11 hours ago
‘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.
