Latest news with #epilepsy
BBC News
4 days ago
- BBC News
Man jailed for nine years after leaving woman brain damaged
A man has been jailed for nine years after attacking a woman in the street, leaving her brain Harvey was earlier convicted of attempting to murder Carol O'Reilly, who he was briefly in a relationship with, on 1 October repeatedly hit her head off the ground during an assault in Glasgow city centre that was captured on O'Reilly is now living with permanent damage to her brain and some memory loss. She has also been diagnosed with epilepsy and takes medication for seizures. She told BBC Scotland News she has had to learn how to walk, talk and swallow again after spending six months in said the way she speaks has changed since the attack."I don't like my speech now," she said. "Sometimes, I listen back to old voice notes [of myself]. I used to speak really fast." Ms O'Reilly had broken bones in her back, neck, cheek bone, eye-socket and has had three surgeries on her brain, including a craniectomy. This is where part of the skull is removed to operate and the bone is kept alive in the said she now struggles to do some everyday things such as putting a bobble in her hair."I can't put a bra on either, I need to wear a sports one," she said. And trying to grab stuff with my hand is hard."I'm just tired all the time, I don't really go out that much, I don't trust people."Ms O'Reilly has questions over how police handled events that turned up at the scene but the court heard it appeared Harvey had managed to "talk his way out of handcuffs", despite Ms O'Reilly's said police then put her in their van with her attacker and dropped them at Glasgow Royal made her leave without receiving medical pair returned to the hotel they were sharing in Glasgow city centre. Harvey had to carry Ms O'Reilly back to their room where the assault was discovered unconscious by hotel staff the following morning when they were late for checkout and police were called."Why, why did they leave me with him and put me in the back of the van with him," she said."They should have separated us - one of them take me to the hospital, the other take him to the cells, until they could watch the CCTV."She said the footage showed her head being hit off bus stops."It could've been a murder, I could've died. And my kids would've been left without a mum." No access to report The BBC put these points to Police Scotland, asking why Ms O'Reilly was not separated from her attacker, why Michael Harvey was not arrested and if Police Scotland would apologise to Scotland said: "On Sunday, 1 October, 2023, officers attended at Waterloo Street, Glasgow following a report of an assault. After carrying out inquiries at the scene and speaking to witnesses, no criminality was established at the time."The injuries presented did not require an ambulance to be called, however the attending officers took two people to hospital for assessment."Police Scotland referred the circumstances of the incident to the Police Investigations & Review Commissioner (Pirc) who made one recommendation which has been implemented."We have not received a complaint relating to this case, however we would encourage anyone with concerns to come forward and speak to us."Pirc gave its findings to the chief constable in December last O'Reilly has never been given access to the report. The BBC also requested to see it but was Scotland News asked Police Scotland who Ms O'Reilly should contact directly to ask for the report but they declined to answer. 'Carol has changed as a person' Her sister Donna O'Reilly said it shouldn't be so difficult for the family to get answers."The victim should be priority. Because it's them that need the answers to move forward," she said."It's been very hard because Carol has changed as a person and obviously we're trying to make sure she's OK."And we can't give her the answers she needs because we don't know them…so it's been hard."The family say what they need now is sentencing of Harvey is one step towards Ms O'Reilly is still left with questions and no clear direction as to how she gets asked what she wants for the rest of her life, she said: "To be a mum again, obviously it's hard being a full-time mum."But I was always active with them. And now I can't do stuff like that."BBC Scotland News asked Pirc for its findings in the said: "We investigated the circumstances surrounding the serious injury of a 39-year-old woman on 1 October 2023 in Glasgow following police contact."Our report was provided to the chief constable and is now a matter for Police Scotland. We consider our report to be confidential and therefore have nothing further to add."Our reports are confidential for various reasons such as ongoing legal proceedings, protection of anonymity or matters relating to data protection."
