Latest news with #PennyJohnson
ITV News
19-06-2025
- Health
- ITV News
'Why didn't they tell us?' Mothers who took epilepsy drug that led to birth defects feel 'abandoned'
In the first of several reports, ITV Meridian's Social Affairs correspondent Christine Alsford has been speaking to Carole McNeil about her experience. Three women who 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. Carole McNeil, Penny Johnson and Jo Gamblin all had babies with a variety of problems including mobility difficulties, learning disabilities, speech problems and autism. They gave birth to their now grown up children over a sixteen year time span - but they all say they weren't told about the dangers of sodium valproate. They say they weren't given the chance to change their medication and their concerns were dismissed by doctors and other medical experts. None of them have told their stories before - but they say they can now no longer stay silent amid institutional failures and unacceptable delays in their fight for justice. Carole McNeil now lives in Bournemouth. Her daughter Sarah was born in 1989 and is now aged 35. She has mobility problems, speech difficulties and learning difficulties. She also had to have an operation for scoliosis when she was 14. Carole McNeil Carole had been on sodium valproate since the age of two. She was concerned about taking the medication while she was pregnant. "I asked if there was any side effects and was told no, you'll be fine," she said. She says she was initially told by doctors that Sarah was double jointed - but later on a five year battle showed she had sodium valproate syndrome. She's angry that information about the drug wasn't shared with patients earlier. "Why, why didn't they tell us?" "The government that knew in 1973 that there was the problem with this drug and Sarah was born in 1989, 16 years after. "It's not right. It's not right." ITV Meridian's Social Affairs correspondent Christine Alsford has been speaking to Penny Johnson about her experience. An estimated 20,000 children have been affected by sodium valproate damage - which is twice the number in the Thalidomide scandal, a drug that also caused birth defects. Women took the epilepsy medication to control their seizures but say they weren't given the opportunity to switch to alternatives and had no idea the drug increased the risk of birth defects and developmental delays. 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 She says the government needs to take urgent action to help families. "I feel very alone and abandoned," she said. "I feel forgotten. I need things put in place for my son. I'm 56 years old." Penny from Aylesbury in Buckinghamshire, believes that three miscarriages that she suffered, are also a result of the medication. One happened at 16 weeks. She added she was denied the chance to make choices. "I feel that I could have had the medication changed so easily because my epilepsy was not severe. In fact, I don't know medication now. I haven't been on medication since 2002." ITV Meridian's Social Affairs correspondent Christine Alsford has been speaking to Jo Gamblin about her experience. Parents including Jo Gamblin from Fareham in Hampshire say they've been let down by the system. "They've known for years the dangers of it," said Jo. " And to just leave women to carry on having children. I just don't understand how they can even sleep at night." Jo's son Lewis is aged 19 and was born with signs of sodium valproate syndrome and has now been diagnosed with ADHD and autism and registered as disabled. "What I really want to get across is what has happened to our children," said Jo. "They need help. "This wasn't his fault. It's not my fault. And what they seem to be forgetting is that we were given the medication to help us in the first place because we've got an illness that is life threatening and now we've got more stress. And stress is one of the biggest triggers for epilepsy." Jo Gamblin Well over a year ago a major report that set out how a redress scheme for sodium valproate should work was published. Written by the Patient Safety Commissioner, Professor Henrietta Hughes, it said there was a "clear case for redress based on the systematic healthcare and regulatory failures". Sixteen months on, there has been no response from the government, which she describes as "disappointing". "The responsibility of all government should be to keep their citizens safe and in this situation I believe patients and families have been let down by a system that hasn't focused on safety," she said. "The disjointed and dismissive nature of the health system is what led to those patients being harmed." The Department for Health and Social Care said they would provide an update "at the earliest opportunity". A spokesperson said: "We are fully focused on how best to support patients and prevent future harm. "This is a complex area of work and 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." Watch an ITV Meridian vodcast where Social Affairs Correspondent Christine Alsford speaks at length to Carole McNeil and Jo Gamblin. In 2018 new warnings were added to boxes of sodium valproate warning that the drug shouldn't be taken by pregnant women. There is also now a Pregnancy Prevention Programme in place for women under the age of 55. Sanofi, manufacturers of one of the main brands of sodium valproate called Epilim, 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. "The use of valproate in pregnancy is an incredibly complex issue that involves many different parties including government, regulators, doctors and other prescribers, pharmacists, manufacturers, patients and other people affected. "All partners in the healthcare system, including health authorities, healthcare professionals and pharmaceutical companies, have a role to play in providing information on risks and benefits of medicine to all patients who take them, consistent with scientific and medical knowledge."
ITV News
19-06-2025
- 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."
