Latest news with #EpilepsyAction
ITV News
4 days ago
- Health
- ITV News
Oxford professor says thousands of children harmed by drug used for epilepsy is a 'major scandal'
ITV Meridian's Christine Alsford reports A leading professor from Oxford says 40 years of inaction led to thousands of children being harmed by a drug used to treat epilepsy. Carl Heneghan runs the Centre for Evidence-Based Medicine and says serious failings led to generations of children suffering disabilities caused by sodium valproate. Sodium valproate has been used for decades to save the lives of women with epilepsy, but it has also been harming babies. If taken during pregnancy, it increases the risk of birth defects, autism, cleft palate and spina bifida. The professor from Oxford has studied what research was available when and believes doctors and regulators failed families. Carl Heneghan said: "I'd say with certainty it was about 1992 that the clinical evidence was quite clear - there was a more than doubling of the risk of congenital malformations. "Yet this drug continued to be used widespread across the country for women of childbearing age." "I think about it as a major scandal." "If you look at the time span, there was a near sort of 40 years of inaction around the evidence of harms." He says warning and action should have happened far sooner. Professor Carl Heneghan from the Centre for Evidence-Based Medicine Professor Heneghan said: "About 1 in 10 women were having congenital malformations on this drug, if they were taking sodium valproate or Epilim pregnancy. "It's been a complete regulatory failing, a complete failing of clinical practice to act on the signals of harm." Women who spoke to ITV Meridian say they weren't warned that their epilepsy medication risked causing birth defects in their children say they feel 'abandoned and forgotten' by the government. Penny Johnson's son Alan was born ten years after Sarah in 1999. He has mobility problems and autism. "There was no warnings on the box," said Penny. "Nothing said that I shouldn't take the medication before trying for a baby. There was nothing." Penny Johnson, a mother who took sodium valproate Penny said: "I was angry, I was upset, I felt the guilt because I took the medication. "I mean Alan bless him, says it's not my fault, the doctors told me, but still, to me, I've done that, I've done that to him. "And it breaks my heart." Charities such as Epilepsy Action say as the parents of the children affected get older, the need for redress is becoming more urgent. Chantal Spittles from the charity said: "We know that it's costing an average family around £30,000 extra a year just to be able to look after their now adult children. "Often, many of them need 24-hour care. "They worry about the future, and that's a scandal as well. "You shouldn't have to worry about what's going to happen to your children. " Mothers who took epilepsy drug that led to birth defects feel 'abandoned' They're just worried that they are going to be left behind again and left to fall though the cracks yet again." A major review into sodium valproate was published over a year ago and said those affected should be compensated. A spokesperson from the Department of Health and Social Care said: "We are fully focused on how best to support patients and prevent future harm. "The Government is carefully considering the Patient Safety Commissioner's recommendations in full." Medical regulator the MHRA said: "Since 1974 product information for healthcare professionals has always included a warning about the risks of valproate use during pregnancy. "In the 70s and 80s, few medicines were supplied with any printed information for patients. "The first patient information leaflet for valproate, approved in 1989, advised patients to contact their doctor if pregnant or planning a pregnancy so risks could be discussed."
BBC News
11-06-2025
- Health
- BBC News
Rotherham widower continues wife's epilepsy fundraising legacy
A widower from Rotherham has said he is determined to continue his wife's legacy raising awareness about the dangers of epilepsy, a year on from her Scott died in May 2024 of sudden death in epilepsy syndrome, a rare disorder affecting about one in 1,000 people with Scott said that before her death, his wife had campaigned for the charity Epilepsy Action, but often found people did not take the illness seriously, something he said "must change".Mr Scott said: "I want to get the message out there that this isn't trivial. This is serious." He said his wife had "fought to give epilepsy a fair hearing, but I don't think people really appreciated it"."After what's happened, it's now very difficult to argue with," he added. Ms Scott suffered her first epileptic seizure at school at the age of 12 while she was in front of a computer screen. She was later diagnosed with photosensitive epilepsy, also known as visually sensitive epilepsy, a condition where seizures are triggered by flashing or flickering 16, she also developed juvenile myoclonic epilepsy, a common form of epilepsy characterised by sudden muscle to Ms Scott's mum, Cairon Turner, it was a "frightening experience" for her daughter, but it never stopped her."She was a whirlwind and did everything she wanted to. She went on music tours abroad with school, she even went with her friend to Spain after GCSEs," she Turner said the prospect that epilepsy could end her daughter's life was something that she had considered, but refused to dwell upon."It's always at the back of your mind," she explained."Each time she had a seizure it was there, but we never spoke about it."A number of times we had the call and came tearing down here to her home and I wondered what we would find." Mr Scott, who works on the railways, said that since his wife's death he had been forced to take on the role of sole parent for his three-year-old son. He admitted that the "responsibility can weigh heavily" at times."It can be relentless. I still have to work full time and you can never switch off. Others can help but the buck stops here: he's my son," he said."I'm very aware he's already gone through such a lot, and making sure his life is the best it can be is now the most important thing to me."Mr Scott said he had gone on his own fitness