Daily Mail
6 days ago
- Health
- Daily Mail
Top Aussie athlete reveals how a virus left her unable to walk or talk before doctors finally solved the health mystery after two years of torture
A track athlete who previously represented Australia at the Commonwealth Youth Games has urged people to 'live each day like it is your last' after being diagnosed with autoimmune encephalitis. In 2023, Tiana Death from Queenscliff on Sydney 's northern beaches, began experiencing flu-like symptoms, constant fatigue as well as terrible headaches. One morning she was found at home unconscious, after suffering a seizure during the night. She was rushed to hospital, and couldn't walk or talk as her body began to shut down. Doctors frantically performed anti-seizure medications and lumbar punctures in a bid to resolve Tiana's health, but were left searching for answers. Eventually the talented junior hurdler, 24, was diagnosed with epilepsy, which forced her to again learn how to talk, write and walk. Tiana recently documented her brave journey in a lengthy Instagram post - she also is on six different anti-seizure drugs A few weeks ago doctors finally confirmed Tiana has autoimmune encephalitis, a condition which sees the immune system mistakenly attack the brain. Inflammation often follows, and in Tiana's case, constant seizures. While remaining upbeat, Tiana is on a high-dose of steroids, and receives monthly plasma treatments to suppress her immune system. 'This will likely be a lifelong journey,' she said in a lengthy Instagram post earlier this month. 'It's a hard card to be dealt, and it's taken a toll on every part of my life. 'It is a cliché, but it's true. Live each day like it's your last. You really don't know what's around the corner.' Tiana's mother Kylie said it has been heartbreaking to watch her daughter struggle. 'She's on six different anti-seizure drugs, but still having seizures which basically means she's drug resistant,' she said. 'Tragically, it is her life now. 'She is so resilient and she's truly my hero.'
Khaleej Times
7 days ago
- Health
- Khaleej Times
Meet UAE woman who developed life-saving epilepsy app after seeing father collapse
When Noor Al Bannai witnessed her father, Abdul Hakeem, collapse during an epileptic seizure, it was a moment that changed everything. What began as a daughter's desperate wish to protect her father soon evolved into a groundbreaking innovation — a mobile application that could one day save lives across the UAE and beyond. The innovative Epiware app, developed by Al Bannai, represents a breakthrough in epilepsy detection technology, combining smart home integration, wearable devices, and mobile applications to provide instant emergency response when seizures occur. 'I was (just) a young girl who wanted to protect her father,' the Emirati woman recalled. 'I never imagined I would create something that could change his life." Abdul Hakeem Al Bannai had always been known for his warm, outgoing nature. He enjoyed gatherings, cherished social gatherings, and embraced life with energy. But everything changed the day epilepsy struck without warning. He had no prior understanding of the condition. The symptoms escalated rapidly — a sudden, severe headache followed by a collapse. He was rushed to the hospital, where doctors confirmed the diagnosis: epilepsy. Impact of the diagnosis The impact of the diagnosis rippled through the family. Once outgoing and vibrant, Abdul Hakeem became withdrawn and anxious. He stopped attending social events and avoided going out altogether — a stark contrast to his naturally outgoing personality. This transformation in her father deeply affected Noor. Seeing the man she once knew shrink into a life of fear and isolation, she became determined to find a solution. Noor shared that she was constantly worried that something might happen to her father when no one was home. 'Stress and fear is what inspired me. I didn't want to remain in constant fear that at any minute, at any moment, if I wasn't at home or if any of my siblings or my mother weren't there, something might happen to my father,' Noor explained. Motivated by this fear, she began researching epilepsy and was shocked to find a lack of effective solutions. 'I started searching for solutions for epilepsy, but unfortunately I didn't find anything, so I felt that the responsibility was on my shoulders. I decided that I must innovate something for people so they don't go through what we went through, and to improve the life of every person suffering from epilepsy and those around them,' she said. Noor's mission took shape during her final year at university, coinciding with the early stages of her father's condition. 'I graduated, researched, and doctors helped me in this field and introduced me to the types of epilepsy and other aspects,' she recalled. Building Epiware from scratch Noor's journey was far from easy. With no background in technology or healthcare, she faced steep learning curves on both fronts. 'I didn't know much about epilepsy at first. I later learned that there are six different types of seizures,' she said. Undeterred, she collaborated with medical professionals and tech experts to bring her idea to life. The result was Epiware — a three-part system combining smart home technology, a wearable device, and a mobile app, all seamlessly connected. The system's sophisticated detection capabilities monitor multiple physiological indicators simultaneously. 'The technology monitors several vital signs, including changes in brain waves and body temperature," Noor explained. "If a seizure is detected, the system sends a distress signal to emergency services, notifies the doctor, and automatically generates a patient report," she added. This level of monitoring means that even when no one is home, help can be dispatched immediately — addressing the very concern that first inspired Noor's work. Breaking stigma For Abdul Hakeem, witnessing his daughter's transformation of their family's struggle into a solution for others has been a source of immense pride and hope. The man who once retreated from social life due to his condition now sees his experience being used to uplift others. 'It's like watching a seed grow,' he said. 'Noor hasn't just helped me — she's also offering hope to so many people who need this kind of support.' Beyond the technological innovation, Noor's work carries an important message about epilepsy awareness and the need to combat misconceptions surrounding the condition. 'I want people to understand that epilepsy is a neurological disorder. It's not possession or superstition. People can suddenly die from seizures," Noor said, noting that awareness is important.
