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Found 58 results
  1. News Article
    In 2009, Emma Murphy took a phone call from her sister that changed her life. “At first, I couldn’t make out what she was saying; she was crying so much,” Murphy says. “All I could hear was ‘Epilim’.” This was a brand name for sodium valproate, the medication Murphy had been taking since she was 12 to manage her epilepsy. Her sister explained that a woman, Janet Williams, on the local news had claimed that taking the drug during her pregnancies had harmed her children. She was appealing for other women who might have experienced this to come forward. Murphy found the news segment that evening and watched it. “I was just stunned,” she says. “Watching that, I knew. I knew there and then that my children had been affected.” At that point, Murphy was a mother to five children, all under six, and married to Joe, a taxi driver in Manchester. “My kids are fabulous, all of them, but I’d known for years that something was wrong,” she says. “They weren’t meeting milestones. There was delayed speech, slowness to crawl, not walking. There was a lot of drooling – that was really apparent. They were poorly, with constant infections. I was always at the doctors with one of them." A call between Murphy and Janet Williams was the start of an incredible partnership. It led to the report published this month by England’s patient safety commissioner, Dr Henrietta Hughes, which recommended a compensation scheme for families of children harmed by valproate taken in pregnancy. Hughes has suggested initial payments of £100,000 and described the damage caused by the drug as “a bigger scandal than thalidomide”. It is estimated that 20,000 British children have been exposed to the drug while in the womb. Williams and Murphy have campaigned relentlessly to reach this point. It is by no means the endpoint – even now, an estimated three babies are born each month having been exposed to the drug. Together, the women formed In-Fact (the Independent Fetal Anti Convulsant Trust) to find and support families like theirs. They were instrumental in the creation of an all-party parliamentary group to raise awareness in government. Read full story Source: The Guardian, 22 February 2024
  2. News Article
    Ministers must begin paying compensation to the families of children disabled by the epilepsy drug sodium valproate by next year, a report will say this week. The report’s author, Dr Henrietta Hughes, England’s patient safety commissioner, says valproate is “a bigger scandal than thalidomide, in terms of the numbers of people affected”. She will back calls for financial redress for the thousands of children left physically and mentally disabled. Every month, three babies are still being born who have been exposed to the drug. Speaking before the report’s launch, Hughes, 54, a GP, said the state had failed pregnant women by not telling them about key information regarding the drug’s risks. “These families have already been betrayed, because they weren’t given the right information to be able to make decisions to keep themselves and their family safe,” she said. “There are senior politicians of every stripe who have expressed their sincere sympathy and support for patients who have been harmed. I take the view that people who seek high office need to also accept the responsibility that comes with that high office. “The time for redress is now. The government is responsible. I’ve been asked to give them options for redress and I’ve done that. They have the recommendations, they have the advice, they have everything they need. Get on with it.” Read full story (paywalled) Source: The Times, February 2024
  3. News Article
    Concerns have been raised that patients may not be receiving “vital” safety information after HSJ discovered a high-risk medication was frequently not being dispensed as originally packaged. In 2018, the Medicines and Healthcare Products Regulatory Agency asked pharmacies to dispense valproate-containing medications in their original pack where possible, to ensure packages include safety warnings. It also asked manufacturers to produce smaller pack sizes and add pictorial warnings, while pharmacists were additionally asked to add stickered warnings to the outer box of any valproate-containing medication not dispensed in its original packaging. Yet, data obtained via freedom of information requests to the NHS Business Services Authority revealed that while the proportion and number of valproate-containing items dispensed as split packs – as opposed to whole packs – had decreased over the last five years, split packs still accounted for more than half of items dispensed in 2022-23. Emma Murphy, of campaign group In-Fact, said the figures on split pack dispensing were “quite horrifying” and showed “the system is not working”. She added: “Attitudes have got to change – prescribers, GPs etc need to be proactive and warn women of the risks because this isn’t just a side effect, this is harming real babies. As a mum of five affected children, the consequences of valproate in pregnancy on that baby is devastating.” Alison Fuller, of Epilepsy Action, said the high proportion of split packs being dispensed made it “clear why the change in guidance introduced in October 2023 was necessary”, adding: “The manufacturer’s original full pack always contains all the relevant information, which is why it’s the best option for patient awareness.” Read full story (paywalled) Source: HSJ,
  4. Content Article
    New safety and educational materials have been introduced for men and women and healthcare professionals to reduce the harms from valproate, including the significant risk of serious harm to the baby if taken during pregnancy and the risk of impaired fertility in males. These safety and educational materials support the new regulatory measures announced in the National Patient Safety Alert. Healthcare professionals should review the new measures and materials and integrate them into their clinical practice when referring patients and when prescribing or dispensing valproate.
