Two terminally-ill women to complain to UN over passage of assisted dying bill through parliament

Two terminally-ill disabled women are to lodge a complaint with the United Nations that the passage of a private members’ bill that aims to legalise assisted suicide breaches the UN disability convention.

Nicki Myers and Nicola Waters believe key aspects of the way the terminally ill adults (end of life) bill has passed through the House of Commons have violated the UN Convention on the Rights of Persons with Disabilities.

Disabled People Against Cuts (DPAC), Disability Rights UK (DR UK), and Not Dead Yet UK are among disabled people’s organisations (DPOs) that have submitted witness statements in support of their complaint.

They believe the way the legislation has been dealt with has breached the articles on accessibility and the participation of disabled people in political and public life, with the seriousness of these breaches enhanced by the “very serious threat” posed by the bill to disabled people’s right to life.

The complaint is likely to be submitted to the UN committee on the rights of persons with disabilities tomorrow (Friday), as the bill is set to begin its report stage in the House of Commons.

DPOs hope the UN will declare that the way the bill has been considered by parliament is in breach of the convention, and that it will also call for a review of private members’ bill procedures.

They believe such bills should meet the same human rights and equalities requirements as government legislation, and – in DPAC’s view – should stop being used to “sneak through legislation without proper scrutiny” and without disabled people’s voices being heard when their voices may be seen as “inconvenient”.

Other DPOs supporting the complaint to the UN include All Wales People First, Disability Wales, DPAC Northern Ireland, and the coalition of DPOs that monitors implementation of the convention in the UK*.

The complaint focusses on the barriers experienced by disabled people and their organisations in attempting to engage with the bill.

They point to the speed with which the bill is passing through parliament; the failure to publish key documents in accessible formats; the refusal to recognise the importance of engaging with DPOs on the bill; and the failure to carry out scrutiny and consultation on the bill before parliament began to consider it.

Nicki Myers, from Cambridge, has pulmonary fibrosis and was given five years to live seven years ago.

She says she lives life to the full, with the help of NHS continuing healthcare funding, and says she “would not cope” without support from her local hospice, and has an advance directive which records her wish to be legally prescribed sedatives that will slightly speed up her death when she reaches her final days, which provides comfort that she will not die in pain.

She was motivated to join the complaint because she believes the way the bill was introduced meant the voices of people in her position – “those who want to keep living as well as possible for as long as possible, and with good quality services” – had been ignored.

She said yesterday, at an online press conference to launch their complaint: “If anything goes wrong with my care, my medication, the level of isolation increases, my ability to do activities I enjoy, my financial stability is affected, my mental health suffers.

“Perhaps if I was asked about assisted dying at those low times, maybe I would say yes because the fundamental things I need aren’t in place.

“So many people have never had those fundamental needs met and I strongly believe the UK should not be asking these questions about assisted dying until every system we rely on and service we need has been provided.”

She said she also worried that the bill would negatively affect her relationship with her doctors, and that she would “constantly be questioning whether or not they wanted to treat me.

“Disabled, sick and dying people already know that healthcare is being rationed and further cuts to essential services have just been announced, including to palliative care.

“We have to be such strong advocates for ourselves and for each other already.”

She added: “At the very least, our hope is that the complaint will raise awareness about how helpless and devastated disabled people feel about this bill.

“If there is a political will to fix the fundamental services and support structures that palliative care patients rely on, then maybe one day it will be ethical and safe to have a national conversation about assisted dying, but that time is not now.”

Nicola Waters, from Essex, who is terminally-ill with motor neurone disease and has lived with that diagnosis for six years, relies on a “quite extensive” package of support from her local council and hospital to provide her with a “very good quality of life”.

She believes the bill will see people with terminal illness “being offered suicide rather than the care and treatments we need to live”, while many amendments that would have made the bill safer had been voted down during the bill’s committee stage.

She said yesterday: “I have been horrified at the complete lack of consultation on this private members’ bill.

“It is completely the wrong process to bring a bill of this magnitude.

“If this bill was passed, every meeting I have with a medical professional I might be offered assisted dying.

“How would that make me feel? How would that make me trust the people that were looking after me?”

Ailidh Musgrave was diagnosed with anorexia at the age of 13 and was repeatedly hospitalised over the next 13 years, and has now, at the age of 28, been in recovery for two years.

She has provided an individual witness statement in support of the complaint and how she would have been personally affected by the bill.

She said yesterday: “This proposed assisted dying bill frightens me because I know that if a legal framework was in place six years ago, I could and would have accessed it to end my life.

“I am so grateful to be alive, to be able to say that I have overcome anorexia.

“Thinking about this bill and how so many people might not be able to say the same thing breaks my heart because for so long I truly believed my entire life would be spent in and out of hospital and eventually suicide would be the death of me.”

She believes those behind the bill erected barriers “almost purposefully” to prevent opposition to the bill “from those who would most be adversely affected”.

Ellen Clifford, a member of DPAC’s national steering group and co-chair of the UN monitoring coalition, said she hoped the complaint could influence some of those MPs who have previously voted in favour of legalisation to alter their vote.

She said the lack of “objective scrutiny” of the bill meant MPs were not sure “who to trust and who to listen to”.

“Changing the law to make assisted dying legal is a momentous decision.

“Every possible mechanism to explore views and hear from a broad range of disabled people should have been employed, but have been sadly lacking with this bill.”

Bethany Bale, DR UK’s policy and campaigns officer, said: “The rushed, flawed, and inaccessible process of this bill so far highlights that now is not the time for this legislation.

“Safeguards have been weakened, amendments that could have protected us have been voted down, and the private members’ bill process will not give parliament enough time to properly scrutinise the bill.

“There are significant risks to pushing on with inadequate legislation, especially for disabled people who are at a higher risk of experiencing coercion.”

*The coalition published a briefing document explaining its concerns about the bill last November

Picture: Nicola Waters (left) and Nicki Myers

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