'I'm disabled and 99% bed-bound but live life to the full - why the assisted dying bill is wrong'

Wales Online

14-05-2025

'I'm disabled and 99% bed-bound but live life to the full - why the assisted dying bill is wrong'
Nicki Myers has a condition which means she is barely ever able to leave her bed but says pressures from elsewhere could impact decisions on whether people live or die
Supporters of the "Not Dead Yet" campaign, previously protested outside the Houses of Parliament
(Image: Getty Images )
Nicki Myers has a condition which means she can barely leave her bed. The 52-year-old has pulmonary fibrosis which means she is 99% bed-bound.
But she says with the help of her local hospice she is still able to live life to the full. But she fears moves to introduce assisted dying to the UK could leave people in her position facing choices over whether to live or die.
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Now she has joined with other disabled campaigners to argue the Westminster assisted dying Bill violates their rights under a United Nations (UN) convention. And they say their voices have been 'ignored' in the debate.
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The move is being backed by campaign groups including Disabled People Against Cuts, Disability Rights UK and Not Dead Yet UK. Nicki, who lives in Cambridge, is making a complaint alongside Essex-based Nicola Waters, 51, calling on the United Nations to declare that the passage of assisted dying legislation violates the UN Convention on the Rights of Disabled People (UNCRPD).
Ms Myers said she was given five years to live seven years ago. She said: 'I was motivated to be a complainant in this case because I believe the way this legislation has been introduced, as a Private Members Bill, has meant the voices of people in my position (those who want to keep living as well as possible for as long as possible, and with good quality services) have been ignored.
'I also believe the timing of this Bill is wrong. When social security, fuel allowance, health, social care and palliative care services are all simultaneously under threat, it is not the right time for people to be asked if they want assistance from the state to end their lives.'
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Ms Waters, who has the progressive neurodegenerative condition Motor Neurone Disease (MND), said she believes opportunities to make the Bill safer in recent months have not been taken. She fears people are being offered death rather than care.
She said: 'This Bill will see those of us who live with terminal illness being offered suicide rather than the care and treatments we need to live. Numerous amendments that would have made the Bill safer have been voted down. As a result, I could be offered assisted suicide at every medical appointment I have.'
The complaint contains multiple arguments, including a claim there has been a lack of pre-legislative consultation or scrutiny; the Bill has been rushed; a failure to publish accessible formats of the Bill and related material; a failure to recognise the importance of engaging with organisations run and controlled by deaf and disabled people; and inadequate arrangements for hearing from these groups at committee stage.
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Silent Witness actor Liz Carr is a disability rights campaigner and a member of the Not Dead Yet group
(Image: Getty )
Actor and disability rights campaigner Liz Carr has backed the complaint, saying it feels as though the voices of disabled people have been 'sidelined' in the debate. She said: 'Considering the fact that this Bill is very much about disability (the majority of terminally ill people come under the Equality Act definition of disabled), it is shocking to me that the voices of disabled people's organisations have not been adequately heard so far.
'Varied groups of disability rights organisations should have been invited to give evidence at the committee and to do this effectively, sufficient time to prepare was needed and preparatory information in accessible formats should have been provided. Particularly during committee stage, the amount of information being shared, that we need to comment on is practically impossible to read through without the time to do this comprehensively and without the information being provided appropriately and accessibly. It also feels that our voices have been sidelined, marginalised even, as not particularly relevant to this Bill.'
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Help in a crisis
If you're having thoughts about suicide, are harming yourself or have considered self-harm, it's important to tell someone. These organisations give immediate support:
Your local 24/7 NHS crisis line: at nhs.uk/urgentmentalhealth or visit 111.nhs.uk
Under 35? Visit papyrus-uk.org, call 0800 068 4141 (lines are open 24 hours every day of the year), text 88247 or email [e-mail].
If you do not feel you can keep yourself or someone else safe, call 999.
The Bill is supported by MP and disability rights advocate Marie Tidball. She secured amendments to ensure the establishment of independent advocates to support people with learning disabilities, autism or mental health conditions and to set up a disability advisory board, and has confirmed she will vote yes again at the third reading, feeling assured safeguards have been strengthened.
She told reporters last month: 'I can say, as someone who has looked at legislative scrutiny over the course of the last 20 years, this is the most extraordinary, deliberative cross-party process I've ever seen.'