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Telegraph
11 hours ago
- Health
- Telegraph
‘I'm living proof why assisted dying Bill is wrong'
On Thursday, Ailidh Musgrave, 28, was discharged from mental health services. Just six years ago, the picture was very different. In 2019, Ms Musgrave was so sick with anorexia that she is sure she would have not only met the criteria for assisted dying, as set out in the Bill MPs are debating on Friday, but she would have jumped at the chance for medical assistance to end her life. 'If I'd known that there was a Bill out there like this, I would have done my absolute best to access it in order to take my life, because I couldn't see a way out,' she told The Telegraph. The potential impact of Labour backbencher Kim Leadbeater's assisted dying Bill on people with severe eating disorders is one of the key concerns that could see MPs reject the plans. The Terminally Ill Adults (End of Life) Bill, under which terminally ill adults expected to die within six months would be able to seek medical assistance to end their lives, initially passed by 55 votes in November. It could become law if enough MPs back it in an historic vote on Friday. However, the vote is said to be on a 'knife edge' after a series of controversies, including on issues relating to conditions like anorexia. Ms Leadbeater has claimed the so-called 'anorexia loophole' – a gap in safeguards that means sufferers could qualify for assisted dying on the basis of life-threatening malnutrition – has been closed. At a press conference on Thursday, the MP for Spen Valley told The Telegraph she believed her support for an amendment from MP Naz Shah, which would ban eligibility based solely on a voluntary refusal to eat or drink, addressed the concerns. 'In terms of amendment 14, my understanding was that that was why it was tabled, so that's why I supported it,' she said. But in the final 24 hours before the vote, experts said this claim was incorrect. Dr Annabel Price, the lead for assisted dying in England and Wales at the Royal College of Psychiatrists (RCPsych), told The Telegraph: 'If the Bill were to proceed, it is essential that it excludes the physical effects of mental disorder as the basis for eligibility. 'Malnutrition caused by anorexia nervosa, for example, has been deemed as a terminal illness under similar pieces of legislation in other jurisdictions.' The RCPsych, along with eating disorder charity Beat, has for months urged Ms Leadbeater to back an amendment that would prevent patients from qualifying on the basis of life-threatening physical complications stemming from a mental illness. But she has refused to do so. On Thursday night, Tom Quinn, director of external affairs at Beat, told The Telegraph: 'Eating disorders should never be treated as terminal – without changes to this Bill, there's a danger that they will be. 'While we acknowledge that the Bill is not intended for the use of patients with eating disorders, there is a risk that some patients with eating disorders may qualify as being terminally ill based on physical symptoms of malnutrition such as kidney and heart failure.' Mr Quinn said that unless a clear amendment was passed to exclude eligibility based on the physical consequences of mental illness, 'the anorexia loophole is not closed', and the charity remained 'very concerned about the risks the Bill would present to those with eating disorders and urge MPs to oppose it.' Ms Musgrave, who is autistic, began suffering from a severe eating disorder aged 13. In 2019, she had also just been diagnosed with a connective tissue disorder, which made it harder for her body to digest food, and had given up hope of recovering. By this point, she had been in and out of hospital for years and was now struggling to access further treatment. 'I think 26 hospital placements rejected me in the 20 weeks that my team was looking for a bed because my needs were 'too complicated'. I think that the interaction of physical health, the eating disorder and the autistic diagnosis, it's a lot of people to untangle and manage. I think with what I was living off, I would not have, I would certainly not have lasted six months to live,' she said. Ms Musgrave, from Birmingham, was finally admitted to a general psychiatric unit which could not provide specialist eating disorder treatment, and in May of that year moved to a general hospital ward where she continued to lose weight. 'I'll be honest, I think it's down to my mother coming in every day to try and encourage me to eat what little that I would, that actually kept me alive, but barely kept me alive. I had a very low BMI,' she said. 'My mum knew I was desperate to die' The combination of her physical condition – Ehlers-Danlos syndrome – and over a decade of suffering from anorexia, left her feeling hopeless, and she is sure that if Ms Leadbeater's bill had been an option, she would have gone for it. 