Latest news with #terminalIllness
The Sun
5 days ago
- Health
- The Sun
Mum told little Katie, 3, is dying from DEMENTIA – after doctors sent her away with paracetamol for ‘simple fever'
LITTLE Katie Hughes was given paracetamol for a "fever" - but she's now fighting for her life after being diagnosed with a rare, dementia-like disease. The three-year-old was rushed to hospital earlier this year after suffering a terrifying seizure. 12 12 Doctors blamed it on a high temperature and her parents Grant and Jessica Hughes were reportedly sent home with painkillers and told not to worry. But the fits kept coming and, after Katie endured her seventh seizure, her parents demanded answers. On 14 July, doctors ordered genetic tests that delivered crushing news. Katie has CLN2 Batten disease – a cruel, terminal brain disorder that will slowly rob her of her ability to walk, talk and see. Jessica, 29, from Porth in Wales, said: 'As a mother you're always there for your children and I'm expected to just sit down and slowly watch her deteriorate and go. 'It's just hard to see that because she's only three – she hasn't even lived her life yet. 'She's too young to understand what's happening to her.' Katie's symptoms first appeared in January this year. She had a brain scan in May that confirmed that she had epilepsy before she received her Batten diagnosis in July. Doctors have warned that she may not live past the age of eight to 12, meaning her parents could lose their daughter before she even reaches secondary school. Her family want to make precious memories while she's still able to enjoy them. Grant, said: 'I'd never even heard of [the disease] before. 'Jessica called me at work and told me to come home because the doctor wanted to give us the news together. 'I'm not a crying person but I was tearing up – we were in pieces. 12 'They told us what was going to happen in the future but they didn't straight away say she was going to die. I felt like they were skirting around it. 'I asked them outright what her life expectancy was and they told me it would be early childhood. 'It's devastating. It's hard to wrap your head around because she's normal – she's running around fine but all her skills will slowly go.' Despite their heartbreak, the brave parents are determined to stay strong for Katie and her big sister MacKenzie, age seven. They hope to take Katie on dream trips so she can experience the magic before it's too late. Jessica said: 'Everything is on a timer now. 'We want to take her to theme parks and Disney World while she can still enjoy it. 'Even that's not simple – because she's epileptic we have to pay £100 for special glasses so she can cope with the flashing lights. 'We put on a brave face every day but secretly it's destroying us. We have to be there for her – and for MacKenzie too.' 12 12 Gift of 'best days' CLN2 disease is a rare degenerative genetic disorder that affects between 30 and 50 children in the UK, Great Ormond Street Hospital (GOSH) says. It's caused by a change in a gene responsible for making a specific enzyme in the nervous system. It first causes seizures, then gradual decline in a child's ability to walk, speak and see, alongside progressive dementia. While there is no cure for Batten Disease, a special enzyme therapy could help slow its relentless progress. But the treatment costs a staggering £500,000 a year per patient and needs to be administered directly in the brain every two weeks, through a permanently implanted device called a port. What is Batten disease? Batten disease is a group of genetic conditions that cause cells to collect waste instead of getting rid of it. It affects the structure and function of cells and ultimately causes their death. The disease leads to seizures, vision loss and problems with thinking and movement. Symptoms get worse over time and children diagnosed with it tend to die early. There are 14 known types of Batten disease grouped into categories based on the age when symptoms begin. The first signs and symptoms of Batten disease include: Vision loss Personality and behavioural changes Clumsiness and issues with coordination, balance and movement Seizures Other symptoms may include: Difficulty with thinking and reasoning Speech and language problems, such speech delay, stuttering and repeating words or phrases Tremors, tics, muscle spasms and twitches Memory loss (dementia) Hallucinations and episodes of psychosis Sleep disturbances Muscle tightness Arm and leg weakness Heart problems, such as arrhythmia (in teens and young adults) Source: Cleveland Clinic The NHS has a special deal in place for children who have already started treatment or who can start it before the end of 2025, according to the National Institute for Health and Care Excellence (NICE). But new patients after that might not be able to get it on the NHS at all, because health bosses say there's not enough long-term evidence it works and the price is too high for the NHS budget. Katie's parents are in a desperate race against time to try to get her onto the treatment before the deadline – or raise enough money to go private or even abroad if they have to. Katie's loved ones have launched a fundraiser to help cover the sky-high treatment costs, specialist equipment and special days out. Grant added: 'We just want Katie to have the best days we can possibly give her. 'She deserves to smile, to laugh and to feel loved every single day we have left.' You can visit the family's fundraiser for Katie here. 12