Globe and Mail
11-07-2025
- Health
- Globe and Mail
A Canadian man died in ICE custody. Now, his family is searching for answers
But in 2023, he was convicted of several drug-related charges – a turn of events that changed everything. Under American immigration laws, non-U.S. citizens convicted of drug offences may be removed from the country. Mr. Noviello's brother wanted to do everything he could to make the transition back to Canada seamless. He went to the Montreal church where Mr. Noviello had been baptized to request a copy of his birth certificate, which he needed in order to get his Canadian documents. And he found Mr. Noviello a private doctor who agreed to see him when he arrived, which was crucial because Mr. Noviello relied on anti-seizure medication to treat epilepsy. But five weeks after Mr. Noviello was picked up by U.S. Immigration and Customs Enforcement, his family was still waiting. Mr. Noviello was being held at the Federal Detention Centre, Miami – a Bureau of Prisons facility with a history of complaints related to medically vulnerable inmates. On June 23, at 12:54 p.m., Mr. Noviello was found unresponsive. Medical staff called 911 and tried to resuscitate him, but at 1:36 p.m., the Miami Fire Rescue Department pronounced him dead. He is one of 11 people to die in ICE custody so far this year. His death is under investigation, and an autopsy report is expected to be made public in the coming weeks. Now, his loved ones are seeking answers. They want to find out if untreated epilepsy contributed to his death. They want to know why Mr. Noviello was detained in a prison for 40 days – and why he was unreachable apart from one brief phone call. The unanswered questions about his incarceration and subsequent death – no matter the cause – are indicative of a lack of transparency in the United States' expansive use of detention as a tool for immigration enforcement. The Trump administration's immigration crackdown has led to a sharp increase in the number of incarcerated individuals – up 56 per cent over last year to a total of nearly 58,000, including 55 cases involving Canadians. With the U.S. Congress recently approving a budget that includes $30-billion toward more arrests and deportations, the concerns about due process and detention conditions raised by Mr. Noviello's case have become more pressing. In an interview with The Globe and Mail in Daytona Beach, Mr. Noviello's father said he had come to terms with the fact that his son – who was at his side most of his life, helping out at the family's used car dealership – was being sent back to Canada. He was comforted by the fact that relatives would welcome him and help him start his new life. 'I wasn't feeling that bad for him to go over there,' Angelo Noviello said from his black leather chair in his office overlooking the car lot, Daytona Auto Sales. 'But he didn't – never made it.' The 80-year-old car salesman leaned back. 'It's his birthday today,' he said. It was Canada Day. His son would have been 50. Mr. Noviello was among dozens of Canadian citizens who are being held at immigration-related detention centres across the United States. Global Affairs Canada said it's aware of approximately 55 cases involving Canadians held in ICE custody. In an effort to uncover more about Mr. Noviello and the circumstances surrounding his death, The Globe travelled to Florida, interviewed several of Mr. Noviello's relatives and close friends, as well as his former criminal attorney. The reporting involved reviewing hundreds of pages of court documents dating back to the early 1990s, as well as interviews with immigration lawyers and advocates from across the United States. The Globe's reporting found that Mr. Noviello's prolonged detention in a prison with a troubling record was a result of a system not equipped to handle the growing number of people at risk of deportation. The situation has become so unwieldy that ICE has had to enter into agreements with the Bureau of Prisons to take on some of its overflow, including at FDC Miami. No officials provided any explanation to The Globe about why Mr. Noviello was detained for 40 days. His relatives say they were not able to access Mr. Noviello, whose medical needs were of significant concern. Epilepsy medications must be taken routinely in order to prevent seizures, which can cause brain damage or death, particularly if an episode is prolonged. ICE did not respond to more than two dozen questions sent by The Globe over a period of two weeks. The Bureau of Prisons didn't provide information about the conditions of Mr. Noviello's confinement or about his access to medical care, citing privacy and security reasons. Fire and Rescue Miami said it could not provide information about its response at the scene, also citing privacy. Mr. Noviello's cause of death was redacted on a recent court document officially closing his criminal file. Neither Canadian nor American authorities responded to questions about why approximately 55 