Guiseley mother's fears over assisted dying bill brought by Spen Valley MP Kim Leadbeater
Like many young girls, Tilly West loves Taylor Swift, has fairies on her bedroom wall and, though intelligent, says mother Dee Cowburn, is “so sassy”. Unlike most children her age, however, due to a rare condition called Rett Syndrome she is non-verbal and needs lots of help to move.
The syndrome is a rare neurological disorder which mainly affects females, usually caused by a fault on a gene called MECP2 which is found on the X chromosome, and those who have it live with profound physical and communication disabilities.
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Hide AdSo the family home in Guiseley, Leeds, is full of specialist equipment to help the eight-year-old Ireland Wood Primary School pupil.


Consequently, it’s a busy life for PR freelancer Dee, a former journalist and press officer, her partner Rob West, a maths teacher, and their older daughter Thea, nine. The last thing Dee wants to wade into a sensitive political issue. But on the subject of assisted dying, she felt on an “instinctual” level that she needed to advocate for her disabled daughter.
Kim Leadbeater, Labour member for Spen Valley in West Yorkshire, has introduced The Terminally Ill Adults (End of Life) Bill, due to be debated and voted on by MPs on November 29, but says the legislation will “contain the strongest protections and safeguards anywhere in the world”.
Although the bill does not relate to children, Dee, 48, is concerned about its potential consequences a decade from now when Tilly is due to turn 18, and emailed various MPs seeking clarification about who is being consulted about the change in law and how it would work.
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Hide AdShe says: “Yes, she’s got Rett Syndrome. Yes, she’s got a massive list of symptoms and complications, but she’s a person and a human being, first and foremost. Every time I take her to hospital, I show them a video and a picture of who she is. ‘This is Tilly when she’s well. She might be presenting like this, but this is who she (really) is’. I’m her advocate. That’s my job. Without that, through no one’s fault, assumptions would be made about Tilly.


“Let’s say 10 years from now, Tilly goes to hospital, she’s got Rett Syndrome, she’s got all these things wrong, and me and her dad aren’t there advocating for her or showing them who she is and how she can be and how she bounces back from being seriously ill. What terrifies me is she’s significantly poorly, she’s significantly complex, she requires 24-hour care…without a vehicle that’s more comprehensive than a Private Members’ bill, where does that leave Tilly?
“People might say: ‘It will never come to that. There are safeguards’. Where are the safeguards? Where’s the consultation? Where’s the reassurance? Until I have it in black and white and that’s enshrined legally, where’s that reassurance for me?”
Ms Leadbeater has said she wanted to introduce the bill after speaking to Dame Esther Rantzen, who has stage four lung cancer, and has been outspoken about the need for a change in the law. The broadcaster, 84, has joined the Dignitas assisted dying clinic in Switzerland.
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Hide AdDee says: “It’s an awful, awful situation that she finds herself in, and she’s got every right to say that she feels that this needs to come to Parliament. I haven’t got an issue with that.”
However, she adds: “You (Ms Leadbeater) picked up the phone and spoke to her. Were you speaking to all the charities of children with life-limiting illnesses? Were you speaking to other vulnerable groups? That’s when my radar was up, when I saw that I just thought that, for me, didn’t feel right.”
Ms Leadbeater responded with a lengthy statement to The Yorkshire Post.
She said: “I want to reassure Dee and all those who worry about the timing of my bill, that I have been consulting very widely over the past few weeks, mainly because I’m not the sort of person who would embark on a task like this without delving deeply into the issue first. But also because I am clear that if we are to have a new law it must be a good law.
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Hide Ad“Both Houses of Parliament have debated this subject many times in the past and I have looked back at those thoughtful and detailed debates. The House of Commons Health and Social Care Committee spent 14 months investigating assisted dying before publishing their report in February this year and that too is a valuable source of information and analysis.
“I didn’t just want to study the long history of debate on the issue, I also wanted to talk with those who have a direct interest in the matter. I have had very productive meetings with medical professionals, lawyers and members of the judiciary, faith leaders, humanists, disability rights campaigners and palliative care professionals. And, of course, the families who have first-hand experience of the terrible pain and trauma that results from the current law, and terminally ill people who know what awaits them and simply want the right to choose to die on their own terms.
“I was particularly moved by those whose loved ones faced an unbearably painful end despite having had access to the best possible palliative care or who have taken their own lives.
“There is no question of the bill being rushed. The vote on November 29 is important, but it is not the final word. If passed, it would allow the bill to go forward for scrutiny by a committee of MPs and be debated at length again in the House of Commons, and then yet again in the House of Lords.
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Hide Ad“I also want to reassure Dee that my bill is very strictly limited to people who are already dying. Only terminally ill adults who have mental capacity and are expected to live for another six months or less will be eligible. The legislation will contain the strongest protections and safeguards anywhere in the world for those nearing the end of their life and wanting choice over the manner of their death.”
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