'It was my ninth admission. I didn't have any qualifications, I had no friends, I was fully dependent on my mum, and I was very, very high risk to myself, and just did not see the purpose of life, if it was this torturous,' she said. Ms Musgrave added: 'My mum said to me later in recovery, that she actually could understand why I was desperate to die, seeing me in the condition I was in, the state that I was, she understood that it would have been kinder and less painful than living every day as I was, and that must have been so hard for my mum to say after having fought for my life and my care for so many years.' She is speaking out now in the hope of reaching undecided MPs who may not be aware that the Bill could make it legal for people suffering from severe anorexia, as she was, to be given lethal drugs by doctors to end their lives. In June 2019, Ms Musgrave was eventually transferred to a London specialist unit where she was sectioned under the Mental Health Act, meaning her treatment was mandated by doctors. She stayed there until May 2023. 'I think the only reason I'm alive is because, actually, they never gave up. I didn't always get the right support,' she said. 'Reasonable adjustments weren't made, but the fact is that they obviously saw something in me that showed them there was hope, and so they didn't let me go. They weren't going to give up, they weren't going to discharge me. They weren't going to say: 'You're hopeless, you're too complicated'. They stuck by me until I walked out of those doors two years and two months ago, and today [Thursday], actually, it's a very emotional day. I've just been discharged from my psychiatric team.' Tearfully, she added: 'I'm proof that you don't need to give up on someone, and that if you sit with them, that they can have a life that they never imagined that they could have. And I have that, I have a life I never thought possible. 'I never could believe it, but it's real and it's true and it's happening, and it's so sad that people may never get that chance because they are so under the control of anorexia that they feel the only option is to legally access assisted suicide.' 'The law was our daughter's only protection' Lesley and Neal Davison, from Cheshunt, Waltham Cross, can be more sure than most parents of eating disorder patients that their child would have tried to make use of Ms Leadbeater's Bill. The couple lost their daughter Megan to suicide in August 2017. She suffered from a dangerous combination of Type 1 diabetes and a serious eating disorder. This condition, previously referred to as diabulimia, and now known as T1DE, sees sufferers intentionally restrict the insulin they have to self-administer in order to control their weight. Just days before she took her own life, their 27-year-old daughter asked her care team for help getting a referral to Dignitas, the euthanasia clinic in Switzerland. The response she got back, her parents claim, was not that it was wrong because her condition was treatable, but that her care team would not be able to do it because they would be breaking the law. Her parents are adamant that the only thing protecting their daughter from accessing assisted dying was healthcare providers' fear that they could face prosecution, and are speaking out now to warn MPs of the dangers inherent in this law change. 'There is absolutely no doubt in our mind that if she had had the option of taking assisted dying, she would have taken it,' Mrs Davsion told The Telegraph. 'In fact, when she was asking her therapist: 'Can you put me together a dossier so I can go to Dignitas?' The answer was, 'You know I can't Megan, it's illegal'.' She added: 'That was her only protection – no exploring why she felt the need to make such a request. So if this Bill is passed would that request be granted, with the same lack of investigation?' Ms Davison was an articulate, intelligent woman who obtained a degree in psychology and wanted to be a teacher. Her father told The Telegraph: 'Megan asked us, in a suicide letter, to help the people that were dealing with this condition she was leaving behind, and in our retirement, that's become our job.' Ms Leadbeater argued during Thursday's press conference that other safeguards in her Bill would make it 'virtually impossible' for eating disorder patients to qualify for an assisted death – or if they did, that they would die before the process was complete. 'I just think that is not going to happen. There is no world where that is going to happen. And tragically that person will also die before she goes through that process [of approval for an assisted death],' she told reporters. That assurance will not be a comfort for families like the Davisons – and it may not be enough to persuade MPs.