  5. News Article
    A national shortage of epilepsy medication is putting patients' safety at risk, consultants have said. Medical professionals are becoming genuinely concerned as ever more frequent supply issues continue to bite tens of thousands of sufferers. According to the Epilepsy Society charity, over 600,000 people in the UK have the condition, or about one in every 100 people. Among them is Charlotte Kelly, a mother of two living in London who has had epilepsy for over 20 years. She must take two tablets a day to manage her condition but issues with supply have forced her to start rationing her medication. Speaking to Sky News, Ms Kelly told us of the fear surrounding the restricted access to the medicate she needs to survive. "I'm scared. If I'm truly honest, I'm scared knowing that I might not get any medication for a few weeks, or a couple of months, I just don't know when. "It's scary to know that I have to worry about getting hold of medication. I do believe that something needs to happen very quickly because even if it's pre-ordered there's no guarantee you're going to get it. Speaking to Sky News, Professor Ley Sander, director of medical services at the Epilepsy Society, says the supply concern is not just on the minds of patients but those in the industry too. "It might be that we need a strategic reserve for storage of drugs, we might have to bring drugs over from other parts of the world to avoid this from recurring. "We're not at that point yet, but this is an urgent issue." Read full story Source: Sky News, 21 January 2024
  6. Content Article
    The World Health Organization (WHO) has published the third edition of the Mental Health Gap Action Programme (mhGAP) guideline which includes important new, and updated, recommendations for the treatment and care of mental, neurological and substance use (MNS) disorders. MNS disorders are major contributors to morbidity and premature mortality in all regions of the world. Yet it is estimated that over 75% of people with MNS disorders are unable to access the treatment or care they need. The mhGAP guideline supports countries to strengthen capacity to deal with the growing burden of these conditions. It is intended for use by doctors, nurses, other health workers working in non-specialist settings at primary health care level, as well as health planners and managers.
  7. News Article
    Valproate-containing medicines will be dispensed in the manufacturer’s original full pack, following changes in regulations coming into effect on Wednesday 11 October 2023. The Medicines and Healthcare products Regulatory Agency (MHRA) has published new guidance for dispensers to support this change. Following a government consultation, this change to legislation has been made to ensure that patients always receive specific safety warnings and pictograms, including a patient card and the Patient Information Leaflet, which are contained in the manufacturer’s original full pack. These materials form a key part of the safety messaging and alert patients to the risks to the unborn baby if valproate-containing medicines are used in pregnancy. The changes follow a consultation on original pack dispensing and supply of medicines containing sodium valproate led by the Department of Health and Social Care (DHSC), in which there was overwhelming support for the introduction of the new measures, to further support safety of valproate-containing medicines. Minister for Public Health, Maria Caulfield, said: “This safety information will help patients stay informed about risks of valproate, and I encourage all dispensers of valproate to consult the new guidance carefully. “This continues our commitment to listening and learning from the experiences of people impacted by valproate and their families and using what we hear to improve patient safety.” Read full story Source: MHRA, 11 October 2023
  8. Content Article
    This is guidance for dispensing of valproate-containing medicines in the manufacturer’s original full pack, following amendments to the Human Medicines Regulations (HMRs). These amendments currently apply in England, Scotland and Wales. This guidance should be regarded as good practice by pharmacists in Northern Ireland. The change comes into force in England, Scotland and Wales from 11 October 2023. 