Canadians are being held, how long they've been detained, or where they're incarcerated. The White House is devoting unprecedented resources to arresting immigrants – and has directed ICE to arrest at least 3,000 people a day, several times the average during the final year of the Biden administration. The crackdown has ensnared everyone from asylum seekers to legal U.S. residents. People under threat of removal are now at greater risk of incarceration while awaiting immigration court decisions: The 58,000 immigrants who are being held in detention, according to ICE data published July 8, exceeds the highest detention levels set by the previous Trump administration back in 2019. During Mr. Noviello's initial detention in Orlando, his father, Angelo, drove there to drop off his medication. He didn't see him that day and doesn't know if Mr. Noviello ever got the medication. He only managed to connect with his son once after Mr. Noviello's May 15 arrest at a probation office. 'They let him talk two minutes,' the grieving father told The Globe. 'As soon as the two minutes was up, they shut the phone on him.' It was the last time the father and son would speak. Johnny Noviello moved with family from Quebec to Florida in 1988, seeking a warmer climate – one Angelo said he thought would be better for his son's health. Angelo said Mr. Noviello came into the world 'feet first,' causing oxygen deprivation. Not long after he was born, Angelo said, his son was diagnosed with epilepsy. 'Everybody loved Johnny,' his father said. Mr. Noviello maintained close ties to Canada, making regular trips to see family in Montreal, his father added. That affection toward Mr. Noviello was palpable at the Dollar Tree where he recently worked. Employees said company policy prevented them from speaking with journalists – but their gazes searched for answers and often met the ground, revealing their grief. His friends and family described him as kind and dependable. Jason Belanger, 48, met Mr. Noviello in high school, and they had been friends ever since. Mr. Belanger said he trusted Mr. Noviello with everything, from picking up his kids to having spare sets of keys to his house and car. 'I consider him my brother,' he said. In Angelo Noviello's auto shop, Joseph Colombo, 51, said when he met Mr. Noviello two decades ago, they 'just clicked.' They would shoot pool, hang out and had a shared interest in cars. Mr. Noviello was laid back, he said. 'Couldn't get him mad, you know?' Mr. Colombo said Mr. Noviello was the type of friend who would give you the shirt off his back. 'It's just sad.' He said it's not fair that Mr. Noviello, who lived in Florida for most of his life, was picked up by ICE. 'Because I look at the man, he was healthy before he went in there and all of a sudden now he's gone.' While Angelo became a U.S. citizen years ago, Mr. Noviello remained a permanent resident. He struggled with the citizenship test and failed multiple attempts to pass it. The fact that he wasn't a citizen and had a serious encounter with the law ultimately made him a target for deportation. In the summer of 2014, Drug Enforcement Agency agents met with a confidential source who claimed a man named Angelo was selling oxycodone and morphine tablets out of his car dealership in Volusia County, according to court documents reviewed by The Globe. The Daytona Beach dealership belonged to Angelo Noviello, the DEA's subsequent investigation found, and after 'extensive' surveillance, including wire taps, Angelo was identified as the 'sponsor' of an alleged drug operation. This refers to an individual who pays a 'doctor shopper' to visit pain management clinics to obtain narcotics and resell them. Court documents state Mr. Noviello assumed drug-dealing responsibilities at the dealership when Angelo was not available. After being charged in 2017, Mr. Noviello pleaded not guilty. Subsequent court filings show his medical condition soon became an issue. He required Klonopin to treat his epilepsy, but the county jail infirmary did not stock it. Mr. Noviello also needed an anti-convulsant, Tegretol, but was only receiving 75 per cent of his regular dosage while in prison, a motion for bond reduction said. In 2021, with his case still not resolved, Mr. Noviello sought permission to travel to Canada to visit his mother in Quebec, who had Alzheimer's disease and was terminally ill, according to submissions made in court. This request – and a subsequent one to attend his mother's funeral – was denied. In September of that year, Mr. Noviello wrote a handwritten letter to the Daytona Beach Justice Centre pleading for help, court records show. He was willing to take a lower charge because he wasn't 'about to let my father take all the heat,' he wrote. But after speaking with his lawyer, he believed he'd only been charged because he worked at his father's business. 'This isn't fair to me,' the letter reads. 