'We need to get the assisted dying law right'
"If it means that we have to delay it to get it right, then that is what needs to happen."
This is what Catie Fenner from Didcot, Oxfordshire, whose mother travelled abroad to end her life in 2023, said about the delayed implementation of the Assisted Dying Bill.
MPs backed the bill that would give terminally ill and people with severe physical or mental illness in England and Wales the right to choose to end their own life in November 2024. But current UK law prevents people from asking for medical help to die.
Ms Fenner said she believed campaigners and opposition should work together to ensure the bill "is about choice and one of the most robust in terms of safeguards in the world".
Her mother Alison was diagnosed with the incurable motor neurone disease (MND) in June 2022.
"She made the decision very quickly that she would not want to see the disease through to the end due to the horrendous state that your body ends up in."
Ms Fenner said Alison took out membership of Dignitas and went to Switzerland in February 2023.
She said her mother had had "the peaceful death that she wanted" but it had been "a horrendous ordeal" for her and the family.
They even had to keep it a secret even from the closest family members, which caused "one of the biggest stresses".
"If anybody found out and felt against it, they could have stopped her from going," she said.
"It would have meant that [we] could have got in trouble for it."
Ms Fenner described her mother as "an incredibly independent person who knew her own mind", so initially, her decision had come as no surprise.
"But then the gravity of the situation came in of exactly what it meant - it was one of those things that you hear about that doesn't happen to you."
But she said that since they had told friends and family, "the support has been incredible".
"For those that knew my mum, they understood her decision.
"It has helped us to not completely overcome the trauma and everything we've been through, but it certainly helps to have their love and support around us."
What is assisted dying and how could the law change?
The Assisted Dying Bill has evoked fear in some that it could be vulnerable to misuse, or that people could be coerced into ending their lives early.
Others have called for the change to be made so that they have the option to die by choice in their country.
Since MPs voted in favour of it, changes have been made to the bill including a new commission and a panel system to oversee application, including Oxfordshire's Sean Woodcock.
That, however, means it could be four years before the law is fully implemented.
Kim Leadbeater, the Labour MP bringing the bill expressed disappointment over the timeline but added that the "four-year backstop" did not mean it could not be implemented before then.
Ms Fenner, who has been involved in the Dignity in Dying campaign, attended a committee meeting on the proceedings on Tuesday.
"I have a lot of respect for the opposition and believe that we must work with them in order to ensure this bill is about choice and one of the most robust in terms of safeguards in the world," she said.
"If that means that we have to delay it to get it right and to make sure it's safe and everything's implemented properly, then that is what needs to happen."
Proposed laws to give terminally ill adults the right to choose to end their life have been agreed in the Isle of Man, which is part of the British Isles.
You can follow BBC Oxfordshire on Facebook, X (Twitter), or Instagram.
Swiss clinic helps grieving mum to die in secret
MND sufferer backs amendment to assisted dying bill
Tears, hope and fear as assisted dying bill passed
BBC Action Line
Try Our AI Features
Explore what Daily8 AI can do for you:
Comments
No comments yet...
