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Assisted dying assisted suicide Disability Meacher Bill

It’s impossible to make the choice to live – let alone thrive – if you’re only offered ways to die.

Dr Peter Scott Morgan gave a thoughtful and provocative presentation on behalf of NDY to the All-Party Parliamentary Group on Dying Well earlier this month.

He also wrote a couple of articles which have been published in The Times (£) I wrote this with my eyes — don’t tell me there’s no hope | Comment | The Times and inews  https://inews.co.uk/opinion/motor-neurone-disease-tech-assisted-dying-law-changes-1110154.

They’re both based on an article he wrote which we thought you might like to see, which is below.

All my life I’ve been passionate about equality and fairness. Consequently, when I heard of a move to update the law on assisted dying, I intuitively supported it; the intentions appeared so obviously reasonable, compassionate and humane.

But as a scientist, I’m trained to question even the obvious. So, I set about researching the Bill’s pivotal assumption that it’s possible to ensure informed choice without pressure. And I focused on motor neurone disease (MND) – the ‘cruellest disease’ and often-used justification for assisted suicide.

Fortunately, I’ve spent 30 years analysing complex social systems to predict unexpected consequences. And I also know a bit about MND because I have late-stage MND myself. Since 2017 doctors agreed I might die within six months. Now, I’m almost completely paralysed. Locked In. Allegedly, well past my death-best-before date.

My research uncovered three things.

It’s impossible to make an informed decision about your options if the medical community around you isn’t aware of how many exciting alternatives are emerging. Take my own instance. Thanks to pioneering NHS surgeries, continuous healthcare funding to look after me at home, and cutting-edge hi-tech that lets me speak in my original voice (and type this) using only my eyes – ‘invariably fatal’ MND may never get to kill me. Heart disease or dementia may do the honours. What’s more, my new capabilities will keep improving – in pace with computers.

Already, my overall quality of life is exceptional. I have love. I have fun. I have hope. I have dreams. I have a purpose. And I’ve found the trick to enjoying total paralysis is simply to imagine you’re in a luxury spa hotel and the maître d insisted you put your feet up and don’t move a muscle.

Mine is only one instance of rewriting the future of extreme disability. How many doctors tell their newly diagnosed MND patients that there’s such hope?

It’s impossible to make the choice to live – let alone thrive – if you’re only offered ways to dieLet’s give an example. To survive with MND long-term, you typically need an operation called a tracheostomy that lets a portable device breathe for you, as well as a cough-assist machine that clears your lungs of phlegm. In the UK, decisions on whether these options are available to you if you have MND are made locally not nationally. As a result, some who desperately want to live with MND are being told they must die instead – because of where they live. Less than 0.5% of people with MND in the UK receive this life-saving combination; in Japan, it’s over 30%. If I’d carried on living where I grew up, I’d have been refused treatment and died in 2019.

It’s impossible to ensure people make their decision without pressure when the current system is so unrelentingly negative.Just do an internet search of ‘MND’ and you’ll see what I mean. Avoiding coercion requires people to believe there are serious alternatives. Otherwise, it’s a sham ritual of decision making whose outcome was never really in question. Equally, I worry that many making this decision may be clinically depressed. Or so worried about the emotional and financial burden they’ll bring it feels an act of love to sacrifice themselves for the good of those remaining.

So, what do I now feel about the Bill to change the law on assisted suicide?

Confusion about the likelihood, let alone ‘inevitability’, of intolerable suffering; concern that we’re not ‘only shortening life by a few months’; worry there are insufficient protections against patients not being fully informed; uncertainty over being ‘terminal’ rather than simply ‘disabled’; anguish that some with an extreme disability may unnecessarily kill themselves in anticipation of what they incorrectly believe will inevitably happen; upset at the injustice of protecting an individual’s human right to choose to die, without putting the same effort, education and funding, into their right to thrive.

My intuition still says to update the law on assisted dying. But it must be equal and fair, otherwise, it becomes discriminatory euthanasia. Perhaps unknown to its designers, these proposals are biased towards unnecessarily culling the very people who would cost the most to keep alive and help thrive. That may be economically convenient. But it’s also cruel and uncivilised.

We’re better than that.

Dr Peter Scott-Morgan is a scientist researching breakthroughs in the clinical care of profound disability. He was diagnosed with motor neurone disease in 2017.

Categories
Assisted dying assisted suicide Disability Meacher Bill

APPG on Dying Well Thursday 15 July – 5pm – Meeting in Parliament (online)

Dear Colleague,

The All-Party Parliamentary Group (APPG) on Dying Well promotes access to excellent palliative care and/ stands against the legalisation of assisted suicide in the UK.