BBC News
07-07-2025
- Health
- BBC News
Hull Prison told to better care for terminally ill inmates
Hull Prison has been told to improve care for terminally ill inmates, following the death of a prisoner with lung Prisons and Probation Ombudsman raised concerns over the use of restraints during medical treatment and the equipment available inside the prison for palliative care. John Leadbitter, 62, received end of life treatment that was "partially equivalent to that which he could have expected to receive in the community", the watchdog's report Hull has put an action plan in place to address the recommendations. 'Medical objections' The watchdog recommended training staff in the national medical guidelines "Dying Well in Custody Charter".Other improvements included training staff in the use of restraints when taking prisoners to hospital and that risk assessments by prison managers and the decision to use handcuffs should be based on "the actual risk the prisoner poses at the time".The report said that while being taken to hospital he was placed in restraints "despite medical objections" adding, "there was no indication he posed a risk".In addition, the inspector said that some of the paperwork around the decision to use restraints was report also called for the Category B prison's healthcare department to be equipped with syringe pumps to deliver pain relief Leadbitter died in prison on 31 January 2024 of natural causes, Hull Coroners' Court was on remand facing charges of starting a fire at a doctor's surgery in the North Yorkshire village of Ampleforth in August Hull had trained staff to deliver end of life care as part of an action plan put in place to address the recommendations. Listen to highlights from Hull and East Yorkshire on BBC Sounds, watch the latest episode of Look North or tell us about a story you think we should be covering here. Click here, to download the BBC News app from the App Store for iPhone and here, to download the BBC News app from Google Play for Android devices.
Daily Mail
21-06-2025
- Health
- Daily Mail
Fast-track suicide if you pay extra, discount deals for couples and you don't even have to be terminally ill: Inside Germany's morally queasy approach to assisted dying where business is booming for the pedlars of euthanasia
Last week, the UK's highest elected officials ruled on the most existential of questions: how we choose to die. At its third reading, the Assisted Dying Bill passed the Commons by a slim majority of 23 votes, and now its fate lies with the Lords, where it faces a bumpy ride before it becomes law. The upper chamber, for instance, will examine if a three-person panel of professionals (from law, psychiatry and social work) offers greater safety and oversight in approving a patient's application to die than a High Court judge, as was originally proposed. Peers will have at their disposal the grim cost-benefit analysis to the NHS in accelerating the deaths of the terminally ill, released last month under the cover of the local election results. According to the report, as many as 1,300 people are expected to apply to die in the first year, saving as much as £10million in medical bills. But can the health service cope with this demand, especially as NHS staff will be offered an opt-out from the ugly business of state-sponsored suicide? No doubt private health providers are already bending the ears of peers for a slice of the death industry pie. It would be tempting to allow private enterprise to take some of the strain, but I urge the Lords to look at how business seized the opportunity with morally queasy gusto in my native land, Germany, where some firms offer a 'fast track' service for people who can pay more and even special discounts to couples wishing to hasten their demise. Pictured: Pedestrians walk past the posters promoting the Assisted Dying bill at Westminster Underground station In Germany, anyone 18 or over can lawfully commit suicide with the help of a third party. Yes, anyone. There is no requirement for the person to be six months from death, nor is there any specification over having a life-limiting or debilitating illness (as in the UK Bill). A perfectly healthy university student can seek help to kill themselves for no better reason than they are fed up with life. Hannelore Kring, 83, is typical of Germany's liberal approach to assisted suicide. A recording of her death featured in a podcast by news broadcaster WDR and it is a spine-chilling reminder of how relaxed my countrymen are about dying. At an undertaker's, Frau Kring is accompanied by two 'death helpers' – a nurse and retired teacher – and sounds relieved her life will end in a matter of minutes. Dressed in black and with make-up, as if attending a party, she suggests a dance with the nurse. Indeed, she is not ill, she is as healthy as anyone in their 80s. She has run a second-hand men's boutique in Hamburg but feels life's no longer worth living. She's lonely, all her friends have died and the state of the world depresses her. The helpers ask if she really wants to go through with it. 