Related Articles
Yahoo
11 hours ago
- Yahoo
Common Psychiatric Medications May Increase Risk of ALS
New research shows that people who take certain psychiatric medications may be more likely to develop amyotrophic lateral sclerosis (ALS), which is the most common form of motor neurone disease (MND). This study, which was led by a team from the Karolinska Institute in Sweden, raises some important questions about the connections between psychiatric symptoms, ALS, and MND, and how they might be targeted for treatment. Anxiolytics, hypnotics and sedatives, and antidepressants are the most commonly prescribed drugs for psychiatric disorders such as anxiety, depression, and sleep problems. In terms of increased ALS risk, it worked out as 34 percent, 21 percent, and 26 percent respectively for the three drug types. The increased risk is extremely small when taken in context with the low prevalence of ALS itself. Yet understanding these links could help improve our understanding of motor neurone disease and provide insights for specialists prescribing ways to treat common psychiatric disorders. "In this case-control study, prescribed use of anxiolytics, hypnotics and sedatives, or antidepressants was associated with a higher subsequent risk of ALS," write the researchers in their published paper. "Prediagnostic use of such medications was also associated with a poor prognosis after ALS diagnosis." At the moment, there's no cure for the progressive debilitation that ALS causes, as parts of the nervous system break down – leading to paralysis and, eventually, respiratory failure. The team also identified a slight increase in rate of decline and risk of an earlier death among those diagnosed with ALS who had been exposed to one of a number of psychiatric medications. The researchers used national health data in Sweden to compare 1,057 people with ALS who had been diagnosed between 2015 and 2023 with more than 5,000 controls matched for age and sex who had no MND diagnosis. The researchers also accounted for genetic and environmental factors in their analysis, further backing up the idea that the increased risk of ALS was connected to the medication – or the reasons the medications were prescribed. The data isn't enough to show the drugs are directly causing the increase in ALS risk. It's also possible that other health-related factors are causing both the prescription of psychiatric medications, and the higher likelihood of an ALS diagnosis. "This study adds to growing evidence that individuals with psychiatric conditions may face an elevated risk of neurodegenerative diseases such as ALS," says neuroscientist Susannah Tye, from the University of Queensland in Australia, who was not involved in the study. "However, the implication that psychiatric medications themselves contribute to this risk should be interpreted with caution." Given that previous research has found people with psychiatric disorders are also more at risk of developing ALS, these results may provide some much needed detail to the overall picture of how these different conditions, and their causes and treatments, fit together. It's worth noting that ALS remains a rare condition, affecting around 9 in 100,000 people in the US. Depression and anxiety are much more common, which means millions of people take these medications to treat their mental health without ever developing ALS. Over time though, scientists are gradually understanding the different factors that affect ALS risk, which should provide clues as to how it might one day be effectively treated. The research has been published in JAMA Network Open. Dementia Risk Declining With Each Generation, Says Promising New Study Several Psychiatric Disorders Share The Same Root Cause, Study Finds New Smart Dental Floss Can Detect Your Stress From Saliva
Yahoo
a day ago
- Yahoo
Embrace private healthcare to fix the NHS, says former Boots boss
The former boss of Boots has urged the Government to embrace private medical care to fix the NHS, as he backed plans to inject tens of billions of pounds into the struggling health service. Sebastian James, the former Bullingdon Club member who endorsed Labour last year, said Rachel Reeves is right to propose a £30bn funding boost for the NHS as part of her upcoming spending review. However, he urged ministers to use the cash to 'grasp the nettle of private provision', as he said that easing pressure on cash-strapped NHS hospitals was key to reducing waiting lists. Mr James is already working with the NHS to help outsource cataract surgeries as the chief executive of European eye clinic chain Veonet, which runs the SpaMedica business in the UK. But he said Wes Streeting, the Health Secretary, must go further and faster on working with the private sector after waiting lists recently rose for the first time in seven months. The backlog now stands at 7.42m, according to data released for the end of March. 'We need radical change that can be achieved by releasing a measurable sum of money,' Mr James, the son of the hereditary peer the 5th Baron Northbourne, told The Telegraph. 'We need a more commercial approach. We have to grasp the nettle of private provision. We understand people's hesitation, but we want to see what's best for the patient.' The suggestion echoes ideas put forward by Richard Tice, Reform UK's deputy leader. He has called for the NHS to buy millions more appointments from the independent sector to help address waiting lists, claiming it could help to clear the appointment backlog within two years. This would go further than the Government's current pledge to offer up to a million extra appointments in private hospitals. Yet such ideas are controversial as they will stoke fears of creeping privatisation of the NHS and raise concerns about potential profiteering. Mr James said: 'There are questions about private companies making money. But it's all about how do you square that? 'There are two key things. One, it will still be free at the point of use. And two, the price will be cheaper than what is offered by the public healthcare system.' Mr James has already held talks with Whitehall officials about his plans for the NHS and he said the Chancellor is right to unleash a significant one-off sum. 