  9. News Article
    The moment her newborn son Sebastian was handed to her, Catherine McNamara knew something was terribly wrong. His tiny hands were deformed, unnaturally twisted and facing in the wrong direction. One was missing a thumb. A few days later, the couple were devastated as doctors told them Sebastian’s deformities were permanent — and had been caused by the drug McNamara had been taking to control her epilepsy. Like thousands of women, McNamara had been told her epilepsy medicine, sodium valproate, was safe to take during pregnancy. “They told me everything would be fine,” she said. Sodium valproate, which was given to women with epilepsy for decades without proper warnings, has caused autism, learning difficulties and physical deformities in up to 20,000 babies in Britain. Yet despite a 2020 report that criticised the failure over four decades to inform women about the dangers, doctors are still not properly warning women of the risks. According to the latest data, published in March, sodium valproate was prescribed to 247 pregnant women between April 2018 and September 2021. An investigation by The Sunday Times has found that the drug is still being handed out to women in plain packets with the information leaflets missing, or with stickers over the warnings. The government is refusing to offer any compensation to those affected by sodium valproate, despite an independent review by Baroness Cumberlege concluding in 2020 that families should be given financial redress. The former health secretary Jeremy Hunt says doctors should now be banned from prescribing the drug to pregnant women — and that the families affected by it must be properly compensated. He has compared the case to the scandal of the anti-morning-sickness drug thalidomide, which caused deformities in thousands of babies after it was licensed in the UK in the 1950s. Read full story (paywalled) Source: The Sunday Times, 16 April 2022
  10. News Article
    Men who take the epilepsy drug sodium valproate could beat increased risk of having children with disabilities, research has found. A study ordered by the European Medicines Agency (EMA) has suggested a link between fathers taking the drug three months before babies are conceived and a small increased likelihood that the children will have neurodevelopmental disorders. The drug manufacturer Sanofi has not published the full results, leading to confusion among patients and doctors. Sodium valproate, sold in the UK as Epilim, is prescribed to treat epilepsy, bipolar disorder and migraines. It is known to cause deformities in one in ten babies exposed to it in the womb because their mothers are taking the drug. Four in ten babies suffer developmental delays. Read full story (paywalled) Source: The Times, 2 July 2023
  11. News Article
    Senior health officials are to face questioning over why pregnant women are still being prescribed sodium valproate despite its known risks as a cause of birth defects or developmental delays. Campaigners for families affected by the drug will also give evidence to the Health and Social Care Committee in a one-off session later this month. Alongside campaigners on sodium valproate, the Committee will also hear from campaigners from Association for Children Damaged by Hormone Pregnancy Tests and on behalf of “Sling the Mesh” campaign. MPs will examine government progress on recommendations made in the Independent Medicines and Medical Devices Safety (IMMDS) Review, which specifically looked into sodium valproate, hormone pregnancy tests and vaginal mesh. An update by Ministers on progress to implement the government’s response was due this summer. A Minister from the Department of Health and Social Care has been invited to appear before the Committee. The IMMDS Review’s report called for better communication to inform women of the risks of sodium valproate in pregnancy. Despite an NHS ‘valproate pregnancy prevention programme’, 247 women since April 2018 were found to have been prescribed the drug in a month in which they were pregnant, 25 as recently as April to September last year. Health and Social Care Committee Chair Jeremy Hunt MP said: “It is incredibly concerning to know that women of child-bearing age can still be prescribed the epilepsy drug sodium valproate despite its known risks as a cause of birth defects or developmental delays. It has been two years since Baroness Cumberlege called for urgent action to prevent this happening. However, dozens of pregnant women were prescribed the drug last year while data published last month has shown that safety requirements were not being fully met. We’re calling in a Minister and senior health officials as well as campaigners to address our concerns.” Read full story Source: UK Parliament, 2 September 2022