'Absolutely!' she replies enthusiastically. The nurse hooks her up to an infusion of a lethal dose of narcotics – a 'suicide cocktail'. She merely has to turn a valve, letting the toxic chemicals enter her bloodstream, putting her to sleep for ever. It's important she takes the final step herself, otherwise the helpers could be charged with manslaughter. Assisted suicides like this have been fully legal in Germany since 2020, although legislation has been a generation in the making. After the Second World War the subject was largely taboo, in no small part due to revulsion at the Nazis' Aktion T4 programme, which entailed the 'mercy killing' of 300,000 disabled people. By the 1970s and 1980s, a push for more patient autonomy led to court decisions in 1984 and 1990 that ensured suffering, bed-ridden people had the right to stop treatments that prolonged their lives. With the 2009 Patient Directive Law, people could include such instructions in a living will if they became incapacitated. This gave legal protections to doctors offering assisted suicide. But then the public grew uneasy at what seemed a creeping commercialisation of the right to die. Healthcare is not free at the point of use in Germany, so the nation is more comfortable than the UK with private provision within the system. But only up to a point. Many were appalled in 2014 when a Berlin urologist Uwe-Christian Arnold revealed he had helped 'several hundred people' take their lives since the late 1990s for fees of up to €10,000. Christian groups accused him of undermining the sanctity of life. The German Medical Association threatened him with a €50,000 fine, saying doctors should prolong life, not give their patients lethal poisons. Arnold took them to court over the fine and won. Also in 2014, a right-to-die association in Hamburg caused uproar for offering fast-track assisted suicide consultations in exchange for higher membership fees. Its normal rate was €2,000, with a waiting time of a year, but it introduced a jump-the-queue service for €7,000. Other providers offered discounts for couples interested in dying together. These were grisly bargains that lead many to regard Germany as a Las Vegas of suicide, which was anathema to a country that saw itself as otherwise Christian and conservative. Church groups took to Berlin's streets as legislators sought to crack down on the industry. Arnold and others passionately defended their businesses. The 'death helpers' argued the issue was comparable to abortion: a ban would be unfair to the terminally ill, who shouldn't have to travel to places like Switzerland to end their lives with dignity. The debate ended with parliament banning 'commercial' assisted suicide under Chancellor Angela Merkel in 2015. Subsequently, only friends and relatives who received no money for their assistance could help someone end their life. Legal challenges were launched by right-to-die advocates and people suffering terminal illnesses. In a 2020 judgement, the Constitutional Court said the freedoms enshrined in the country's post-war constitution meant 'the decision to take one's own life must be respected by the state as an act of personal autonomy'. Those who had been put out of work by the previous ruling were free to ply their trade once again. Five years after that decision, it feels like we're back to the Wild West of pre-2015. Assisted suicide in Germany is an unregulated free-for-all. A slew of undertakers, lawyers and independent doctors are facilitating a rising toll of assisted deaths. Last year it was about 1,000, though no one is keeping exact figures. Likewise there's no central registry of providers. Nearly anyone can set up shop. The largest player in the business is the German Association for Humane Dying (DGHS), which charges €4,000 a suicide but offers a discounted €6,000 for couples. It says that of the 623 people for whom it arranged suicide last year (it forwards requests to independent teams of doctors and lawyers), 22 per cent were just 'fed up with life'. Two-thirds were female. DGHS spokesperson Wega Wetzel says: 'Women are more likely to be widowed and 'left over' than men. Women are more likely to plan and communicate, while men often choose 'hard' suicide methods such as hanging.' Equally worrying is the fact that nothing prevents young people from choosing the path of assisted suicide. The youngest case I heard of was a 21-year-old man. The only requirement spelled out by the