Telegraph
14-05-2025
- Health
- Telegraph
The assisted dying Bill appeared to have unstoppable momentum. Now it's on shaky ground
It was always going to be divisive. For the past nine weeks, MPs have been debating a piece of legislation so significant that it is, quite literally, a matter of life and death. If it becomes law, the Terminally Ill Adults (End of Life) Bill, which reaches the next stage in Parliament this week, will allow adults diagnosed with a terminal illness and a six-month prognosis to be provided with assistance to end their own life. There are persuasive – and emotionally charged – opinions on both sides of the debate, but at one point it seemed as though the assisted dying bill had unstoppable momentum. Introduced as a Private Member's Bill by Kim Leadbeater, the Labour MP for Spen Valley, last autumn, it was approved in a historic vote on November 29. The last time Parliament voted on assisted dying was a decade ago, in 2015, when a proposed change to the law was overwhelmingly rejected. This time, it was voted through, albeit by a reasonably narrow margin of 330 MPs in favour to 275 against. On that wintery afternoon, a crowd of dozens of Dignity in Dying campaigners in Pepto-Bismol pink, the charity's signature colour, cheered, cried and embraced in Parliament Square, hailing a historic victory. Crucially, Leadbeater's Bill seemed to be building on a solid foundation of public and political support. YouGov polling has suggested that three quarters of Britons support handing the terminally ill the right to end their own lives. While the Government itself has remained neutral on the issue, the Bill has the tacit backing of the prime minister and a series of senior Cabinet ministers, all of whom voted in favour. However, as the Bill winds its way back to the Commons on May 16 – when all MPs will have the opportunity to propose and vote on further changes – there is a sense that it is on increasingly shaky ground. Critics have raised concerns that key safeguards have been removed from the legislation since the last time it was debated. A recent poll conducted by Whitestone Insight on behalf of the campaign group Care Not Killing suggested that more parliamentarians now oppose the Bill than support it. Of 100 backbenchers polled in March and April, 42 per cent said they intended to vote against the legislation at the third reading, while 36 per cent said they would back it. Another 13 per cent were undecided, 5 per cent said they intended to abstain, and 8 per cent preferred not to say. In November, the Bill was passed with a majority of 55, meaning only 28 MPs need to change their minds or abstain from voting for it to fail. A number are said to have decided to do so. Two Labour MPs and critics of the legislation told The Telegraph they know of several colleagues who have changed course and will vote against the legislation, but none has yet said so publicly. Reports on Wednesday suggested at least five unnamed MPs who had previously abstained will now oppose it. Three others were said to be considering changing their position. To date, only Reform MP Lee Anderson and Independent Rupert Lowe, who supported the Bill last year, have publicly declared they will reverse course and vote against the Bill. Adding to the sense of uncertainty over its prospects, research published on Wednesday showed that GPs are deeply divided on the issue. The BBC surveyed 5,000 practitioners, 500 of whom said they were against the law change, calling it 'highly dangerous' and 'cruel'. 'We are doctors, not murderers,' one said. (Four hundred GPs told the BBC they supported the legislation.) The Bill's second reading, which MPs voted on last November, was in fact only the first major hurdle it had to pass to become law. The next challenge was the committee stage, where the highly emotive debate around this issue would be translated, clause by clause, into the letter of the law. For a little over two months, the Bill has been painstakingly scrutinised by a representative committee of MPs selected by Leadbeater. It has been a gruelling process, with sittings lasting until 9pm and, on one occasion, past midnight. Leadbeater and her supporters say the Bill's safeguards have been strengthened. But after 90 hours of debate and 150 amendments, opponents argue that what has emerged from the committee meeting is far more dangerous than the Bill that went in. Unsurprisingly, the atmosphere has been charged. One member describes the mood in the committee meeting room as 'superficially courteous, but in reality quite fractious'. A Labour source close to the proceedings says: 'The 'pro' side have been running this like a campaign, so the legislation is a mess. There's a real sense it hasn't lived up to the promise.' One of the key critics is Tory MP Danny Kruger, who sat on the committee. He says the process has only solidified his strong opposition to the legislation. 'One Bill was sold at the second reading; another has emerged from the committee,' he tells The Telegraph, citing the removal of the High Court judge's role in overseeing each case, a key safeguard. Kruger claims a number of his colleagues supported the Bill in November only to see whether it could be strengthened at the committee stage, many of whom could now change their minds. 'I hope there will be a fair few who recognise that hasn't happened,' he says. Kruger has been strongly opposed to the legalisation of assisted dying from the start. But others, such as Sean Woodcock, the Labour MP for Banbury and a fellow committee member, were 'on the fence' before determining that the current Bill was unworkable. 'It took me a long time to make up my mind on how I would vote,' Woodcock says (he ultimately voted against). 