I am delighted to invite you to our next online meeting on the 15th July at 5pm. This is an unmissable event and first of its kind, which will be of interest to parliamentarians with a range of expertise. Especially those with interests in science and technology, medical innovation, mechanical engineering, human ethics and philosophy.

Three presenters, all of whom are disabled, will consider Baroness Meacher’s Assisted Dying Private Members Bill from very different perspectives and viewpoints. Each presenter will test the arguments for a change in the current law and whether the proposed legislation stands up to rigorous public safety standards.

Dr Peter Scott Morgan

http://www.scott-morgan.com/blog/right-to-thrive/faqs-about-right-to-thrive/. Peter is the world’s leading robotics and AI scientist who was diagnosed with the severest form of MND ALS and given 2 years to live. 4 years later, Peter will show-case his new inventions and solutions which challenge commonly held beliefs regarding terminal Illness. Amongst them he will demonstrate a sophisticated avatar, which has given him his voice and expression back, having lost this capability a year ago when he became motionless as a result of MND. His work is gaining great traction globally as a result of his recent book, documentary and 2020 launch of the Scott Morgan Foundation: https://www.scottmorganfoundation.org/our-story.

Dr Mario  Griffiths https://en.wikipedia.org/wiki/Miro_Griffiths. Miro is a Leverhulme Research Fellow at the University of Leeds, who has published on disability policy and politics, and is invited regularly to comment on current social issues. He is a member of the Disability Advisory Committee at the Equality and Human Rights Commission, and advises the UK Department of Health and Social Care on improving disabled people’s access to health and social care provision. He is a former strategic and confidential adviser to the UK Government and European Commission. Miro has Spinal Muscular Atrophy, which is a progressive condition that causes muscle strength deterioration throughout the body.

Philip Friend OBE Hon DSc

https://philfriend.co.uk/. Phil contracted polio as a child and is a wheelchair user. He is acknowledged as one of the UK’s foremost consultant on disability matters. He has worked on disability and diversity projects in Estonia, Romania, Poland, Germany, Canada and the USA. He was awarded an OBE in 2001 for services to equal opportunities and disabled people and made an honorary Doctor of Science (Hon DSc) in 2009 in recognition of his outstanding contribution to equality and diversity from University of Hertfordshire. He is the current chair of the Research Institute for Disabled Consumers and Vice Chair of the Activity Alliance.

Baroness Campbell of Surbiton http://baronesscampbellofsurbiton.uk/. Baroness Campbell of Surbiton is a Cross Bench Peer and Founder of Not Dead Yet UK (NDYUK) www.notdeadyetuk.org. NDYUK is the leading organization of disabled people and those with a diagnosed progressive and terminal medical conditions campaigning against a change in the law on Assisted Suicide.

Please email sophiej.clarke@parliament.uk and you will be sent joining instructions for the meeting.

Yours,

Danny Kruger MP

Categories
Assisted dying assisted suicide Disability Meacher Bill

Lies, Damned Lies and Statistics

In a recent quote, DiD suggest that 88% of disabled people support assisted suicide. We asked for the data to analyse the reliability of the claims. Zeynab Al-Khero our researcher concluded the data set is small and has a number of other flaws.

The research data was based only based in Scotland and involved a total of 243 people who identified themselves as disabled. Without a clear definition of disability, DiD cannot claim the poll is the view of disabled people nationally. If we look at the term ‘disabled’ the study is based on only 87 people. It is estimated that Scotland has a million people who define themselves as disabled. The DiD survey could hardly be described as “statistically significant”.

It’s also worth noting that this was an online survey. Glasgow Disability Allowance’s COVID research showed that 60% of disabled people were experiencing digital exclusion. This means those who were able to complete the DiD online survey are not representative of the vast majority of disabled people who are disconnected from peers, services and supports.

Baroness Campbell of Surbiton- Founder NDYUK said, “We always knew this was not a true reflection about how disabled people feel about the legalisation of assisted suicide. The numbers in this survey aren’t robust enough to make general statements about what disabled people do or don’t want.

Not Dead Yet have over 2000 disabled supporters, and more join our campaign every week. I think this speaks for itself. Not one organisation of or for disabled people actively campaign for a change in the law. Why do you think this is?”

We remain extremely concerned that any change to the current legislation opens the door to new risks for disabled people, as demonstrated by the changes in the law in other jurisdictions around the world (e.g. Canada and the Netherlands.)