court was that the person be 'freely responsible' for their decision. At least DGHS, to maintain its reputation, has doctors and lawyers screen applicants to ensure they understand what they're getting into, that they're not being coerced and that they do not show symptoms of mental illness or dementia. But nobody knows how many independent providers are making money with assisted suicide. Nobody knows how they are screening clients, particularly in the more affordable services where standards may be lower. A study last month in the British Medical Journal analysed 77 assisted suicides in Munich. It found that one patient's consultation with a clinic lasted 55 minutes and the death was booked for the next day. The assisting physician in another case was a relative of the patient. In a 2022 case, the suicidal person was judged of sound mind based on a five-year-old mental capacity evaluation. But there is still broad support for the right to die: 80 per cent of Germans feel it's appropriate for the critically ill. But just 30 per cent say it should be available to people with a long life ahead of them, and only 3 per cent for young people having a crisis. Ute Lewitzska, professor for suicide studies at Frankfurt University, sees a fundamental change in how we deal with growing old. 'Supply creates demand,' she says. 'The 2020 court decision didn't just open a crack in the door, it flung the door wide open – and we're not going to be able to close that door again.' The fear is a normalisation of assisted suicide. For some it's a humane way to end one's life; for others it's an easy solution to suffering that's being oversold. Dr Lukas Radbruch, director of palliative care at University Clinic Bonn, has worked with end-of-life patients for three decades. He says many more now ask about assisted suicide but 'so many people are not sufficiently informed. Or we have doubts about how voluntary their choice is. Or we realise they still want to live, even if they say they want to die.' Sometimes a suicidal person needs counselling, not the means to kill themselves. Where do you draw the line? Dr Radbruch asks. In 2023 the German parliament tried to hammer out rules to provide clearer guidance, but MPs couldn't reach a consensus. Like many in the West, Germany seems destined to grope its way through this ethical minefield with no transparent way forward that is satisfactory for all. I do not envy the task ahead for Britain's Lords. My country's experience offers a salutary lesson that for the Bill to become law, they must make black and white what is a painfully grey issue.
Yahoo
21-06-2025
- Politics
- Yahoo
Island MPs share concern over Assisted Dying Bill after House of Commons vote
THE Isle of Wight MPs have expressed concern over the passing of the Assisted Dying Bill. The bill, which was backed by a majority of MPs, allows terminally ill adults with a life expectancy of less than six months to end their lives. Despite warnings from opponents about the safety of the legislation, the bill took another step in the parliamentary process after being approved by 314 votes to 291 in the House of Commons yesterday (Friday). Labour's Isle of Wight West MP, Richard Quigley, consistently voted against the bill at every stage. Read more: Following the news of its passing, Richard said: "This bill was always going to be emotional, but it was never about winning or losing, but having the chance to debate. "We have done that and the bill has now passed. "My opposition is based on the belief the safeguards, particularly around the so-called 'anorexia loophole,' are not robust or comprehensive enough." He urged the House of Lords to apply "rigorous scrutiny" to the bill as it progresses. Richard stressed the importance of examining every aspect of its implementation, paying close attention to the risks and unresolved unintended consequences. The Isle of Wight East MP, Joe Robertson, also voted against the bill. He shared his concerns, saying: "I voted against the Assisted Dying Bill — not because I am against the principle of wanting to relieve suffering, but because there are too many loopholes, too few safeguards and potential for unintended consequences." Joe, with great experience in the legal profession, criticised amendments made to the bill since the last vote — particularly the replacement of a role for a High Court judge with a 'panel' of professionals, with no power to summon witnesses. He said: "It means judges can decide whether a child has been coerced into wanting to spend time with only one parent (in divorce proceedings), but not whether a grandparent has been coerced into wanting to end their life (under assisted dying laws). "As a former family lawyer, I find this both perverse and dangerous." The concerns raised by both MPs reflect the apprehensions of a significant number of opponents who believe the bill was rushed through without adequate consideration of the potential risks. The bill will now move to the House of Lords for further scrutiny.
