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Found 16 results
  1. News Article
    Despite being one of the world's oldest known medical conditions, public fear and misunderstanding about epilepsy persists, making many people reluctant to talk about it. That reluctance leads to lives lived in the shadows, lack of understanding about individual risk, discrimination in workplaces and communities, and a lack of funding for new therapies research. People with epilepsy die prematurely at a higher rate compared to the general population. The most common cause of death from epilepsy is sudden unexpected death in epilepsy, known as SUDEP. For many people living with epilepsy, the mi
  2. Content Article
    The MHRA safety review examined safety data for risks of major birth defects or abnormalities and concerns with the child’s development including learning and thinking abilities for other key antiepileptic drugs. It found that a number of these epilepsy medicines may be associated with some increased risks in pregnancy. Valproate (Epilim) is already known to be seriously harmful if taken in pregnancy and should only be prescribed to a woman if a pregnancy prevention plan is in place. Importantly, two antiepileptic medicines in particular, lamotrigine (Lamictal) and levetiracetam (Keppra),
  3. News Article
    In a Letter to the Editor published in The Times yesterday, the All Party Parliamentary Group on First Do No Harm Co-Chair Baroness Julia Cumberlege argues in favour of the work of the Independent Medicines and Medical Devices Safety (IMMDS) Review and its report 'First Do No Harm'. "Inquiries are only as good as the change for the better that results from their work." Read full letter (paywalled) Source: The Times, 5 January 2021
  4. News Article
    Staff at a specialist care unit did not attempt to resuscitate a woman with epilepsy, learning difficulties and sleep apnoea when she was found unconscious, an inquest heard. Joanna Bailey, 36, died at Cawston Park in Norfolk on 28 April 2018. Jurors heard she was found by a worker whose CPR training had expired, and the private hospital near Aylsham - which care for adults with complex needs - had been short-staffed that night. Support worker Dan Turco told the coroner's court he went to check on Ms Bailey just after 03:00 BST and found she was not breathing and had blood around her
  5. Content Article
    In our recent blog Analysing the Cumberlege Review; Who should join the dots for patient safety? we identified a number of key patient safety issues which were reflected in the Review’s findings. One theme running throughout the Review was a failure to engage patients in their care, most noticeably around the issue of informed consent. What is informed consent? The NHS definition of informed consent is that “the person must be given all of the information about what the treatment involves, including the benefits and risks, whether there are reasonable alternative treatments, and what
  6. Content Article
    Key learning points: There are at least three epilepsy-related deaths a day in the UK. Sudden unexpected death in epilepsy (SUDEP) is less common in young children than in adults, but can still happen. All children suffering a first convulsion, whatever the suspected trigger, must be conveyed to A&E; even if the convulsions have stopped by the time the ambulance crew arrive. This is in case the convulsions signify a serious underlying condition requiring treatment.
  7. Content Article
    Key themes to guide future quality measurement work for Children and young People (CYP) services: increase awareness of, and engagement with, quality measurement for CYP improve collaboration and partnership working focus on what matters most to children, young people and families simplify where possible combine existing and new data sources link measurement to action.
  8. Content Article
    This page includes: aims and objectives of the passport a link to the tool/template guidance for professionals guidance for parents and carers guidance for children and young people.
  9. Content Article
    This has not been implemented in a clinical setting. However, parents/ carers have been involved in the initial testing and ongoing development. Feedback is provided either via the helpline, an online survey signposted within the app or the email address webquery@youngepilepsy.org.uk.
  10. Content Article
    Recommendations The Government should immediately issue a fulsome apology on behalf of the healthcare system to the families affected by Primodos, sodium valproate and pelvic mesh. The appointment of a Patient Safety Commissioner who would be an independent public leader with a statutory responsibility. The Commissioner would champion the value of listening to patients and promoting users’ perspectives in seeking improvements to patient safety around the use of medicines and medical devices. A new independent Redress Agency for those harmed by medicines and medical devices sho
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