Middle East Eye
13-05-2025
- Middle East Eye
Forgotten: Searching for Palestine's Hidden Places and Lost Memorials
Ancient buildings are the keepers of secrets: the ghosts and stories of the people who have gone before rest within their walls. Despite attempts to conceal the past, remnants stubbornly remain, as anyone who has renovated can attest - faded posters, peeling wallpaper, chipped paint - such immutable objects can bear witness to a forgotten time. In this meditative travelogue, Raja Shehadeh and his wife Penny Johnson, both in their eighth decade, contemplate the hidden history and geography of historic Palestine, now Israel and the Occupied Palestinian Territories of the West Bank, East Jerusalem and Gaza. This is a place where even 'archaeology is politicised'. The couple's quest is to reveal the lost, neglected and intentionally erased stories that criss-cross and sustain the land. New MEE newsletter: Jerusalem Dispatch Sign up to get the latest insights and analysis on Israel-Palestine, alongside Turkey Unpacked and other MEE newsletters In languid prose their journey illustrates how a rich, cultural heritage has been lost, and how these forgotten monuments and memorials reveal much about a common past and a possible future. The book, the seed of which germinated from a lockdown walk on a deserted road near the wall separating the occupied West Bank from Israel, and a chance discovery of a forgotten memorial stone for three Egyptian soldiers who perished in the 1967 war, is divided into five distinct sections that illustrate its historical breadth. The authors cover Palestine's past and its troubled present; Ottoman times; traces of the Nakba; intimations of mortality (where they visit the graves of friends, including the poet Mahmoud Darwish); and Ramallah ruins and the future of our pasts. Under our anointed tour guides, time slows and information is imbibed. Mindful to the burden of detail, the couple gently unpeel layers to reveal the fascinating narratives that underpin the places they visit. 'Bearing the weight of many pasts' This is not without hindrance; the authors are forced to negotiate checkpoints, road barriers and detours to reach these destinations, whose very geography has been splintered on purpose. They travel to Nablus, a city that 'bears the weight of many pasts', from Ramallah along the congested Highway 60. Their memories of the old road with its 'near pristine hills and agricultural landscapes' become an ever distant echo, as Israeli bulldozers gouge into the hills near the town of Hawara on the approach to Nablus, as they construct a four-lane bypass connecting Israeli settlements in the west to those of the east. In Nablus, they come across a triptych, strangely evocative of the lustrous 'religious three-panelled paintings that graced altars in Byzantine or Renaissance churches', except this memorial is rendered on stark white stone brick with a black fence protecting it. Namesake: Reflections on Nusaiba, a warrior woman of early Islam Read More » On the wall are the faded posters of young men organised as a trinity, martyrs who perished during the first and second Palestinian intifadas, condemned to be young forever. The couple relate the history of the Old City, how it was the eye of the storm during the Second Intifada in April 2002, and how both Palestinian civilians and fighters perished during a 10-day curfew, with homes and historic buildings, including an Ottoman era palace, sustaining collateral damage. Sometimes there are no signs of what has gone before. Shehadeh and Johnson travel to Kfar Kanna, a town near Nazareth, which according to Christians is famed as the place where Jesus turned water into wine, in search of a memorial to the Nakba. In an unremarkable circular plaza stocked with plastic chairs, they find a sole monument - a rectangular pillar topped with an urn filled with drooping plants. Squint at the wall behind it and the dead are listed through the decades, from the 1930s to the 2000s. The monument was unveiled in September 2000, a few days before the Second Intifada. As the traffic roars around them, the couple feel the weight of silence. Reclaiming narratives Voids in memory are often filled by art. In the museum of Ein Harod, an Israeli kibbutz, a major retrospective profiles Palestinian artist Asim Abu Shakra's vivid paintings of potted cacti. The artist, who tragically died of cancer in 1990 at the age of 28, repeatedly painted these hardy plants in bright colours in order to reclaim the narrative surrounding them. For Israelis, the cactus has been adopted as a national symbol, but the plant is also replete with meaning for Palestinians - its thorns offering protection; its fruit sustenance. (Profile Books) The artist was drawn to it because of its 'amazing ability to flower out of death'. As our authors note, his work offered 'beauty in response to the Nakba and its consequences'. Erasure is a constant theme. The couple visit Charles Clore Park, a seaside resort built on the ruins of Manshiya, a coastal city that Palestinians once named 'the bride of the sea'. The story behind the park's creation - it was named after the UK billionaire that funded its construction - and the obliteration of a city with 12,000 inhabitants, has sobering parallels with Trump's ideas of turning Gaza into the 'Riviera of the Middle East'. The authors observe that this is an ongoing historical tragedy; they are unable to access the Gaza Strip and note that the eradication and erasure of its cultural heritage will ultimately lead to the dispossession and displacement of its people, who will no longer be able to prove their connection to the land. Towards the end of the book, Johnson sees a ruby red anemone blossoming amongst the rubble and ruins that dot the Ramallah hills. There is always hope. The past can never be completely erased, clues remain for those willing to look closely. This precious jewel of a book is a call to preserve the past in order to secure the future. Its hauntingly evocative prose stays with you long after its final pages have been turned. Forgotten: Searching for Palestine's Hidden Places and Lost Memorials (2025) by Raja Shehadeh and Penny Johnson in published by Profile Books
