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‘I’m terrified about my MS

A new assisted dying law should not be restricted to the terminally ill but broadened to include people experiencing “unbearable suffering”, campaigners have said.

Sophie Korevaar, a 40-year-old from Bristol with multiple sclerosis (MS) told i she would like to have the choice of an assisted death, but would be denied one under current proposals.

She said a compassionate assisted dying law “would release me from the very real terror I feel about where my disease may leave me and my inability to escape the incapacity and pain that can come with MS”.

Ms Korevaar, a proofreader who moved to the UK from Melbourne 17 years ago, has relapsing-remitting MS, which may become secondary progressive MS, where the disability becomes gradually worse.

Ms Korevaar’s current condition means her health fluctuates and she, like many others, can live well with MS for a number of years. She stressed that her call for an assisted dying law was centred on people who had a reached a stage of “unbearable suffering”, which many people with MS and other conditions may endure for several years.

MPs will get their first vote on assisted dying for nine years when a bill, which would cover England and Wales, is introduced in Parliament this month. Labour MP Kim Leadbeater, who is putting forward the bill, said her proposals would give eligible adults nearing the end of their lives the right to choose to shorten their deaths if they wish.

The details have not been finalised but the bill is likely to be similar to a proposal in the House of Lords, which would allow terminally ill adults with six months or fewer to live to get medical help to end their own lives. However, Ms Korevaar said people with MS, Huntington’s disease and other conditions who may want the choice of an assisted death would be denied the option.

Assisted dying
Ms Korevaar said a broader Bill woild give her the ‘reassurance I need and the peace of mind’

“An assisted dying law has always made sense to me, but since being diagnosed with MS it forces you to think about your own mortality, where you will end up and what your life might look like,” Ms Korevaar said.

“Suddenly, the future becomes quite different and I found myself struggling with thoughts about what happens if I become incapacitated with the disease, what do I do? How do I live? How do I die? And I realised there were very little options available.

“There would be [the Swiss nonprofit organisation] Dignitas, which is very expensive and my partner wouldn’t be able to come with me because of the legal implications and that’s just miserable. Then there’s the idea of suicide and, again, my partner can’t be with me for the same reason. Would he just come home and find me?

“But if I’m in unbearable suffering these are the sorts of things I’ll be thinking about. That’s the nasty little backing track to my life at the moment. I’d like not to have to think about that.”

Her call comes as a survey published today found around two-thirds (63 per cent) of people in England and Wales say they want the current Parliament to make assisted dying legal for terminally ill adults in the next five years. Some 20 per cent say they do not want this to happen, while a further 17 per cent do not take a side or have an opinion.

However, the King’s College London findings also reveal much of the public still have reservations about the risks of assisted dying, even if they are broadly supportive of its legalisation.

Symptoms of multiple sclerosis (MS)

Some of the most common symptoms include:

  • feeling extremely tired (fatigue)
  • problems with your eyes or your vision, such as blurred vision or eye pain
  • numbness or a tingling feeling in different parts of the body
  • feeling off balance, dizzy or clumsy (uncoordinated)
  • muscle cramps, spasms and stiffness
  • needing to pee more often or not being able to control when you pee
  • problems with memory or concentration
  • sexual problems, including a dry vagina or erection problems

Three in five (61 per cent) say they would be concerned about some people being pressured to have an assisted death if the law were changed, including a majority (53 per cent) of those who want the current Parliament to legalise. And among supporters of legal assisted dying, 55 per cent say they’d be likely to change their mind and become opponents of the policy, if it turned out someone had been pressured into choosing this option.

Ms Korevaar, who also has Crohn’s disease, a chronic inflammation of the digestive tract, argues a “compassionate” assisted dying law, with “rigorous safeguards”, would improve her life, not just her death.

“It would give me the choices I want, the reassurance I need and the peace of mind. I don’t think people realise how limiting this proposed law is,” she said. “My biggest worry is that if this bill passes, people will think ‘job done’ and that’s the conversation over. That’s why I want to talk about ‘unbearable suffering’ now and what it means.”

The new bill is expected to be formally introduced on 16 October, with a debate and initial vote likely to take place later this year. It would have to be approved by MPs and peers before it becomes law. Scotland, Jersey and the Isle of Man are also considering changes to the law.

Asked what message she has for MPs, Ms Korevaar said: “I would ask them: ‘Why should this law not include people like me?’ Because I’m yet to hear an argument that I should not have the same rights and choices that the terminally ill have.”

Trevor Moore, Chair of My Death, My Decision, said: “Sophie’s story powerfully underscores the urgent need for a compassionate assisted dying law in the UK. Her fear of the unknown progression of multiple sclerosis and the distress of facing either a potentially drawn-out, painful death, or travelling far from home for dignified one, should not be the only options for those suffering. My Death, My Decision stands firmly by Sophie and countless others who are enduring intractable suffering and are denied autonomy over their own death.

“The previous proposals in the UK have been too restrictive, offering assisted death only to those with six months left to live. But for people like Sophie, who may endure years of suffering, that legislation falls short.

“We are advocating for a more compassionate, inclusive law that allows individuals the dignity to choose how and when they end their lives, not based on a ticking clock, but on their lived experience of unbearable suffering.”

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