Two Tyneside families have spoken out about the agonising deaths of their loved ones as they campaign for the legalisation of assisted dying in the UK.
Dr Jenna Kirtley and Naomi Craven are both part of a new Dignity in Dying campaign group in the North East.
Jenna's stepdad - or "stad" - Ken Yeomans, 58, died traumatically of prostate cancer, while Naomi's dad Ray Craven, 70, travelled to a Dignitas clinic in Switzerland at the end of his life - after rapidly progressing motor neurone disease (MND) saw his ability to walk and even speak disappear over a matter of months.
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Both women want to raise awareness of the cause - which is supported by an "overwhelming" 84% of the public according to a 2019 Populus poll - and to put pressure on public figures to back plans for assisted dying legislation to be passed by Westminster politicians this year.
In the coming week's the House of Lords are expected to debate an amendment to the Health and Care Bill which would mean the Government would introduce assisted dying legislation this year - while Baroness Meacher's assisted dying bill passed its second reading in the House of Lords last autumn.
For Jenna, Ken's death was "the most traumatising thing possible".
She told ChronicleLive about how his cancer - which he had dealt with stoically for several years - had become incredibly aggressive, and terminal, in 2021.
"The reality is that for a long time, you wouldn't have known he was ill," she said.
"We almost forgot that he had cancer. I think that's partly because of how he lived - he would never have wanted to be seen as a sick person. He always wanted to make the most of his life and live it to the full.
"Even when he was having treatment you wouldn't know it. He would go for chemo, come back, throw up and then be doing 100 burpees in the garden. He was so determined not to let it affect him.
"So we all got a shock when he found out that this was going to be it. He was working in Dubai. He was due back in April last year and when he was on his way back, he was complaining of neck pain."
Jenna explained that even as the pain built while he was abroad, Ken didn't let on how bad things were - but when he returned home he was told that he had around a year to live.
"What was happening from that point was that the cancer was crushing his bones," she said. "Somehow he held it together. You could see he didn't look well but he would always say he was fine.
"We went from seeing this man who appeared healthy and fit - someone who was exercising, running - to someone who could barely walk.
"He was in so much pain. My sister has three kids and for them it was horrible to see him in so much pain. He could barely even talk. We were digesting the news that he had a year to live when it became clear that really he had days to live."
As Ken's condition deteriorated in the early summer - he died in July - his quality of life suffered immeasurably and his family found his last few weeks traumatising.
"I had to stop working. I was at home with him looking after him for the last ten days," Jenna said. "All I can say is that it was ten days of horrible pain for all of us.
"This man - who was so proud - needed family to help him to the bathroom. He was saying things like he wanted the nurses just to come and bump him off.
"He was ready to die."
Jenna said that it was important people understood the realities of death. She said: "People might have all of these ideas about how you slip away peacefully when you die, but this was the most traumatising thing to watch. This person was not able to breathe, not able to speak. We felt completely helpless.
"In a civilised society, you should be able to die when there's no longer any quality of life. I specialise in trauma work, I know what trauma is, this was traumatic for the whole family."
Saying that how her dad was forced to die was "unacceptable" she added: "We should all be talking more about death and dying. Young people should get involved - one day it is going to be them."
Naomi's dad Ray Craven was able to have an assisted death through travelling to Switzerland, but she said the laborious process, expense and difficulty travelling had all made things "incredibly difficult" - and said people shouldn't have to leave their homes to die peacefully.
She said: "This is something I felt strongly about before my dad's experience but that has solidified it. My dad was a proper, proper Geordie. He was born in the General and grew up in the Stanhope Street area.
"He was a well-loved lecturer. He first started to become ill in around August 2020. At first it was difficulty swallowing. But it got progressively worse until April 2021, when he was diagnosed."
As soon as he knew he had MND, and was facing a stark prognosis, Naomi said her dad was "very, very clear" about his wishes.
"He wanted an assisted death," she said. "He mentioned Dignitas within five minutes of being diagnosed - that's absolutely what he wanted.
"From April he deteriorated very, very quickly. He was unable to speak by June, by July he was unable to walk very far at all. He very much wanted to take control of his death."
But she explained that it took her and mum Janice three months to "jump through the hoops" required to get Ray accepted at Dignitas - and she said the family had been concerned he would soon become too ill to travel.
As his condition worsened, the family flew to Zurich in early September, but even by then Ray was almost too ill to travel.
"The whole process to get to Switzerland was very hard for my dad," Naomi said. "He lived in North Shields but had always been clear that he wanted to die in Newcastle. He'd say 'no chance am I dying in North Tyneside'.
"In the end it was probably a couple of days too late - and the journey was harrowing. He almost choked in Newcastle Airport, then we got on the plane where the air quality wasn't great and that made it difficult too.
"By the time we got to Switzerland he was absolutely exhausted. He spent the whole three days in an Airbnb in Zurich."
Naomi said the stress of travelling while knowing her dad was taking a flight he would not return from had been incredibly difficult for her and her mum.
"There's something really unfair about having to travel," she said. "Not being able to say goodbye to family or friends. There's no option for a proper funeral, and of course it costs £10,000 to £15,000 to die abroad.
"You can't tell anyone what's happening."
After Ray's death, Naomi and Janice - like Jenna - wanted to use their upset and anger at the situation to campaign.
Naomi added: "After we got back we thought we needed to do something to campaign while we were still so raw about what had happened.
"We are seeing what we can do at the moment to put the pressure on policymakers. This is something that public opinion is overwhelmingly in favour of and it's one of things that you almost don't think about until it happens to you."
Both women have spoken of how the proposed laws include incredibly strict safeguards - including requiring two doctors to affirm that someone has a terminal diagnosis, less than six months to live, and is making a decision in sound mind.
Sarah Wootton is chief exec at the campaigning organisation Dignity in Dying. Speaking about Jenna and Naomi's situations, she said: "Jenna and Naomi’s families have endured the cruel realities of the current ban on assisted dying.
"Ken and Ray were both proud Newcastle men who wanted the choice to die in the city they loved. Instead, Ray was forced to travel abroad to have the peaceful death he so wanted, while Ken spent his final days in agony, begging to be allowed to die.
"Lord Forsyth’s amendment calls on the government to give the assisted dying debate the time and respect it deserves, as does our newly launched government petition.
"Without a proper debate, terminally ill people like Ken and Ray will continue to be denied choice over their end of their lives, forcing them to face either painful deaths at home or traveling abroad at huge physical and financial costs."
Among the opponents to Baroness Meacher's Bill include the Archbishop of Canterbury, the Most Rev Justin Welby, who said last year that although the safeguards in the legislation were stronger than in previous attempts to change the law, they still did not go far enough.
During the House of Lords debate on the Bill last year, justice minister Lord Wolfson of Tredegar said the Government was adopting a position of “neutrality” on the issue and a Government spokesperson said: "This is a matter for individual conscience. Any change in the law is for Parliament to decide rather than Government policy."
To view the petition calling for the Government to bring forward legislation on assisted dying, click here. To find out more about the Newcastle-based Dignity in Dying group, search for "Dignity in Dying Newcastle" on Facebook.
