828dde88bf757b8f0acc3/1726490860329/Assisted+Suicide+in+Eating+Disorders+Report+-+US+Version.pdf

Lived Experience

Canada – https://living-with-dignity.ca/remembering-lives-lived/

Media articles and press releases

Assisted dying/assisted suicide: Too many “complicating factors” to be safely implemented, says British public in new poll

https://www.bbc.co.uk/news/world-us-canada-68120380

https://www.chrc-ccdp.gc.ca/en/resources/ending-ones-life-must-be-a-true-and-informed-choice

https://www.dailymail.co.uk/news/article-14067911/Doubts-Assisted-Dying-Bill-grow-doctors-nurses-warn-added-pressures-broken-NHS-campaigners-insist-people-hope.html

https://www.hospiceuk.org/latest-from-hospice-uk/hospice-funding-falls-short-ps47m

https://www.independent.co.uk/news/world/americas/canada-euthansia-maid-gofundme-homeless-b2228890.html

https://www.kcl.ac.uk/news/65-of-adults-are-worried-about-access-to-palliative-care

https://www.politicshome.com/thehouse/article/alex-ruck-keene-kc-assisted-dying-parliamentarians-radically-unsupported

https://www.telegraph.co.uk/politics/2024/10/05/widen-access-to-assisted-dying-say-labour-mps/

https://www.telegraph.co.uk/politics/2024/11/09/assisted-dying-echr-discrimination-human-rights/

https://www.theguardian.com/news/2019/jan/18/death-on-demand-has-euthanasia-gone-too-far-netherlands-assisted-dying

https://www.theguardian.com/society/2023/jul/13/anorexia-right-to-die-terminal-mental-health

https://www.theguardian.com/world/2024/feb/25/canada-assisted-dying-laws-in-spotlight-as-expansion-paused-again

Position statements and briefings

Association for Palliative Medicine [APM] – https://apmonline.org/wp-content/uploads/APM-Position-Statement-on-Assisted-Dying-October-2024-v2.pdf

BMA – https://www.bma.org.uk/advice-and-support/ethics/end-of-life/physician-assisted-dying/physician-assisted-dying-survey

Joint Statement Against Assisted Suicide For Eating Disorders – https://www.eatbreathethrive.org/joint-statement-assisted-suicide

Reports

Report from the health and social care select committee inquiry into assisted suicide: https://publications.parliament.uk/pa/cm5804/cmselect/cmhealth/321/report.html

Written evidence submitted to health and social care select committee inquiry:

Professor of Palliative Care, Baroness Finlay

Professor of Health Care Ethics, Theo Boer

Ministry of the Solicitor General | Office of the Chief Coroner MAiD Death Review Committee Report 2024 – 3 2024 Navigating Vulnerability in Non-Reasonably Foreseeable Natural Deaths

Website

https://notdeadyetuk.co.uk/ The website of Not Dead Yet UK, a UK-based network who are part of a global alliance of disabled people, who oppose euthanasia and assisted suicide.

Stop the Assisted Dying Bill!

Assisted Dying Bill 2 Responses »

Nov 022014

On Friday November 7th the ‘Assisted Dying Bill’ returns to the House of Lords to be debated and amended line by line.

We have to show the Lords, the public and the media that disabled people do not want to give doctor’s the power to end our lives. We do not want the state sanctioned killing of old, ill and disabled people of all impairments.

We do not want to legalise assisted suicide.

This Bill is not safe!

We want support to live, not to die.

We have to stop this before it begins.

If we don’t, who will be next?

We have no choice but to protest.

Not Dead Yet UK plans to be outside the Lords in a show of opposition that no one will want to miss.

We’ll be gathering from 8 am at the Methodist Central Hall where the cafe will be open and there are accessible toilets.

https://www.methodist-central-hall.org.uk

From there, we’ll be making the 5 minute push to the statue of George V, opposite the Houses of Parliament, Abingdon Street, London, SW1P 3JY (where we were last time).

We know this is early for many of us but please, if you can get there at any time before 10.30 am, please join us. If you’ll be arriving after 9 am, go straight to the George V statue.

We should be finished by 11 am at the very latest.

If you need support – financial or otherwise, it may be possible for us to help out. Please contact us on: 0797 0959791

This is a matter of life and death – please join us on the 7th November to say Kill the Bill, Not Us!

#notdeadyetuk

DPAC

Disability News Service 26th June

Contents

Disabled MP who quit government over benefit cuts tells DNS: ‘The consequences will be devastating’

Disabled peers plan to ‘amend, amend, amend, amend, amend’ after assisted dying bill reaches Lords

Minister finally admits that working-age benefits spending is stable, despite months of ‘spiralling’ claims

This bill opens the door to scandal, abuse and injustice, disabled activists say after assisted dying bill vote

Timms says cuts must go ahead, despite being reminded of risk that disabled claimants could die

Absence of disabled people’s voices from assisted dying bill has been ‘astonishing’, says disabled MP

Timms misleads MPs on DWP transparency and cover-ups, as he gives evidence on PIP review

Ministers are considering further extension to disability hate crime laws, after pledge on ‘aggravated’ offences

Making all self-driving pilot schemes accessible would be ‘counter-productive’ and slow us down, says minister

Involve disabled people ‘meaningfully’ from the start when developing digital assistive tech, says report

Other disability-related stories covered by mainstream media this week

Briefing: Terminally Ill Adults (End of Life) bill

UK Deaf and Disabled People’s Monitoring Coalition

Response to Terminally Ill Adults (End of Life) bill Equality Impact Assessment

By the UK DDPO Monitoring Coalition June 2025

Introduction

Summary of concerns

Terminally Ill Adults (End of Life) Bill – briefing from UK DDPO CRDP Monitoring Coalition

Stop the Assisted Dying Bill!