'This is my first time ever in trouble.' Almost five years after the initial charges were laid, Mr. Noviello and his father agreed to plead guilty to racketeering and drug trafficking. Mr. Noviello was sentenced to 12 months of jail time but only served four because of his pretrial detention period and good behaviour, according to his former criminal defence lawyer, Daniel Leising. Mr. Noviello was also ordered to complete two years of community control – a form of intensive supervised custody – and 18 years of probation. Earlier this year, the courts agreed to end his community control early, leaving him to serve out the remainder of his probation period. Mr. Noviello was ordered to abstain from drugs or alcohol, to submit to random urine tests, and to 'work diligently at a lawful occupation.' Mr. Leising said he's notified when a client breaches probation terms, and that he was never alerted to any such violation before Mr. Noviello was arrested by ICE. Mr. Belanger said he's trying to make sense of what happened to his friend. 'I'm trying to figure out why they even picked him up. Like, he's been working. That's all the guy did, was go to work and go home, go to work, go home, go to work, go home.' After his ICE arrest, Mr. Noviello was placed in removal proceedings and issued a Notice to Appear, a document that instructs individuals to appear before an immigration judge. It's unclear when he was due to appear in court, since his family lost most contact with him once he was detained. As a non-U.S. citizen with a conviction for a drug offence, Mr. Noviello had no grounds to challenge his deportation, said Charles Kuck, founding partner at Kuck Baxter in Atlanta and an adjunct professor of law at Georgia's Emory University. Mr. Kuck has represented Canadians facing removal from the U.S., including a man last year who won a waiver to remain in the country after being convicted of an offence that wasn't drug related. He said Canadians who aren't fighting removal have, in the past, typically been expeditiously removed from the U.S. – in a matter of days, not weeks. 'It's a clear sign of the massive dysfunction of our immigration system, and the lack of concern and health treatment given to detainees,' Mr. Kuck said. More and more people will soon come into the crosshairs of the U.S. immigration system. Earlier this month, Congress passed a massive spending bill that allocates nearly US$30-billion to round up and deport immigrants. According to the American Immigration Council, an advocacy organization, the bill represents the single largest increase in funding to immigration enforcement in the history of the United States. As detentions ramp up, the country's immigration courts are struggling to process the 3.5 million pending cases before them. Miami – where Mr. Noviello was incarcerated – has the largest backlog of immigration cases in the country, data from the Transactional Records Access Clearinghouse at Syracuse University shows. Throughout Mr. Noviello's detention, Angelo regularly tried but failed to reach his son. He even wrote him a letter, desperate for news. 'I cannot find out anything [it's] all top secret,' the handwritten letter to Mr. Noviello reads. He said he prayed his son had access to the medications he needed. And then he signed off: 'Love you and hope to see you soon. Dad.' In Miami, the federal detention centre where Mr. Noviello died, with its grey concrete facade and slit windows, is wide and imposing. On a recent day, the prison seemed to blend in with the Miami skyline, yet also stood in contrast to the towering condo buildings around it. The prison is just steps away from a bustling waterfront, but outside its doors, it was quiet, apart from the occasional rooster crowing. Immigrants placed in removal proceedings can be released after their initial arrest. But the Trump administration favours detention, ICE data show. Last October, ICE booked out almost 4,400 people on parole. In June, that figure plummeted to 57 people. With its own facilities under pressure, ICE recently forged an agreement with the federal Bureau of Prisons to house immigration detainees at eight jails across the country – FDC Miami among them. Critics say these partnerships raise serious concerns, in part because the BOP is not equipped to deal with an influx of inmates. The federal prison system has also faced long-standing criticism over medical staff shortages, crumbling infrastructure, and preventable deaths. Some 344 deaths occurred in these facilities between 2014 and 2021, many from suicide, homicide or opioid overdoses, a Senate committee heard last year. BOP staff repeatedly displayed 'significant shortcomings' in responding to medical emergencies, the U.S. Justice Department's Inspector-General testified. Over the past several years, court records indicate that FDC Miami saw at least two suicides, as well as numerous complaints about its handling of the COVID-19 pandemic and treatment of medically vulnerable inmates. Not long before Mr. Noviello's incarceration, another immigration detainee at the