Malay Mail
21-06-2025
- Health
- Malay Mail
UK MPs vote in favour of assisted dying Bill in historic step
LONDON, June 21 — Britain's parliament took a historic step towards allowing euthanasia yesterday when MPs backed contentious legislation that would introduce assisted dying for terminally ill people. Lawmakers in the lower House of Commons chamber voted 314 in favour to 291 to send the proposal to the upper House of Lords for further scrutiny following four hours of emotional debate. The outcome sparked celebrations among supporters gathered outside parliament who say legalised euthanasia will give people with an incurable illness dignity and choice at the end of their lives. But opponents attending a neighbouring counter-protest said they feared vulnerable people could be coerced into dying and urged lawmakers to focus on improving palliative care instead. The Terminally Ill Adults (End of Life) Bill would allow assisted suicide in England and Wales for adults who have been given less than six months to live. They would have to be able to administer the life-ending substance themselves, and any patient's wish to die would have to be signed off by two doctors and a panel of experts. A change in the law would see Britain emulate several other countries in Europe and elsewhere that allow some form of assisted dying, including Belgium and the Netherlands. 'Heartbreaking stories' Labour MP Kim Leadbeater, who proposed the legislation, told yesterday's so-called third reading debate that a law change would 'offer a compassionate and safe choice' for terminally ill people. She said maintaining the status quo would mean more 'heartbreaking stories' of 'pain and trauma, suicide attempts, PTSD, lonely trips to Switzerland, (and) police investigations'. But Vicky Foxcroft, also of Labour, said the proposal did not include adequate safeguards for disabled people. 'We have to protect those people who are susceptible to coercion, who already feel like society doesn't value them, who often feel like a burden to the state, society and their family,' she pleaded. Outside parliament, protesters waved placards with slogans including 'Let us choose' and 'Don't make doctors killers'. David Walker, 82, said he supported changing the law because he saw his wife of 60 years suffer for three years at the end of her life. 'That's why I'm here, because I can't help her anymore, but I can help other people who are going through the same thing, because if you have no quality of life, you have nothing,' he told AFP. But Elizabeth Burden, a 52-year-old doctor, said she feared the legislation would open 'slippery slope' where those eligible for assisted dying expands. 'Once we allow this. Everything will slip down because dementia patients, all patients... are vulnerable,' she told AFP. Public support MPs in the 650-seat parliament backed an earlier version of the proposed legislation by 330 to 275 votes at an initial vote in parliament last November, a larger majority than yesterday's 23. Since then, the Bill has undergone several changes, including applying a ban on adverts for assisted dying and allowing all health workers to opt out of helping someone end their life. MPs added a safeguard which would prevent a person being eligible 'solely as a result of voluntarily stopping eating or drinking', ruling out people with anorexia. Britain's medical community and Prime Minister Keir Starmer's top ministerial team are split on the proposed law change. Starmer voted in favour, while his health and justice secretaries opposed it. But in a YouGov poll of 2,003 adults, surveyed last month and published Thursday, 73 per cent or respondents backed an assisted dying law. 'Change is coming,' hailed Sarah Wootton, chief executive of the Dignity in Dying campaign group. But Catherine Robinson of Right To Life UK insisted the Bill 'still faces an uphill battle' to get through the Lords and her opposition campaign group 'will be fighting it at every stage' to prevent it becoming law. The House of Lords now needs to approve the legislation before the end of the current parliamentary year, likely in the autumn, or the Bill will fail. If it passes and receives royal assent, it would still be four years before an assisted dying service was implemented. A government impact assessment published this month estimated that approximately 160 to 640 assisted deaths could take place in the first year, rising to a possible 4,500 in a decade. Assisted suicide currently carries a maximum prison sentence of 14 years in England, Wales and Northern Ireland. Separate legislation is going through the devolved Scottish parliament. At the end of March, the Isle of Man became the first British territory to pass an assisted dying Bill. — AFP