  12. News Article
    Two years after having Covid-19, diagnoses of brain fog, dementia and epilepsy are more common than after other respiratory infections, a study by the University of Oxford suggests. But anxiety and depression are no more likely in adults or children two years on, the research found. More research is needed to understand how and why Covid could lead to other conditions. This study looked at the risks of 14 different disorders in 1.25 million patients two years on from Covid, mostly in the US. It then compared them with a closely-matched group of 1.25 million people who had a different respiratory infection. In the group who had Covid, after two years, there were more new cases of: dementia, stroke and brain fog in adults aged over 65 brain fog in adults aged 18-64 epilepsy and psychotic disorders in children, although the overall risks were small. Some disorders became less common two years after Covid, including: anxiety and depression in children and adults psychotic disorders in adults. The increased risk of depression and anxiety in adults lasts less than two months before returning to normal levels, the research found. Read full story Source BBC News, 18 August 2022
  13. News Article
    An epilepsy drug that caused disabilities in thousands of babies after being prescribed to pregnant women could be more dangerous than previously thought. Sodium valproate could be triggering genetic changes that mean disabilities are being passed on to second and even third generations, according to the UK’s medicines regulator. The Medicines and Healthcare Products Regulatory Agency (MHRA) has also raised concerns that the drug can affect male sperm and fertility, and may be linked to miscarriages and stillbirths. Ministers are already under pressure after it emerged in April that valproate was still being prescribed to women without the legally required warnings. Six babies a month are being born after having been exposed to the drug, the MHRA has said. It can cause deformities, autism and learning disabilities. Cat Smith, the Labour chairwoman of the all-party parliamentary group on sodium valproate, said: “This transgenerational risk is very concerning. There have been rumours that this was a possibility, but I had never heard it was accepted until last week by the MHRA." “The harm from sodium valproate was caused by successive failures of regulators and governments, and this news means it could be an order of magnitude worse than we first thought. It underlines the need for the Treasury to step up to their responsibilities around financial redress to those families.” Read full story (paywalled) Source: Sunday Times, 19 June 2022
  14. Content Article
    In this article, published by the Pharmaceutical Journal, Julia Robinson reviews the data and action taken so far to reduce avoidable harm caused by sodium valproate. Julia says that while there has been some progress in managing the risks of sodium valproate, babies are still being born after exposure to the drug, and safety concerns over antiepileptic use in men and women are multiplying.
  15. Content Article
    The Health and Social Care Select Committee have published a new report reviewing the progress that the UK Government has made in implementing the recommendations of the Independent Medicines and Medical Devices Safety Review, sometimes referred to as the Cumberlege Review. This blog sets out Patient Safety Learning’s reflections on this report.
  16. Content Article
    This Health and Social Care Select Committee report reviews the progress that the UK Government has made in implementing the recommendations of the Independent Medicines and Medical Devices Safety Review, sometimes referred to as the Cumberlege Review. You can read Patient Safety Learning’s reflections on this report here.
  17. Content Article
    This case study published by the Healthcare Quality Improvement Partnership (HQIP) highlights the Epilepsy12 Audit’s approach to working with children and young people to improve paediatric epilepsy care. Epilepsy12 Youth Advocates are epilepsy experienced or interested children, young people, families and an epilepsy specialist nurse. They volunteer together to shape Epilepsy12 and to lead improvement activities with families and epilepsy services. The audit won the Richard Driscoll Memorial Award (RDMA) 2022. The RDMA asks HQIP commissioned programmes to describe how patients and carers influence the production of the patient-focused outputs of the programme.