journey in a bid to raise money for Epilepsy Action, losing four stone (25kg) in the said he also regularly ran 10 miles (16km) and swam three times a week, and planned to take part in The Great North Run to raise money for the charity in September."I'd rather I wasn't in this position," he said."But I feel a responsibility to carry on Jo's work and to try and get that message out there that this isn't trivial, this is serious, and it needs to be better understood."He added: "What I am trying to do is to do all I can to stop other families going through this." Epilepsy Action primarily supports people with epilepsy with a helpline and also offers a befriending and counselling Smith, the charity's CEO, admitted that "raising awareness without scaring people unnecessarily" was important."People can die from epilepsy, but it is still rare," she said."About 600,000 in the UK have epilepsy and every day three people die from sudden unexpected death in epilepsy - so that is something people need to be aware of."However, Ms Smith acknowledged epilepsy was still a mystery condition for many people."Because it's actually a range of conditions, people don't always take it as seriously as they should," she said."People know about flashing lights, but that's really only one small percentage." Listen to highlights from South Yorkshire on BBC Sounds, catch up with the latest episode of Look North
BBC News
03-06-2025
- General
- BBC News
Bradford 10k record broken by runner recovering from bad knee
A runner recovering from a bad knee set a new course record in a West Yorkshire 10k Jack Cummings knocked 15 seconds off the best time for the Epilepsy Action Bradford 10k race on 27-year-old's time of 30:47 broke the 6.2-mile course record of 31:02 set in 2013 by Tesfaye Cummings, who also won May's Rob Burrow Leeds half-marathon in 1:08:36, said the moment of victory in his latest win was "unreal". The personal trainer said: "I didn't actually know the record but since I've broken it, it's been lovely. "I used to be in the middle of the pack when running but I fell back in love with it about six years ago. "I really found my feet. I've had no special training and no coaches. "I've been recovering from a knee injury so when I completed the 10k, it felt unreal."This year's race celebrated Epilepsy Action's 75th anniversary as well as Bradford becoming UK City of Culture in 2025. The charity, which aims to improve the lives of people living with epilepsy, said this year's course was the flattest to date, taking runners through the newly pedestrianised streets of the city centre.
Daily Mail
11-05-2025
- Health
- Daily Mail
Pregnant mother, 29, and unborn baby girl die at home in double tragedy
A young pregnant mother and her unborn baby girl both died in a double tragedy at her home, an inquest has heard. Aliesha Fisher, 29, was found dead on her bedroom floor by her cousin just weeks before she was due to give birth. She had last been seen alive the night before at 11pm before being found unresponsive just 11 hours later, Preston Coroner's Court heard. Paramedics rushed to her home address in Lancashire on December 27 last year to try to save her life, but were unable to resuscitate her, Lancashire Live reported. Aliesha was 30 weeks pregnant at the time of her death. Medics were unable to find a heartbeat for the unborn baby, which was later named Aria. Area Coroner Kate Bisset said: 'She was last seen alive by her family at around 11pm. At around 10am the following morning her cousin woke on the couch and noticed Aliesha was on the floor of her bedroom not moving. 'Paramedics [confirmed death] shortly afterwards. She was 30 weeks pregnant. The paramedics sadly confirmed no evidence of life from the baby. 'The final inquest will consider the cause of death and what led to the tragic loss of this young woman and her unborn baby. There is no suggestion of self-harm or any deliberate causes of this baby's death.' A full inquest is scheduled to take place on July 16. Tributes were posted on memorial online site muchloved, which has been set up in Aliesha's memory to raise money for charity Epilepsy Action, describing her as a 'gorgeous girl'. One heartbreaking tribute read: 'Love and miss you so much. Life really ain't the same anymore. Just sit and wait for you to message me ranting on about something. Alls I think about is you in that room by yourself with Aria, dark and cold. 'I know how much you hated being alone. I hope you are surrounded by love and laughter Aliesha. 'I hope you're making sure everything is still in check and you have the final say. I will see you again someday. Until then. You sleep tight and finally sleep peacefully. I love you forever and a day.'
BBC News
28-03-2025
- BBC News
Arrested Devon man called for medical help before cell death
A man who was found dead in a police cell had told officers he had taken cocaine and heroin and felt like he was going to die, an inquest jury has heard. Father-of-one Simeon Francis, 35, was arrested in the early hours of 20 May 2020 in Exeter and taken to Torquay police station for questioning over a stolen his arrest he pleaded for medical attention and was placed in a cell where he was later found was declared dead at 18:07 GMT, and the inquest at Exeter Coroner's court ruled Mr Francis died of natural causes and Sudden Unexpected Death in Epilepsy (SUDEP). 'Very popular man' The jury heard that when Mr Francis was arrested and placed in a police vehicle, he told officers: "I have taken loads of cocaine and heroin. I am feeling like my heart's pounding. I am passing out."I feel like I am going to die. Take me to hospital."Home Office forensic pathologist Dr Deborah Cook attributed his death to SUDEP, noting his history of alcohol and drug misuse. The inquest ruled the authorities had acted appropriately and reasonably in the to the Epilepsy Action charity, SUDEP is a rare condition which affects about one in every 1,000 adults with epilepsy each risk of SUDEP was higher for people experiencing frequent uncontrolled seizures, sleep seizures, or for people not taking their medication regularly, the charity Francis's father described his son as a "funny, very popular, kind" man from a large family who struggled after his mother's death.
