A BARNSLEY MP who is campaigning for stronger safeguards for disabled people in a ground-breaking new bill for terminally ill adults has secured unanimous support.
Marie Tidball’s new amendments to the Terminally Ill Adults (End of Life) Bill, to ensure their voices are central to end-of-life care discussions and decision making-processes, received backing from her peers last week.
This includes Daniel Francis MP and the bill’s sponsor, Kim Leadbeater MP, following a debate as part of the detailed, line-by-line scrutiny of the proposals.
A so-called ‘clause 25’, tabled by Dr Tidball, would require the Secretary of State to establish independent advocates to support qualifying individuals seeking to understand their options around end-of-life care, including assisted dying.
The amendment reflects recommendations from experts and advocacy groups - ensuring that people who have learning disabilities, autism, or mental health conditions - receive the necessary support to make informed decisions around their end-of-life choices from the outset.
Marie said: “Disabled people must have a seat at the table in shaping the monitoring of this bill.
“Too often, our voices are forgotten - by embedding a programme board into the legislation, if passed, my new clause will ensure that the impact of this bill is rigorously assessed and that disabled people are directly involved in that process.
“In order to ensure that there is compassionate choice at the end of life, it is right that the bill is tightly drawn around the final stage of terminal illness for adults and includes the strongest safeguards.
“That includes amplifying the voices of disabled people both within the legislation itself and in monitoring its impact if passed by Parliament.
“So often control is taken away from disabled people in all sorts of circumstances.
“I passionately believe in inclusive healthcare for disabled people and ensuring they have a strong voice in advocating for themselves on that healthcare.
“My amendments seek to ensure that disabled people who are terminally ill and want this choice can access it safely if they are found to be eligible, and that those who are not eligible or do not want this option are robustly protected and supported to make end-of-life decisions that are right for them.
“My proposed changes to strengthen it further, will introduce much-needed regulation, transparency and specialist advocacy support, better protecting a number of groups, including those with learning disabilities, mental health disorders and autism, regardless of what they might ultimately choose.
“It’s a complex and emotive topic but one that deserves our full attention and care before it goes back to Parliament for the third reading.
“Nearly 500 constituents have written to me about this issue and I’m working hard to make sure that challenges, concerns and unintended consequences are addressed properly in the bill.”
The full bill, including Marie’s amendments, will be formally voted on by all MPs in the coming weeks.
If seen through, the bill will allow terminally ill, mentally-competent adults in their final six months of life to request assistance to die.
The independent advocates would be required to undertake specialist training on the role, and the support from these advocates would be available regardless of whether the individual is ultimately found eligible to request an assisted death.
Marie will also bring forward a further amendment - new clause 27 - that would require the establishment of a ‘Disability Programme Board’ to monitor the impact of the bill on disabled people.
This board must include disabled people, representatives from disability rights organisations, and experts in disability policy. T
Speaking in support of the amendments, Ms Leadbeater, added: “The honourable member for Penistone and Stocksbridge has made a really powerful and passionate case and, as always, has done an outstanding job of advocates for people with disabilities, including learning disabilities, mental disorders and autism.
“It is essential that anybody considering the choice at the end of life made possible by this bill should fully understand the nature and consequences of any decision they may make.
“This bill is, and must be, about both choice and autonomy and safeguards.
“I am very happy to support these amendments and the new clause.”