'You should borrow to pay for it,' said Mr James, suggesting that £20bn or £30bn would barely move the dial when it comes to the country's £2.8 trillion debt pile. However, it comes at a time when the Chancellor is already facing a struggle to balance the books. Ms Reeves will this week deliver her spending review, which is widely expected to unlock an extra £30bn for the NHS over a three-year period. That will be at the expense of other public services, as she is also plotting real-terms cuts to day-to-day spending across many Whitehall departments. Such pressures have emerged because of the Chancellor's fiscal rules, which prevent her from borrowing to fund day-day-day spending. However, Mr James believes that borrowing to fix the waiting list crisis would do far greater good than harm. He said that SpaMedica's role in providing eye services for the NHS should be a blueprint for ministers to work from, as the company claims to have helped cut waiting times for cataract surgery from 18 months to two weeks since Covid. It now provides around 70pc of eye care referrals from the NHS, and last year helped to restore the sight of around 200,000 patients. While it has helped to cut waiting times, SpaMedica is one of many private cataract clinics facing claims of profiteering after they allegedly inflated costs for procedures. A leaked document from the Health Department, first reported by The Sunday Times, alleged that SpaMedica classed its patients as 'higher complexity', which led to procedures being more expensive than they needed to be. Campaigners point to the fact that SpaMedica's profits rose from £63.9m to £71.8m in its last financial year, which they say is proof of the company taking the taxpayer for a ride. SpaMedica has denied any wrongdoing. However, such allegations reflect the fierce debate surrounding privatisation of the NHS, with many households uncomfortable with the prospect of independent providers making a profit while providing medical services, even if they are free for patients. Mr James, who ran Boots from 2018 to 2024, is adamant that ministers must ignore such complaints if they are to have any hope of reducing waiting lists. 'We have cut waiting times down from 18 months to two to three weeks,' said Mr James. 'We have eaten away our waiting list.' This is particularly key for Sir Keir Starmer, who has pledged that 92pc of NHS patients will get an appointment within 18 weeks by the end of the current parliament in 2029. Ultimately, Mr James argues that private healthcare must be embraced because it is far more efficient than the NHS. He said that SpaMedica clinics carry out more than 20 cataract surgeries a day, which is almost double that of NHS hospitals. The fees are also cheaper, he said, as each cataract operation costs SpaMedica £980, compared to around £1,400 on the NHS. 'We've shown that we can do it in our industry, but we need to broaden it out,' he said. 'We could take it area by area, whether that be knee replacements or treating melanomas. 'By working with private healthcare providers, the solution is to save the NHS money. 'We understand people's hesitation, but we want to see what's best for the patient. We're not talking about eradicating the NHS, it's about a partnership.' Broaden your horizons with award-winning British journalism. Try The Telegraph free for 1 month with unlimited access to our award-winning website, exclusive app, money-saving offers and more.
Yahoo
2 days ago
- Yahoo
Time to face the harsh realities of spending orthodoxy
Labour came to power fatuously parroting the word 'change' and yet has shown itself to be the same old tax and spending party it has always been. What it meant was a change of party in office not a change of direction. Not only have taxes gone up but so-called protected spending is set to rise despite record debt levels. Yet if ever a public policy has been tested to destruction surely it is the notion that the NHS will improve if only more money is thrown at it. Even Sir Keir Starmer and Wes Streeting, the Health Secretary, are on record as saying that higher health spending is not the answer to the endemic flaws in the health service and yet another £30 billion is to be announced for the next three years on top of the £22 billion handed over after last year's general election, much of which went on pay and showed nothing in the way of productivity improvement. No mainstream politician is prepared to acknowledge that the problem with the NHS is the fact it is a nationalised industry with all the inherent inefficiencies associated with such. Most other advanced economies in Europe and elsewhere have social insurance systems which work better. But the insistence in Britain of cleaving to the 1948 'founding principle' that treatment should be free at the point of delivery has become a quasi-religious doctrine that few dare challenge. Only Nigel Farage has questioned the wisdom of continuing with a system that patently fails to achieve what others manage to do but has been noticeably quiet on the subject recently because Labour will exploit it mercilessly to see off the Reform people that they will have to pay for something they have always had for free is even more difficult when political parties are prepared to see the health system get worse rather than reform it. The same is true of welfare. Taking benefits from people, even when they are payments introduced just a few years ago like the winter fuel allowance, is hard if the reasons are not explained and the issue is 'weaponised' by opponents. Yet unless the welfare budget is brought under control it will bankrupt the country. If change is to mean anything then we need politicians finally to understand the extent of the country's difficulties and make decisions accordingly. Will we see that from the Chancellor on Wednesday? Broaden your horizons with award-winning British journalism. Try The Telegraph free for 1 month with unlimited access to our award-winning website, exclusive app, money-saving offers and more.