'In principle, I am not opposed to assisted dying, but having worked on the committee, I have come to the conclusion that the Bill that is emerging is deeply flawed. All I've seen is that vital safeguards have been removed, and significant new risks have also emerged.' The most controversial change to the legislation is the scrapping of its requirement for a High Court judge to approve each assisted dying application, a provision which Leadbeater argued would make her Bill 'the most robust in the world'. The change was made after senior judges warned that courts would not be able to handle the increased workload. Instead, it is envisaged that a three-personnel panel of experts composed of a legal figure, a psychiatrist and a social worker will review each case. Meanwhile, plans for a two-year rollout have been extended to four years – reportedly a request from the Department of Health, headed up by one of the Bill's key opponents, Wes Streeting – amid fears that it would put further strain on an already overburdened NHS. Streeting, who voted to legalise assisted dying in 2015, has said that if the Bill becomes law, he is concerned that people may choose to end their lives prematurely because of the current state of the NHS. He has argued that Britain's palliative care system is unfit to support the change. Leadbeater has also faced criticism for rejecting amendments designed to put stronger protections in place for people with anorexia, among other vulnerable groups. There is still no process in place for family members to be involved in decision making, and significant questions remain over capacity and coercion. Equally crucial is the question of how, practically, assisted dying would actually work. It is still unclear whether private firms would be contracted, or all services would be provided by the NHS. The long-awaited impact assessment – published at 4pm on the Friday before the early May bank holiday weekend – states that legalising assisted dying would save the NHS up to £10 million in the first year of its legalisation, rising to up to roughly £60 million in its 10th year. It also predicts how many people would choose to die this way: between 164 and 787 in the first six months, rising to between 1,042 and 4,559 in the 10th year of its legalisation. Prof Louis Appleby, the Government's adviser on suicide prevention and mental health, described the report as 'stripped of moral values'. Seeing a cost-saving figure put on the plans will do nothing to reassure those who fear that people will be pushed into an assisted death as they feel they are burdening their loved ones or the state. Kit Malthouse, the Tory MP for North West Hampshire, sat on the committee selected by Leadbeater and is a key supporter of the Bill. 'It's a sensitive, complex issue of humanity and morality, and for some people, spirituality, and so it was never going to be easy,' he says. As the legislation progresses to the report stage and subsequent third reading, when MPs will have their say on it for the final time, Malthouse hopes those who disagree are able to do so respectfully. 'We just hope that it stays civilised,' he says. But it seems the gloves may already be off. Online, the debate swiftly spiralled out of control, with MPs on both sides being subjected to vitriolic abuse on social media. Leadbeater, who is the sister of Jo Cox, the MP who was murdered by a terrorist in 2016, told the BBC that sponsoring this Bill had exposed her to a new level of online hate. 'There are people on the extremes of the debate, people who do not want to see any version of a change in the law, and there are people on the other extreme of the debate who would want a much broader law,' she told the BBC. 'Sadly, that has led to more abuse than I've probably had on anything.' Meanwhile, some critics have called the integrity of the scrutiny process into question, arguing that their concerns have been dismissed and that the committee's evidence was weighted towards those who are backers of the Bill. (The Royal College of Psychiatrists, which opposes the legislation, was initially excluded from giving evidence because of an alleged shortage of time, before the decision was reversed.) Allan House, a liaison psychiatrist and emeritus professor at the University of Leeds, was invited to give oral evidence to the committee on January 29. 'You were asked to share whether you were 'for' or 'against' [assisted dying], which I remember thinking was very odd, as I thought people were called because of their expertise, not their opinion,' he says. House claims he was one of only a small number called who were outright opposed to the legislation. Moreover, he says, the Bill, as it stands, 'does not resemble best practice in any other area of health care.' As events have progressed, the issue has formed unlikely alliances in some corners of Westminster, where MPs who may agree on very little else have stumbled on common ground. Diane Abbott and Edward Leigh, the current mother and father of the House, have united from their opposite benches to write a joint op-ed for The Guardian, warning of the legislation's 'dangerous' unintended consequences. Within the committee itself, Kruger and Naz Shah, the Labour MP for Bradford West, have found themselves on the same side of the debate despite having very different politics. 'I'm very clear that I've spoken to colleagues who voted for it [in November] who are not going to vote for it now,' says Shah, who voted against. 'I am one of those who could have been convinced to vote for it had the Bill's safeguards genuinely been strengthened… I'm not convinced it has the mandate it had. The process has been haphazard at best, it has been rushed.' Supporters maintain this is not the case. Malthouse, for example, argues that the Bill has been 'very significantly strengthened'. 'MPs are looking again at [it], as they should, and thinking about its implications for a second time, but we haven't seen any significant shift in opinion about the principle,' he says. 'If anything, there are more people who are reassured.' One of them is Marie Tidball, a Labour MP born with a congenital disability, who had tentatively voted in favour but said she would push for considerable amendments to the legislation. Now, she says, her concerns have been allayed. Leadbeater does not believe that those who backed the Bill in November will rescind their support, despite the growing sense that her Bill is on borrowed time. 'If they look at it in detail, which I really hope they do and believe colleagues will do, they will see the things that have been added that really enhance the safeguards,' she says.