  18. Content Article
    This report published by the National Confidential Enquiry into Patient Outcome and Death (NCEPOD) assesses the quality of care provided to adult patients with a pre-existing epilepsy disorder, or who were subsequently diagnosed with epilepsy and presented to hospital following a seizure, between 1 January and 31 December 2020.
  19. Content Article
    This is an Adjournment Debate from the House of Commons on Wednesday 7 December 2022 on fatalities relating to foetal valproate spectrum disorder.
  20. Content Article
    Core20PLUS5 is NHS England's approach to reducing health inequalities at both national and system level. The approach defines a target population cohort and identifies five focus clinical areas that require accelerated improvement. This infographic outlines the specific Core20PLUS5 approach to reducing health inequalities for children and young people.
  21. News Article
    Between April 2021 and March 2022, more than 400 pregnant women were prescribed the anti-epileptic medicine topiramate, which has been found to cause congenital malformations, figures published by NHS Digital have revealed. The data, published on 29 September 2022, covers prescribing of anti-epileptic drugs in females aged 0–54 years in England from 1 April 2018 through to 31 March 2022. Overall, it shows a reduction in the number of females prescribed sodium valproate; from 27,441 in April 2018 to 19,766 in March 2022. However, the numbers also show that sodium valproate, which can cause birth defects, is still being prescribed during pregnancy, with 42 women being prescribed the drug at some point during their pregnancy between April 2021 and March 2022, compared with 43 in the previous year. In addition, the data show that, during that same time period, 430 females were prescribed topiramate, which is used for treatment of migraines as well as epilepsy, during their pregnancy. In 2021, a safety review, carried out by the Medicines and Healthcare products Regulatory Agency (MHRA) found that carbamazepine, phenobarbital, phenytoin and topiramate were associated with an increased risk of major congenital malformations. In July 2022, the MHRA launched a further review looking specifically at the safety of topiramate, after study results showed an increased risk of autism, developmental disorders and learning difficulties among babies exposed to the medicine during their mother’s pregnancy. Daniel Jennings, senior policy and campaigns officer at Epilepsy Action, said it was “concerning” to see that prescribing figures for valproate had not decreased, compared with the previous year, and that despite the MHRA identifying other epilepsy medicines that could pose a risk if taken in pregnancy, there had been “little or no communication” about these risks. “There is also still a large group of epilepsy medicines where we don’t have an adequate bank of evidence about their safe use during pregnancy,” he added. “The MHRA and NHS England need to work together to communicate the risks and carry out research to protect women with epilepsy.” Read full story Source: The Pharmaceutical Journal. 7 October 2022
  22. Content Article
    On the 20 January 2023 the Health and Social Care Select Committee published a reported with reviewed the progress that the UK Government has made in implementing the recommendations of the Independent Medicines and Medical Devices Safety Review, sometimes referred to as the Cumberlege Review. This paper sets out the UK Government’s response to the recommendations set out in this report. Related reading: Health and Social Care Select Committee: Follow-up on the IMMDS report and the Government’s response (20 January 2023) Patient Safety Learning: Response to the Select Committee report on the Independent Medicines and Medical Devices Safety Review (20 January 2023)
  23. Content Article
    In this episode of the Institute of Economic Affairs (IEA) Podcast, IEA Head of Political Economy Dr Kristian Niemietz discusses the findings of the Independent Medicines and Medical Devices Safety Review, and how the healthcare system in England responds to reports about harmful side effects from medicines and medical devices. Kristian speaks with Simon Whale, panel member and communications lead for the Independent Medicines and Medical Devices Safety Review and Dr Sonia Macleod, lead researcher, Independent Medicines and Medical Devices Safety Review. They discuss how the NHS, and other health bodies, could improve their services to address poor care and prevent harm.
  24. Content Article
    This is an Early Day Motion tabled in the House of Commons on 28 February 2022, which calls on the Government to implement the recommendations of the Independent Medicines and Medical Devices Safety Review in full, including paying compensation to people disabled by Sodium Valproate.
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