facility filed an emergency release petition alleging he'd been unable to access prescribed medication for a serious lung disease, according to court documents obtained by The Globe. The prison said the detainee had been 'clinically stable' for the duration of his detention and received appropriate care. His petition for emergency release was denied. The Noviello family is waiting for news on the official cause of death, but is concerned his underlying condition played a part. Miami-Dade County Medical Examiner's Office told The Globe Mr. Noviello's autopsy report was not yet public and could take up to six weeks to be released. Dr. Elizabeth Donner, an epileptologist and University of Toronto professor in the faculty of medicine, said anti-seizure medications require regular administration: missing even a single dose can be dangerous, she added. In a statement, BOP spokesperson Emery Nelson said the organization could not provide specifics of Mr. Noviello's death for 'privacy, safety, and security reasons.' Mr. Nelson said federal prisons were making strides to address concerns raised by the Justice Department audits and 'mitigate' unexpected deaths. Medical staff at BOP facilities conduct daily rounds, and all inmates have access to regular psychological and medical care, Mr. Nelson added. 'The BOP takes pride in protecting and securing individuals entrusted in our custody, as well as maintaining the safety of correctional staff and the community,' the statement said. FDC Miami, after consultation with ICE, has created procedures to allow immigration detainees to meet with legal support, the statement added. 'All individuals in our custody are continually encouraged to maintain contact with loved ones, friends, and outside resources.' ICE has also previously said that detainees are never denied emergency care. Canada's Foreign Affairs Minister, Anita Anand, said the government is 'urgently seeking more information from U.S. officials' about Mr. Noviello's death. Global Affairs Canada, however, would only say that consular officials remain in contact with U.S. authorities. The department said that due to privacy considerations, they would not disclose further information. Global Affairs Canada also declined to provide information about the approximately 55 Canadians in immigration-related detention in the U.S. In an e-mail, Global Affairs Canada spokesperson Renelle Arsenault said consular officials provide assistance to Canadians detained abroad and can raise concerns about 'justified and serious' complaints of ill-treatment and discrimination with local authorities. Angelo never received a response to the letter he sent to his son inquiring about his medications, he said. He had also put money on an account that he said was meant to allow Mr. Noviello to call him. But Angelo believes his son never gained access to a phone, because the call never came. 'He's been with me all my life,' he said. 'I really miss him.'
Sky News
11-07-2025
- Health
- Sky News
Victims of three medical products that caused 'avoidable harm' still awaiting redress
The dark granite block in a children's cemetery in Bristol tells an incomplete story: "Trelissa Whitbread, born 3rd of Feb 1988. She lived 2 hours." Deborah Mann has not returned to the grave of her firstborn for 30 years but today has come with her daughter, Branwen, to tell her the story. "It shouldn't have happened," she says quietly. Ms Mann had four pregnancies. Her first two children, Trelissa and Kaverne, died shortly after birth. Ms Mann believes their deaths were caused by an epilepsy drug she was taking called sodium valproate, prescribed by her GP. After a long gap she would go on to have two more children, both girls, who were diagnosed with what is now recognised as foetal valproate syndrome, which has left them with life-long physical and neurological problems. Ms Mann tells Sky News: "I asked so many questions and was told 'this is just the way things are.' It can't be the way things are when you lose two babies. How can it be the way things are?" Five years ago, valproate was among three medical products including the pregnancy test drug Primodos and medical device pelvic mesh, that were found to have caused "avoidable harm" to patients. The report was clear that valproate could cause lifelong disabilities to the children of mothers taking the drug when pregnant. The independent review, chaired by Baroness Julia Cumberlege, strongly criticised the industry and regulators and made a series of recommendations, including the creation of a redress scheme for victims in all three groups. On valproate, it stated: "Nothing can undo the harm that has been done to these individuals, but steps can be taken to make their lives easier." 