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  1. Today
  2. Community Post
    Supporting Loss: developing an online Toolkit to help those bereaved by substance use when the death is referred to the coroner in England and Wales A new project, Supporting Loss (Centre for Death & Society, University of Bath; Turning Point; Birkbeck University of London), is developing an online Toolkit to help professionals support bereaved people when an alcohol or other drug-related death is subject to a coroner’s investigation and inquest. The Toolkit will also be directly accessible to bereaved people. Supporting Loss builds on two previously completed projects - understanding bereavement by substance use, and the Voicing Loss project about people’s experiences of the coroner service in England and Wales. To help inform Toolkit development, we are holding online Knowledge Exchange events on 16th July and 8th September 2025. We want to hear bereaved people's ideas for the content and design of the Toolkit. To find out more contact LornaTempleton: [email protected]
  3. Last week
  4. Community Post
    This study is now closed to new participants. Thank you to everyone who contacted me.
  5. Community Post
    This study is now closed to new participants. Thank you to everyone who contacted me.
  6. Earlier
  7. Community Post
    New video from Dr Gail Busby:
  8. Community Post
    Post your comments here
  9. Community Post
    @SpecialRed You can email [email protected] if you are interested in joining UKCVFamily's support forum for people who have experienced vaccine injury. They may be able to offer some signposting to research regarding your symptoms and services that can offer further support.
  10. Community Post
    I was diagnosed with fibromyalgia 20 years ago and although it’s been difficult, I kept working and pushed through. I received a Covid vaccine in 2023, after which I had a migraine that lasted for 4 weeks. There were blood tests, ct scans and so many different migraine meds that I lost count. When the migraine finally left me, I realised how sore my body was. Especially my feet. I’ve spent my life power walking everywhere, now I need a walking stick to move around my home and it all happened in the space of a month. When I started doing research on this issue, I noticed that as far back as 2021, other countries like Italy, Spain and America were talking about the link between the vaccine and fibromyalgia. I don’t believe for a second that the British government didn’t know anything about this! Now I’m having to fight tooth and nail to get motobility! I’ve told everyone that I’ve spoken to in the NHS about the link and no one cares! I’ve been waiting for 2 months to get Occupational Therapy, my psychiatrist was supposed to refer me to a CPN last October, but he left in December. I found this out in February when I called to find out why my psychiatrist hadn’t phoned me for my 3 month check. Then 2 months after that I get a call from another psychiatrist and find out that there had been no referral to CPN. I’m now back on antidepressants and at my wits end.
  11. Community Post
    feedback from the surgical team here: We were asked to include ERCP as a high bleeding risk in the very beginning and it was always listed on back of the paper VTE form However, that would mean omitting on the day and not the night before. Enoxaparin is prescribed at 18:00 so that it is safe to perform high risk surgery the next day Best wishes
  12. Community Post
    We have seen some of this practice here - omitting the night before ERCP or biopsies and sometimes the evening after. I can't think of a good reason for omitting any prophylactic doses around the time of ERCP and the practice has been challenged.
  13. Community Post
    I shall ask the team
  14. Community Post
    Hi Alex I haven't heard of that, as far as I know, it can go ahead 12 hrs after thromboprophylaxis.
  15. Community Post
    Just a random question - do any of your Trust Gastroenterology omit thromboprophylaxis the night before an ERCP We have had several VTE events recently involving these patients and the Gastro team are saying that it is omitted due it being a high bleeding risk - all of the previous Trusts that I have worked in have not done this as far as I can recall as thromboprophylaxis is a low enough level for a spinal the morning after a dose, so it should be acceptable for an ERCP Or am I having a senior moment?
  16. Community Post
    And in terms of covid guideline, ours still says what the NICE guideline says, in practice I think the majority get standard prophylaxis, not extended past hospitalisation.
  17. Community Post
    I know how it feels
  18. Community Post
    I am still looking for participants. The inclusion criteria has been extended to Patient Safety Specialists/Leads/Managers or Governance Leads working in secondary healthcare in England. Please get in touch if you are interested in taking part.
  19. Community Post
    I am still looking for participants. The inclusion criteria has been extended to Patient Safety Specialists/Leads/Managers or Governance Leads working in secondary healthcare in England. Please get in touch if you are interested in taking part.
