This should NOT be happening any more!!!
People ask me why I do so much advocacy work on top of my day job, parenting, and trying to have a life...
THIS, this is #WHY!
I have been sitting on this post for over a week now.
I've never been less proud to work for the NHS that I am right now, and that say A LOT!!!
I've been wondering, about the best way to express my anxiety, worry, fear and distress at the treatment and lack of care, people with sickle cell and other red cell disorders, are encountering.
I teach doctors, AHPs and others, in addition to holding information events and supporting other patients such as at the recent Red Cell Network event for children and young people with #SickleCell.
It doesn't go unnoticed that my direct posts around hashtag#SickleCell fail to get the #Engagement and #Interaction that my indirect posts do.
Are you wondering why? Good!
This is an example of the #Systematic #Failures and lack of interest around sickle cell which is abhorrent while people are STILL dying unnecessarily.
❌ WHAT SICKLE CELL PATIENTS ARE NOT ❌
- Drug seekers
- Disruptive
- Loud and obnoxious
- Non-compliant
✅ WHAT SICKLE CELL PATIENTS ARE ✅
- Desperate
- Neglected
- Rejected
- Under-treated
- Treated with contempt and judgement
- Treated with prejudice
- Othered
🛑 STOP 🛑
Take a moment to think about why despite our push to have #PatientAdvocates and patient #Experience be part of our healthcare training and despite patient #CoProduction and #CoDesign a sickle cell patient and their parent can still be told that they are "just being ANXIOUS" and then the patient dies???
Let's #DoBetter
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