20,000 children exposed to drug while in womb Five years on there is still no such scheme for any of the campaign groups. In the week of developments in the Post Office scandal and infected blood, here is another scandal no less significant. An estimated 20,000 children were exposed to sodium valproate while in the womb. UK regulator the MHRA says an increased risk of neonatal loss is not currently a recognised adverse reaction, but it does warn of a range of congenital problems caused by the drug that are increasingly likely the higher the dose. Sky News has also seen a study from 1972 which shows high doses of sodium valproate could be embryo-lethal in rats. At times Ms Mann was being prescribed 5,000mg, which is double the highest recommended dose. Ms Mann worries about the future of her surviving children. She says of the government: "It's financially better to pretend they don't even exist. So many children are harmed, so many children that will not have their needs addressed as they grow older." At the time of birth her eldest daughter Rhonwen's medical records state "valproate levels caused foetal and patient damage," which included deafness. Daughter worries about being a mother as she can pass condition on Ms Mann wasn't initially told about the cause of her daughter's problems, even when she was pregnant with her next child Branwen. The 29-year-old told Sky News: "I have tight ankles, tight legs, tight hips and I have a weak lower back. I have to wear splints every day to be sure I can keep walking, and I have to do exercises every day. I have autism, Asperger's syndrome." She goes on to list a series of brain problems that must be scanned every two years, "to make sure nothing's grown or moved." She was bullied at school for her appearance, and she worries about being a mother as she can pass the condition on to her children. She said: "I feel very let down by the government. I feel let down by the people who promised they would help us, that they will help ensure that we have a better quality of life." 'Somebody at last had listened' Others the Cumberlege review wanted to get redress for "avoidable harm" were children born with malformations after their mothers used the drug Primodos. These hormone-packed pills were prescribed as a pregnancy test to thousands of women in the 1960s and 70s and are alleged to have caused a range of malformations to babies, from shortened limbs to heart defects, which the manufacturer denies. Lead campaigner for the Association for Children Damaged by Hormone Pregnancy Tests (ACDHPT), Marie Lyon, told Sky News: "Our families were utterly overjoyed that somebody at last had listened, and Julia Cumberlege did a thorough review. Our expectations were wow! This is it now. An apology from the health secretary, all these years and we've finally got there, and then nothing. "Five years and may I say, five years and 31 deaths. That's how many of our members have died since that report was published in 2020 and we've still not received justice. It's a disgrace." Baroness Cumberlege also recommended the government create a redress scheme for women left debilitated by pelvic mesh implants. 'The government are dragging their feet' Kath Sansom, founder of the Sling The Mesh campaign group, told Sky News: "There are women in there who can't walk any more, who need a stick or a mobility scooter - they've lost jobs, marriages, pensions. Some have had to sell their homes, and it feels really unfair that we are still waiting for a reply on redress. "The government are dragging their feet. We keep being told that they are working on it at pace - but the phrase within the group is - a snail's pace." The Department of Health and Social Care said: "The harm caused by pelvic mesh continues to be felt today" and "we are fully focused on how best to support patients and prevent future harm." "Health Minister Baroness Gillian Merron met patients affected and has committed to providing a further update." Government considering recommendations The government says it is considering the recommendations by the patient safety commissioner last year for a redress scheme, but it's notable there is no timescale and no reference to the harm caused by valproate or Primodos in their statement. Dr Alison Cave, chief safety officer at the Medicines and Healthcare products Regulatory Agency (MHRA), said: "Patient safety is our highest priority and no one should stop taking valproate without seeking advice from their healthcare professional. "Valproate is a highly teratogenic medicine and there is evolving evidence for harms in males, which is why the Commission on Human Medicines (CHM) recommended new regulatory measures to reduce the known harms from valproate, including the significant risk of serious harm to the baby if taken during pregnancy and the risk of impaired fertility in male." Sanofi, manufacturers of sodium valproate, told us: "We have always worked closely with the MHRA and fully met all our legal and regulatory obligations in relation to valproate which is an essential medicine used to treat a serious and potentially life-threatening condition. "Sanofi has at all times provided information regarding valproate that reflects current knowledge as approved by MHRA.