  20. Community Post
    @JULES STORR We've added the event to attend on the hub. Look forward to hearing more about it in the blog.
  21. Community Post
    I have MANY negative experiences at the hands of the NHS and the medical system as a whole, including where I went from mild to moderate-severe following a shambles of an 18-month period attempting to seek treatment for what was originally dismissed as 'probably just M.E.' (that old chestnut) to actually being a gallbladder that was so inflamed, and 100s of gallstones stuck in various places in my digestive system, that the surgeon said I had been a "walking time bomb". Perhaps a moot point in comparison to the above, but also I have to continually ask the admin teams to please, pretty please, put a note on my records the fact that I can't make morning appointments at all due to the severity of my symptoms. But guess what? Each and every time, I am booked in for 9am appointments, which I then have to re-schedule, and as that can take many months for a new appointment, yup, you've guessed it... my symptoms and energy-levels have deteriorated.
  22. Community Post
    Video shared on Facebook by Campaign Against Painful Hysteroscopy: 'Pain doesn't discriminate...neither should healthcare '
  23. Community Post
    In a new blog on the hub, Laura Evans discusses the lack of protection against Covid-19 for vulnerable patients when going for a GP appointment or into hospital and shares her personal experience of being dismissed when asking for basic patient safety measures to be put in place. We'd like to hear your experiences. Are you a vulnerable patient? What is your Trust or GP practice doing to make you feel safe? Please comment below (sign up first for free) or you can email us at [email protected].
  24. Community Post
    In a new series of blogs on the hub, patients and their relatives describe the challenges and barriers they have faced when trying to navigate the healthcare system. What has been your experience of navigating the healthcare system? What is and isn’t working? How does it feel as a patient or carer when you hit barriers? Has your health been affected? Or perhaps you're a healthcare professional who has insights to share? Is your work affected by disjointed systems? Have you been involved in implementing systems to help care coordination? Please comment below (sign up first for free) or you can email us at [email protected].
  25. Community Post
    I’ve had very severe paroxysmal coughing for a couple of years. Asthma meds & bog standard cough linctus have been useless. I’m now coughing up blood clots. Told I need endoscopies. The nearest hospital is 20 miles. My ME is Very Severe. Vibrations from the vehicle and flashing scenery would likely cause my death. I’ve been having home visits for two years. There’s no alternative to a hospital visit. So I won’t go.
  26. Community Post
    I hope you are okay with me posting this here, but I am a doctoral researcher within UWE for Counselling Psychology. I can see from this post back in 2011 there is still such little research available, though I know Sarbina (within the comments) has recently completed her research in people’s experiences of IUD fittings. When I experienced this last year, I found the lack of understanding and mental health support quite shocking. As a counselling psychologist in training with a background in sexual violence support, I wanted to explore the impacts of these potentially traumatic experiences and how both understanding of the trauma, and better mental health support could be vital. Vital in not only improving the experiences of people in the future but real support on the impacts of this trauma for those who have already been through it. I have also widened my scope to IUD fittings and smears, due to the lack of research in the latter. Do get in touch with me via email if you feel you may be interested. (Presently I have restrictions on the research for the experience to have happened in the last 2 years, but this may be open wider at a later stage) Email: [email protected] Take care
  27. Community Post
    Our 'Speaking up for patient safety' interview series highlights some of the issues that healthcare staff who raise concerns about patient safety face. If you have spoken up about unsafe care, have been a whistleblower, or have been put off raising concerns, we would like to invite you to share your reflections. What encouraged or discouraged you from raising your concerns? What support did you receive from your employer or elsewhere, and how helpful was it? How can organisations make it safer for staff to speak up when they see something that worries them? What changes need to be made to the legal system and other national systems to improve the situation for staff who speak up? Read information about organisations that offer support and guidance for staff about speaking up and whistleblowing on the hub.
  28. Community Post
    We are looking for someone with expertise in women's health to join our team of volunteer Topic leaders. Our topic leaders are an integral part of ensuring the value of content on the hub. We want to ensure that quality content is published on the hub and that we have credible experts in specific topic areas to: contribute personal blogs sharing expertise and insights advise us on the validity of posted content suggest areas to develop content in lead and respond to discussions within our communities. If you'd like an informal chat about the role, you can contact the hub team at [email protected].
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