Disabled people want properly resourced help to live, not to die. Assisted dying legislation, as proposed by Baroness Meacher, is ‘paving legislation’ in other words paving the way for future widening of the criteria to people whose medical diagnosis and prognosis are not terminal. For example, disabled people with physical, sensory, or mental health and learning disabilities.

You can help fight this attempt to change the law on assisted suicide by contacting your MP. If you need our help to do this, contact us at admin@notdeadyetuk.com

 

 

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Assisted dying assisted suicide Meacher Bill

Evidence of a Slippery Slope?

Supporters of our campaign to resist a law change on assisted suicide have continually expressed real concerns about the concept of  “a slippery slope”. The idea that once assisted suicide is permitted for one group it isn’t long before it’s extended to include other groups and that this is a bad thing. Our opponents have argued that this is simply not true, that a slippery slope does not exist.

Let’s briefly examine what has been happening in Canada.

In December 2015 – the Quebec Province in Canada (a regional government) passed the Act Respecting End of Life Care, which permits Medical Aid In Dying (MAID).

June 2016 – The law was extended to other Provinces and Territories, making Quebec’s law legal across the whole of Canada. It prioritises mentally ill and vulnerable people and those who have a grievous or irremediable medical condition, including people with an incurable illness or disease, and disabled people.

https://en.wikipedia.org/wiki/Euthanasia_in_Canada

In March 2020 – the Canadian courts (nationwide) extended the law to include the following:

  • Removal of the requirement that death should be reasonably foreseeable
  • Only one independent witness to request for MAID
  • A personal or health care worker may be a witness
  • Removal of 10-day period for reflection
  • The waiver should be given in advance

On 17 March 2021 – the Canadian legislature expanded MAID to a broader group of people:

  • A person does not need to have a fatal or terminal condition to be eligible for MAID.
  • Mentally ill patients can give an advanced waiver to sign off for MAID before they are compromised by their condition.

https://www.canada.ca/en/health-canada/services/medical-assistance-dying.html

The numbers of people assisted to end their lives in Canada are consistently growing year on year:

https://bit.ly/3glUlmp

The Canadian Government now propose that in March 2023 it plans to give patients with mental illness alone and no other underlying issues the option for a MAID.

Within six years the scope of the assisted suicide legislation in Canada has been amended twice with further amendments planned. More people are now eligible, the death rate is increasing and the protections have been weakened we’d call that a “slippery slope”.

 

Categories
Assisted dying assisted suicide Disability Meacher Bill

We need your help.

The Meacher Bill

We need to ensure that the Meacher Bill fails to attract the necessary support in Parliament. We need your help to contact and persuade Peers and MPs of the dangers this Bill poses to many disabled people.

Letter writing, social and broadcast media work and direct contact with MP’s and Peers are critical.

We have drafted a letter you could use as a template to contact your MP.  Please feel free to edit to suit your purposes.

MP Letter Template

BMA

The BMA is due to debate assisted suicide later this year. It is crucial that they stay neutral or, if possible, are persuaded to oppose a change in the law. We need you to engage with your GP’s and other medical practitioners to express your concerns.

This is why we need a strong campaign to defeat this latest attempt to legalise Assisted Suicide.

Peter Thomas, 47 from Birmingham says, “I’m fearful of others, including some medics, questioning why I haven’t opted for assisted suicide”.

Categories
Assisted dying assisted suicide Disability Meacher Bill

Now is Not the Time

Assisted suicide legislation is a threat to disabled people’s lives, independence and peace of mind.

We recognise that there is a range of views amongst disabled people as a whole on this issue, and we can see the argument for having a sensible, rational debate about assisted dying. But not now.

In every jurisdiction where a form of assisted suicide has been legalised, the numbers dying have increased over time. Once assisted suicide is law, society has endorsed it as an option, equal to that of life. Those who had never considered it will be told that it is an option. Their families, friends, health and social care professions will all know it as an option too.

It is hard enough already for those of us with terminal illnesses and disabilities to get the support services we need to live active, independent lives. The COVID pandemic has made that harder and bought into sharp focus the value society places on us. Many of us have lost health and social care support over the last year. And 6 out of 10 COVID related deaths have been disabled people.

For essential support to become merely the alternative option to assisted suicide terrifies us. That is why no organisation of terminally ill or disabled people has sought a change in the law.

We need help to live – not to die. That means investment in palliative care, pragmatic solutions to social care provision and continued financial support for our world-class NHS.

These are the issues our parliamentarians should be concentrating on, rather than the Pandora’s Box of assisted suicide which might help the few, but at the expense of the many.

https://www.telegraph.co.uk/news/2021/05/26/government-should-helping-people-live-not-die-assisted-suicide/